My Journal

Fanconi Anaemia Camp 2009 in Australia

2009-10-05T04:04:00.000-07:00

Ok, finally, I am doing the post about FA camp in Australia that we had way back on the 5th of September. Camp went for 4 days and it was excellent. We had 4 FA adults there this year, including myself. So myself, Kelly (NZ), Sean (NZ) and Stacey (NSW). Unfortunately Janet from NSW couldn't come this time. We missed you Janet. The other adults would have loved to have met you. Last year we also had 3 FA children plus their brothers and sisters and parents. Unfortunately some of those were not able to make it due to both sickness and work committments. However, we had one FA child, Isla, from South Australia, with her 3 other siblings and her parents. We had enough people because of the family that came with the FA families and the volunteers were terrific, as per usual. We had 25 people at camp, not including the volunteers.

It was such a relaxing camp and quite a bit different to that of last year. The schedule was a lot more slow and not as tight, making it much more relaxing and less exhausting for someone like me....or anyone else who may need to be cut some slack...hehe.

I loved the atmosphere. Us adults bonded SO well and couldn't stop comparing notes and chatting to each other. The first day, Saturday the 5th September, started off with introductions and some time to chat and mingle. Then we had Dr Tom Revesz from The Women and Children's Hospital here in South Australia, come and chat with us. He is the head haematologist/oncologist there. He knows Dr Blanche Alter quite well. His session was excellent! He came and we sat around in a semi-circle and talked about our lives with FA. All the adults got to chat and the parents of the FA children as well (my parents, Kelly's mother and Isla's parents). Dr Tom was very relaxed and spoke about FA, medical problems, pyschosocial and of course, all the people involved in the extensive care of a patient with FA. He gave us an opportunity to talk about how we were all diagnosed and the challenges that we face, any concerns with our current doctors or surveillance and a lot more. Some of the session was quite emotional and I found myself in tears while chatting with him and the other people in the group. I was impressed how he handled our emotions as we chatted about it. He was very empathetic and never ignored one emotion. Everyone left the session feeling very satisfied.

Following this we had time to explore the grounds. I can't believe I never took one photo of the grounds of this BEAUTIFUL place!!! It is SO green and has forests, streams, a challenge course that is huge and more!! We are making a promotional video at the moment and the grounds can be seen clearly on this video. When it is ready to post, I will do so on here as well.

So to some photos. I apologise for the low quality. Most of these are not from my camera. The man below was Isaac's personal volunteer. He was good.......interesting personality. Hehe. Isaac liked to ride on his back as if he was a horse. Now these photos are SO out of order because I was tired while uploading them. Below is my newest niece, Elizabeth, and her volunteer (one of them....hehe). I thought this was a cute photo :-)

Haha....this is one of the last nights. I sang "His Eye is on the Sparrow". The one you hear in Sister Act. I plan on posting the video on here so you can hear me sing. I did a good job considering I had laryngitis at camp. It was really quite a challenge to sing. I wanted to share about How God watches over the small sparrow. If He cares for such small sparrow, then think about how much more God cares for us as human beings. We are all special and no matter what you are going through (FA etc), He will always be there for us, loving us and caring for us.

Hehehe.....this is Stacey and I dressed up as Super Seaweed and Super Sparkle. I am in the green. I was Super Seaweed and she was Super Sparkle. We were obviously super heroes and for our talent, we rescued 3 children from the river who were drowning. We made up a little script. Hehe. It was fun. This was the talent night. Stacey stayed with Alan and I the night before camp started. We had so much fun and I felt like she was my sister! Awesome person!!!

Sorry about the dark photo. This is Sean (FA - 25), Kelly (FA - approx 26) and a volunteer singing "Stand by Me" at the talent night. Sorry if I got your ages wrong by a year or so guys! Kelly and Sean are both FA adults from NZ. It was awesome to meet you guys and I can't wait to see you both again!

At camp we have what we call "affirmation bags". Eddie Rice Camps puts our camp on for FA Australia just like Camp Sunshine does for FARF. They do affirmation bags. Each person makes their own and decorates it. They sit at this table throughout camp and the idea is that when you have some time during camp, to sit down and write out nice things that you can think about certain people and pop it in their bag. Some people make pictures, do up really nice paper or just write on a plain piece of paper. You can do whatever you like, as long as it affirms the person. The volunteers also join in on this. You are not allowed to look in your bag while at camp. After camp is over, the bag is posted out to you and you get to read what wonderful people have said about you. It is SO uplifting!!!!

Volunteers having fun :-)

Both adults and children just doing their own thing :-)

We had a wonderful chef while we were there. The food was both yummy and healthy!

Dinner time!!!! We also had nice sweets, scones etc!

On the second night of camp, I think......hmmm....we had a thanksgiving dinner. It was also Father's Day this day. The volunteers sent us all out and we were not allowed in this room. When we came back in it was beautifully set up. There were crayons on the table so you could draw on the table cloth. There were flowers and beautiful glasses....it was lovely!!! It was such a treat. It was something that didn't happen last camp :-)

I can't remember which day this was but some of us adults had a game at bowling. Like carpet bowls but called something else. Sean, Stacey and I all had a go against my father and some of the volunteers. If I recall, Stacey was the best, but I came close behind.....hehe

While we were doing other things, the kids made play dough from scratch and added food dye. They made special things and had a wonderful time! This is a picture of my other niece, Eliana :-)

Isaac and a friend making and playing with the play dough :-)

Hehe...it was a messy affair, this play dough!

There is a huge challeng course which is VERY challenging and took a couple of hours for people to complete. In fact, they were gone all afternoon trying to complete it. I couldn't go on it because I had had the surgery. I remember going on it as a child, though, at a church camp. I remember going across this stream and falling in the water. It is very challenging. One of the volunteers didn't make it and dropped in the water! Sean, from NZ with FA, is VERY adventurous! Go Sean! Stacey too......what a woman!!!! Even little Isla with FA (7 years approx) went on the course and many other people as well. Practically everyone on camp except a handful of us :-) There were other kids to be looked after and other things to do in the mean time. It was all fun.

Just a part of the challenge course :-)

Stacey (FA, NSW) living dangerously....hehe

Helping the kids up a part of the course.

Sean (FA, NZ) courageously pressing on......Go Sean!!!!

We had a person come from Animal Kapers who did a presentation for all of us. He brought a variety of animals with him and talked about them and let us all have a hold during his talk. Amongst these animals/reptiles was a snake, sleepy lizard, rabbit, possum type thing (Stacey remind me???), a huge big bird (seen at the beginning with Isaac's volunteer) and other animals which I cannot seem to remember for the life of me!!! Ahhhh......hehe Oh yes, a turtle, a frog....here is Sean (FA) holding a turtle. The kids and adults really enjoyed this activity. You can see all 3 FA adults in this picture from left to right: Kelly (NZ), Sean (NZ) and Stacey (NSW).

Oh we also had a makeup session for anyone who wanted........you could just choose to have your make up done if you wanted. Stacey, gal, you looked SO gorgeous after having your hair straightened and your make up done!

Ah yes, our group shot at the end of camp! I think it is quite nice :-) Of course, our little banner looks cute. You paint things on there and sign your name.

Oh back to the animal kaper session. These are 2 possum thingies. Squirrel gliders......yes, that is what they are. Is that right, Stacey? They were so cute. We all got to hold them and feed them with the syringes. It was exciting for the adults and the kids. I LOVED feeding them. Here is Isaac having a hold. He fed them. I really enjoyed the animal kaper session.

Alan and one of the BEST volunteers. She was at camp last year as well.

Here is a photo of us FA girls. Stacey (NSW), Kelly (NZ) and me, Charisse (South Australia)

Kelly (FA, NZ) and myself. We have known each other via internet for ages but this is the first time we have ever met in person! Love ya, Kelly :-)

Boys like to play with strollers too....hehe

Me with one of our other most favourite volunteers. He was also with us last year :-)

Kelly (FA. NZ) and her mother, Jan, straightening Kelly's hair. Kelly is an amazing fighter. She had a transplant when she was little and has made it this far, constantly fighting other battles. You keep at it gal!!! Jan is an amazing person and mother who loves Kelly so much. I thoroughly enjoyed chatting with Jan. Jan, you are a beautiful person and thank you so much for coming to camp to be with us all.

We had some wonderful moments of relaxation on camp. I haven't posted any photos of us FA adults having hand and foot massages, but even the guys got into it. Sean looks so relaxed in one photo. Us girls lined up for ours and it was SO relaxing!!!! Here you can see the kids having some time of relaxation and massage as well. Isla, FA child, really LOVED her massage. When Stacey and I were having ours she came and hung out with us. She is SO sweet. She has a lovely smile and personality. I have some more pictures that we are waiting for from a professional photographer who visited camp. We have one with all the FA girls....the adults and Isla. She so wanted to hang out with us. So sweet. She is such a gem!

We ate the biggest cookies! Lol!!! Isaac can never turn down a nice, big cookie!

Back to the animal kaper's session here. I am holding a rabbit. There is my sister on the left of me :-) I love you, Sweetness!

This is blurry. I screamed when trying to hold the snake but I managed to hold the frog...hehe

Isaac and Isla (FA child) both held the snake at separate times. SO BRAVE!!!! Isaac LOVED it! He wanted to stroke it while Isla held the snake. The man also talked about snake safety and what to do if you come across a snake.

I like this photo of us FA adults. We all felt really close in friendship. It was so emotional when we had to leave. Sean on the left, Kelly, Stacey and I.

While we were having some professional photos outside, a HUGE koala just walked across the car park! It was a hit for our New Zealanders. I pointed it out and a whole group of people followed the koala up the street/hill. He found a new tree to sit in but that was an adventure. I should have some other photos of the grounds when these other photos are sent to us.

It was an excellent camp. On reflection there are always things we can improve. Next year we hope more Australian families will join us and may be some more New Zealanders. I know we will see Sean and Kelly again. I can't wait to see Stacey again. I cannot believe how similar our skin is and our issues are. I cannot believe how understanding the FA adults are. I suddenly don't feel alone. *sigh* I miss them and want to be with them again.

So I would like to post more when I get more. I would like to post me singing as well.

Since camp, we have been on family holiday as well. We have many photos of that too. Isaac is on school holidays. We got back Saturday night and have pictures from being here at home, having adventures....so I would like to post all that too. This post was a challenge. Alan has been using my laptop because his crashed. We finally got that back and I can now access my laptop longer. What a relief!

I have started with a naturopath. I am working on getting rid of more toxins present in my environment and food. She has another FA patient and has seen this person's bone marrow start producing cells more since they have started doing all this. So....why not have a go??? She doesn't mess with my medical treatment.

IVIG infusion this Friday. *sigh* To be honest. I had to get away on holiday because I was too overwhelmed by doctor's appointments and treatments. Now I am back, it starts all over again and I feel like I want to scream!!!! Anyway, life goes on.

I have enjoyed the last week or two though.

Ok, until I post again.

Love Charisse

Understanding the Heart..........

2009-09-02T05:36:00.000-07:00

Today was a very emotional day. I have done some serious thinking today. My close friend's mother passed away last Friday due to some medical issues. She wasn't that old at all. I do feel such an affection for my close friend's mother because she was the one who "mothered" me through a certain time of my life while I spent time "playing" or "hanging" out at their house with my close friend. She was and is an awesome woman of God. Such an inspiration!

I attended her funeral today. Alan and I were there from 1 pm to about 4pm. I really loved what the Pastor had to say about death and life in the eyes of someone who knows Jesus and loves Jesus. It really spoke to my heart. This earth is only temporary. As a born again Christian, I know that. The Bible clearly tells us that. We take this life on earth so seriously....and so we should. However, when you sit and hear the wonderful news of the Gospel of Jesus and how He is waiting for us when we leave this earth, something stirs inside of you.

I love the fact that, as a Christian, death is not the end for us, but only the beginning of something new and exciting. While we, naturally, mourn the passing of others here in our world, we know that they are free of pain and rejoicing in the Lord's presence. What an amazing thing. No pain, only joy. No "boiling brain".....which is how I feel when I am stressed and worried about the things in this world. No physical suffering. Only joy and peace. These things are what you have when you know Jesus. Amazing really. I have done a lot of thinking today.

Yesterday was my brother's birthday. He died a month after his bone marrow transplant in 1994. He had Fanconi Anaemia. It felt like my whole world had ended when he died. I knew the promises of God, but I was devastated and with having Fanconi Anaemia myself, I withdrew and became depressed. I have worked through a lot of this now but I still feel emotional when thinking about Shannon, my brother.

After the funeral today, we bought some flowers and headed to the cemetary to honour Shannon for his birthday yesterday. Isaac was with us because it was after school. As I was standing and pondering at his grave, I found myself trying to understand my heart. I had been thinking about how my friend's mother had passed away, about her life and how much she loved....should I say loves Jesus. I was thinking about how happy she is right now with Jesus, experiencing no pain and her reward in Christ. I longed for that too......I longed for it. I thought about how Shannon and her would be there together because Shannon loved (loves) Jesus too. I thought about how care free they would feel. We can't even imagine what it would be like to be with Jesus and in Heaven. It is hard to conceive while here on Earth but it must be amazing.

I thought about Shannon's death and the sadness it brought us as a family here on earth. Then I thought about his joy. I reflected on my own life here on earth with having Fanconi Anaemia. The blood and bone marrow issues. The cancers and operations I have been through and the challenges that are still at my door step. I thought about how it can be very stressful and emotional and overwhelming at many times. I then marvelled at how I fight and fight to stay here on earth with my family. Despite all the pain, I have such an urge to fight. I don't want to go from my Isaac and my Alan. I want to grow old with them and see Isaac marry and have children. Yet, I have such a longing to experience the joy that Shannon and my friend's mother are enjoying. To be free of that pain. I am sure that God gives me the desire to press on here on earth. What a strange feeling to want to be with Jesus, free from pain, yet be with your physical family here and grow old with them. The matters of the heart are interesting. The matters of this walk in life are interesting. Sometimes I don't understand the heart and the desires running through it.

I know one thing though.....I long to be free of Fanconi Anaemia. Today has brought forth many thoughts and has caused me to ponder a lot. We fear death but why........????? It is God given to fight for life. It is also God given to be able to go and live with Him. I don't know how to explain it. I am deep in thought.

Below is a photo of Isaac and I looking/pondering at Shannon's grave. I had to laugh at Isaac because every time he saw a grave he would say, "Mum, another person has died here!!" I kept saying to him that everyone here has died. What a sweet child he is.

Isaac at Uncle Shannon's grave. He knows all about Shannon's story.

Shannon's gravestone. Looking pretty I think.

Well, praise God we have the victory now and in the end over death :-) I don't know what I would do if I didn't have Jesus. This walk in life would be incredibly hard. I am blessed that I have something to look forward to after this life as well. When you have a disease that can kill, you find yourself thinking about that quite a lot.

My sweet friend, from today, we are praying for you and your family.

My FA family......ones suffering grief right now, we are praying for you.

Lots of love,

Charisse

Glorious Massage!

2009-08-30T21:31:00.000-07:00

Hello All,

I had IVIG infusion on Friday which went ok. I was in the new building. I was quite worried about my IV access as my normal place didn't work and I was heaps worried they wouldn't find anywhere else. However, they did! I congratulated the nurse lots of times.

My possy turned up. I hadn't seen some friends at the cancer center in a while. Our days and weeks had been messed up but they were there this time! We sat together and had a hot drink together. It was good.

My sister in law was with me. It was really nice to catch up :-)

After my infusion, we went downstairs and I was offered an oncology massage for free! I had no idea they had a massage therapist there. I was worried about being bruised but because it was an oncology massage, it was very gentle and relaxing. I ended up having one for 45 mins! Ha! Thanks for letting me have a massage, Angela! You were very patient.

I am still excited about FA camp which starts this Saturday. I can't wait to meet these other FA adults :-)

My wound is heaps better. The pain is heaps decreased. The infection gone. I am now praying my counts will go up. I find it frightening when they are down.

Isaac is getting better. He had bronchitis for a while there and was home for almost 2 weeks with me. He also fell in the bath and hit his head badly. I wrote that on facebook but didn't write that here. He dented his skull and had to have a CT scan to check it wasn't fractured. It wasn't, praise God. He just dented the soft part of the skull and it bounced back out not long after the fall. Isaac is on olive leaf tonic and vit B and C to help build up his immunity. He has struggled a bit in the last month or two. The doctors said he was run down. He now just has a cough that is hanging on. I am praying it will go completely, the poor love.

Isaac LOVES FA camp and is looking forward to it, just like we are.

Well, I felt terrible yesterday from infusion. I had fainting spells and felt nauseous. I had to have an anti-emetic to stop me throwing up. I felt so weird that I didn't fall asleep til 2.30 am last night. I feel a little better today but pretty washed out. I got up at 1030am so hopefully tonight I will sleep better and have no weird infusion reaction.

Ok, got to eat :-)
Love Charisse

Random Stuff/Photos/Medical update

2009-08-24T04:32:00.000-07:00

Hello All,
It has been a little while since I updated. As per usual, medical dramas are always exciting. My wound from the operation to remove the vulval cancer is taking forever to heal! I have seen the surgeon every Friday. First, the swelling was just crazy that there was a lot of pain and fluid coming out. Then the stitches were pulled out as a result of the swelling so the wound started to gape a bit but not too badly. Then some weird blisters appeared along with an excess of granulation tissue and this provided me with horrible pain. I had to up my pain relief. Then, suddenly it looked infected a week later with more pain again. Off to the surgeon and so put on antibiotics. At first they considered taking me back into surgery to clean the wound up which is still gaping a bit from the stitches being pulled from the swelling. However, my blood counts came back as ALL low! Crazy! Even counts that are usually well within range were quite under the range which made me panic and have many emotional moments. Haemaglobin is never low and was low and the level that shows how stressed your marrow is, is usually in range and is way up! So I think it is safe to say my body and marrow is under a bit of stress with trying to heal this wound! So they didn't want to take me into surgery with counts like this. We went with the antibiotic course and salt baths and HEAPS of rest *sigh* I am SICK of rest. I haven't driven in at least 6 weeks. I have been very teary as well. The surgeon also thinks I am having a reaction to the stitches that are left in. However, it is too painful to snip them and they don't want to touch down there with my counts. So we are waiting. I just finished the antibiotics and I think it is feeling a bit better but I need to give it more time. I now have local anaesthetic that I can put on to help with the pain as well as the oral pain relief.

Other medical updates. I went to the ENT to have my mouth checked. After the op, I was quite stressed and tired and got many ulcers in my mouth. They have started to clear up but we are keeping an eye on it all. I also have a huge ulcer on my tongue right now and some white areas which have developed while I have been stressed. He also discovered a strange lump inside my right ear. He thinks it needs to be surgically taken off and could be a cyst or a basal cell carcinoma. These cancers are easy to remove if caught early. They are not known for spreading. Boy, Australian sun is a killer. I must remember not to forget my ears and put sunscreen on the. Honestly, I cover myself in sunscreen and wear a hat. From all these cancers (ones on the head), you would think I deliberately expose myself to the sun. Believe me, I don't! I hope it is JUST a cyst. I have to see the ENT again in 3 weeks to see if this ulcer and white spots on my tongue, go away. If not, biopsies and this lump will be taken off together in surgery.

I saw a pyschologist yesterday. It was good. I have been teary every day since the operation to take out the vulval cancer. I have found this rather traumatic and am still struggling in the recovery period. I had a good chat with this pyschologist. She deals with patients going into transplant and who have experienced cancer. I will be working through some more issues that have come up as a result of my brother's death in 1994 and doing some visual exposure in the transplant unit and haematology wards to help my anxiety. We will be working through a LOT! I haven't written all that here though. I will see this lady every 2 to 3 weeks. I am aware that this could be challenging but am eager. I also feel like I need the general emotional support right now.

Enough of that though. I wanted to share some fun photos with you. It has been winter here but we had a few days of warmer weather and sunshine. I thought I would put some photos up of Isaac and I in the backyard. Remember Bella, Isaac's kitten? She is 6 months now and just got desexed and is allowed to explore the backyard with us around. The other cat you will see is our 6 year old cat, Matilda :-) Below is Isaac and Bella.
Below is a picture of myself enjoying the sunshine, watching Isaac and Alan working in the yard. See......I DO wear a hat....and I DO have plenty of sunscreen on...even on my hands!

Matilda on the left, Bella on the right :-)

6 weeks ago, before my surgery and in the school holidays, Alan, Isaac and I went to a place called Victor Habour. You can travel over to an island called Granite Island on a carriage pulled by a draft horse. There are fairy penguins over there. Beautiful scenery. We went over and stayed for the night tour so we could see the penguins. It was a great family day.

This is us leaving the main land, going over the long bridge, in the carriage being pulled by the horse.

I took a picture of the water while driving. It was very peaceful :-)

Isaac enoying the ride and the ocean scenery :-)

Scenery. Is that the main land? Hehe....

The rocks on the other side. Getting closer....

Here we are on the island and we had enough time to walk around the whole island before dark. It was cold so we had our scarves, beanies, gloves asnd jackets on. We started by walking up all these stairs to the top of the side of the island and then followed dirt tracks from there.

Haha! My hair looks crazily fluffy and out there! It was cold and windy but beautiful! Isaac and I stopping to pose while climbing.

The view half way up the stairs :-)

I love this rock formation. It looks like a hand! We were walking around the side of the island, safely of course, and saw this. Fascinating!

Walking along small trails. Hold on Isaac. It is a long way to tumble and roll down!

Big boulder down by the water!

Isaac and I on a rock....hehe

Walking around the other side of the island. The sun is going down. Pretty.....

Over half way around now. An old, huge tree........fascinating

Coming back towards the front of the island, close to where the bridge is back to the main land. Pretty.

The bridge we travelled over from the main land, on the carriage pulled by the horse :-)

We walked back over the bridge after the penguine tour. We got the penguine tour on video and didn't have any pictures. I think this photo is nice.

Can you believe it? It is approaching 9.30pm and we still hadn't been to the playground which we promised Isaac could do. It had been a big day of fun and was the school holidays, so we stayed later to allow Isaac a bit of a play. Then we ventured home on our 1.5 to 2 hour trip home. Isaac fell asleep in the car :-)

So that was one outing during the holidays. Another day we went to the Thomas the Tank Engine Fair which was at the Railway Museum. There are also real old steam trains kept there and that was the highlight of Isaac's day. He loves steam trains so here are a few pictures of Isaac hanging out with those huge trains :-)

Isaac pretending to be the engine driver.....hehe

I like this photo. What a cool kid! What a huge steam train!
Some other holiday fun at the local park. Isaac likes to make up a challenge course and daddy (Alan) must do whatever Isaac does....hehe

Plenty of challenges.

Go, Alan, GO!!!!

Happy Isaac!

So there are some updated photos of our family. It is late and I must get into bed. We have FA camp here in Australia in less than 2 weeks. I will get to meet Kelly and Janet Turner from the FA e-group from New Zealand! I am SO excited! It should be fun. Please pray I feel much better with this wound and that my counts have improved. I must go to bed!

Love you all,

Charisse

Follow Up Surgeon's Appointment

2009-08-07T01:39:00.000-07:00

Hello All,

I had another appointment with the surgeon today to check up on the healing of the wound. The swelling has come down significantly. There is still a good amount of swelling in different areas. It still doesn't feel normal and she told me the areas that were still swollen.

It seems that the abnormal, crazy swelling that i had last week caused a few stitches to be pulled. She said the wound is looking ok, still swollen but definitely improving. She said that the wound will take a little longer to heal with the few stitches that have been pulled by the swelling but that there is enough stitching in place to hold it. She said that it will heal much better once the rest of the swelling goes down because the swelling is still pulling at it. I need to rest up and not return to work. It could be another 6 or so weeks until it feels better and is healed....or a little longer depending on how quickly the swelling goes down.

I am walking now rather than waddling and my pain relief has been decreased. I know it will continue to improve.

Well, dinner is ready! Everyone at camp sunshine, I a lot of fun!! I wish I was there :-)

Love Charisse

Recovery will be a lot longer than I thought.......

