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