Fanconi Anaemia Camp 2009 in Australia

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..........

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!

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

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