2009-08-03T19:20:00.000-07:00

Hello All,
I thought I would do an update on how I am recovering.
Well, Monday morning last week I woke up groaning in pain! It was SO bad. I wanted to cry and I feared that I had come home to early. I wanted one of those injections so badly. At that point I realised that recovery was gonna take a lot longer than I thought it would.

I felt like I had a tennis ball or more between my legs! Haha.....trying to be discreet and all. We ended up contacting the surgeon because the pain was bad and the swelling quite bad too. She was concerned that I might have a haematoma so she asked me to come in during the next couple of days.

I went in to see her and she checked it all out and agreed that I was more swollen than they would have expected but didn't have any reason for it except that bodies are individual and can respond differently to surgical procedures as we all know too well. I started taking more pain relief for the pain which caused me to forget things during the week but at least I was able to get the pain under control without needing to go back to the hospital. Dr Grant said that there was no haematoma and she was very relieved. I have had some stuff coming out of the wound which is a reddish colour.....as well as other colours and I was concerned about bleeding and my monthly time was winding up and I knew this was coming from the incision which is heaps bigger than the other one. Because my marrow was suppressed from being unwell weeks ago I was concerned that the platelets had dropped again but the surgeon put my mind at ease and said that this "bleeding" was not platelet bleeding but stuff that comes normally when a wound is healing and that people with high platelets have this as well. It is the healing process. So I have not felt as concerned as I was. My nursing mind and experience acknowledges this as well but when it is yourself you feel more concerned.

So I have been doing ice packs, pain relief and I have now started salt baths to help the healing, clean the area, decrease pain and swelling. The swelling gas come down half way but is still quite swollen. It is annoying and I can't wait to be normal. The incisions are stinging and when the pain relief wears off I feel like knives are cutting into me. It is horrible. That is what the C-section felt like when pain relief wore off. I haven't been able to walk around...I have waddled VERY slowly when walking. I seem to be able to speed up a little now but not for long. I have been either lying in bed on my back or sides with a pillow between my legs. I sit on the recliner chair with my egg shells (foam) that my sister has lent me from when she had her babies. It takes me forever to get in the shower in the mornings. For example, it is 12 midday now and I still need to shower. The effort is just so much and it hurts to get ready....but the feeling of being clean is nice. My doctor said that it will be "time" that heals....as we know. She cannot say how long it will be. Just time. So I won't be rushing back to work any time soon. 6 weeks is an average time for big surgical procedures. So that's that.

Other news. I have terrible ulcers in my mouth, by the front, down the bottom, on the left. Terrible!! That started with the stress of the operation. I went to the ENT yesterday for my usual check. He looked and said it was bad. He wants to give it 4 weeks to heal and then see him again. If it is still there, we will biopsy to check......*sigh*.......I hope they heal. We will also do the 6 monthly scope then. I have been reading the new FA handbook with all the details about head and neck cancer and gynae stuff and I am so totally overwhelmed. The ENT felt so bad for me. I know that my doctors are getting a jolt from the last 2 diagnosis......the head cancer last year and the gynae......it is keeping them on their toes but they seem to be reacting emotionally a little as well. I can see they care deeply. The gynae surgeon and her secretary told Alan before my surgery that they were "shaken" by the cancer diagnosis. They had been asking how I was coping with it and when Alan told them I was shaken, she said, "we were both shaken too". Many of the doctors I deal with here in Adelaide don't have FA patients. We are VERY few. I am paving the way. Even the top doctors have never had an FA patient. I am proud to say I am paving the way for other FA adult patients. These doctors are being well educated and trained......hehe.....by me.....and Alan........hehehehe. They are becoming quite diligent. They are now doing the surveillance without me asking and being very good. They are thinking about it. I feel good about my doctors at the moment.

Other news. Isaac is doing well. His teacher rang me on the phone last night and told me how well he is doing with his maths at school now. This was something Isaac was struggling with and I have been "tuitoring" Isaac at home with. We do fun games with his lego as counters. We do sums etc. Isaac has his own black board at home and he likes to play teachers and students. It helps make learning fun. It was encouraging to hear that my tuitoring has been helping him significantly.

Anyway, I need to go and get myself organised. My mum is now here to visit with me.

Bless you all,
Charisse

Bone marrow results

2009-07-29T03:09:00.000-07:00

Hi All,

i had my haem/oncol appointment this afternoon and got the results from my bone marrow biopsy. My blast count was recorded at 3 to 4 %!!!!! YES!!!! Last time they recorded it at 6 to 7%!! Hehe, I know it doesn't always make sense but it seems God is answering my prayers.....at least with this one. It was so nice to feel relief. I know it is still higher than 1 to 2% and I know I still have clones and a "messy marrow" but that was just something that encouraged me.

I live in fear of a high blast count with my history. God is good though. I really do believe that God can do anything and that prayer works even though I feel overwhelmed by multiple things right now :-)

If you want to know what has been going on lately, please also refer to the journal entry before as I updated that only earlier on in the day.
Thanks for your support!
Love Charisse

Pathology results and recovering

2009-07-28T20:57:00.000-07:00

Hi All,

well it has been a rough week. I have been so swollen and in extreme pain. I have upped my pain relief with the surgeon's knowledge and it has helped greatly but I can't walk around or sit. I have to be laid back in a chair, or lying down otherwise the pressure and pain are just too much.

Tomorrow I will see my gynae to check the site. She is worried that there could be some wound break down because of how bad the swelling it. I have had a little blood loss but it is only a tiny bit. Some could be left over from my period anyway.

I got some path results. They have removed all the pre-cancerous cells......in fact, what they took out showed no pre-cancerous cells or cancer. SO now there is most definitely a clear margin. They took 4 biopsies and one or two of them showed viral changes. We are looking into this at the moment.

I also got the results back from my head biopsy a few weeks ago which I forgot about. That too was a pre-cancerous lesion type thing on my head and it is my understanding that they cut it all out with the biopsy. SO......that was on the other side from the head cancer I had last year. Luckily I was being cautious hey! I wear a hat all the time now. Even in winter, I wear the beanies when outside. I never used to be stupid in the sun but I suppose there may have been times when I didn't wear a hat. With FA, I am discovering that you just can't take any chances. I have worn hats as long as I can remember so may be it was when I was younger. It scares me though!

Ok, I have to endure a shower....ouch! I have a haem/oncol appointment this afternoon.

Love Charisse

Post Surgery

2009-07-26T01:04:00.000-07:00

Hello People,
I got home this afternoon. I had the gynae surgery on Friday. They re-excised where the cancer was to get a clearer margin with the pre-cancerous cells. They also did a vulvoscopy and puncture biopsied 4 other places.

I discovered that my platelets had done a drop before the surgery due to me having a flu type bug 4 weeks before. I did have signs of this and was worried so I had the appropriate platelet support, especially since this surgery was going to be quite a wide incision with biopsies.

6 weeks ago when I had the original cancer cut out I had hardly any pain and was just in for the day. I also experienced no bruising at all last time. This time was different. I have some bruising and a wider cut plus 4 biopsies. They injected adrenaline into the wound which made me swell very badly. The adrenaline was to constrict the blood vessels to help decrease any bleeding. They also injected heaps of local so when I woke I wasn't too bad with pain. The surgeon said that I didn't bleed bad with the cutting but when they went to stitch me up, I started to bleed with the stitches being pulled through.....so not bad when cutting but sensitive while stitching....... However, I still didn't bleed too much and had very minimal ooze following the surgery. In fact, VERY minimal. I was told that I was bleeding like someone who had normal platelet count. However, obviously they still are very careful because my count is generally lower and a low neutrophil count can make bleeding and healing more of an issue. My neutrophils were still normal for me but low for someone who is normal. I had IV antibiotics given while in surgery.
I am sure you will love this info but it is actually that time of the month for me so it has been hard to tell where bleeding is coming from but we are pretty most certain that it is not coming from the incisions. As I mentioned before, the surgeon is really happy with me and continues to marvel with how well my body copes with surgery.

They gave me a good amount of pain relief in recovery but because the incision had local anaesthetic all injected in and around it, it wasn't all that bad. I was thinking how it didn't hurt much for being a wide incision and was quite bright when I woke up. I continued to feel bright down on the ward and was up and about to the bathroom and so on. I had some visitors! Thanks for coming to see me Mum, Denise and Alex, Darren and Angela and for the phone calls from my sister, a work mate and sms's from many people :-) Much appreciated. It all helped keep my spirits high :-) I appreciate the people who rang and couldn't come and see me because they were sick like dad.

However, that night, when the local anaesthetic wore off, boy was I in heaps of pain! It was crazy! I was so surprised! I was surprised because last time I had hardly any pain and went home the same day. Of course, I had to keep reminding myself I had more done this time. Alan oftens stays overnight with me when I have things done but this time he was going home to be with Isaac. Mum took Isaac and bed him down at her house until Alan was ready to pick him up later. Due to my distress, Alan didn't leave me til 11pm. I was just quite distressed and sore. Isaac has been sick so Alan needed to go to him. So Alan spoke to the night nurse about my anxiety and he went to get Isaac.

The pain just got out of control from there on. I ended up having 2 injections of fentanyl and panadeine forte and at some point I also had a good amount of tramadol. In the end, as it got closer to 2.20am, the night nurse came in my room, while I was still crying, and stroked my head and hand. She held my hand and I eventually fell asleep. I thought that was so sweet of the nurse. I got so distressed. I was so drugged up and had also had IVIG infusion after the surgery. IVIG infusion changes my perception as well and I don't cope emotionally as well as I do without it. I was panicked about everything, including dying from FA and pre-leukaemia and cancers and low platelets and all sorts. I remember raving on and on while the nurse stroked my head and hand! I was distressed. I take my hat off to her for being so quiet and controlled and reassuring!

Anyway, I didn't end up going home the next day due to needing more pain relief. I just rested. I had a better night's sleep the second night and managed without the fentanyl injections. I am still very sore but have managed to come home. I think recovery will take a little longer from this surgery than 6 weeks ago. Please pray my marrow recovers ok from the flu bug a few weeks ago. That always worries me.

I will find out the pathology results from the surgery and biopsies on Tuesday. Please pray that will be ok.

Pray that I don't feel too bad from the IVIG as well. On Wednesday I find out my bone marrow biopsy results as well. That is always such a huge, emotional thing.

Did I tell you all that Alan has now got a new job??? He has had one for 2 weeks with a paving franchise. He does like site management or something. Administration.....his brother is expanding his business and needed someone to take a certain position and Alan got it. Alan works 3 days a week like he was before in business management. Alan also got into university and this week was his first week doing his Bachelor of Environmental Science. He is doing external study full time. So it looks like things are looking up for us in the job area.

Oh, yes! Our house is now under contract! We got an offer on our house and the call off period has finished. Finally, we are selling our house! Praise the Lord! Things are coming under control :-)

Anyway, pray for Isaac and Alan. Isaac has been unwell with a fever, cough, runny nose, not much appetite and very flat. He is now on antibiotics but it is always a worry if I catch what he has, especially since my marrow is a bit suppressed...more than usual right now! Alan is not feeling well either. He is feeling flat and coughing a bit as well. I just cannot catch this right now! Pray for protection! Also, it is not nice to see them both sick :-(

I have some time off work while I get better.

Ok, that's all for my update! Thanks for supporting me and encouraging me. Will post again soon. I have some school holiday updates that I want to do....pictures etc. I haven't gotten around to it yet.

Lots of love,
Charisse

Lost His First Tooth!

2009-06-30T04:30:00.000-07:00

Hello All,
silly computer! Ahhhh, I can't get this photo to move down! Usually I can write on top of this photo but every time I try, it deletes it. I just don't understand.....oh well.

On Monday, yesterday, Isaac lost his very first baby tooth! What a big boy! I was wondering when it was going to start. Isaac is 6 1/2 years old. We had no idea that his tooth was even wiggly! It was one of the bottom, front teeth. Isaac says the other one is slightly wiggly as well. He said that it just fell out while he was on the mat at school! Hehe.

He was happy to receive his 50 cents for his tooth today. Isaac actually knows the tooth fairy is not real. However, it is still exciting for him to get money. He put his tooth in a glass with water and had the 50 cent piece in there this morning and I had taken his tooth and put it somewhere safe. I couldn't bear to throw it right now.....my baby's tooth. He is gonna look so grown up once those adult teeth come through! Above there is a photo of him with his tooth gone. What a sweetie!

Anyway, just wanted to update on that briefy......something other than medical :-)

Below: Isaac wanted me to take a photo of him on the couch, covered by this blanket that nanna and others made for him. He wanted it as his background. It is lovely, isn't it?

Can you see how big my boy is getting?? Anyway, I need to get to bed! I am proud of Isaac.

Love Charisse

CT Scan and Oncologist appointment

2009-06-23T23:31:00.000-07:00

Hello People,

I had the CT scan on Friday last week and I got the results today. The good news is that the CT scan shows no inflammation in the lymph nodes or glands in the abdomen or the groin. So no evidence that the cancer has spread. Whoo Hoo!!!

However, I thought I would feel estatic after hearing this news. I was incredibly relieved but I still feel SO down. The oncologist was extremely nice. We had a good discussion. He had read the appropriate parts of the FA handbook and had my report from the cancer that had been removed.

He told me that the cancer was 1.2 mm deep which I knew. Apparently there is not really a chance of the cancer microscopicly breaking off into the lymph nodes when it is only 1mm deep. Once it gets over that, there is an approx 7% chance that the cancer has mircroscopicly broken off and entered the lymph nodes even if the CT scan is clear. So I suppose this is why I feel so down. It is such a SMALL chance but apparently the usual is to remove the groin lymph nodes as a precautionary measure even if there is no evidence with the Scan or on examination.

However, this can cause problems in the future, especially for a young woman. Swelling of the legs and groin, drainage problems and problems with dealing with infection. There is the risk of infection when having them removed and bleeding etc.

Of course, for someone like me who has not had a transplant and does have low neutrophils and platelets, it can complicate things. In the future, with low immunity and the groin lymph nodes gone, it can cause problems for infection because I already have low immunity.

They can highlight the lymph node that the area where the cancer was drains to first and only remove that one. Of course, you could have a false positive and end up removing perfectly good lymph nodes with no cancer and then still have complications later one. *sigh*

To be honest, I am feeling rather overwhelmed right now by all of FA. Really overwhelmed. I feel quite a bit depressed and I really want to cry.

Another option, because of the risks and complications for me, is to not remove the lymph nodes at all because the risk factor of spreading is only 7% and just to monitor the lymph nodes which is what I am doing for the head cancer I had out last year.

Obviously surveillance for vulva cancer now would be 3 monthly for me. Examination of lymph nodes and the vulva +/- vulvoscopy and an ultrasound of the groin lymph nodes. This is an option I am looking at.

Lymph node removal can be rather controversal because they can remove completely healthy lymph nodes with no cancer and cause further problems by doing so......because there is no evidence but the theoretical 7% of possible spreading due to the 1.2mm deep cancer rather than 1 mm.

Anyway, I am not fond of causing myself more problems. I am also not fond of having the cancer spread. If it was more like 30% or 50% or 90%, I would obviously have to be more drastic involving the lymph nodes but with 7% I am not too sure and I don't want to make the wrong decision!!!!! Decisions are CRAZY!!!

I have a gut feeling that it is not right to remove the lymph nodes for me and I should just have agressive surveillance like what I am doing with my head........although my surveillance with the gynae will be more agressive as the ultrasounds would also be done 3 monthly. My head MRI's are done annually....or was it 6 monthly....boy I can't remember.

I have given the oncologist the email of the gynae/oncol at the NIH in the States and told him I want us to work out what is best with their opinion in regards to an FA patient. I will also talk to her myself. They would see more FA patients.

As for the area that was excised. They got the full cancer out. However, there are pre-cancerous cells leading right out to the margin. So the margins were not clear and need to be. So I have to go back to surgery, have a vulvoscopy done to see if there is more dysplasia in other areas and how far it goes around the area excised already. They will remove the pre-cancerous cells left there and if there are other cells that are highlighted in different spots, they will biopsy those and we will wait for those results before cutting more *sigh* This could be rather extensive surgery. I am praying that it won't be *sigh*.

A tentative booking for surgery is the 24th July.

I have't got any bone marrow results back yet.

Anyway, I do praise God that the scans came back negative though. If they had come back positive I would be in more trouble! So even though I still feel overwhelmed and down, I have to admit, that is wonderful news and I am so grateful.

I think another part of me feels so down because if I had cut this out earlier as I thought I should...and acted on my feeling....then the cancer wouldn't be over 1mm deep and I wouldn't even have to deal with this lymph nodes stuff! *sigh*

Thanks to all your support. Thanks for praying, thanks for being there for me and thanks for your encouragement!!!

Keep praying!
Lots of love,
Charisse

CT Scan booked

2009-06-16T20:19:00.000-07:00

Hi All,

my CT scan to check my abdomen and groin area is booked for Friday afternoon this week. I spoke to my head and neck oncologist to get some background on everything since I haven't yet met the gynae oncol and I just needed to talk to someone I trusted. He was disturbed about the news. He said that the CT scan will be looking at the lymph nodes and glands in the abdomen and groin. If the abdomen shows any inflammation or swelling then it is serious business. However, if that is fine and the groin area shows swelling or inflammation, I mustn't be too upset because it could be the drainage from the surgery done recently. Therefore, they would often repeat with an ultrasound to see if it really is cancer or just swelling from the surgery. He said that the gynae oncol I am referred to is the best and was very happy to hear I would be seeing him. Him....that alone makes me nervous. I have never been good with men.....not when it comes to private stuff *sigh*

Of course, it will be looked into whether more needs to be excised to make sure there are no pre-cancerous lesions left. On top of that I am wondering whether a vulvoscopy would be good to identify any other cells rather than just guessing. I am worried there is more left because I have been uncomfortable in other areas that are not lesions and now I am panicked. At the moment, I know the extreme discomfort is from surgery. We have sent the results to Blanche Alter. I refuse to miss anything and have asked them about the vulcvoscopy as well. When I see this gynae oncologist next week I am going to be prepared. Alan is also giving him a call to talk to him about Fanconi Anaemia. I have NO idea if he has even heard of the disease. He needs his own book and to understand that we are very actively involved in my care and decisions because it is so rare and needs special attention.

My bone marrow biopsy went well yesterday. I am quite sore. It seems the more I have done, the worse the pain gets each time. I have reached number 29 or 30. I need to re-count! Crazy! I asked for a pressure bandage afterwards because I didn't want a bone bruise. I have had one of them before when my platelets were higher and it was not nice. So now that they are lower, I want to avoid it. I spent all day sitting or lying on a towel.

Anyway, I need to get going. I have a haematology appointment this afternoon booked from before. My haem doesn't know of my new news yet, unless he has already received a letter but sometimes letters can be slow.

Thanks for all your support and prayers. I greatly appreciate them and need them. Thanks for your encouragement.
Love Charisse

Pathology Results

2009-06-15T05:42:00.000-07:00

Hello All,

I am going to get straight to it. The pathology on the vulva lesion that was removed on Thursday came back as cancer. Squamous Cell Carcinoma, a typical FA cancer. They got all of it, however, pathology shows that the pre-cancerous cells led right to where they excised so more will probably have to be taken out to stop that from turning.

While only a spot of the lesion was cancerous and the rest pre-cancerous, the depth was something like 1.2mm and that is deep enough to concern them that it could have already spread into the abdominal lymph nodes and glands. I am praying this has not happened. Tomorrow we will organise a CT scan of the abdomen and lymph nodes to see if there is any spread. I have been told it is possible that I will need my lymph nodes biopsied and may be removed if there is a problem. I am booked in to see a gynaecological oncologist because this now stretches beyond the expertise of my current gynae. I am booked in to see him a week tomorrow....the 24th of June.

Yes, I feel shocked and very shaken. I was told that this lump looked like an inflammatory granuloma and not anything nasty, although we were cutting the whole thing out anyway. When I had a biopsy done on it last year it came back clear of pre-cancerous or cancerous cells. It is horrible how quickly FA can speed things along and I kick myself for not just removing the whole thing earlier. I hope nothing has spread.

When the doctor rang, my heart started to boom so loudly and my hands started to shake and for 45 mins I could not stop shaking....legs and arms and body in general. It doesn't matter how bad you know FA can be. It doesn't matter how many times I am told bad news, I never seem to get used to it and not react. This has greatly upset me and I don't know what else to do but pray and try to survive.

My surgery to remove the lesion went well. A bit of swelling even now. No bruising and no bleeding. The actual day was full of drama but the actual surgery good.

I had my infusion on Friday. I managed to convince the other hospital to keep my IV line in for infusion at another hospital. Infusion went smoothly. I gave another haematologist the new FA handbook and he asked for my autograph, full name and date! Hehe

Tomorrow is my bone marrow biopsy at 1130. I am overwhelmed by cancer issues. I have been fighting for years against pre-leukaemic changes with prayer. I feel overwhelmed in light of the new news. So please pray that my marrow will not have anything bad....I would like for it to be totally normal.

Ok, that is all I have to say.
Love you,
Charisse

Successful Conference and Bone marrow Biopsy

2009-06-08T01:13:00.000-07:00

Australian/New Zealand Paediatric Haematology/Oncology Scientific Meeting

Charisse, Dr Blanche Alter (from the USA), Alan in the Fanconi Anaemia Australia Booth at the conference.

Jordan, a Fanconi Anaemia Australia Volunteer, showing someone the New FA Handbook
Our Fanconi Anaemia Australia Camp shirts come in various colours!!! Like this nice blue?

Alan and I dressed in our cool uniform inside our booth. Notice the Fanconi Anaemia Australia posters around the booth, infront of the booth and also, the stand on the left containing FARF family newsletters, FA Couriers, FA Australia information sheets on FA and our camps as well as donation forms :-)

Our Booth!

Hello People,

well the conference was successful! We had an Fanconi Anaemia Australia Booth there and were directly across from the Leukaemia Foundation booth. As you can imagine there were lots of exhibitioners who deal with medications, chemo, nursing pumps, charities....all there with their booths. All trying to speak with the doctors and nurses etc. All trying to raise awareness of their products (if it is drug related and so on).

So we had a booth with posters of Fanconi Anaemia Australia. We had some of FARF's family newsletters and FA Courier. They were there for people to freely take. We had small fliers presenting our Fanconi Anaemia Australia Camp. We had FA information leaflets, free new FA handbooks for doctors and medical staff. We had donation facilities. We had the lot :-) It looked so good. Refer to the pictures above :-)

We were so honoured to have Dr Blanche Alter from the NIH in the United States! She plays a key role in Fanconi Anaemia research and is quite knowledgeable of the disease. While FA is still a mystery to most doctors, she is making such a great and decent effort to understand the disease and better treatment regimes are being brough in because of it. She was impressed with out booth and provided a lot of encouragement. She gave us some ideas as well in regards to communication with doctors and how to help the FA community more. We are open to learn and really appreciated her spending some time with us.

She asked me how I was going and said that she remembered me well from Camp Sunshine because of my beautiful singing! Awww.....thanks Dr Blanche Alter. That was an amazing compliment! We had a little chat about how my bone marrow is going. She was quite helpful. Later, when I wasn't there, Alan tells me that she and him had a good discussion about my health and that Blanche was very understanding and she suggested a few things which I will definitely think about.

We talked a lot with the head of haem/oncol at the women's and children's hospital. We actually deal with him a lot in regards to FA Australia and patients. He came and spoke at our camp. He introduced us to other haematologists/oncologists one which said, "Charisse Howard-Jones! I know that name anywhere! You're a legend!!! ---------- (a name) talks about you all the time!". I was honoured....hehe. I had 2 nurses also walk up to me from interstate and say how they would recognise my face anywhere. It was on the FA Australia website and it dawned on them that I was actually affected by FA. I was quite honoured then as well.

I ran into my old paediatric haematologist/oncologist. I didn't expect to. If you remember, I had to change to an adult haem/oncol because he left to fly overseas and I felt lost. It was SO nice to see him again and while I felt a bit nervous because he knows a lot about me and I hadn't seen him for a while, the conversation was pleasant and it was really nice to see him. I stand by the fact that not only is he a really good doctor, but he is a very nice person and extremely caring. I would refer many FA patients to him if I could.

So our objectives were to hand out the new FA handbooks to doctors and other medical staff, hand out leaflets about FA, make awareness of the charity Fanconi Anaemia Australia and the fact that we have a camp and make new contacts with new doctors. We acheived these objectives and a whole lot more. We found the whole thing very successful and an incredible experience.

As for news on the home front......hehe. I still have my gynae surgery this Thursday and my bone marrow biopsy is now booked for the 16th June. I am going to call tomorrow to see, if by some chance, they can throw in the bone marrow biopsy with my gynae surgery on Thursday. The Friday is IVIG infusion. A busy week. At least it is all getting over and done with. I will ask about my MRI results on Friday.

I have been working every week but I now feel exhausted. I have a head cold. That isn't helping. It has been a bit stressful as we have been under a lot of pressure financially since Alan's job was made redundant. We really need a breakthrough people. We need Alan to get a job. He has an interview this Wednesday with a job he would love. Please pray he will get it. We seriously need this. If he doesn't get a job soon and we don't recover from this blow while he has been down, there are some serious decisions that need to be made and I, honestly, am finding that very emotional on top of what I already have to deal with. I hate finance.....Money issues are always such a pressure!!!! No one should ever take money for granted!

Ok, I hope you enjoyed my update. I will hopefully update again soon after my surgery.
Lots of love,
Charisse

Exciting conference/Blanche Alter/FA Australia/medical and family update!

2009-05-29T00:38:00.000-07:00

So I haven't updated for a little while. What has been going on with us....how has life progressed?

First of all, Isaac had his bloods taken to check his clotting, CBC and red blood cell formation in his marrow. Everything came back as TOTALLY and PERFECTLY NORMAL!!!! Yay!!!! What a relief. To deal with one major health issue in the family is enough for me and I am sure for many people. To think my parents and many of you have needed to deal with FA in 2 or more of your children. I find having FA myself exhausting enough! Haha! I am SO relieved Isaac's tests came back clear. As a mother, you feel so protective of your child.

Isaac had a follow up appointment with his ENT post surgery yesterday morning and he is doing great. His airways are not obstructed anymore. He has HEAPS of air coming out his nostrils when they checked. Wonderful. He is heaps more settled at school and not tired at school anymore except for the norm. We have started to get on top of his bed wetting at night. Now that his brain can start to focus on that we may have a better time of training him. One of my dear friends has lent us a little machine that beeps when Isaac wets at night. You attach it to his undies and it has a cord that runs up the clothing with a speaker on it. When the special cord gets wet in the undies, it starts to beep and boy is it LOUD!! Haha! Isaac was dry all night until the thing went off at 0530 this morning. His undies were rather wet but only a small amount (small coin size) got on his sheet. He woke up and went to the toilet and finished his wee there. So this is the type of brain training I am talking about! We just might get somewhere now that he doesn't have sleep apnoea! Yay!

Isaac also had his flu shot today. I had to be at another appointment so Alan and Isaac went to get a shot each. I hear that Alan and Isaac talked about it heaps and Isaac was all brave until it was his turn. Alan told me he ran under the table and just started screaming! He then started screaming and crying hysterically and Alan couldn't reason with him so he had to pick him up, hold him on his lap and the doctor very quickly did the needle. I feel bad for Isaac. I used to hate having that happen to me. However, if you can't reason with the kid, what do you do? We prepare him and he openly talks about having it and being brave and what he allows. He wanted this doctor so I allowed him to have this doctor so he felt control.....but still it went bad. Shame. If I was there, I am sure I would have cried!

Yesterday I had an MRI under sedation. Routine for making sure there is no spread from the eccrine cancer I had in my head because it can spread. The MRI is also useful for checking the sinus area for cancer and other areas because FA is high risk for head and neck cancer. This scan looks at areas that the scope of an ENT cannot get to. It went well. I dozed with the IV sedation for about 2 thirds of the procedure and then, bing, I was wide awake! The beds that you lie on are quite hard and I get very sore. Where my bone marrow biopsy sites are....I get so sore I can't lay still. When I woke I was really sore and the microphone wasn't working when I tried to tell them so. I asked for them to get me out! They just said, we have to repeat that part of the scan because you are moving...from their mic. So I needed to show them that I had to talk to them and moved again. I had to move my legs! The pain was getting unbearable. Then they opened me up and said they were putting dye in my IV and the anaesthetist said he would give me more IV sedation. I was glad for that and made it through the rest of the scan. It is just over an hour long! I can ring for the results already but have decided to wait until I see the doctor in 2 weeks. I am not desperate for them. I get nervous waiting but I have so much on my plate right now. I need to focus on having all these procedures without getting emotional over results. Sometimes that is how I need to focus.

I had a dermatology appointment today. He looked at my scar on my head and thinks that the issue of the sore scar is to do with a stitch being stuck under there. For now, we will leave it. He doesn't think it is the cancer coming back. I have another small dermatitis lesion on the other side of my scalp I was worried about. He said it doesn't look nasty but he wants to biopsy it because we have learnt from the other one. We want to rule out no nasty cancers. This lesion thingy seems to be around the hair follicle. Although, it looks like some inflammation or dermatitis, we are going to rule it out. For one month, I will treat it with cream and then if it is not responding to that we will biopsy it and just check. So that is good. I am not freaking about that right now. I am comfortable with our plan.

So on the 11th June I have this lump cut out in the girly area.....ouch! Hopefully it is just an inflammatory granuloma and nothing nasty. Whatever it is, it is getting bigger and more sore and bleeding on and off! I want it out! I don't trust FA with anything strange!

I am still waiting to hear back from my haematologist to organise my date for the bone marrow biopsy! It used to be SO easy to do all this. Since I changed doctors 3 or 4 years ago to the adult one, it feels like I am forever chasing him down! It is frustrating! I need IVIG infusion, the surgery and the biopsy to be in that week because I have 2 weeks off and then I am back at work!

I finally got a letter from the pyschologist I am supposed to see for being taken through the transplant unit for emotional healing. I will see her on the 5th June. This next Friday. It is just to sit and chat with her at first, I believe. So that is now getting done.

Alan still has not got a new job. For anyone who missed all that, Alan was made redundant at work. He has now been at home for 2 weeks and has 2 promising job interviews coming up. Both will probably be next week. Please pray he will get it. We have been REALLY tight. In fact, some thing we just cannot afford and have needed to go to the bank to talk about things to help us right now. Not borrowing money but how to manage everything since the job change. Our house has not sold yet.....and we hope it will soon!

I have been working practically once a week. I just don't seem to manage more than that. I am exhausted! I will work overtime on that shift, but I don't like to do more than one a week. I certainly can't do two in a row. However, this money has been a life savour! I don't always work once a week. I am making sure I have these shifts at the moment. When I feel exhausted or tired, I still try and do the shift. I am feeling a little worn out but have enjoyed nursing more frequently and in the same area, theater recovery. I have 2 weeks off for procedures and surgeries and then I am booked back on again.

Mum and dad will be back from Africa on the 5th June. I am looking forward to seeing them.

Thank you to friends and family who have been a help and are a help while we get through this challenging time with finance and lack of job. We greatly appreciate all the support.

This next week we also have the Australian/New Zealand Haematology/Oncology conference here in Adelaide this year! Guess what???? Fanconi Anaemia Australia managed to get a grant to attend the conference and have a booth! YES!!!! FARF have sent over the FA Handbooks to give out to every medical person attending the conference. Our grant covered getting leaflets and posters and information together on FA to give to the doctors, nurses and social workers. OH and guess what else???? Blanche Alter is one of the key international speakers at this conference! Yes, that's right and we are VERY excited to be involved as Fanconi Anaemia Australia! Alan and I will be attending. Alan more than me......it goes for 3 whole days :-) On Thursday night we have the welcome, meet and greet from 6pm to 7.30pm. Alan and I will be in uniform and wandering around the doctors, introducing ourselves, making FA Australia more known to them and the disease. This is our intention. The conference will start that morning and run through to Saturday. This is a huge break for us here. We feel like we will have the chance to make a difference! A chance to help with education and awareness in regards to FA and also to the FA Australia group. They will know that we are here! All the FA handbooks arrives in the post the other week. All together it was 90kgs of books! Haha! It feels good to be doing this!!! Please pray it goes well!

So that is my exciting news.
Well, talk to you all soon!
Love Charisse

My Birthday Today!

2009-05-17T01:07:00.000-07:00

Hi All,

I turn 31 years old today. Pretty good for an FA person who has had 13 years of pre-leukaemia :-) While my birthday is definitely a time of celebration, it also is a time of sadness. Sometimes I tend to think about a lot when my birthday comes around.

However, I am actually really excited that it is my birthday and don't mind celebrating my birthday. To overcome all the bad things that FA has done in my life, I love to celebrate and be with people during my birthday because it helps me see how blessed I am to have gotten to this age and live the way I have and more.

Thank you to all who have wished me happy birthday and any presents you have given. So far, I love them all!!! Hehe

I have had a bit of a struggle this weekend. I saw a doctor on Friday and was given some news that upset my apple cart and caused my emotional rollercoaster to do more loops and all sorts. I cried a lot of that night and didn't fall asleep til around 3am. I am not going to share. Some things are too close to my heart. Sat I slept in til 1230pm because of my late settle the night before. I was so down and the tears were coming at intervals throughout Saturday that Alan decided we would go to the Beach House down by Glenelg beach with Isaac, Alan and myself. So we took a small amount of cash and went down there. Went on the VERY slow ferris wheel.....lol.....on a train, playground (Isaac did), ate some cheap dinner and went for a walk on the jetty and yes, it did cheer me up a bit. Alan said it was my birthday celebration. It was nice. On the way home we pulled up next to some fire works. They were in the city and right on the side of the road. We saw everything. It was a lovely finish to the evening.

Today I woke up and opened my presents from Alan and Isaac. I got a "Grey's Anatomy computer game"...hehe....and pink beanie, gloves, scarf and umbrella from Isaac. He knows me all too well :-) Then we went to church and there was a really good speaker at church. We came home and had a birthday lunch with my sister and her family. We had a cake that Alan and Isaac made. Sang happy birthday and blew out the candles. My mother in law, Denise, came and gave me a present as well....thank you. It was nice to see them all. My sister in law is taking me out for a hot chocolate tonight. I got plenty of messages and phone calls from my mum and dad in Africa! I love you!

Now, I do have photos but I am too tired to put then up right now.

Thanks for making my birthday special everyone. Oh, and on Friday night our friends Stephen and Leah came over for a pork roast and we played the CSI Miami Board game which was fun. That was a critical night since I had come home with particularly upsetting news from the doctor.

Thank you for celebrating my birthday everyone. Thank you for the messages on Facebook and email. The phone calls and the spending time together in person.

Wow, I am tired.

Now I saw my gynae doctor and my surgery to take this lump out from the lady area is booked for the 11th June. She doesn't think it is cancer but it will be checked anyway with pathology as per usual. She thinks it is some inflammatory granulotoma or something. I don't think that is the right word but I wasn't taking too much notice.....just asking if it was suspected cancer or not....hehe...so the second word I didn't really catch.

Pray for Isaac as we take him for his bloods tomorrow! That all goes well :-)

Ok, I am gonna go!
Love you and thanks,
Charisse

Update on all sorts! My medical and general, Isaac and Alan

2009-05-08T20:07:00.000-07:00

Hello All,

well heaps has happened since I last wrote. A lot has happened since Isaac had his tonsils out. What should I update on first.

Myself. I have been working, pretty much, once a week in Theater Recovery at the hospital which has been really good but exhausting. 8 1/2 hour shifts are SO long and by the end of it, I feel so clummsy because my feet start to drag, lol! I have more shifts booked for the next month. Yay! I enjoye nursing.

I also decided to apply for another nursing job at a new Day Surgery Hospital opening here in the State. It will have oncology, opthamology and gastroenterology clinics and surgeries and of course, a recovery there. I applied for the gastorenterology day surgery/recovery since I have experience and background in those areas. I got a job interview and had it on Thursday at 11am. I feel that it was a good experience. I have been open with the fact that I have FA from the very beginning when I called to enquire about the job. They wanted to learn more about it in the interview and said it was ok if I wasn't open to share. I told them that, in sharing, I am trusting that they will not discriminate and they gave me their word so I shared more about it. It helps my employers to understand me more if I get a job. The questions they ask are hilarious....about the job. All these questions about what I would do in different clinical environments...etc, etc. I feel I answered them well. I have NO idea if I will get the job. I am looking for a casual position like at the hospital where I am booked monthly or weekly. I don't want to give up the hospital because I like keeping the skills up that are really challenging. I deal with C-sections and blocks and serious operations at the hospital and a day surgery, of course, would not deal with those things.

This unit that is opening up is actually where my Cancer center is moving too so that is funny. All the nurses at the cancer center, where I have my infusion, have to re-apply for the job since the Manager is new. I am a little nervous. I hope they get the job for the oncology part because they have great experience and there are a good couple of nurses who have great experience with my terrible veins. I trust them and feel safe with them. I know I will meet heaps of new nurses as well and that will be fine but after being at the cancer center for about 5 1/2 years, I feel like these nurses are family! The new oncology boss and the Director of Nursing were the two people who interviewed me and are interviewing the nurses from the cancer center as well. When I was at the center yesterday having my IVIG infusion, the nurses and I were all talking about it. Haha! That was amusing. I know that if I get the job, we have orientation days at the new work. I am wondering whether that will be all of us or the separate groups! The lady mentions that we are required to come to the both days. Hmmm....it will be funny if I get the job and the orientation days are for all of us. I would be with the nurses from the cancer center! How weird! I may not get the job though......they gave no indication of how the interview went. That is how the cancer center nurses felt as well :-)

It looks like my bone marrow biopsy will be the second week of June. I am really nervous. My platelets have been a little different and I am nervous about that. I don't really want to talk about my platelets........please pray for me as I have this procedure done and get results. Pray that my marrow has not progressed worse with the pre-leukaemia or gone to leukaemia. It is always a fear for me.

I am supposed to be shown through the transplant unit for emotional healing...remember? Well that has been delayed. I still want to go through that no matter how hard it is. I am waiting for the call.

Remember I have an area which has a lump in the girly area. Nice to chat about it, I know. Well I feel it has grown and it bothers me all the time now. It very sore. We are thinking it needs to come out completely rather than just biopsying. We biopsied it about 7 or 8 months ago. However, in the last 2 months it has become worse. It is like a cyst! We rang the gynae specialist and I see her this week. She said we can cut it out and she needs to see what needs to be done. So please pray for that.

The labs for my 4 weekly infusion last time forgot, even though it was written on the form, to do my IgG levels. We found a result from a little while ago on the computer and have gone with that. It is just below normal which is enough to stretch it to 5 weekly for now. So I had another test done yesterday since it had been the 5 weekly interval and we will have the infusion in another 5 weeks from now and check those results to see if we can go 6 weekly. The test has been done with the big lab this time and will surely NOT be missed!

IVIG went well yesterday. I slept in til 12 noon today. I felt exhausted!

Isaac is doing well. He went to school this week. Monday and Tuesday he went for half days. He was still needing guidance with lunch and pain relief. However, Wednesday he went a full day and was a bit tired that night. Thursday and Friday were much better. Big days for him but he did well, the teacher said. They are giving him rewards to eating all his sandwich. He has been given awards for eating the whole of his fruit at 9am during fruist break. I know he has managed 3/4 of his sandwich at lunch and when he manages the whole thing, he will get more rewards. These rewards are helping him feel much more positive about eating and the teacher is so nice. He has a "fill in teacher" for the first 3 weeks as their other teacher had surgery and is away. I am a little nervous. He has been responding so well to this current teacher. The other teacher experienced all those dramas with Isaac at the end of last term and it has made me nervous. She is very nice but what if Isaac acts up again once she is back? Surely we have taken care of the problem now Isaac doesn't haves sleep apnoea anymore?

Oh....Isaac hasn't been cuddling or trying to kiss this other child at school...at all! Yay! He has just not attempted! It seems he has calmed down and I hope it stays this way! I felt so distressed about it all.

Anytime this week or early next week, I will take Isaac for his repeat bloods on his clotting times and CBC and so on. He has colour back in his cheeks so I think his iron has righted itself. However, it will be interesting to find out about his clotting times and so on. I rang mum in Africa and she said my ouma had a problem with this and they had to give her Vitamin K injections before a procedure because she would haemorrage afterwards. They never were able to find out why. So that is interesting and I must tell Isaac's paed about that.

We are selling our other house that we used to live in. We cannot afford to keep it anymore. It is not working out. The market is right for buying here at the moment. I know I mentioned it earlier. Alan and Isaac are out there right now, doing things to get it ready for an open inspection. If all goes well, this house will rid us of all our debt and we will have some left over for investment....we hope. This is what we get when we crunch the numbers. We hope all will go to plan. It has been difficult to let this house go....for me. I LOVE this house and if I could move it to where we are now, I would. It is big and open and has a nice feel. The suburb is just too far away for us anymore. It also has a tree planted in my brother's honour called the "Shannon Tree" out the front. It is SO huge now. Taller than the house! I hope no one cuts it down but I know this may happen if we sell it. There are a lot of memories at this house. Every time I pull up in the driveway, I feel like I am home. I love the neighbours too.

A lot is happening. The last month, Alan and I have sensed that something wasn't quite right with his work. Things have accelerated since then from not quite right to looking for another job, to Alan now having a last day of work. He finishes up on Thursday and he hasn't got another job yet!!!! I know Alan is more calm but I feel panicked! We will be living off my disability pension and Alan's 2 day carer and any extra work I can do with nursing. What makes me feel awful is that because of FA, I can't just go and work full time in my nursing because I get exhausted and then sick! So.......once again, we just have to trust God. That is the story of our life! Haha! Man has proved that they cannot be trusted. They prove it over and over again so trusting in God is the most safest thing. He is the only one who has our BEST interest at heart. I know that Alan having a new job is in our best interest, but I didn't plan on Alan leaving his job and not having another one yet! *sigh* Yet another change.........He has been applying for HEAPS of jobs and nothing yet.

Well, I really should go in the shower. IVIG makes me SO slack. It is 1.30pm. I need to get ready and Alan is coming to pick me up since I don't drive the first 3 days after infusion. It confuses my senses.

Thanks for reading and please pray for all these things.......my bone marrow biopsy, my gynae problem/excision, Isaac's repeat bloods, the selling of our house, my job prospects and Alan getting a new job!

Love you all,
Happy Mother's Day for tomorrow!
Charisse

Good Day with Isaac

2009-05-01T04:55:00.000-07:00

Hi All....again....hehe,

Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)

Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!

He had a biscuit for afternoon tea and didn't have many issues...still no tears.

We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!

I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.

After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.

Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????

Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).

He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.

In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.

As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.

Thanks for checking in everyone!
Thanks for the support!
Love Charisse

Isaac's Progress

2009-04-30T06:52:00.001-07:00

Hello All,

Isaac is getting better slowly. Drinking is now not a problem. Although, you still need to encourage him to have a drink but he can swallow fine.

It is eating that is a difficulty. He can swallow but when he does his ear hurts and his throat hurts and burns he said....it is hot that is what he said. He also thinks every bit of food gets stuck and then becomes distressed and goes off the whole meal. SO I start with the mushy veggies first so he will have those. I have to coax him lots because the paediatrician wants him to have this. There are tears and moaning and all sorts. I then offer him anything else. He likes bread and longs for it so I give it to him after the good stuff but once he swallows his first piece he cries and becomes quite distressed. *sigh* We will get there.

Isaac is very pale in the face. We saw the paediatrician on Tuesday who exclaimed at his paleness the moment we walked in. He checked for low iron by looking at his eyes and his hands but no clinical signs that he is anaemic. However, due to the bleed and his unwellness following the surgery, the paed wants to check somethings. When bloods were taken during the bleed, his clotting time came back too slow and some other tests were abnormal. SO they are doing those again in about a week. It is possible that lack of proper diet contributed to these test results being abnormal. However, in case something is wrong they must check.

Isaac has to have a CBC (complete blood count...platelets hgb etc), he has to have a test that shows if the bone marrow is making baby red blood cells and the clotting time test and INR. Hopefully there will be nothing wrong with the production of these cells in his marrow. If he is anaemic, then they want to put him on iron supplements. They need to find out why he is still pale. SO that will happen in about a week.

We were planning on having Isaac back at school on Monday. I know a lot can happen in 3 days but looking at him now, I am not sure he can go back yet. Things can change for the good quickly in 3 days.

OK, I am REAL tired. I worked in recovery on Wed for 8.5 hours and it was great fun.,

I have a nursing job interview in a week with a day surgery hospital as a casual staff member. I am hoping to have the two jobs,

I am off to bed! Thanks for keepig up!
Love Charisse

Isaac home

2009-04-25T23:07:00.000-07:00

Hello All,

Isaac came home at 10am this morning. He has been a bit brighter. However, eating is not something he likes to do. I am not pushing eating at the moment. Drinking is what we need him to do more. I have made strawberry milks, banana/chocolate/ice cream milk shakes, water and offered red cordial and more. It doesn't seem to matter what I offer or set before him, he grizzles and takes these tiny sips! I thought he would gulp down the banana/chocolate milk shake like he usually does and he turned the whole thing away! It is so frustrating.

He drank enough late last night at the hospital because his current IV jelco was inflammed and had to come out. We told him that if he drank enough then he would not need another. We had to really encourage him but he got a whole cup of milk down with our insistence in about an hour. Then he had some water while we played a game and went for a walk. So he was allowed home today. Also, Alan and I wondered if now that he can swallow water and stuff, that he might improve in his own environment at home. We must continue to encourage the drinking. The problem is that Isaac is refusing the stuff he really likes. If I purree things like soup and stuff, he will refuse that and clamp his teeth shut. He doesn't even want any chocolate!

So I just keep encouraging and reminding him that if he doesn't have fluids, then we have to ring the paed and go back to the hospital. Even ice-cream is a fluid. SO he can have a big bowl of ice-cream. Do you think he wanted it? Noooooooooo.........he has had 3 teaspoons of custard (that is also a type of fluid) and wanted no more. It has been really frustrating. How much he wees out will tell me how hydrated he is. So we will continue and it can only get better as his surgical site heals more and more.

What a drama at lunch time with the antibiotics. He didn't want them. Usually he LOVES the taste of the antibiotics. But not when he feels like this. If I put them in something else he just refuses it and we waste it. I learnt that at the hospital. I can disguise something in poo medicine but some things can't be mixed with this medicine. I disguised oxycodone in that the first night and he took it. You see, Isaac has trouble with constipation and he knows if he doesn't take that stuff, he gets real sore. He also likes the taste......so no matter what, he takes his poo medicine quite happily. If only he connected the two dots with his recovery and the medicine he has to have......if only he would realise how this would all help. SO it took 20 mins to get the antibiotic down and he spat the first bit. I actually got a bit cross because I think Isaac needed to have some "firmness" to see that this is not acceptable. He is 6 and you can reason with them a bit., but not much when they are unwell it seems...ahhhhhh.

You see with tonsillectomies, the more they DON'T eat or drink, the worse the pain actually gets. So the pain goes in a cycle............it is annoying.

So I guess I should go and encourage him to take another sip. It has been a long week.

Love Charisse

Isaac Haemorraged but is Stable Now

2009-04-24T06:35:00.000-07:00

Hi All,

what dramas! Isaac was discharged after a rough night of crying and being really distressed on Wed night. He did really well from the surgery but woke up at about 2 am very distressed and sore. I had gone home to rest but Alan was there. Because of FA, if I get too many crazy, late nights I sometimes get sick or ulcers and VERY exhausted! I needed to make sure that didn't happen. Alan tells me Isaac was quite distressed and all he wanted was his mummy. I felt bad when he told me but honoured all at once. I just needed rest but wanted to be there for him.

I arrived at the hospital at 10am the next day and Isaac's nanny was there watching him. He was totally exhausted and when I asked them to check his temp it was slightly high at 37.2 degrees C. He was sleepy and didn't want anything to eat or drink and he had struggled with his breakfast. Yet, they still said he could come home. I was a little worried to be honest but took him home. We had to carry him to the car. When we got home he slept and slept and slept. He was due pain relief so I woke him up but he couldn't get it down. He spat it all out and cried and was distressed. So I took his temperature and it had gone to 37.5 degrees C. From being a nurse, I knew I should call right then in case of infection. The doctors were impossible to get! The ENT's were going on leave the next day and I wanted to work this all out. Isaac refused anything via mouth and at one point I spent about 5 mins trying to rouse him with my knuckles on his chest, shouting his name loudly and he wouldn't wake up. I took his temp again and did his observations (typical nurse I know). His temp at risen to 38 degrees real quick and he was tachycardic. I was worried then. Since I was having trouble getting hold of the surgeon we opted to go for Isaac's paediatrician who he has had since being born premie. Bless his heart, he was in a C-section but rang my mobile immediately and told me to bring Isaac to outpatients at the hospital where I work which is closer.

So we took him there at the alloted time and the paed wanted to admit him for a short stay so they could see if he would drink 200 mls to 300 mls in 3 hours. If not, he had to be cannulated again and have a drip and be monitored overnight. They wanted to monitor his temperature and he had now gone 8.5 hours without pain relief or medication to get down his fever! I couldn't get it down him! I felt distressed! So the nurses did a great job and got it down with many tears and Isaac being really sleepy. Yay! His temp came down a couple of hours later. However, he was not doing well with the fluids and the sleepiness. He asked to go to the toilet though which was a good sign that he was not totally dehydrated.

So I took him to the toilet and while he was there, he used his bowels and I saw blood and then Isaac started making choking noises! I looked at him and there was fresh, bright red blood coming out both his nose and his mouth with huge clots! It was down his front, on the toilet and on the floor. I grabbed a paper towel to catch it so they can measure it. I had nothing else. Isaac was distressed and the blood just kept coming and coming! It was scary. I buzzed the nurse while reassuring Isaac, "it is ok. Just some blood. We will stop the blood. You will be ok" while thinking, "oh no, this is a huge amount of blood. I hope he doesn't bleed out". No one seemed to be coming but I could hear voices so I called out. Alan said, "hang on" and I said, "I need you to come here now!".....so he did and then the nurse and well.......then the doctors and nurses acted SO quickly! Isaac was put on the bed, ice on his neck to try and stop the bleeding, ice in his mouth to stop the bleeding........nurses and doctors putting in 2 IV's , one in each arm.....CBC's, group and hold, blood cultures, clotting times....you name it, they did it! Also an ambulance was called straight away to transfer him to our big women's and children's hospital in the city which is where I was diagnosed. The nurses and doctors were great. Explained everything to Isaac and managed to joke with him while giving him great care. I work at that hospital and they treated Alan and I wonderfully!

It was pretty emotional and scary. I was so worried and watching Isaac's face made me want to cry. He was scared and so pale and helpless looking with blood on his face and drips and so on.

We were put in an ambulance once Isaac was stabalised and went to the women's and childrens. Our private ENT met us there and when he looked at Isaac the active bleeding had stopped. They had told us that Isaac may need to go back in for surgery but by this stage they were happy it had stopped and that didn't look like the case anymore.

However, he was started on IV antibiotics and the cultures today confirmed an infection present. Bloods also revealed his clotting times were too slow and they wanted to investigate as to why. Isaac's pain was out of control so they gave him morphine type drug which bombed him out.

He is still in hospital and hopefully coming out tomorrow. He has started to eat a little and drink a little more but not enough to be removed from the drip overnight. He played a little in the play room this afternoon which was his first time out of bed properly. His temperature is now consistently down so the infection is being dealt with. He is still having the IV antibiotics. He is still having heavy pain relief and will be discharged with strong stuff to because we need him to continue to heal and eat and drink at home too.

So tomorrow morning, if he eats all his breakfast and drinks a cup of drink, he can go home. His clotting times came back normal today with his bloods and haematology want us to check that again in 2 weeks. If it is normal then, they will leave it and it was an anomaly. If it is not right again, he must come to haematology outpatients.

Isaac has been very brave and ......so have I ....hehe.

I must go to bed. Thank you for praying for Isaac.
Love Charisse

Isaac is a Trooper!

2009-04-22T05:45:00.000-07:00

Hi All,

it is 1015pm. I got home from the hospital not long ago. Alan and Isaac are still there as Isaac is overnight tonight. I came home to make sure I got some good sleep. When I don't sleep well, I feel really tired and nasty ulcers come up. We decided that with our crazy lives right now, me being with Isaac tonight may not have been a good idea. Alan sleeps through anything pretty much so he stayed and I came home to tend to the 2 kitty cats and get some good sleep, only to go back in the morning to the hospital. Isaac should be coming home tomorrow.

The tonsillectomy went well. They also removed his adenoids. The surgeon came in later in the evening and said that there were no complications but that Isaac's tonsils were HUGE and the biggest he had ever seen! He also said that Isaac's adenoids were absolutely huge as well and no wonder he was obstructing! He said that Isaac will be able to sleep and breathe so much easier now. He also said the anaethetist was blown away when he was intubating Isaac. He said that the anaesthetist was pretty impressed by the size of his tonsils.....hehe.....so we definitely did the right thing in having them removed. He should have no problems with sleep apnoea now which means that all those issues he was having should resolve themselves now! Praise the Lord!

It was an interesting day. We got to the hospital at 12pm. Isaac had to fast from 7am and could drink water until 2 hours before the surgery time which was 2pm. So he stopped having stuff at about 11am when we left for the hospital. He was supposed to be 3rd on the list at first but that changed and he was further down the list which took his surgery to about 3.30pm or 4pm. Poor love, he had nothing to eat all that time! Nothing to drink from 11am! His surgery ended up being at 4.30pm! What a long time to wait for a little guy. I am impressed with how Isaac handled it all! We brought colouring in books and pencils. He got a colouring in book from his Aunty, Uncle and cousins for the occasion. We also brought an activity Bible which you read and do certain activities. He enjoyed that. He brought some cars and toys. Of course, he had his snuggly and his soft toys that he sleeps with.....and a new soft toy cat that he named "White" from his Aunty, Uncle and cousins as well :-)

While we waited for surgery, Isaac and I walked around the lovely garden and paths by the hospital. This is a private hospital and quite nice and quaint. We picked berries.....hehe.....but didn't eat them. Just as an activity. The type you are allowed to pick but not many. We explored the hospital. This kept him rather busy but around 3.30pm he started to say he was hungry and wanted something to eat. At 3.50pm I went to the nurses station and asked how long it would be and they said half hour. So I busied Isaac with something else. Alan was there too.

Every time the nurse came to chat, Isaac would get shy and not say much. When the anaesthetist came to visit him, he didn't really want to chat. However, he was so well behaved! We had heaps of chats about how he would go to sleep and that he would wake up with an IV drip and what that was for. Isaac usually freaks out over IV drips and tape.....anything sticky! He freaks! I was really worried! He becomes distressed when talking about it. We talked about the soreness afterwards and what they can do for that. SO he was prepared. His new toy cat talked a lot about it to in the days leading up to the surgery and today when Isaac wanted to talk about it.

Oh yes, the anaesthetist talked about how they usually give children a pre-med to settle them but with the degree of obstruction, there was the risk of Isaac obstructing here in the room and that becoming serious. He said that medication can cause them to obstruct like that. I understood and didn't want Isaac in danger so knew we just had to be gentle with him and understanding and reassuring and it was all fine in the end. I know that they have to do what is best for Isaac and I certainly don't want his breathing compromised before the surgery has even begun! They entertained him so well even though he couldn't have the pre-med.

So at 4.30pm they came in to take him down. I went with him. I felt like I wanted to be the one since Alan was staying the night with him. Isaac rode down on the bed and he said, "I have never been on a ride like this!". It was good to see him smile even though I could tell he was feeling uncertain. He asked questions all the way. When we got to holding bay he said, "what is this room" and I talked about it and what the nurses and doctors wear and so on. He was real quiet until they gave him a balloon and then he brightened up real excited like. That was a relief. I got gowned up and was telling him that mummy wears this stuff when she works as a nurse. So Isaac asked me about that and we talked. The doctor came to speak and smiled heaps and we went into the area where the operating rooms are. Isaac was heaps uncertain when he saw that room......a strange bed and equipement with people gowned up....no face masks yet. I carried him into the room and he asked, "what's this room?" with an uncertain look. I told him it was the operating room and look at all the stuff. I told him all about it and he was real interested. We sat on a chair beside the bed with Isaac on my lap. The anaesthetist was SO nice. I liked him a lot and that is saying a LOT! Haha! He talked to Isaac about everything. He had told Isaac about the mask and we had told Isaac too. So he showed him the mask and got me to have one of Isaac's arm under my arm and the other me hugging him to myself so that I had his arms securely but like a hug instead of holding down. Isaac's head was on my chest and he was relaxed. The anaesthetist told Isaac to breathe the mask and right now he had no colours in it. (the doctor was asking Isaac's favourite colours. For example, red....what does red smell like? Then he would add the smell to the anaesthetic). So Isaac was talking about colours and the doctor said he was now going to add that colour smell to the gas and "can you smell it, Isaac? Do you think that smells like the colour red? How about this smell? Do you think this smells like the colour yellow?" Each time he added a smell the anaesthetic got increased. Isaac was happy to have him hold the mask up which I was surprised but Isaac was distracted by me tickling his arm and hugging him and the conversation of the anaesthetist. Then the doctor said he was going to add the colour blue like on the mask. He asked Isaac if he can smell it and Isaac said in a joking kind of voice, "noooo....hehe....I can't smell blue because it is on the outside of the mask!". He wriggled his hand out and pointed to the colour on the outside and we all told him how clever he was and then within seconds his eyes rolled back and he started to snore. In those moments when you feel your child totally relax and see their eyes roll back and the colour and them twitch, you feel real weird and you see how vulnerable your baby is. So I was trying to hold back the tears. They got me to lift him on the bed with some help. He looked so vulnerable on the bed and the anaesthetist asked me if I wanted to kiss Isaac on the face before leaving and I said yes.....he lifted the mask and I kissed him. Then a nurse showed me out and put her arm around me and asked me if I was ok. They were SO nice and I was REALLY impressed. I mean, when I had my surgery done at this hospital they handled my anxieties SO well. I was VERY impressed! I turned to the anaesthetist before leaving and said, "take care of my baby" and he said he would with a smile. SO sweet.

I started the walk back to the ward and in the elevator I had tears forming and was trying not to bawl my eyes out. I got to Isaac's room and was holding back the tears. I felt silly and I did snap at Alan and am sorry for that. I just felt SO teary about my sweet baby being so vulnerable and needed to do something so I didn't worry about him the whole time. So Alan and I went for dinner. It was 5pm when I got back to Alan. We went over to a cafe in the women's and children's which is across the road and not long after we finished our meal, they called us to tell us Isaac was back! That was quick. SO we hurried back and he was in his room, VERY sleepy but there. He opened his eyes and a few tears. I wanted to hold him so badly but the nurse was busy with him and Alan was on the other side. I wanted to cry when I saw him start to cry a little.

Whoah....the feelings that a mother experiences! It is crazy! Once the nurse moved I wasted NO time sitting next to Isaac and caressing him. He enjoyed a tickle on his arm and his throat was sore. He asked if his tonsils were gone and he had a few tears when I said yes. He had his drip in, bandaged with bright red, rubber bandage. He saw it and we explained but he didn't freak! He was SO brave! He has the drip in all night and he accepted that. He kept it under his covers and said he didn't want to see it. Before I left he was getting used to it and smiling more. He had eaten a full sandwich and had some ice-cream and a chocolate milk. I sure hope he doesn't throw up but he hadn't felt like throwing up. I made sure he was given pain relief only moments after being on the ward and that helped. He hasn't spat any blood up! He hasn't vomited!

The doctor warned us that his voice could get higher in pitch when everything was removed. Well, I already notice it! Isaac isn't nasally anymore and his voice is higher in pitch. The doctor said his voice is now how it should be. He sounds SO cute and clear.

Tomorrow he will have his IV out and he is scared about that. I want to make sure they use something to help the sticky tape off without it hurting because he is petrified and started to wimper over it tonight. He hates tape.....I think from having it when he was so young and premie.....bad experiences with tape and soreness and stickiness.

Oh, something that was cute. He had changed into the cute, little gown they gave him and he was walking around. Two nurses saw him and said how gorgeous he is. They then said to Isaac that he looked so cute in his gown. Alan was standing behind Isaac and Isaac turned around, rolled his eyes and smiled a funny, embarrassed smile as if those nurses are SO ozzy or silly....haha. It was funny.

Another funny. I was asking Isaac whether he remembered the man talking about smelling the colours from the mask and he said, "yep, but those smells were a bit stinky and they are not from anywhere in this world!!!" I laughed out loud and agreed that the gas stinks and that they don't really smell like the colours the doctor was talking about! He acted like the doctor was real silly for thinking those stinky smells were anything like the colours he was talking about! Hehe

So I suppose I should go to bed. I can't wait to be with Isaac tomorrow again. It was a success and I pray that Isaac sleeps well and feels good tomorrow to be able to go home.

Thanks for praying for him.
Love Charisse

Tonsillectomy Confirmed for Tomorrow

2009-04-21T06:34:00.000-07:00

Hi All,

took Isaac to see the ENT today and he said Isaac's tonsils are real big and definitely obstructing his breathing. Isaac definitely has sleep apnoea issues. He asked us loads of questions in regards to Isaac. Like, his behaviour, whether he was a restless sleeper, did he wet the bed still at age 6, is his a mouth breather, what is he like when he eats, how well does he grow and put on weight. All of that stuff.

Well Isaac has not put on weight in 6 months which I thought was odd and the doctor also thought was weird. He doesn't grow fast at all. He still wets his pull ups heaps even though we restrict his fluids to no more after 6 to 6.30pm. We also take him for 2 toilet stops during the evening while he is asleep as well as before bed.....and he still wets quite a lot! I always thought that was odd. He has trouble eating with his mouth closed. Also, at school and home I have noticed that he seems "young" for his age and thought it was always because he was premature by 13 weeks which can happen. At school he has trouble focusing and is always needing a sleep or huge rest around lunch time and after. He has been running around like crazy as well.

Guess what??? Sleep apnoea has been linked to excessive bed wetting. The doctor tells me that most children stop wetting once the obstruction is removed....his tonsils and adenoids. We should be able to help him with this bed wetting now. At the moment, because of the sleep apnoea, the adrenal glands are stimulated somehow and then the kidneys and so he wees without any control no matter how many times you take him to the toilet in the middle of the night! I won't go into the chemical reasons as to why the adrenal gland is stimulated or anything like that.

Also, because of the sleep apnoea and working so hard to get oxygen, Isaac sleeps restlessly, not allowing him enough rest and recovery from his day, making him tired and he doesn't concentrate. His cognitive development is affected because his brain isn't getting the time out. So the doctor said he can be delayed and seem "younger" than he is.....didn't I say that we thought Isaac was younger????

Also, the sleep apnoea causes the brain to suppress the growth hormone at night. Children do most of their growing then and so they don't gain weight or grow properly......and Isaac has trouble with his weight.....another connection.

Another thing is because he mouth breathes at night because of obstruction, his jaw has taken on a certain shape, and his teeth have crossed over or something at the back, because of how he holds his mouth. The doctor said this will correct itself once the tonsils are removed and he can breathe.

While eating he can't breathe so he has needed to have his mouth open and i used to feel frustrated that he wouldn't eat with his mouth closed. He hasn't been able to help it because of how big his tonsils are......he will be able to breathe again once they are out!

So Isaac will be sleeping better, less wetting during the night (hopefully none at all), develop properly in growth and cognitively and grow up a bit and be able to concentrate at school and calm down....and have plenty of rest and restoration during his sleep!

He is booked in for tomorrow (Wed) and we have to be at the hospital at 12pm and surgery starts at 2pm. He is about 4th on the list. Youngest child to eldest. I am pleased we are getting this all worked out. Wait til the teacher hears about all this! May be they will stop pestering me about Isaac and things will calm down.

Please pray things go well.
Thanks for checking in!
Love Charisse

Tonsilectomy

2009-04-18T06:45:00.000-07:00

Hi All,

well, the paed agreed that the sleep apnoea theory sounds correct. So I took Isaac to the GP and got a referral and we spoke to the ENT office where I go for FA screening and they have someone there who does children. Isaac has an appointment to see him on Tuesday afternoon and they have already booked his surgery to take the tonsils out on Wednesday coming on the 1pm list. Isaac will stay at least one night in hospital. This is big for Isaac as he freaks out over things with hospital. I think memories from being a premie baby. He had to go through a lot and had heaps of tape on his face and as a result is overly terrified of hospital things and bandaides and so on. We have had some good chats though. Isaac said he is nervous and a bit scared but he seems to understand why he has to have a tonsilectomy and that it should make him feel much better. He seems comfortable that nurses like mummy will give him pain medication to help with it hurting. The IV drip is something we are still working through. He is terrified. Tonight it seemed like he might allow it without kicking up a fuss. We will talk more about it though and help him see why he would need it.

So that happened all so fast. I managed to switch my nursing shift from Wed when Isaac's surgery is to Friday. So that is good.

Mum and dad go to Africa for 6 weeks on Tuesday. However, I am not worried as I have good support from Alan and our private nanny and my mother-in-law (other mother). Thanks Guys!

Well, I am going to bed. The paed said that we are hoping this tonsilectomy will solve problems by allowing him to breathe better and get proper rest. If his tiredness continues more tests will be done to find out why as it is unusual that he is so tired with 11 to 12 hour sleep at night. I thought I would also get his eyes checked to see if that could be related to any tiredness and lack of concentration. This will all get worked out.

Thanks for your support! Everyone.....thanks.
Love Charisse

Happy Easter! .......and Update

2009-04-12T23:26:00.000-07:00

Happy Easter everyone!

It has been a good weekend. Good Friday was nice. While we were unable to go to the Good Friday Service at church due to me still recovering from infusion and Isaac recovering from gastro, we had a nice, intimate time at home together. We read about Jesus' death and resurrection on the cross and had communion together. It is the first time Isaac has had communion. Isaac asked Jesus into his life about this time last year. He understood what communion was and was so serious while taking it. When he took the bread (biscuit) and the wine (red cordial), he had his eyes closed and he said, "thank you Jesus, thank you Jesus". It was so sweet to see him really involved. It is so sweet to see a child so young with such a true relationship with Jesus. The Bible clearly explains that one must understand what you are doing when taking communion and Isaac really did understand. After doing this and discussing what we were doing....and reading the Bible, we watched the "Jesus" movie for children. Isaac watches the whole thing. We sit and watch to make sure he understands and doesn't see anything that would be too "old" for him. I always cry through any Jesus movies.

Then Friday night I went to the women's Easter rally at our church. We had a woman by the name of Aliki ministering. I was also singing an item and God had given me something to share. It was a really good night and the Spirit of God was most certainly there moving and ministering. Praise the Lord, God helped me through the song and I spoke about the things He had laid on my heart. Aliki's ministry was awesome. I recieved some prayer and then went off home. Saturday we spent at home and Sunday we went to church in the morning to celebrate the ressurection of Jesus. Isaac woke to find Easter eggs in his basket by his bed and he also had a small egg hunt in the lounge room. It was a good day. Nanna came over in the afternoon to give Isaac some more chocolate....hehe....and then we went to mum and dads in the evening for dinner and some fellowship :-) It was good. I was so tired from all the activities......and the fact that I still feel sleepy from infusion, that I slept til 11am this morning.

I am on call at work now for Tuesday, Thursday and Friday. I only work once in a week so I hope I get one shift on either of those days.

Back to the issues that I wrote about last entry with Isaac and school. We had a huge chat to Isaac about the hitting and cuddling issues. The next day which was Tuesday, he went back to school and had to apologise to the 2 kids he had hit, the teacher for not listening and to the child he likes to cuddle but the child doesn't like it. He apologised and Alan asked the teacher why we hadn't heard about all this at the parent/teacher interview the week before. The teacher then told him that Isaac had only hit the last couple of days. That he had been not listening for those two days! She didn't say anything else about the "may have to repeat year 1" issue. She then said that she thinks his issues are directly to do with tiredness. Otherwise, he behaves fine. I don't know if she generally thinks he acts more younger than the others. The cuddling issue is an ongoing one I knew about so we are just reminding Isaac that if someone says, "no" then you stop no matter how much you want to cuddle. So......boundaries. The thing is that we are a very affectionate family and what we do at home, he was doing to this child who is complete opposite. We joke about kissing Isaac and I call him my "beauty" and cuddle heaps and so on. He has to realise that not everyone is like that but I still love being affectionate with my child. I am very concerned about how this child reacts and I am very worried Isaac is being labelled as a bad boy even though hugging is not really bad. I admit, Isaac needs to learn those boundaries and we have been talking about self control....but I am still concerned and I can't express it all here.

I have felt SO anxious about how things have been portrayed to me by the teacher . I honestly don't think Isaac is really bad at all. I feel like I deal with so much in regards with FA that I am worried Isaac will do something "wrong" at school while I am in treatment or something and I cannot help him or explain to the teacher. I kind of feel like school is not safe. I know it is safe. When I say safe, it makes ME and my feelings feel unsafe! Now I am convinced that it has to do with my anxiety and feelings that Isaac is being "attacked". I am aware that I need to deal with this. It is a blessing that the school holidays have now started and that I have 2 weeks of no school. When school starts back I am going to have a meeting with the teacher about my concerns in regards to what happened that last week. I am going to tell her how I feel about things and how I am struggling to cope with these emotions and that I don't feel safe. Weird hey. It seems that when I get really overwhelmed I don't know how to cope with emotions. I want this issue that came up in the last week dealt with and I don't want to be scared to send my son to school because of me being emotionally overloaded. I have no idea if what I have written makes sense. I know this issue is not as big as it was talked about. However, I feel scared. That might be because I have had a lot to deal with the last week and had infusion which can change how I feel.

Today I was thinking about Isaac's tiredness. He has 11 to 12 hours sleep a night and he shouldn't be as exhausted as he is! Today he has been grumpy and upset this afternoon and he still had 11 hours last night. He has had about 11 to 12 hours for 5 or 6 nights in a row now! There has been no school today so he shouldn't be as exhausted. Then I wondered whether he is not having a good, quality sleep in those 11 to 12 hours. I thought about how I had taken Isaac to the doctor on Thursday last week. The school called me to pick him up because he had been throwing up so I took him to the doctor who exclaimed how big his tonsils are and I told him that it is normal.....which it is. It is something we have been watching with the paediatrician. Isaac literally has the space of the tip of your little finger to breathe through when sleeping and doing anything else. They are huge! They have always been huge. We think it is hereditary because Alan was the same. Alan had sleep apnoea - they thought.....so they took them out but only after we were married. The paed had asked me to watch for signs of sleep apnoea with Isaac. I watch him while he sleeps and he snores. Ocassionally I think he misses a breath but then sometimes it seems like he breathes fine. I wonder if he is having trouble and he does have sleep apnoea because of the size and people who have sleep apnoea, often are tired during the day because they don't get the oxygen and have to work harder in their sleep getting less quality sleep. Now I am starting to wonder if his incredible tiredness and silliness and grumpiness is actually phyiscally related to his tonsils, working hard to breathe during his sleep, sleep apnoea and then less quality sleep and he gets tired as if he has had no sleep at all! This could be affecting his performance at school and making him not cope and act weird!!! So....this could be happening. It is a real possibility! I am going to ring Dr Smiley and chat to him. This may be the first time I am seeing his tonsils really affect his quality of life! We might have to wip them out! In fact, I think we will! This is a revelation! This may fix the problems he has been having! I need to get in to see the paed and talk to the teacher about this too......

Now for me. I went and saw my haem/oncol on Wednesday and managed to chat to him about going through the transplant unit to help me deal with those last moments of my brother's death. To help me cope being in a transplant unit again since it has been 15 years. To break the fear that it holds over me. I stuttered and cried and couldn't breathe right but I MANAGED to get it out and talk to him about it. So a pyschologist who deals with haem/ocol/transplant patients is going to call me in the next 2 weeks and make an appointment with me to talk about those last moments with Shannon and for me to take the step and work through all this. I am scared but amazed that I am doing this. This is HUGE for me. Please pray for me as I do this.

Alan is good. Work is a bit slow for him right now in certain areas.

Anyway, so that is what has been going on. I will update you more a little later!
Love Charisse

Year 1 Blues - Do FA children have difficulty?

2009-04-06T01:50:00.000-07:00

Well, I had a good sleep last night. I had a good weekend even though I felt flat from infusion. We had kids' club on Friday night which was fun for Isaac but unfortunately it causes bed time to be delayed by about an hour and a half. In stead of Isaac being in bed by 7pm with the lights out, he is in bed by 8.30pm. Not so bad being a Friday night.

However, then on Sat night we had some friends over and Isaac was in bed a lot later. May be in bed by 8.30pm but not asleep until 9pm. Way too late for Isaac and I was thinking about the fact that school was in a day and I needed to have him well rested. Sunday was the usual. I was at home because of infusion reaction and Alan and Isaac went to church. Daylight Savings changed and was over so Isaac woke at 6am instead of 7am. That made him tired and he was quite ratty for Sunday afternoon and evening that I took away his bed time story and had the lights out just before 7pm on Sunday night, feeling concerned about what he would be like at school the next day.

Most of you know that for the first term of school, in year 1 this year, Isaac has struggled with the year 1 work load and by Wednesday he is really tired and kind of shuts off and gets silly and won't listen, glazed eyes and so forth. So for about 5 weeks or 6....something like that, he had Wed afternoon off at home from 12pm. It worked and he perked up, handling school a lot better, doing heaps better with his spelling tests. Last week I noticed him getting tired again and a bit hyperactive at school on Wed. He has done 2 full Wednesdays again to see how he copes. I was a bit concerned at how he would cope with the spelling test on Friday and when I picked him up from school today I found out he hardly tried and only wrote down 3 words out of the 7! I felt concerned.

To be honest, I was a little taken back today when his teacher started to chat with me. She is absolutely lovely and very caring but I couldn't help but feel really down! She started with how Isaac didn't do too well at his spelling test last Friday and I expressed concern about him being tired again. Then she went on to say that he had been hitting kids today and punched a child in the playground. This completely surprised me as Isaac is not a physically violent kid! In fact, he is usually the one being bossed around! The child he supposedly punched was the one who often hits him in the playground and literally, throws him around. We have had to deal with that before so I wonder if that was provoked but I have NO idea! She said he had been really silly all day and not paying attention in class and everything she told him went straight over his head! He has been a bit like this on the weekend and I have put it down to him being tired. I have also felt bad because I had been getting him in bed by 7.30pm all week instead of 7pm and he seemed to be suffering from it....hence my worry! On top of this, Isaac has a good friend whome he really likes and so Isaac likes to cuddle him. Isaac is a REALLY affectionate kid. When he likes someone, he wants to express that affection. Up to now, I have had trouble explaining to him that he cannot do this at school because this child doesn't like it. That generally boys don't like it and he mustn't do it. Well I find out today that this child who is a really good friend doesn't want to be friends with Isaac anymore because Isaac won't leave him alone! I stood there horrified and feeling like I wanted to cry! I felt like I didn't know my own child! So I discussed this issue with the teacher and the hitting and the tiredness and so forth.

We only had parent/teacher interviews on Tuesday last week. I was late and Alan went on his own for the first interview because I was working. I suppose I would have thought that some of this stuff would have been revealed at the interview if it has been an ongoing problem. The teacher started to discuss how she isn't sure if Isaac will be able to go on to year 2 next year. Now I started to feel panic. I know that parents shouldn't panic about that stuff but you don't want your kid to be behind even if an extra year of school helps them to be infront if you know what i mean? She said that they usually make a decision by June if the child has to stay back, depending on their progress half way through term 2. She also said, "so try not to worry about it right now" but how do you NOT worry about it??? She mentioned that not only is he little (I know FA parents would deal a lot with that) but he also seems more immature than the other kids and where he is right now, he couldn't be expected to be in year 2. However, it is just the first term. He has had 10 weeks of being in year 1, how would you know? That is what I say.....although there must be certain milestones that he should have accomplished. Isaac's real good friends are all with him and I don't want him to not move on with them! I also want to continue with them as a mum of year 2! I know, I know.....this is silly. If it is best for Isaac then who am I to argue or be upset......but I DO feel upset and I don't want him to repeat and I am SO upset about his behaviour today because I didn't raise him to act this way *sigh*

I know, in the back of my mind, that Isaac was born 13 weeks early. I know that this could affect his development and cause him to act younger in areas but at the beginning of the year they were telling me how focused he was and how he was a machine and very independant. How come I didn't hear any of this "may need to repeat the year" at the parent/teacher interviews......OR is it just that they are thinking that after a really bad day today! *sigh* Alan said it may be a knee jerk reaction from today or may be they have been watching and waiting to say something but were not planning to at the parent/teacher interview.

I feel bad that I didn't have him in bed real early on the weekend. I have come to realise how important bed time is to a school child. He must have his lights off at 7pm. Tonight it was 6.30pm. So I did well tonight. Both Alan and I spoke sternly to him about the consequences of hitting at school....what would happen at school as a consequence and at home. We spoke to him about the cuddling issue and how serious that is and how no one will want to be his friend if he ends up being the "naughty kid" who hits and does things kids don't like. We spoke to him about the "not listening" and that if that continued he would be in the office at school. Some of you may think I am harsh, but kids don't seem to stop unless they KNOW what the consequence is and how serious it is! So in devotions tonight Isaac prayed to Jesus, first saying sorry for not listening, cuddling and hitting (whoah, what opposites). He then asked for forgiveness and asked Jesus to help him not do it again. He missed out on sweets after dinner tonight due to not listening and for Isaac that is devastating. Isaac also knows that every day we will be asking his teacher how he behaved and if he listened and so forth.

I hate disciplining but it comes with parenthood just like the cuddling and kissing and reassuring. I just wish I never had to do it. However, if they misbehave, you have to carry through the discipline otherwise they will never take you seriously.

Tomorrow morning at school will be full of apologies. Alan and Isaac will go to the friend who he cuddles and stuff and Isaac will say sorry to him in front of his mum, then the teacher and the other 2 children he hit today. One must face up to things when one has done wrong and correct it quickly. *sigh* Believe me, Isaac really is a sweet kid..........

May be I feel so down because of infusion as well.

I needed to let out all my feelings on this topic. I feel like it is my fault that he is struggling with tiredness and acting like this. I need to be more diligent to get him in to bed and lights out at 7pm and sometimes I just don't. I am learning how important an early bed time is for school children. Not that Isaac ever stayed up super late. Just seems like there is no room for error with school *sigh*

I am interested to know how children with FA cope at school. Parents, do your children need a strict bed time? Do they get SO tired that they get ratty? Do they have to repeat much? Are they more immature at school than the others?

Thanks for reading and commenting. It means a lot! I hope I am doing an ok job at parenting amongst everything else!
Love Charisse

Our New Kitten Bella

2009-03-27T03:22:00.001-07:00

Ok, hi everyone,
it has been a little while since I wrote. I just couldn't be bothered! Sorry. I have been really busy! I have been lap swimming and helping my sister from time to time, being a mother to Isaac and enjoying our new kitten, Bella!

We got her two weeks ago and she was 7 weeks old. So she is 9 weeks old now. She has grown quite a lot in 2 weeks but is still SO small! You forget how small kittens are. Trying to keep watch over Isaac while he plays with his new kitten. He gets SO excited and she is SO little, I worry he will break her at times! So I have been busy trying to teach Isaac to be a good little owner. Bella is so sweet and very affectionate. She purrs like a tractor and she loves a good cuddle. This is good for Isaac. She was born into a family with little children so she is used to children but we still need to watch Isaac while he plays. The picture under here is of Isaac's areoplane that he made and Bella was his passenger in the back. Cute. Isaac had a walkie talkie thing on his head and was the pilot. This is rather an odd picture of myself. Must be the angle of the camera as I look out of proportion but Bella is asleep in my arms like a baby. I love baby things. When my sister in law saw Bella on Friday she said that the pictures make her look big compared to how little she is in real life. Bella is very little :-)

Bella on her first day at home....

Isaac's very first proper cuddle at home. His face says it all! He was very pleased :-)

I like this photo. Isaac's legs looks huge!

Bella playing :-)

She stayed in the bathroom for the first 2 or 3 nights and then was transferred into the laundry to sleep with Matilda, our 6 year old cat. They are still getting to know each other but Matilda is quite tolerant of Bella. Bella is now brave enough to sneak up on Matilda.

What else has happened? I had infusion on Friday. I was disappointed by my bloods and a little nervous at what my bone marrow biopsy might show this year. *sigh* I wish that counts NEVER went down! It's my platelets that seem to worry me the most. I keep plodding along though.

I have been dealing with lots of things. I have reached the stage where I want to work through the last moments of my brother's death and this means visiting a transplant unit with a social worker, being taken through and having this person talk me through feelings, smells, visions and anything else that seems to happen when I am near one. I haven't been through or close to a transplant unit since Shannon died 15 years ago. I know that God has brought me to a place where it is time to walk through the door to some more emotional healing so I am not bound by fear all the time. If I ever was supposed to have my own transplant, I wouldn't be able to walk through the door. However, even if I was not to ever transplant, I am bound by the fear of that last day with my brother and I need to face it and receive that healing from those painful and scary moments. I have been greatly encouraged by Delia's journey and her transplant and it has led me to think a lot about my brother and what happened and I have had a desire to deal with it. I think God has finally given me the courage and strength to go through this. I am really scared and nervous about this all. When I see my haem/oncol this Wednesday I will talk to him about all this. I hope I won't break down. I have never been able to chat about this stuff without, literally, freaking out.

Well, next infusion is in 5 weeks time. I will be interested to see what my IgG levels are then.

One more week of school left and then it is Easter and school holidays :-)

Ok, I am tired so I am going to go.

Update more later.

Love Charisse

Be Brave and Shave........

2009-03-16T02:20:00.001-07:00

Greetings everyone,
well I have been feeling a bit better this week. I am finally starting to heal properly from the bowel episode and for the first time today, I had no pain relief during the day! Yay! I was able to walk more properly and move around. Tomorrow I will attempt to do my lap swimming. I also ended up having no infection even though I had a script for antibiotics just in case, I didn't have to use it and I am relieved :-)

I am starting to get used to our cat, Jerry, not being here. I still miss him greatly. We all do. However, it is getting easier. Isaac is definitely finding it easier and life is moving along. Isaac says he misses Jerry and mentioned calling the next kitten, Jerry....but we will discourage him from that I think. Our other cat, Matilda, has stepped up to the bar really. She has chosen to join us in the lounge room at night just like Jerry used to. She is more cuddly and on our laps and heaps playful. We have to get the scratchy pole out for her at night and play with some wool. She ran round and round the lounge with Isaac and wool on Saturday which is really different. We are enjoying her company! It makes things easier :-)

What else has been happening. Be brave and shave.....hehe. The Leukaemia Foundation has a huge fundraiser once a year. It used to be that you tell people you are going to shave off all your hair, they donate money to the cause, and on a certain date you shave! Well now this can include colouring your hair, waxing certain parts of the body or shaving! Since the Leukaemia Foundation does a lot of work for leukaemia and other blood disorders, it will also help FA even though they don't do work specifically on our rare disease, FA. Alan decided to partipate and he got some good donations. Alan chose to colour his hair, shave off his beard and wax his whole back! Yes, Alan has a hairy back....not disgustingly hairy but he has not liked it. So today was the day for Alan. I have provided some pictures. Here he is with a beard, shaving it off and the final product, without a beard. Then he went to the hair dresser for a colour..........

They convinced him to tint his eyebrows too....since he went from being light to a deep, chocolate brown colour....hehe. Alan having his eyebrows tinted below.

The the back waxing and Alan said it hurt A LOT! Apparently this picture was taken when it hurt the most! Hehe

His back without hair and red......

The final product. Alan looks SO different and I am not sure what to think. He still looks nice and not disgusting. He always looks so young without his beard! I can't get over the eye brows....hehe So well done, Alan...and for a great cause and you raised some good money as well! How cool would it be to have a fundraiser that is just as fun!!!! Haha!

So on to another topic. Just over a week ago I became a new Aunty to my 2nd niece, Elizabeth. Here are some photos of her just 3 days old. My sister tells me she looks like me. She has similar lips.......

Me with my 2 nieces, Eliana and Elizabeth, and my gorgeous son, Isaac

Me and my 2 nieces and my mum...

This is Elizabeth the day she was born......a bit different the the 3 days later at the top!

The day Elizabeth was born......we have similar faces

She was awake for almost an hour and a half, just looking at me.........she is beautiful. I am a proud Aunty.

Well, that is enough excitement for today. Thanks for stopping by! I will have more news later I am sure! I am off to relax with Alan!

Love Charisse

A discouraging week...not feeling too well

2009-03-11T05:30:00.000-07:00

Well this week is just not going how I want it to go! First infusion which is pretty normal for me every 4 weeks, then a very late night with trying to save our cat, the death of our cat and then the grief and then a horrible episode that I sometimes have with my bowel. Because that can be all so personal, I won't go into details. However, it has left me debilitated the whole week. I can't drive the car, or walk properly, or bend down or lift things and I am feeling feverish. I know that on top of this I have an infusion reaction which already makes me feel hot, flushed, nauseated, tired and lethargic. Add grief for the cat and the very late night at 3am while trying to treat him.....and add this episode the next morning and I am feeling SO unwell it is not funny. In fact, I have been taking digesic for this terrible pain. One time I had one of these episodes I was in hospital having morphine. I have been trying to avoid that. However, I am feeling concerned that I am getting ferverish at times.......it could be just all a part of infusion reaction but I feel doubly worse and I am scared to get an infection from the episode (leave that up to your imagination ......hehe). So it looks like tomorrow Alan will ring my specialist and check if I should be on a course of antibiotics with the lower neutrophils to avoid unnecessary infection, especially since I am not feeling well at all.

I have not had an episode this bad for a long while and I forgot how long it takes to recover.....sometimes a week to a week and a half and this just happened to be a bad one and 4 days later I feel NO better at all! I am also more nauseated and having to take anti-emetics (anti-nausea). Usually with infusion I can manage to keep off those. Although last infusion I was so nauseated on one day I did take a maxolon. However, this is ridiculous. I crawl out of bed in the morning feeling horrible. It is normal to feel fatigued and like I didn't sleep with infusion but I feel even worse than usual and it has made me cry a bit.

Here I am complaining about this and brave Delia is in transplant putting up with a lot more. I feel like a wimp. Go gal! You are amazing!

I just think that this week has been an extra wipe out. I am still upset about the cat. I still feel like it is my fault for not noticing and I need to express this to deal with these feelings. Because of all that, I didn't get the rest needed after infusion....the first 2 days rest are critical for not a bad infusion reaction and then I had this episode and I am just real emotional. I know that I take death real hard. I know that after living a life with FA where you are fighting against death all the time, when it happens....even to an animal, I just start to cry and wail....which is exactly what I have been doing when Isaac is not around. The "absentnace"....not even a word I am sure....of Jerry our cat reminds me of what it was like to suddenly not have my brother around after he died a month after transplant. I hate this heaviness.......I don't like my environment to change and I have to admit that feeling those feelings that I so closely associate with my brother, Shannon, are scary and I hate reliving them. Yes, Jerry is a cat and not a human being but the grief still reminds me. It is different to a degree. Well it is different but then why am I so easily reminded and thrown back into those moments when we lost Shannon?

Last night I was up about 6 times with pretty severe pain. It made me feel really tired. Do you mind praying for me? I have seen prayer work lots of times in the last 3 to 4 months. Just today God did something special.

It has been a bit of a discouraging week even though there have been special moments.

I am a new Aunty! Did I tell you that? I will post some pictures of me and the baby! Baby Elizabeth. She is my second niece. That was a happy moment.

Well, I need some sleep. Thank you for your support guys. To be able to share with you really helps me work through things. I want to thank everyone who gave me support when our cat, Jerry died. It meant a lot.
Love Charisse

Our cat died

2009-03-08T05:31:00.000-07:00

Hello People,

last night was a really hard night. Isaac's cat, his pride and joy, passed away after being bitten by a brown snake. I feel SO bad and SO guilty.

He came home for dinner as per usual and seemed fine. When we were doing devotions as a family, Jerry was there on Isaac's bed pussy footing and purring as per usual. No dramas. Shortly after that he climbed onto his bed in the lounge room and went to sleep. A couple of times during the night like at 9.30pm and 10pm I noticed him shuffling around a little weird but I also thought he was being a sleepy cat. I had no idea he had been bitten by a snake and that he was becoming paralysed. At 1115 pm something about Jerry concerned me and so we went to check on him and he was paralysed down half of his side and breathing harshly. I immediately started to think either a tick, a snake bite or a stroke. However, he is not even 3 years old yet and so a stroke would seem real unlikely. I started to pray for him and stroke him as he seemed distressed. It broke my heart. Isaac was in bed and so Alan took him to the vet hospital down the road and they tried to work out what was happening and what treatment. They thought it was a clot but then his temperature started to drop critically and that is like a snake bite. So they were going to treat that. Jerry became critical and they started to try and warm him and give him injections for the anti-venom. Then they started the anti-venom. Alan came home to me because I was a wreck. By now it was last into the night like 2am. I had been crying and crying and dreading telling Isaac the next morning if he didn't survive. I went to bed, after hours of praying for Jerry, at about 2.40am. Apparently they rang at 3.10am to say that he had passed away. The vet said that he just started to deteriorate VERY quickly despite the anti-venom going in. That they could do nothing to help him past that point. So he died and I am SO sad. I have had tears a lot through the day and night. I feel lonely without him because he used to cuddle us in the lounge every night. He would sleep on his bed in the lounge and tonight he wasn't there. I feel weird, strange and I hate the heaviness of grief. I know he is an animal but this heaviness reminds me of what it was like after my brother died a month after his transplant.

I had to write because I feel scared and lonely even though Alan is still here. We have another cat called Matilda but she is a different personality. Isaac could do anything to Jerry. They were so close and shared many hugs and cuddles and games and all sorts.

My heart broke when we had to tell Isaac who then cried quite forcefully for an hour to an hour and a half. He has been coping ok though. He has been drawing pictures during the day of him and Jerry and us as a family. He has role played about the snake which is helping him work through it. He has a photo of Jerry and himself that he carries around with him and he has it by his bed right now as he sleeps. He also has Jerry's collar because he wants to smell Jerry. My heart aches for my little fellow right now who is grieving. Tonight when he was going to bed, he became distressed and cried and took a while to settle. We just want out cat back again. For the pain of loss to go.

Jerry helped us all cope with FA. We will let Isaac have another cat at some point. Matilda is really Alan and my cat because she doesn't put up with Isaac's rough play but hopefully he finds some comfort in the fact that she cares so much and has been affectionate.

So that has been our day. Please pray things turn back to normal.
Love Charisse

Random Stuff and Medical Update

2009-03-03T20:44:00.000-08:00

Hi Everyone,
it feels like it has been forever since I updated. We have been busy, busy, busy. We have had multiple children's parties and birthdays. Isaac is also at home now on a Wednesday from about 12pm. He is gaining a lot of rest from having Wednesdays at home. Last week was his first week doing this and on Thursday and Friday he coped heaps better with school and got all his spelling words right in his test :-) We were all so proud of him. He has been getting to bed a bit earlier too. I also feel like I am getting into a routine with homework, school, play and rest etc.

I have an IVIG infusion this Friday which I am not really looking forward too. But oh well. The next one will be in 4 weeks and then the trial of 5 weeks and 6 weeks. Hopefully my levels hold like the haematologist is expecting and I can then go 6 weekly instead of 4 weekly for these infusions.

I have been very clumsy lately. A couple of weeks ago I got my arm caught in a cupboard door. It was a spring door and I didn't realise it wasn't open properly and it flung back on my arms stretched up to the top level. It hurt. One arm didn't bruise and one bruised nicely (horrid looking).

Sunday night I was clever again and with my arms out over my head, pulling my fingers through my hair, I turned around very swiftly and smacked my elbow into the door post. A VERY loud snapping sound frightened me SO badly. I then ran into the kitchen, quite distressed, to get ice and was repeating over and over, "oh no, my arm is going to be black and blue!" I was quite upset and very much in pain. Fire type feeling ran down my arm to my wrist and fingers and t my shoulder and I couldn't lean on my arm. I was hoping I hadn't broken anything. The next day it was still really sore and I was nauseated. Took some maxolon which helped with the nausea but I couldn't move my fingers or wrist properly and certainly couldn't lean on my arm. However, guess what??? No outward bruising at all! My arm has no bruising on it! What a miracle!!! It still has no bruising and obviously I am typing properly now. I did go to the doctor yesterday and after making me do things, he told me I had bruised my ulnar and radial nerves inside my arm which is why I am having so much trouble with pain in my wrist and fingers. I still can't lean on my elbow or on my arm because I get shoots of pain. However, it is much better and I am not nauseated anymore. I have been able to use my arm normally but carefully with manageable pain :-) I am SO glad it is not broken. I can't describe how hard I hit that door post! So that is my adventure so far :-)

Some of the random things we have been doing as a family. Let me see. Oh yes! Below is a picture of Alan and I after a children's party that Isaac was invited to. Yes, Isaac was invited but parents also stayed. They had hired someone to do face painting and Alan and I decided to join in. Obviously Alan is a clown and I am a butterfly....in case you didn't know. Hehe. This was the end of the day and so Alan's make up is leaking a bit. He has white paint throughout his beard! :-)
Isaac didn't want his face painted but he wanted a snake painted on his arm. This is a mean looking snake! I was proud of Isaac having a go!

Another child's birthday party. Yep, Isaac was invited and Alan and I stayed as well. They went bowling! It was so much fun to watch all the 6 and 7 year olds bowl. Hehe. Isaac actually won! Alan helped him with the last 2 goes because Isaac was tired. I was SO surprised at Isaac picking up that bowling ball and hauling it to the ramp!

Below is a picture of Isaac and one of his best friends from school.....mucking around by the seats saying they were stuck and laughing. It was cute. Action shot!

Another photo of Isaac and 2 of his best mates! In case you are new....Isaac is on the left.

An action shot of Isaac bowling using the ramp!

More random stuff. You have probably all heard about our devastating fires here in Australia. They are in a different State to where Alan, Isaac and I live. However, Isaac's school is buddied with another school in that State. That school lost practically everything we are told. Some members killed and all sorts. So Isaac's school had a "funny hat day" to raise money for this school and the community. This is one of Isaac's best mates with his funny hat. If you wanted to wear a funny at you needed to donate money to the cause :-) The junior school raised about $3000 I think.

Here is Isaac's funny hat. Hehe. A turtle shower cap on top of a normal, karky (sp?), bucket hat. Very cute.

Funny hats!

We have been up to all sorts. Alan has a personal trainer and he has been doing this for about 9 weeks. Things are going well. This was on a day where his personal trainer had upped his training to a new level. He fell asleep after his training and Isaac decided he needed to be "doctored". Out came the medical kit and Alan had his arm bandaged, temperature taken, heart listened to, blood taken....you name it, he had it. Hehe. It was cute. Alan is now used to this new workout and not sleepy anymore :-)

It is interesting what Isaac gets up to when you are asleep. I declare! This is after Alan has done some training at some other point. He is wearing his training clothes and is most likely almost asleep. Hehe. Isaac has everything piled high on top of Alan....hehe

We had prayer meeting as we always do on a Thursday night. I know it was a night that Isaac was calling out more than usual. Then he went quiet and we knew he had fallen asleep. After everyone left that night which was close to 11pm, we walked around the corner to see Isaac asleep in the doorway. Hehe.....cute

Random stuff again! Haha! Uncle Darren (Alan's brother) and Aunty Angela have a new puppy. Well they got one a few weeks ago now. His name is Dexter and we went to visit. He would have grown a lot since this visit. Here is Alan having a cuddle....hehe

This is such a sweet photo of Dexter! Awwww......little baby puppy!

At least once a year we head off for a visit to the Big Rocking Horse which is one of our attractions here in South Australia. It also has an animal park where you can hand feed the animals. Here I am in my great, comfortable, pink dress.....hehe.....and groovy hat!

This is at the very top of the Big Rocking Horse. It is quite high up!

Such a flattering photo of myself.....NOT!! I thought it was amusing!

Going up the first flight of stairs.....

The first level :-)

Going up the stairs to the second level :-)

We went up the rocking horse twice. However, I didn't go all the way to the top on the second round. I thought I would take a picture of Isaac and Alan way up there on the head.

The little rocking horse beside the big one. Every year when we go, without fail, we take a picture of Isaac on this rocking horse and you can see how big he has grown since the last one!

So that is some of our excitement! Well today when I was helping Isaac with his homework, Alan decided to get on the roof to clear some gutters. We have been having rain the last 2 days which is a miracle!!! We are SO dry here in South Australia. Praise the Lord for the rain. Hehe. Anyway, so Alan is on the roof clearing the gutter and Isaac and I are doing his homework and we here a BANG and a SCRAPE. I said to Isaac, "what was that? I hope daddy is ok". Hehe...but I didn't think to go and check because I then heard footsteps again. Haha. Well when Alan came in he had reddy colour on his white shirt. It was all smugged and I looked at him and said, "Is everything all right out there?" and he started laughing. He HAD lost his footing and slid about half a metre or so. Heart pounding reached up to grab the vent from the toilet on the roof to stabalise himself and pull himself back up! He is SO lucky he didn't fall off the roof! Praise the Lord for protecting him. So yes.....that's Alan for you! Haha.....hehe. I am glad we didn't have a tradegy though.

All right. I cancelled my port surgery for sure. My neutrophils are back up again. Platelets are bouncing everywhere right now which always makes me feel uneasy so keep praying.

Nothing else to report. Keep praying for the Cliftons and little Emma as they sort out what they are doing with the monosomy 7 report that came back from her bone marrow aspiration/biopsy. Please keep Delia in prayer as she has begun her journey with here Bone marrow transplant and John Hanna as he recovers from his ear surgery. I could name so many other FA families! Keep them in prayer.

Thanks for checking up on me!

Love Charisse

No Port now...and other updates :-)

2009-02-20T17:33:00.000-08:00

Well, after seeing my haematologist again and having yet another discussion about the mediport, we have decided to not have one now. Because I do have lower neuts and are not using medication to increase my neuts because of the risk of leukaemia.....we are preferring to not have a port as long as we can get away with it. I am also not planning on transplanting. That was a decision made a while ago and so having the meds to increase the neuts just for the sake of a port is not worth the risk of leukaemia. We want to keep my marrow as stable as possible because I am not choosing transplant. I suppose I could always change my mind but I have a peace. I was worried about the port because of risk of infection and right now I am SO well and live reasonably normally from day to day because I don't get many infections. My neuts are between 500 and 1000 on a regular basis......except for that freak drop a month ago to 200. The other thing is that the port is for the IVIG alone and nothing else right now and my haematologist thinks that my levels of IgG may now handle me stretching from every 4 weeks to every 6 weeks now. That will also give my veins a break. So we will be trialing 6 weekly. I will have a couple more times of IVIG at 4 weeks and have my levels tested and then have it 5 weekly and levels tested and then 6 weekly and levels tested and we will see if I can tolerate it. It would be great to have them at 6 weekley as opposed to 4 weekly!

I am aware that if this treatment does get more intense or my veins completely shut down that the port may be necessary no matter the neuts but we will deal with that when and if that happens. If I ever had a transplant, some kind of line is put in anyway.

Yesterday I went to see my gynae/OB about the results to a few tests. All is well but due to some other reasons we might have to use ultrasound for cancer surveillance as opposed to a hysteroscopy for a while. No bad reason for this......but a good reason for it. Also we rang the Women's and Children's Hospital and they are happy for me to come back there for blood tests as they can use paediatric needles to access my tiny veins. Adult nurses are forever poking away but these people leave little trauma. I went there yesterday and they make blood taking SO easy! They use a butterfly needle which is real small and it is very easy. No pain and no trauma. So had bloods yesterday and will get results on Monday.

Well Isaac has been in year 1 at school for 3 weeks. Isaac loves school and the teacher tells us he is like a "machine". He sits there with great concentration and works so well. He is very particular with his work. Isaac even got a prize last week for being the best boy worker! We are proud of him. However, on a Thursday and a Friday he is really tired and grumpy. Yesterday when I went to pick him up he looked unwell! He was pale with really red eyes. I even asked him if he was ok! The teacher sat down with me for about 20 mins and explained that Isaac doesn't seem to be coping on a Thursday and definitely not a Friday. That is is such a good worker but his eyes glaze over on a Thursday afternoon and on a Friday is becomes very vague. They have a spelling test on a Friday and he wrote words like he couldn't even write! That is not him. On Thursday night when I tested him at home he got them all right. She thinks he is just too tired and so to help him out suggested that, if it is not a problem with us, that Isaac only has a half day of school on the Wednesday so he can rest. She told me that they do no new work on Wed afternoons. Isaac is a big sleeper. Before he started reception last year he was sleeping for about 1.5 to 2 hours in the afternoon still. He actually needs a lot of sleep to function. So year 1 is obviously very busy for him and he is concentrating so hard that he is getting exhausted. So for the rest of term 1, Isaac will have Wed afternoons at home from about 12pm. She suggested him not being woken for school on Fridays. However, we thought we would try the Wed thing first and then if he still isn't coping, let him sleep in on a Friday and have him at school by 0930am instead of 0825am. She said that with this extra rest he can then concentrate on the things that are important and I agree. Isaac is one of the littlest in the class and the teacher thinks he is just that little bit younger too. Oh well....he is a hard worker and quite bright. She thinks he is an incredible worker.... We are also trying to get lights out at night by 7pm instead of 7.30pm. It is actually really hard. Because of daylight savings it is still bright outside at 7.30pm, let alone 7pm! We pull all the blinds down but still........night time routine is quite busy! This drama with tiredness only reminds you how much 6 year olds are still babies in different areas. It is so important for them to have plenty of rest still.

Well, Saturday today. We have a kid's birthday party on this afternoon so that should be fun.

Tomorrow is church and I am worship leading tomorrow. I always get a little nervous but trust God that it will go well.

Last Sunday I shared something with the church and at the end of the service we had an alter call and I was called to pray for these people. God is stretching my boundaries. I saw Him work awesomely!

Oh! I dreamt about Teresa and Tyler Clifton and TS, Emma and Violet! Haha......it was such a vivid dream! Ha! Alan and I went to visit them and knocked on their door. There was lots of crazy moments and laughing. It was a fun visit.....hehe....if only it was for real....hehe

Right, thanks for popping in. Got to go. I am lazy today and haven't had a shower yet. Can you smell me? Hehe.

Lots of love,
Charisse

Fear

2009-02-10T05:40:00.000-08:00

Fear.......it takes hold so quickly, don't you think?

It is late. I should definitely be in bed. It is 1211am here. I am ready for bed but I couldn't go to bed without writing this post. I didn't plan on writing tonight at all. However, fear......that is why I need to write. Get it out!

Jesus can WOW you with amazing miracles that you see happen through you, affecting someone else. He seems to amaze me that way. Not only that He can and does do miracles within my own body with FA and with life. That amazes me and I shouldn't be amazed because He is God. How Jesus affects my life gives me an amazing buz and an amazing joy and I want to see more miraculous stuff happen through me and to me. I can't wait to see some amazing promises that God has promised me personally, to come true. He is a God of promises that will be fulfilled. He is not a God of empty promises. I have felt God and heard God.....Jesus and it is amazing. So why do I feel fear????

We were reading a Bible story for devotions with Isaac the other night. It really hit home as to how the human race operates. Basically, it was the story of Elijah the Prophet of God in the Old Testament. The King and Queen at this time in History were Ahab and Jezebel. Queen Jezebel was well known for worshipping other gods and not the true God.....Isaac, Alan and I call Him the "Jesus God"....hehe...so Isaac knows who we are talking about :-) She led her husband into this sin too. They worshipped a false God named "Baal". The Prophet of God and the Prophets of the false god, Baal....had it out so to speak. Do you remember the story? They both got a bull and killed it and offered it as a sacrifice to their god. Elijah put his on the alter with sticks and covered the sticks with water and around the alter too in order to show that it was impossible to light it with fire. The prophets of Baal did the same but didn't pour water over the sticks. They were both to call to their god and see who would send fire down from Heaven to burn the bull. Well while the false god didn't do a thing after all their prayers...so to speak, .....God, the Jesus God...the One and only......sent fire down from Heaven and despite the water all over the alter and sticks and stuff...the bull was all burnt up! What a POWERFUL demonstration of our Lord Jesus Christ! What a powerful demonstration of God's power! And......Elijah got to witness this amazing, mind boggling miracle! You would think that he would never ever doubt God again and that it had made his day!

Yet, still, Queen Jezebel threatened him with death and Elijah ran because He was scared!!!! Wow, what a turn of events. You witness something that is truly amazing and then in the next heart beat you run and are frightened......all because of fear. In the Children's Bible God asks Elijah why he has run and he says he is scared and God says that he must go back as his work is not yet done! TRUST!!!

As humans it is so easy to witness a supernatural event that affects you deeply and then in the same heart beat it is easy to get caught up with what is life.......and feel fear despite what you have witnessed. We need to remind ourselves over and over again what God can do and what He just did that was amazing!!

I find myself getting fearful of the medical so easily. I know God doesn't think badly of me because of that at all......however, I am trying to remember the amazing things He has shown me the last 2 to 3 months and the supernatural stuff I was talking about. God can affect so much more than we give Him credit for.

Something scary was mentioned on the FA group today. I don't think it was bad for these people to share and we welcome their experience and advise. Gladly......however, my mind has a habit of panicking. I know that I have pre-leukaemia and clonal changes and have so for years. So I suddenly panic when I read something and go looking for more problems because what if I am sicker than I am....when I need to be on alert.....yes, but I also need to rest in the promises that God has given me and TRUST Him as well because only when I do that do I feel peace. Having FA is scary. The complications that come with FA can be terrifying. AS a group, the FA Family manages together. I pray that God will continue to keep my body still ticking and working ok despite all the issues I have. I have to trust Him no matter how scared I feel.

Elijah saw something amazing and then forgot. We all do it. God has grace.

I just needed to get that out.
Thanks for your support.
Love Charisse

IVIG Infusion

2009-02-06T16:31:00.000-08:00

Hi Guys,

well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.

A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.

I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.

Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!

So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe

So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!

So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.

We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!

Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.

ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse

Visit to Surgeon

2009-01-29T23:20:00.000-08:00

Hi All,

I had the most frustrating appointment today with the surgeon who removed the cancer from my head!

I am VERY disappointed in this doctor and I actually don't think he knows much and he definitely never seems to think for himself in my case! I am SO fed up and certainly don't think much of him. He may be good with his scalpel but he has many faults!

The last 4 months or so I have been having trouble with the scar on my head as you all know. There is a section of the scar that is weeping and really sore and doesn't look right. It comes and goes in cycles of 2 to 3 weeks. One minute it seems really healed and a normal scar and then all of a sudden it has stuff on it and weeps and seeps and becomes real bumpy which was kind of like how the other cancer started off but a bit different. After the head and neck oncologist watching this for 4 months, and Alan and I.....I have become concerned because the cancer I had has a high rate or reoccurring on the scalp and if it gets into the lymph nodes it can spread and it can be quite agressive. Of course, I don't want to do that and after the last cancer fooled us for 12 months, I don't want anything to get bad if it is a problem. The doctors thought the other thing was nothing to worry about and it ended up being some rare tumor! I am acting quick on this just in case.

3 weeks ago my head/neck oncologist told me that the surgeon needed to see it pronto because it looked very abnormal and he wanted to biopsy it and see what was going on. The surgeon could only get me in 3 weeks later and guess what? The scar has gone through its cycle and it looks normal now. I knew what the surgeon would say. Nothing to worry about and all normal. That happened when I showed him before Christmas when there was a tiny scab from its cycle but not looking crazy like. Well......not only did he think it was normal, he didn't seem to take into account the history or my doctor sending me there. He said that he wouldn't act on it with how it looks and he would be crazy to touch me unless he had some reason! So I said, rather urgently, that what should we do then......should we make an arrangement that I call him when it goes funny again and he get me in the next couple of days so he can see it because it is quite bad and unusual. This doctor sits there all high and mighty, hand on chin like and says NOTHING! He wasn't even concerned about the scar he said. I kept trying to tell him it goes yucky and my head/neck specialist was concerned and so was I and about FA and that people with FA can die from leaving something that looks suspicious. He still sat and said nothing. I am sorry but what an idiot!

I got upset and raised my voice.....didn't yell but got real assertive and told him that he will cause me to get into trouble with my health if he doesn't check this out. That if he has no idea how to keep my body safe, then I would be my own advocate. He then said, "I am not av available to you 24 hours a day you know!". What an idiot. What a bad attitude as a doctor.....no concern, no wanting to learn about something that could make him a good doctor. Can't even think for himself. He said, "all scars hurt you know". SO I did my, "I am a nurse and a patient who is verey aware" routine which I know they hate but they got to know they are not better than me and I know what I am doing for my health. No one is gonna pull their "high and mighty" trick with me when they have no clue! I told him that I knew that scars hurt but they DON'T WEEP or BLEED like mine was. He said, "no". A simple no. I also told him that as a nurse and as a patient I have a responsibility to myself. I think that he is not seeing what could be serious and all I am asking is that we look into it. So I will call him when it happens again and he will see me. In fact, I am going to get Alan to do it. Doctors never refuse him. I will go back to my head and neck specialist in a week and tell him the surgeon is not really co-operating and he said that if it gets real bad we will get a second opinion. I don't want to be cut open. I am not surgery happy but I do want to know why my cancer site is doing this and I don't want to be stupid.

When I asked, "can't you understand what I am saying?"...he just stared. However, the nurse in with me said in front of him, "Yes, I understand what you are saying and think you are making sense.....". Praise the Lord someone understands.

I feel cross now and it has been hours since the appointment. FA is hard enough without doctors making it extra difficult!

Phew! Thanks for letting me get that out. I am so tense. I am just trying to take care of myself *sigh*

So this sagga continues. I don't like going to new doctors when one knows your history already.

Anyway, that is my update. I have to get ready for a "Meet the teacher meeting" as Isaac starts year 1 on Monday! Wow!
Love you all,
Charisse

Counts

2009-01-27T18:40:00.000-08:00

Hello All,
I hope you like my new background. Yep, I know, I know....the words are a little harder to read with this background...but I love the background and want to keep it for a while. Also, I chose it so that your eye muscles get a good work out....hehe...haha.....hehe. Sorry.....

I had my counts repeated on Wed last week and to my relief my platelet count has come up to my average. I practically hugged my doctor when I was told and felt SO relieved. I can tell you having it drop so low was scary and I hope it doesn't do that again.

As for my neuts (ANC), they are still low but climbing up again. On Wed they had gone up from 200 to 350 and I am usually over 500. So really I fluctuate between 500 and 1500. Normal is about 2000. Labs can differ with that normal. It was good to see the count climbing again and I will be much relieved when it is up again. They are not high enough to have a port inserted yet though.

As for the port, I am not sure I am going to have that done now. My haematologist was not too keen on it since the idea was presented. A bit of history. The nurses at the cancer center constantly hassel me about a port. I have difficult veins and the last year have had very sore veins. They get upset and don't want to prick me but also feel bad if they have numerous goes which is understandable. However, I have not ever felt comfortable about a port.

I have lowish neutrophils (fight infection). Often I hear of people with FA or bone marrow failure having neuopgen injections to increase their neutrophils. However, research has shown that these injections can increase the risk of leukaemia in an FA person's marrow. In fact, it can cause this. Because my marrow is pre-leukaemic we avoid this drug because it would cause me trouble and I don't want my marrow to go into full leukaemia. However, that means that I just plod on with neuts that are lowish. Now, in general life....for me this isn't a problem. I seem to have neuts and platelets that work heaps better than their level. I am still careful but I am in no way suffering majorly from infections and stuff. My problem was the immunoglobulins that I have the infusion for. However, with having a port that is not a part of you.....it is foreign to the body and allowing access to the blood....having low neuts is not really a good thing because low grade infections can start and stay in your body. You then need to be hospitalised for IV antibiotics and sometimes even have more ops to replace ports. I am not having a transplant so I am not in hospital correcting my marrow........I can understand why my haem was worried and I have been worried too. This port could cause more problems and strain on my marrow than it could be good for me. So what is my solution if my veins are so bad! I have to trust God and see what happens. I am not comfortable having a port with this type of risk! I don't want to be sick and I certainly don't want my marrow thrown around or upset from bad infections because of a port. So far, I am going really well and am very well! Does any of this make sense? It is so hard to explain on email or computer. There are other reasons as to why I don't want a port as well.....but with my haem so uncertain and me feeling uncertain, I believe that God put a stop to the operation so I could think more about this. I will see my haem in 2 weeks and have another big discussion with him. God has always provided me with solutions when I have been in a difficult spot!

However, my counts were fine for my gynae procedures under anaesthetic. I had a pap smear and a hysteroscopy. I get results in a week or two.

ok, it is 44 degrees C here today (111 degrees F). I have a doctor's appointment to get to. Please keep praying. FA is a constant battle with counts and all sorts! Thank you for your prayers and support. It is greatly appreciated as I do get very worried and stressed. However, I must stress that God is amazing and He continues to encourage me through every worry and burden and He works wonders with my health!
Love Charisse

Surveillance, baby, blood counts, pictures

2009-01-21T04:30:00.000-08:00

Hi All,
well I had bloods taken today to see how my neutrophils are going. I didn't ring for them this afternoon but will know in the morning as I have another procedure booked. I am having my usual surveillance of a hysteroscopy and a pap smear under a GA. It doesn't really matter too much if the neuts are lowish for these procedures but they needed to be checked anyway. I hope that the platelet count has recovered because they did a strange drop that has concerned me. I hate it how that happens. So far, whenever that has happened I have recovered but I get really concerned if a trend may happen. As I mentioned in my last post, I know that God is doing something in my life despite the physical manifestations of FA in my life. It sounds crazy but if I told you all the details about what God has been doing some of you would think it amazing and others would probably be not sure what to think. I press onwards in faith with what God has actually revealed to me and because of this I have hope. However, it still gets scary with this walk.
I am still very worried about my head where the cancer was removed. It is not acting normal so on the 30th I will be seeing the surgeon again to work out what is going on and that may need to be re-opened. May be they can do a biopsy first before re-opening to rule out any re-occurance of cancer. Oh dear. God has things under control but the way He works makes me feel confused sometimes. I must hold on to the clear promises He has made me because God does not give empty promises. I press onwards. However, I am human and clearly worried about things.
On a good note though, I am seeing the fruit of some promises that God made to me years ago and this is exciting because it proves that God is not full of empty promises and He keeps His Word. I am not going into detail but when the time comes I will tell you ALL ABOUT IT!!!

So please pray for my blood counts that have me really petrfied right now. I am holding onto God's promises!
Below is my beloved Isaac and myself! I think this is a cute picture which I took on my phone. We "adopted" a little boy from Africa through the Christian organisation, "Compassion". He is such a sweetie. Isaac thought that we adopted him for real, as in living at our house! He was so excited and talks all the time about being a big brother! Shame.....but we will be able to make a difference in this child's life. Isaac has already been writing letters to him and drawing pictures. I am yet to write my first letter and send some family photos and at the same time, send it in the post to our dear little 4 year old boy! God is good. It is great to be able to help other people. A new addition! Don't I look like a natural???? As I was holding her my heart felt full of love!

Ha! She is not ours! I wish I was able to annouce the birth of another baby of ours! I long to! Ha! My good friend, Rachelle, had her baby 3 days ago. A little girl. She already has a little boy. She is so gorgeous and today Alan and I went to visit and enjoyed a great chat with the parents. I was able to hold her pretty much the WHOLE time we were there! I felt like I was looking down on Isaac for she is so small...Isaac was smaller but her smallness reminded me of Isaac. How I long to hold another one of my own in my arms. It is one of my dreams again!

Ha! Isn't Alan a natural? Look at him chillin with the baby in his arms and on his knee! Yep, we would look good with another addition to our family! Congratulations my dear friends! Thanks for letting us hold your beautiful baby while we were there!

This is a cute shot. Check out the dummy or pacifier as said in the States :-) Alan you are a natural! Haha!

Well I thoroughly enjoyed time with our friends at the hospital. Rachel is so easy going and that is a credit to her. Both her and her husband are dear friends and I always have a great laugh with Rachelle! She cheers me up SO much no matter what is going on in my life and she encourages me in my dreams! She walks with us in our faith walk as well and I just want to say thank you.....and thank you for letting me cuddle your baby as it meant SO much to me beyond belief!

Well, I have to get up early tomorrow at 0630am. Rachelle is in the same hospital as me tomorrow. SO if she has not gone home after my procedure and I have woken up from my anaesthetic, I might pop in and see her :-) She said that would be fine.

My sister is due her baby in about a month and a bit. I will be an aunty again! So many people having babies. I know of 3 people who had babies this past week! Awwww.........tears in my eyes :-)

Thanks for the support and keep praying. We have some hurdles to get over while we achieve our dreams at the same time :-)

Love Charisse

Port surgery cancelled

2009-01-15T23:38:00.000-08:00

Hi All,

well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.

To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.

Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.

Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.

I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.

I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.

I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.

I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.

I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!

My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.

Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.

I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.

Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse

My Head

2009-01-10T21:54:00.000-08:00

Hello Everyone,
well we have been busy here. It is still the summer, school holidays. We have 3 weeks more of holidays. In total, Isaac will have had 7 weeks school holidays at the end of all that! Wow! I have thoroughly LOVED having him home. Usually mums tell you that they get restless and tired with the kids being at home. I have not experienced this these holidays at all. Isaac has been so well behaved and we have done so many interesting things. Isaac is not ready to go back to school yet either. He has told me that. He isn't even bored! I hope that he feels ready to go back in 3 weeks. I want him home but he will have to start school in 3 weeks. I hope he feels ready!

So this past Friday I had my IVIG infusion and it went really well. I am not feeling too bad. Yesterday I felt rather shaky and I have a bit of a headache and leg pain but otherwise I am ok.

My head scar is healing up ok. I have been having a bit of trouble with it though. For anyone who doesn't know, I had a small, cancerous sweat gland tumor removed from there some months ago.....4 or 5 months ago. The top of the scar is still quite sore and I get a sharp pain that goes down into my head. About 1 cm of the scar there is very tender and seems to weep easily. It doesn't bleed but stuff builds up a little and then gets really sore and then feels moist and I can hardly touch it! So I told the doctor about it on Friday and he looked at it again. He said it is not acting quite normal. He is a head and neck oncologist. The rest of the scar is fine and healing well. Still a little tender but not untouchable. He is concerned something is going on there. He said that my scalp could be just really tender and delayed in healing with FA and stuff....or that there is a stitch still stuck underneath there causing this problem or that there could be abnormal cell activity going on again......the cancer. So he wants me to go back and see the surgeon to get an opinion and he wants to wait 4 more weeks to see if it settles and if it doesn't he would like the surgeon to re-open the wound to see what is going on. He said that this should be done to see if a stitch is festering under there as well....and in the mean time they would take a biopsy to check for cancer again. So re-opening it would be the key. That means another surgery which I felt a bit sad about :-(

So please pray for a good outcome there.

This Friday is my surgery date for the infusa port going into my abdo. Everything is organised and there is no reason why that shouldn't go well.

Now we have been up to quite a bit here with it being so hot. Below you can see Alan and Isaac taking a swim in my parents' pool! Lovely! We went on a trip to the Museum with Isaac's best friend from school. Both families.....ours and theirs went and it was lovely. They had a special expedition about dinosaurs on top of the usual museum stuff :-) Isaac saw this panda bear and has been sleeping with it and babying it ever since we got it for him.....so cute!

Here are the kids having hands on fun at the museum, learning about "digging" up fossilised eggs and stuff.

I think the expedition was fun! What a cool photo!

Just before New Years in 2008 we went to the river with Darren and Angela, Alan's brother and financee. It was a lot of fun. Angela brought her dingy which had a hole in it by my bottom and we paddled around in it with water up to our waists!! Haha....hence the look on our faces! It was a windy day and we had to work hard while rowing! I laughed a lot!

Alan caught a fish.......not a huge one. One of the kids caught the biggest but the fish got away. These are Carp which are a nuisance and so you cannot throw them back in even if they are babies....shame

Isn't this a beautiful shot? By our little cabin by the river?

On to other activities. Alan and I went to a friend's wedding. We got all dressed up fancy like...hehe.....I didn't realise this picture isn't so big!

Ha! Jumping back to the cabins at the river.....aren't they cute?

Ah yes, now jumping back to the wedding. All dressed up! Alan and I on the left.

My sister and I going to our friend's kitchen tea which was a High Tea, a couple of days before. I felt all prettied up then as well :-)

So that is just some of the stuff we have been up to :-)

Please pray for me as I have my port inserted and my head looked at. Life has been exciting and continues to be.

Until next time!

Love Charisse

Our 10th year wedding anniversary, final pictures of Christmas Eve and Day 2008!

2009-01-01T01:40:00.000-08:00

Well it is the year 2009! Happy New Year again! I am recapping on some things that happened in 2008 and some final Christmas pictures.
One exciting thing that happened in 2008 was on December the 19th! Alan and I had our 10th year wedding anniversary! Yep, 10 years!!! I was 20 when I got married and Alan was 21. I am very proud of our 10 years. Not many people make it to 10 years these days........and we are no normal couple with the stresses of FA at our door step all the time. I commend Alan and am very grateful to him for sticking around throughout the hard times with FA. It should come naturally to any spouse but sadly, it doesn't and many people don't hang around. Well my guy is extra special. He takes care of me all the time and stands by me when FA gets tough. I love Alan with all my heart and I want to thank him for 10 wonderful years. I would never want to be married to anyone else. I want to grow old with him. We have had many challenges together like Isaac, our little boy, being born 13 weeks early. We spent 3 months along side Isaac's humidy cot while he was in hospital "cooking" some more so he could come home. That was a tough period but worth while! We have gone through many bone marrow biopsies together and scary results. We have endured the diagnosis of a small, serious, head tumor that was cancerous and had it removed. Alan stood by me in 2007 when I was seriously sick and hospitalised with pneumonia.......as you can see we have had plenty happen. We have had wonderful things happen as well though. Alan is my best friend. I have enjoyed all the laughs that we have had.....and will continue to have. I have enjoyed going to the movies together and having romantic evenings! I have enjoyed our family holidays and outings. I am proud of what we have achieved as a couple with Fanconi Anaemia Australia. Alan has put a lot of time and energy into FA Australia to get it to where it is.....our first camp last year was a real milestone. Overall, I have enjoyed being married to Alan and look forward to more crazy and exciting moments with him.....hehe....Thanks Al!

So I actually planned a surprise gathering for him in his honour on the night of our anniversary. My cover was that we were going out for a romantic dinner together. Then we were going to walk by the river and come home for a nice night together. Meanwhile, he did not realise that I was planning a surprise party. I contacted all his friends and my friends.....people who are significant since we got married. Once Alan and I left for dinner, I told both parents and they came over to set up for the party. I had ordered a cake and had made a "photo board" of our journey together as a couple. They set it up for me. Alan and I actually did go out for a romantic dinner and a walk by the river but I had to get him home by 8pm for the surprise party. It was difficult....hehehe.....because I didn't want him to know. One of our friends, hehe.......even rang Alan's phone and asked if they were supposed to be at our house for some anniversary thing! Haha.......if you are reading, you know who you are.....hahahahahaha!!! Alan thought he was pulling a prank! Hahahahaha! I managed to get Alan home at 8.30pm and he got a BIG surprise! Haha! He said it was his first surprise party! Haha! I haven't got the photos from the actual party yet. I need to get them off of mum. However, Alan and I took some photos of ourselves while walking down at the river where Alan presented me with a beautiful bracelet with some diamonds in it :-) See our photos below!

In case you have not noticed.....I rather like wearing this dress :-)

This is the photo board that I made for Alan. The journey begins. It is hard to see but the first number of photos are of Alan and I at my 19th. We were just courting then. We went to see the Phantom of the Opera......then our engagement, my bridal shower, the wedding, the honey moon, our first Christmas on our honey moon, our African holiday, with child, Isaac born and now.......

I took a photo of this photo on the photo board.....haha! I am 19 here, Alan 20....we were going to the Phantom of the Opera together!

You can't see this very well.....another photo of a photo because I couldn't be bothered scanning :-) This is us kissing at our engagement.

The picture of me holding the cat is one of my only pictures while I was pregnant! The others messed up! What a shame! Also you can see one of Isaac when he was born. He was only 27 weeks gestation when born.....so tiny!

We were on our honeymoon when we had our first Christmas. In the Flinder's Ranges here in Australia!

My 30th birthday party down on the right.....in our formal wear!

The board again....

Ok, I never got to post our Christmas Eve and Day photos. Here is the cubby we got Isaac all "wrapped up"....hehe. He loves it!

Christmas Eve......the cat's Christmas Tree, their presents and Santa's milk, cookies (eaten) and carrot....hehe

Isaac sleeping! I did move the snuggly from his neck. It wasn't wrapped around. He was VERY asleep!

Our stockings hung up! Isaac's is very full! We just had lollies....that's all we needed :-)

Christmas Eve......Isaac goes to bed...no presents.....he wakes up in the morning......presents!!! I used to love that about Christmas morning and still do!!!

Christmas Day photos are out of order. This is Alan's Aunty's house. His family was there for Christmas Day. We went there for Christmas tea or dinner. It was a warm day and Isaac and Alan went in the pool with Alan's cousins

Me....in that dress again.....at Alan's family's house

Uncle Darren.....Alan's brother....I think this is a sweet shot....he was being silly though..hehe

Aunty Angela......Darren's fiancee...nice shot :-)

The Fam!

Me with my Christmas present.....a video camera!

Over the last year or so, Nanna (Denise) and a whole lot of other family members have been knitting Isaac a big blanket . Nanna gave it to Isaac this Christmas because it is finished! It looks great!

Alan's mum (Denise/nanna), myself and Alan

Now this is my parents' house. We were here for Christmas Lunch. They also have a pool. Isaac got a radio controlled boat for Christmas from my mum and dad. I was having a go at "driving" it! Yes, yes, I promise that Isaac drove it the most!

Christmas Lunch! Doesn't it look yummy! Seafood!

Isaac and his radio controlled boat!

Isaac having his lunch!

Isaac and Eliana (cousin, my niece) laughing and shouting something like, "Presents, presents" Haha!

Alan and I by my parents' Christmas Tree!

Isaac posing. He is cute.

Now this is at the beginning of Christmas Day. At our house. Alan in his PJ's .....hehe......he got a GPS for Christmas from me :-)

Isaac setting up a bigger and better track with him new Thomas accessories that he got for Christmas!

Isaac and his Thomas accessories that he got from Alan and I and Santa for Christmas....haha There is Rollercoaster Moutain, a railway crossing for cars and extension tracks.....

Opening presents

Transformers! Thanks Aunty Jacqui!

This is the railway crossing that Santa got for Isaac. For weeks and weeks up to Christmas Isaac didn't know what he wanted and he said, "you decide". So I did. Then we went to see Santa a week or two before Christmas and Isaac asked him for a railway crossing where cars can cross over to add to his Thomas Track. Ever since he asked that day he kept mentioning it every day. He would say, "I hope I get that crossing for Christmas..." Well we looked everywhere for one! Ha! We couldn't find one. We went on the net and everything was in the USA or UK and would not ship to Australia. Then we went to e-bay and guess what......?????? There is was!!!! New and not used and right around the corner from our house....kind of! Haha! God was kind to us and answered our prayers.....so Isaac got what he asked for! Haha!

Well, I hope you enjoyed the photos....they were backwards. That closes Christmas for last year (how weird is it saying that????)

Happy Anniversary for another year.....11 years at the end of this year.

We did go on holidays to the river for a couple of days. I have some photos of that too.......so more posts to come!

Medically, I have infusion coming up this Friday and my infusa port surgery the next!!!

Love you all,

Charisse

Happy New Year!

2008-12-31T06:30:00.000-08:00

Happy New Year everyone! It is 1.01am here....we have already started our journey in the year 2009! I am excited and nervous all in one! What does God have in store for me this year? How will my health hold up? Will I see another new year? What exciting things will happen? Where will God lead me? So many questions. I am SO grateful to Jesus for allowing me to still be here and enjoy my family and friends.....my darling Isaac and my beautiful, yet, handsome husband. It has been an exciting night.
Well, I still have plenty of posting to do. I will get to that later!
Happy New Year!
Love Charisse

Lobethal Lights!

2008-12-28T02:05:00.000-08:00

We went to see the Lobethal lights on the 23rd of December up in the Adelaide Hills. Darren, Alan's brother, and his fiancee, Angela, came with us. Both of them had never been to Lobethal at Christmas time. Angela had never been to Lobethal at all. Lobethal is a town in which almost every house lights up with Christmas lights during the Christmas season. It is beautiful. So here are some photos of one of the houses we went to. You walk through their yard and everything. These photos are done on my phone because I accidently left the camera in the car. All the lights you see are spread across their huge front yard!

This is actually a hot air balloon with reindeer in it .....hehe.....not a real hot air balloon....a fake one. It is real big in real life :-)

This is still the same person's house.

Haha! Santa in a helicopter. You can now see the front of the house behind this helicopter! In the distance are more lights......

Their front yard....it is bigger than it looks in the photo

More of their front yard. Heaps pretty in real life :-)

More of their front yard...and the house behind. In all their windows they had Christmas stuff. Whole rooms decked out with fake snow and Christmas trains and all sorts! Amazing!

See how big the front yard is?

We actually got there at about 7.30pm I think and they have a parade down one of their streets. It was light at that moment. It only gets dark here at 8.30pm right now. Here are some pictures of the parade. They make their own floats, I would say.......a very sweet and festive parade. Below is Uncle Darren and Isaac watching the parade. Alan and I go almost every Christmas to Lobethal. Isaac REALLY likes Christmas lights! This float is to do with the baby Jesus I think.

Wise men and their camels :-)

Shepards and camels? Hehe

A band...obviously!

I don't know what these are....but they are cute and funny and very festive!

Lots of balloons obviously.......very interesting......

Hehe...one of their own floats.....advertising may be? It is cute anyway.....

Haha! SA Ambulance!

As you can see the whole town is pretty much in the parade! This is another float to do with baby Jesus!

These are old baths made into trackters! Haha! Very creative!

A clown with a funny bike and beard!

Even a huge semi-trailer!

The back of the truck!

Angela, Darren, Isaac and I (nice shot I think!)

Hehe....indians!

On this trailer were little kids dressed as Angels :-)

Very festive.....giving out lollies!

Big motor Bikes!

Of course, the "Merry Christmas" sign!

The other part of the sign :-)

Their own Santa! I think his outfit is a cheap outfit, don't you? Hehe

Every night, Lobethal church puts on a live Nativity scene with real animals and people and a real, baby Jesus. Isaac enjoys watching this and so do Alan and I.....this is not my new camera taking this shot.....hehe. It was hard to get a good shot. There were SO many people watching and I couldn't hold the camera still as I held it up in the air! It was a sweet play. Nice Christmas Carols :-)
So the nativity play started at 8.50pm and then we went and drove around looking at lights. It was a fun night!

Well I hope you are not sick of all my photos because I have plenty more coming. If you miss out on an update and want to catch up, just scroll down. I am updating frequently with all the photos and things we have been doing. Tomorrow we go to the river with Darren and Angela and so I will video more and take more photos! I will update soon with Christmas Eve and Christmas Day! Haha! I just want to share all the exciting stuff with you all. I also want to update photos from our 10th wedding anniversary and the surprise party I threw for Alan! Haha....so I will try not to overwhelm you all but updating about it all is fun! If you missed the last update about our visit to Santa....scroll down for a peak....fun photos!

Medically, I had my annual ENT visit and scope which was totally fine! Coming up on the 9th of January I have IVIG and then the 16th I am having the abdo infusa port inserted.

Thanks for checking in!

Love Charisse

Christmas Part 2 - visiting Santa

2008-12-27T02:16:00.000-08:00

Remember how I mentioned there would be several entries from Christmas? Well this is part 2. I wrote a small entry last time with 3 pictures or something but I didn't have time to post our adventures properly. So this section is about how we went to visit Santa a week before Christmas. I love Christmas so I wanted to share with you the photos from each event. I hope you don't get bored! Ha! Also, it creates memories for our familiy :-) Sorry if there are any photos that are repeated from the last post......there should not be many repeated. These are all new.

So on Thursday we have a nanny to help me out. Danielle has been our nanny for 4 years. She has been such a great nanny as I mentioned in my last post. I want to honour her again. She completed her teaching degree this year and next year is going to be a teacher. She can no longer be our nanny next year, but she can be our friend. We are blessed that she has become such a good friend and look forward to many years of friendship with both Danielle and her boyfriend, Chris :-) Thank you, Danielle, again, for everything.

Thursday before Christmas we had an outing to the Magic Cave in the city. It was PACKED!!! So packed that at times I felt like I couldn't breathe! I was also very hot and sticky. We all felt like we needed air, but it was still fun. Here are some pictures from the Magic Cave where Santa lives....when he comes to Adelaide :-) This is his sleigh........apparently........ I can never work out why they only have one reindeer pulling the sleigh? Hey, is this real???

Danielle and Isaac (repeat photo). They love each other so much! Isaac really misses Danielle when she is not here. He says he misses her when she is not around. It will be a big adjustment for him next year, but since we will still see her as a friend, hopefully he won't be too upset :-)

At the Magic Cave they have these fun and silly mirrors that make your body look strange! Different mirrors that have different effects!

Now Danielle is tall in real life, but not this tall!!!!! I was having issues with my flash!

This is such a cute photo.....haha...Isaac looks cute and funny! He thought so too...that he looked funny that is :-)

I LOVE this photo! The variety of colours. The effect of the mirror. Danielle so tall and then my head at the top and then me small at the bottom of the mirror taking the picture....Ha!

Isaac and I on the Merry Go Round! It is blurred because we are going round and round.....wow! Hehe

There is a talking tree at the Magic Cave and his name is Dave. A guy sits behind this mirror and he can see the children. There is a mic in the tree and as the kids talk this guy can hear them.......and see them behind the mirror and the trees mouth moves and talks to the kids.....has a real conversation. Last year Isaac was so scared of the tree. He wanted to see it this time and hear it talk but Dave was having a rest......oh well.

So then Isaac wanted to see Santa but at the Magic Cave there was an hour and a half wait to see Santa and Danielle and I didn't want to do that. However, a nice lady mentioned to us that we should go down the street to Myer and see their Santa. No wait.....she said. So I talked to Isaac about going there to see him.....well I had no idea that they had a big "Santa Land" in Myer. It was bigger than the Magic Cave and more pretty, spacious and not nearly as many people. I think it was a better place! It had a big train for the kids to ride on, fake snow, Santa TV and a place you can email Santa......it had Santa in his Cave......I think if people found out about this they may prefer it to the Magic Cave! Isaac just thought it was the cave of Santa.....just that it was called Santa Land. When we lined up to see Santa.....well there was no line! He even got a "Santa Land show bag" when seeing Santa! It was cool and not as hot....you could breathe. So here are some photos of Santa Land where Issac had a BETTER time than the Magic Cave! I think we will go back here next year!
Isn't the tree pretty?????

The train that the kids ride on for free. Isaac went on it twice!

The track going all the way around Santa Land! Fake snow and coloured rocks on the ground that look like lollies. It was pretty!

The train pulling into the station....

Isaac on the train! Not many children! Such a great place though! Adelaidians......this is Myer. I advise you go there. Although if I advise too many people, it might become crowded! Haha!

A place for the children to watch TV!

The Santa Seats in front of the TV....heaps cute!

A free, little train ride!

Email Santa and he sends an email back straight away. It is real cute. It personalises the email to the child who writes an email....Isaac has his reply email on the fridge!

Then we headed into the cave to see Santa. They showed Isaac a picture of this reindeer on a computer with a carrot by his mouth. They told him that they needed Isaac's help to check if the reindeer had eaten and as he went in to see Santa, he needed to search for the reindeer and the carrot. Cute. It was life sized and Isaac thought it was a real reindeer and was quite unsure about the whole thing :-)

He is unsure about the reindeer but worked out later at home that it was not real .....hehe

Danielle, trying to help Isaac to be comfortable near Santa. Santa was showing Isaac a book.

Before we left, us adults had to sit on Santa's knee. I asked Santa for a new still camera and guess what????? I got a new still camera which is GREAT! You should see new and improved photos in the next lot of posts! It is a GREAT camera. Hardly ever blurs! Ha! I also got a video camera recorder! Yes! I have always wanted one of them. I was very happy on Christmas morning. Bless you Alan! Thanks.......Alan, I mean Santa! Ha!

I wonder if Danielle got what she asked for from Santa???? Haha...did you Danielle? Ha!

Isaac very happy from the whole Santa Land and Santa experience! (repeat photo)

Oops....this photo has been tagged on the end...it is from the Magic Cave before with the funny mirrors.....I am certain that Santa Land is heaps better!!!
So below are a couple of videos you may enjoy. The first video is at the Magic Cave. It is cool but you will be able to see how many people are there and how packed it is........I just think that Santa Land has a better atmosphere......see what ya think. The Magic Cave is still fun though. Double click for the video to load more quickly.

Below is the second video and this is at Santa Land, particularly of the train that Isaac road on. However, I think you can get the feeling of Santa Land and the nice atmosphere. You will also see how it is not packed and I just like it. I think it is really sweet. So enjoy!!! Double click on play.......

So I hope you enjoyed my post. As I said, I have many photos to come but have no time to load them tonight. I want to post about our visit to Lobethal which is a town here in Adelaide that light up almost every house with Christmas lights! They also have a parade down the main street, and a live nativity scene.

Then I want to post about Christmas Eve and the fun we had that night and then of course, with my new camera, I took photos on Christmas Day....I want to share them as well.

Amongst Christmas, Alan and I celebrated our 10th year wedding anniversary and I did a surprise party for Alan. I have photos of that memorable event as well that I want to share. So I will be posting a lot!

Well, right now I need to get ready for bed!

Love you all,

Charisse

Merry Christmas!!!!!! Part 1

2008-12-24T05:35:00.001-08:00

Merry Christmas everyone! Yep, I am up late. It is about 1215am on Christmas Morning here and I needed to wind down as I am incredibly excited! I have SO much to tell you on my blog but cannot do that tonight. I have millions of photos and videos from our adventures the last week.....I have only posted a few tonight as I don't have heaps of time. So tonight my blog says, "Part 1"...there may be another 3 more posts to get through all I have to share about our Christmas adventures.....so keep checking cause it is all SO exciting! Ha.

Now the pictures are out of order....I didn't think clearly enough about that when I loaded them. Here is Isaac exiting the Santa Cave in the city.....it was called Santa Land actually. The "Magic Cave" which is the typical one is in another store.....but it was SO packed, there was an hour and a half wait to see Santa....so I took Isaac to this cave and it was even better!!!!! I will have to post another post to tell you about it. So he was very happy when he left. Danielle, our nanny, was with us this day and we all had to sit on Santa's knee.....hehe ....and tell him what we wanted for Christmas. I want to honour Danielle. She has been working for us for 4 years now. She has now completed her teaching degree and next year, she is a teacher and won't be nannying with us anymore. We have interviewed and found the perfect replacement for Danielle's job. Her name is Melissa. On another blog entry I want to honour Danielle more and introduce you to our new nanny. We are blessed that over the last 4 years we have become close friends with Danielle and her boyfriend, Chris........they will still be very involved in our lives and we are excited to continue to hang out and know them. Thanks for everything, Danielle! You look beautiful in these photos!

Me with Santa! Haha! It felt odd sitting on his knee!

Isaac and Danielle in the "Magic Cave" which is where we went before "Santa Land". You can see how much Isaac LOVES Danielle....and likewise with Danielle. They really do love each other. She has been such a blessing to us and such a dear friend to Isaac! I think this photo is a sweet one of them both!

Trying to help Isaac feel more comfortable!

Now, I have heaps more photos of this great outing but as I said....no time tonight! I will continue to post after Christmas Day which is NOW!!! I need to get to bed.

Have a wonderful Christmas everyone! Keep safe and enjoy your families! Happy Birthday Jesus! If it wasn't for Jesus, there would be no Christmas and my life would not be as full as it is. I LOVE knowing Jesus! The Christmas Eve service tonight was so special I even had a tear in my eye! I have photos from that too.....so more posting!

Merry Christmas!!!!!!!!!!

Love Charisse

Isaac's Presentation Night AND Christmas Lights!

2008-12-13T00:19:00.000-08:00

Hello All,
well the last few weeks have been really busy. Isaac has now officially finished the reception year at school and next year he will be in year 1. For those who are confused we have preschool or kindy when they are 4 and then reception or pre-primary when they are 5 and when they turn 6 they are in year 1. Isaac was in reception this year. He attends Tydale Christian School and I am very pleased with this school. They even had a Presentation Evening where the kids "graduated" from reception and were presented with a certificate. It was SO cute. It was held in a theater type room. Sorry the photos are so small and even blurry as we were up on the balcony and it was hard to get great shots. Below is a picture of what the whole stage looked like. The words say, "Christmas in Australia" because not only did the kids get awards but they had some special songs and stuff planned for the adults. Here is the school blanner. It says, "Tyndale: God's Truth Provails"

Here is the reception co-ordinator (or something) and the Principle of the School getting ready to give the awards. The Junior School Principle is at the podium.

One of Isaac's friends receiving his certificate.

Unfortunately this picture of Isaac is rather blurred but this is him receiving his certificate! Yay!!! The kids were so brave going out in front of the whole crowd because the theater was packed full of parents and grandparents! It must have been quite scary! As they walked out of the curtain, the kids already had their proper hand out that they had to shake with the Principle and us adults all had a little laugh. They were obviously trying to remember what hand to shake with and what to take the certificate with! We are SO proud of Isaac. I had tears in my eyes and felt so emotional! Haha! My baby is growing up into such a beautifully, handsome and kind boy! He is also a rascal!

This is how far away from the stage.....where we sat! However, the camera makes it looks so small and blurry. We were able to see well

The kids singing the songs they had prepared. This Presentation Night was for the Receptions to year 1's only. There were 3 reception classes and 3 year 1 classes and each class had prepared something to perform. They also sang all together, in costume, on the stage! They were all Australian Christmas Songs!

See the lady....well the teacher at the front facing them? She is wearing a red hat? Well Isaac is in the green facing her, in front of her with the green Christmas hat and the green tinsle around his neck. He is on the left of the little girl in the red who is standing directly in front of the teacher. Isaac was real cute while singing. I think he had a bit of stage fright at times!

Isaac and his groupee after the presentations and performance......cute

Good friends of Isaac who are in his class...

Isaac's best friend at school....showing their certificates! So cute!!!

Alan, I and Isaac. We are very proud of Isaac!

Anyway, those are photos or his presentation night. On to more photos! We have been very Christmasy at our house. We have our tree up and we have lights on our house which look great!

Off the topic, I entered in this photo because Isaac insisted that his horse eat with us one night and it was cute. It had to wear Isaac's Christmas hat and had fake food and so on. A night at the dinner table.....check out Alan's face......hehe......sorry this photo didn't have much to do with the Christmas tree and lights.

About 2 weeks after Isaac's birthday on the 8th, we put up the tree. It looks real pretty. This is it with the lights on in the room. Such a pretty tree with our Christmas train underneath!

This is it with the lights off....in the room that is. I think it looks gorgeous!

We always struggle to take good pictures of our light display on our house and in our garden. We have a little candy cain display in our garden. We call it the candy cain forest.....hehe...we have lights on our roof and lights in our window and in our bushes at the top of the house! I wish the camera was better or may be it is me......but in real life, our house looks real great! We have a town around here that lights up almost every house and it is beautiful. Alan and I like to joke that our house is a mini "lobethal"....hehe.....anyone living near us, you are welcome to drive by and check out our house!

These do not do it justice!

The roof lights and blue candy cains, window lights and our wooden poles .......

Is this a better shot?

The roof lights are all different colours but you can't see that here :-(

A far away shot.....still can't see our coloured lights except for our blue candy cains....oh well!

Anyway, Christmas is not far away. I have almost finished our Christmas shopping. All the main family are practically done. It is now just some extended family! Busy, busy, busy!

I had IVIG infusion on Friday which went really well. I am feeling a little wiped out today but ok. Mainly I have what I call "infusion flush" where my cheeks brighten up real red and hot. It has also happened to the top of my shoulders this time. Last night I had weird legs from infusion and today I just feel tired. Hopefully it won't get worse than that. Tomorrow I will know!

Ok, Alan and I are going to relax for the evening!

Love you all,

Charisse

Date of Surgery

2008-12-08T02:10:00.000-08:00

My visit with the paed surgeon went very well. He is really nice and reminds me of my haematologist who went to Canada a while back.....who is back in Australia, Adelaide, next month! Yay! Anyway........got side tracked!

The surgeon is real nice and gave me all the risks and benefits of the surgery. He actually said that he has done this so many times he couldn't count! Ha.....he says he does both babies and people around my age and that the bigger the person is the easier it is to insert the infusa port. I think the adult surgeon just had no idea. Alan said when he rang to cancel the surgery with them, they were relieved. So I think they just didn't know. The paed surg said there were no extra risks than normal surgery.

So I will now get the port done on Friday the 16th January. It is nice that I am not having it before Christmas. Surgery will happen as scheduled unless there is a reason that pops up that delays it :-)

Thanks for your support and prayer.
Love Charisse

Surgical Update!

2008-12-03T22:03:00.000-08:00

Hello All,

I thought I would update you on the abdo port surgery. We managed to get hold of the haematologists at the women's and children's hospital where I was diagnosed with FA and spent most of my "medical life". We also have good contacts there with Fanconi Anaemia Australia and the doctors. They recommended a Private Paed Surgeon to me. It just happened to be the first paed surgeon who my adult oncologist recommended for the abdo port in the first place. What happened was...the adult secretary rang to book me in with the paed secretary and they asked my age and since it was 30 they closed the door right there. This was a couple of weeks ago.

Isn't it always the way that if you do the ring around yourself you always get a bit further with the doctors? Alan is a good ring a rounderer (I know, not a word :-) ).

Anyway, so this is the same paed surg. However, Alan rang and told the secretary who we are and all about the port issue and she was very compassionate and understanding. The paed surg got in contact with Alan this afternoon and said that he is happy to do the surgery on me and insert the abdo port. He does it all the time and it isn't complicated! He said I can have it where ever I want, as long as there is some rib there to anchor it! This is great news. Alan says he sounds very nice. He knows what he is doing and it is no problems. So he told Alan what to say to the other adult surgeon when he rang ton cancel that surgery. I really wanted that other surgeon to know how he had made me feel. I think he will understand how I felt with the change in doctor . For the sake of the adult surgeon too.....if he is not certain about the surgery then it is best that he doesn't try it. I know that he is apparently the best adult surg but he didn't make me feel very comfortable. I am sure he could do the surgery but I think it is better to go to the paed surgeon who is a pro at doing these ports....and my age doesn't matter! Yay! I am feeling much better about this.

So tomorrow at 2.15pm I meet this paed surgeon and find out my new surgery date! Praise the Lord!

Love ya all,
Charisse

Surgery and The Christmas Pageant!

2008-12-02T01:42:00.000-08:00

Hello All,
I have not updated in a while. I just didn't have the time. I wanted to show you some pictures and a small video of our Christmas Pageant over here in Australia. This was actually way back on the 8th of November which was Isaac's birthday. We don't have Thanksgiving here in Australia. Some people may wonder why I mentioned that. There are many people who wish me Thanksgiving who seem to have no idea! Ha! The history behind Thanksgiving has nothing to do with our country, hence, why we don't have it! We have the Christmas Pageant instead....not a Thanksgiving Parade :-) So before I hit the pillow I wanted to show you some pictures. I have not included all the pictures but I thought it would be fun for you guys to see some Australian Floats in our Christmas Pageant. We still have all the presents and snow (I know that amuses a lot of people since we have a hot Christmas). We have toys and clowns and fairy tales and so on....lots of music and dancing. However, thought I would post mainly our Australian Floats for something different. Below is a fun float though :-) Obviously, this is a Kangaroo! Hehe. It has Aboriginal Art all over it which is pretty cool! It was raining on this day.

Once a Jolly Swagman camped by a Billabong, under the shade of a Billabong Tree...........hehe.....Waltzing Matilda, Waltzing Matilda............

Australian Cricket! Haha!

This isn't overly Australian..... adults with Down Syndrome get to be on a float and wave. I think it is great!

Of course....the good, old, Christmas Stocking! I remember it from when I was a child! That means that Santa will be here soon! I have no more Australian Floats posted by the way :-)

The Toy Train! Isaac LOVED this train since he is CRAZY about any train! Santa is almost here!

Hmmm......One of the little princesses and people will think I am SO strange as I can't remember the name of the horse who is quite well known in Santa's Castle and in the pageant!

I am disappointed with this photo of Santa and his sleigh! I couldn't get close enough with the crowd and it is a let down but oh well.....Santa is here! Hehe .....Isaac waved and was very happy!

So that ais a bit from our pageant! Oh yes, down below is a small video I took during the pageant. I like watching it. I don't know if it is majorly interesting but it is fun to watch it over and over again.....hehe...just cause I want to....hee. Enjoy the music and the clowns and some of our other floats! Click twice for it to work faster!

Down to other business....look at the time I need to get in bed! Ahhhhh. On the 9th of December I am having an abdominal infusa port put in to help with my IVIG. It has taken me forever to decide. I am REALLY uncomfortable with having a port in my chest. I know that some people will not understand that. As an FA adult I am trying to live my life without the impact of FA on me all the time. While the port is under the skin the pump is clearly visible if I wear certain clothes or swim or anything and I crave to be as normal as possible. Living as normally as possible in both physical and emotional sense helps me fight FA. This is important to me. I had a visit with the surgeon and some surgeons can be SO arrogant. Paediatric surgeons commonly put these type of infusa ports in the abdomin of a child and even up to 21 years of age but I was refused to see one because I am 30. So I was sent to an adult surgeon who is the BEST.....however, after seeing him today I am not too sure about wanting him to operate. I am doing more research and calling paed surgeons myself. He was unsure about putting it in the abdomin and after talking to me about the increased risks of doing that as opposed to a simple chest one he said, "I was hoping that all those extra risks would make you change your mind". I won't be scared into having something I so dearly do not want. It will only make me unhappy. I have no peace and I work on how I have peace about something even if I am frightened.....the peace that God gives me about stuff helps me to make decisions. I don't even want this abdo one but I am compromising and I feel a certain peace about it....enough to go ahead. I asked this surgeon to get hold of a paed and discuss how they do the surgery since he has not done one here since the 80's he told me.........even though he is very good. He actually right out refused! I find that arrogant. You don't scare a patient into having something your own way....the patient has to be comfortable. I know as a nurse....you do not scare a patient into anything. He was very bold. He was nice and we had a professional discussion but he was bold. I appreciated him saying, "to be honest, I don't know if I want to do this surgery".....when I asked him what he was thinking in his head and not saying. I said that I appreciated what he just said....and it is important he tells the truth but when I started to say that I want to ring a paed surgeon about it and he didn't......well I was uncertain as to whether he is the best surgeon for my port. I want someone who is sure of what they are doing....and won't compromise on my health care because he thinks something different. I was a bit discouraged when he said that his success rates for port is 95% and his complication rate is only 5% with surgery and by doing mine he didn't want to mess up his record. That attitude made me feel a bit upset. If he is that good,.....I am sure even though there is a risk of increased infection during the procedure.....because they have to track it up the vein further from the abdo.....I am sure he could do a good job. Is he not wanting to do it because he feels uncomfortable and unsure of how.....or is it because he doesn't want to mess his record if something happens differently to what he is used to.....does he care why that site is being chosen? It concerns me. He is VERY nice but he was also very interesting and a bit arrogant and I think the fact that I am a nurse scared him a bit because I know what terms he is using and asked more detailed questions. So tomorrow we are talking to a paed surgeon about the risks and why do they have no issues with putting this type of port in.........and they do it on bigger people too......I will work out if this excellent surgeon I saw is the best for me and I will make the decision in the next 2 days! He said, "call me by Friday and let me know what you found out.....what you decide"....don't you think this surgeon should be "finding out himself" if he is unsure and asking me if I knew how a paed does it for them to be so comfortable with the procedure.....interesting. I came out not wanting the port at all! *sigh* I will update you as to whether I still go ahead on Monday!

Ok, I need to go to bed. Could use some encouragement!

Oh my Christian Conference was SO great! Jesus is the Mighty, Mighty God and He reminded me of that at this conference. He showed me His power and His love and His grace! I was covered in the Power of God and not afraid to say so. I love Jesus with all my heart as my Lord and Saviour and my God and I am SO proud of accepting Him as My Jesus in my heart when I was 5 years old......I have NEVER turned back and I never want to. He encourages me with my walk with FA. He gives me strength! I am thankful that I know Jesus.

Ok, bed!

Love Charisse

Unwell

2008-11-17T16:25:00.000-08:00

Hello People,

a quick medical update. This will be short because I cannot handle looking at the computer.

I had IVIG infusion this last Friday. It was a long day. They had forgotten to order my stuff so we waited a little while. However, the actual infusion went well. Last week I felt like I was coming down with a cold. At times it felt like an ordinary cold with some headaches and I felt a bit flat but was generally still able to function. Because IVIG is immunity and the reaction is flu type symptoms, overnight my cold became fluey and I feel awful. Now I can't tell if my cold got real bad because I am waking every morning coughing, nose running and blocked, headaches and stiff necks and all sorts......my whole body aches. Although some of these symptoms can be IVIG alone. I feel like I have a double dose! I feel pretty bad to be truthful. I am having trouble getting myself in the shower and so on because I am also nauseated. SO please pray that this passes quickly....this cold and stuff....my platelets did a drop and who knows if that is related to the cold......doesn't usually happen with a simple cold but ...hmmm

I have an appointment with my gynae today just for a check up.

Oh I have been brave. I am seeing a surgeon about a port on the 2nd December and having it in on the 8th. I will be having it in my abdomen and it is under the skin. When I feel up to it, I will explain more :-)

Love Charisse

Isaac's 6th birthday - part 2

2008-11-15T04:11:00.000-08:00

Hi All,

well a week after Isaac's b-day party on the 1st November was his actual 6th birthday on the 8th of November. Alan and I gave him a new bike. Now I got confused with my lay out here on Blogger and it is late so excuse how it is all laid out here. I thought I would post a couple of pictures here with his new bike. Isn't it cute? Isaac looking sweet with his new bike. Happy Birthday Isaac!

It has been a little while since I posted. I have a lot to post but will do it in sections. I wanted to post the second part of Isaac's birthday! I got permission from the mums to put up these little videos from his birthday party 2 weeks ago. Remember Alan made those sailing boats for each child and they did egg races out in the park. They had to make sure their egg didn't fall out of their crow's nest on top of their mast. There is one video where a child lost their egg but it has one child in it that I was not able to get hold of their mum or dad to check if I could put it up here so I will put these two up and I know are ok. I think they are amusing videos and cute. In one of them, a child is being SO careful and "sailing" SO slow because he doesn't want to lose his egg. It was very amusing. I think you may need t double click but check out these videos below!!!!

So those are cute. As I mentioned, Isaac's birthday party was a week before his birthday. I have some more video from his actual birthday on the 8th of November. We had to do his party early because one of his friends also had his birtday the 8th and their party. Also the Christmas Pageant was the morning of Isaac's actual birthday and we went to that.....I will get to that with many pictures and videos in the next post.

As I mentioned before, Isaac got a new BMX bike with training wheels for his birthday from Alan and I on the actual day. It is the smaller bike because the next one up was way too big for him and he would not have ridden it. He is cute.....so here is some video footage of Isaac trying out his new bike with training wheels. A little nervous at first but he got heaps better throughout the afternoon. We went to the rose garden near our house where there is a tunnel that goes under a main road. The paths there were perfect for Isaac to practise riding his new bike. Check out the videos below....so cut

Anyway, that is it for now. I have some medical things to update on as well but will need to do that later. SO keep checking back for the medical update, the update on the Christmas Pageant and more.

Love ya all,

Charisse

Isaac's 6th Birthday - Part One

2008-11-03T03:45:00.000-08:00

Hello All,
well Isaac's 6th birthday party was a big success! He turns 6 on the 8th of November but because he has a couple of friends whose birthdays are the same day and the day after, we decided to do his party one week early. We have never done a party like this before so it was our first time! The theme was a "Captain's Party" like Captain Cook who sailed the many seas and discovered Australia......a brief history lesson.......that type of captian. We had many fun things. The kids were supposed to come dressed as a crew member or officer. There were some good outfits and it was exciting. I think the two Isaacs had GREAT costumes........here is our Isaac below in his Captain's outfit. We bought it from Spotlight in case anyone was wondering :-) Here he is saying, "I want YOU" which was on his invitation........cute Here is Isaac's Birthday Cake. We got the receipe off of a website that was on Teresa Clifton's blog and she got it off her sister, Becca who made this pirate cake for their son I understand. It was cute and because our theme was not a pirate theme we made it look like a normal sailing ship. Both Alan and I did the cake together. Yes, Brooke, it was as yummy as what it looks! Ha!

Isaac opening presents! He was very excited. I got some pictures of him with each child but need to check with their mums if I can post those photos!

Cathy is a dear friend. We have been friends for a long time. She is aware I am posting and was cool with it :-) In this photo is her son, Isaac. I attended the birth of Isaac and so he is like my "baby" as well. He is 7 but not a full year older than our Isaac. We are all very good friends. I thought his outfit was great....so this is my Isaac and her Isaac....the two Isaacs! Ha!

Hmmmm........my pictures are out of order. We actually did the cake at the end of the party....hey it is late and I am not concentrating as well. Here Isaac is blowing out his candles which was tough since they were sticking out of the cannons on the sides!

See...our of order. Isaac looking proud and yet modest while we sing "Happy Birthday" to him. He is so sweet.....

Ok, this was our first activity......the treasure hunt. Each child had a treasure bag and we had hidden treasure throughout our back yard. Alan is instructing them on the treasure hunt.

Looking for hidden treasure!!!! There were all sorts of things!

Isaac putting things in his treasure bag!

What has everyone found? Making sure that everyone had an equal amount of stuff! Want to be fair!

Other Isaac in his outfit!

refreshments!

Out of order!!!!!! The pinata - a treasure box! We did this just before singing "Happy Birthday". There were so many chocolcates and lollies in there. Isaac having a swing! Everyone got a go and some kids were so agressive! Ha!!!! It's a wonder no one got knocked over!

Still having a go!

The chocolate game. An old favourite. They had to roll a 3 or a 6 and then could pick up one piece of chocolate, either eat it or put it in their special cup for later!!!

Ah yes, here are the fleet of ships! Alan made every one of these ships from scratch! He spent a LOT of time on them and even painted them! There were 8 boys and 8 ships. This was Isaac's fleet that he was in charge of. We walked down to the local park where we were going to play some games with our ships.....it was so funny. They looked hilarious walking down the street in these ships. Neighbours came out and watched. Someone called to their family in the house, "come look at this....a parade!"....something like that....hehe

Walking down the street to the park!

Walking to the park

Walking down the street....hehe

Saluting on the way..hehe

Having a brief play on the play equipment....don't fall anyone! Hehe

Isaac in his boat waiting for the games to begin.

All lined up for the egg race.

So we had an egg race. They had to carry an egg in their crow's nest that Alan made at the top of their mast. They had to race down the grass, around a tree, and back to their spot without the egg popping out. It was really funny watching the kids do this. I have video footage but need to check with the parents about posting it....so hopefully next post I can have that here for you....hehe

Getting ready to race. Hehe.....here are the eggs in the crow's nests! Haha! One or two children had really cracked eggs in the end! Haha!

The fleet of boats at the park.

So yes, it was lots of fun and the egg races were hilarious! I will check with the mums about posting the video and some other photos that are more close up of some children with Isaac. Otherwise, Isaac was exhausted and all the kids were happy and excited. I got a thrill seeing them all enjoy themselves so much. Thank you to everyone who came!!!!!!

So stay tuned for the second edition of Isaac's birthday party adventures and thanks for checking in!!!

Love Charisse

FA Day 2008

2008-10-25T01:18:00.000-07:00

FA Day in Australia is the 29th October every year. This year we decided to have a BBQ on the 25th October, a Saturday, in honour of the 29th! Keep in mind that FA Australia is still small and we are still getting to know FA Families within the different states of Australia. So we have 3 states where we are definitely aware of FA families and are in regular contact with. These are in Western Australia, New South Whales and South Australia. We do know of families in Queensland and in Melbourne, Victoria but we don't have a close enough connection to be able to organise something like this in their states. If they went to the website, they would know about FA Day. Anyone who wants to participate on that day is welcome even if we don't know them well. However, we will build the closer relationships with those families at some point and we hope to see families from those states coming to future camps. So the existing families had BBQ's today on the 25th!

We live in Adelaide. We are aware of 3 families in Adelaide with FA. Unfortunately one family live about 2 hours out of Adelaide and are farmers. It just happened to be that the harvest fell right at the time of our BBQ so they couldn 't come. However, we had 2 families at our BBQ. Debbie, Steven and their kids - Stephany, Baily, Isla (8 years and has FA, post transplant last year) and Donna. The other family was my family - Alan, Isaac and I (FA Adult - 30 years, no transplant) my mum and dad, sister, her husband (Tim) and daughter (Eliana) So with both our families we had 14 people at our BBQ. It was lovely. It was a very hot day to have a picnic though. Temperature was about 38 degrees celcius which is about 100.4 degrees F. It was also quite windy. Despite the weather conditions, we all had a good time. We had sausages and kababs for lunch with salad. We all had an ice-cream afterwards which was nice. There was a nice, big playground there and the kids enjoyed that. We brought a ball and such which kept the kids occupied and the adults just relaxed and chatted. There was a pond near by and the kids enjoyed feeding the ducks.

Below: This is Debbie, Steven and their kids. That is also Isaac in the photo. He and Donna, who is their youngest (4) got along really well and spent most of the day hanging out together. Isla is the one who has FA. She is 8 and had a transplant last year. She is going really well. She is the girl holding the full cup of red cordial.
Debbie and Steven in the background. Isaac and Donna showing me how well they can drink! Ha! Have you noticed Isaac's shirt? These t-shirts come in all different sizes and colours and were our fundraiser at camp.

Steven and Debbie. Isla is on her dad's knee. She has FA (i know I have already said that ...hehe). Every time I took a photo of Debbie she had her eyes closed and would probably be horrified at the photo! Ha! Debbie is a very sweet lady.

My mum, Wilma, Caz and Myself! (notice my t-shirt?)

Feeding the ducks! Isla (FA) and Isaac standing next to each other

Isaac and Isla (FA ) again.

More duck feeding! It is always a bit hit at this park!

More duck feeding!

David, Karl and Carol (Caz). These people....well what can I say? They gate crashed! They are our friends and were in the area. It was fun to have them there and they bought Fanconi Anaemia Caps which were our fundraiser for FA Day this year....and they are nice caps. You can see a bit of them here. Thanks for buying a couple of hats guys!

The two "FA kids"....hehe, Isla (8) and I (Charisse - 30)

I was proud to wear my FA cap! Ha! Debbie and myself....Donna snuggling in

The Gang! Handing out FA caps to those who wanted to buy them!

Some view of the park. Already becoming dry and we have only just started summer!

Eating, drinking and relaxing!

Alan cooking the Barby! Like his shirt and his FA cap? That is our official "uniform"

The kids back at the pond.....aren't they cute? I am amazed at the children's sizes......Donna on the left is only 4 but Isaac next to her is almost 6 years old. The Isla who has FA is standing far right and she is almost 8. Donna, Isaac and Isla are all similar sizes despite their age differences!

So yes, our official fundraiser this year was Fanconi Anaemia Caps. They are really nice. I will have to take a closer picture of them. I should take a closer picture of our t-shirts as well! They were popular at camp! The caps were also sent to the other states for them to sell at their BBQ's as well. So I hope they were a hit! I have not heard how the other BBQ's went yet but I am sure that Brooke will let us know how things went with her and we will see photos. It is great to finally see Australian families bonding and getting support and going "out there" to help with awareness and fundraising and support. We have had none of this happening before Fanconi Anaemia Australia was formed and it has taken us a couple of years to get to this stage. It is nice and rewarding and encouraging for all our families. We look forward to coming in contact with more families and getting to know more of them in a more personal way. I am aware that there are families in states that we have not yet had contact with. We have to wait to be contacted because of confidentiality laws. However, it is a working progress!

Thanks for reading. I hope you enjoyed the photos!

Love Charisse

2008-10-21T05:23:00.000-07:00

Hello Everyone,

Well, life has calmed down since I returned from the concert....hehe. I had infusion the Friday just gone. It went fine. Although, I am finding that I am more and more anxious each time I go. Not because of the IVIG itself but my arms are really quite tender and sore. All my veins are getting sore. They are needing to dig deeper and more to get a vein to use for the IVIG. Isaac turns 6 this November and I started having this treatment when he was about 10 months old. So I suppose I have been getting stuck for about 5 years, every 4 weeks for blood and for IVIG therapy. I know way back then they mentioned having some sort of port which would stop them needing to use my veins and I refused. Having a port makes me feel so abnormal and reminds me that I have the FA. I wanted to live free of any of those thoughts. I have really found the idea of a port very discouraging and have plodded along during the past 5 years with pokes. I have always had really bad veins that collapse easily. Now, my arms are getting sore and I am feeling anxious and because the platelets are lower, when they dig real deep and continually, I get the bruises which, in turn, make me upset. I know that people with normal platelets bruise badly when someone has attacked them with a needle but having this done every 4 weeks is starting to be too much. I didn't bruise from this last episode but they had such a hard time finding somewhere to go that I burst out in tears. The nurse came up and asked me if they had upset me and I told them I was not mad at them and that I was upset with the circumstances and how I feel about a port. I asked them to show me someone with a port not connected. The tubes and connections make me feel abnormal. A lady there having chemo came and showed me the port that they are encouraging me to use while having IVIG. It is completely concealed under the skin. There is no outside access at all. In fact when they hook you up, they place the needle in through the skin and into the plastic port underneath and it is like putting an IV in......when they take it out....there is a dot where the needle is taken out and it heals over like an IV dot......no one can see it at all. There is a slight bump where it is under the skin on the side of your chest. Because my arms are so sore....I may need to go with this. Because I am a nurse, I needed something that could not be open to infection with working at the hospital......being a mum and all sorts....and I wanted something that would be hidden......and this is disguised completely. I am NOT excited about the whole thing but may be it is time. If I ever stop IVIG, I can take it out again. It is inserted like a pacemaker.....they slide it in under the skin with a small, surgical incision. SO Alan and I are discussing this. It does not mean that I am gravely sick! I have a problem with people thinking that!
On the 29th October we celebrate FA Day here in Australia. This year, in the States that we have discovered FA Families, we are having a joint BBQ at a park on the 25th which is a Saturday. We have FA Caps that will be selling as our fundraiser there and it should be a lot of fun. It will give the families who met at camp, another opportunity to be with each other and have some fun! It has been great to see new friendships formed as a result of camp! I will take plenty of photos at our Adelaide, South Australian, BBQ!!!
Isaac's birthday is coming up on the 8th of November and he will be 6 years old! They grow up so fast :-)
On the 1st of November we are having his party. It is an "explorer" party. Isaac will be dressed up as a Captian....like Captian Cook discovering Australia. The kids have to come dressed as his "mighty crew" and they will go on search for land and hidden treasure. Alan is trying to "set the scene" outside...........I will have to take pictures.
On the 8th of November, Isaac's b-day, is the Christmas Pageant and Isaac wants to go to that. So we will take him to that!
On Friday this week I am doing half a day at work which should be nice. Life goes on!

Anyway, this update is almost over. I added a video below. I think it is cute. Completely off the subject. It is a video of Isaac at the dinner table and how cute he is eating his dinner. He didn't know that Alan was recording him while he ate. Excuse my lazy way of saying "vegetables". It is not how we say it here...it is me being lazy. Check out the cute video of Isaac eating and his conversation.....hehe

I am off to bed....enjoy!!!

Love Charisse