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

Fanconi Anaemia Australia Camp!

What a camp! It was GREAT! We had about 25 people attend our first ever, Fanconi Anaemia Australia Camp! The first camp was such a great success and it was great to meet other families within Australia that are affected by Fanconi Anaemia. It is a shame that there were many families who were not able to make it this year. I am sure that people were unsure about how camp would be but now that we have had the first one we can reassure others who may be interested that they will enjoy it....and the families who came will be able to give a great report. I know, from speaking with them, that they all want to come back next year and asked if this would be a regular event. We are aiming to do an FA Australia Camp once a year. There were 2 families I had never met before who came and it was great to meet them. We were a small group this year but one must start small before growing bigger. We had 4 FA children attend and 2 FA adults. Of course add there family and siblings to it and support people and we had our 25 plus our volunteers and camp co-ordinators. This update is rather long because of all the photos I have up loaded. I just could not wait to put pictures here for you all to see....so the page is pretty loaded. Edmund Rice Camps put the camp program on for us just like Camp Sunshine does in the States. We had a whole lot of fun. We had one session called "FA 101" and that was an excellent session. It was not threatening and was held in the parent room where Dr Tom Revesz came from the Women's and Children's Hospital to talk to us a bit about FA and answer any questions that people had. He is the head of Haematology/Oncology at the hospital. It was great because we were able to have a good discussion about issues we were concerned about and those who were support people and had never heard anything from a doctor were able to listen to exactly how complicated FA really is. We had a "laughter workshop" which was supposed to be us being taught how to laugh and doing laughter exercise. It is supposed to be hilarious but the guy got confused and gave us a stress management lecture which was good in content but he was an interesting guy.

We had a chef come in and show the parents how to garnish food while the kids were involved in their program. We had canoeing and boulder wall climbing and swimming and all sorts.

One activity was to make "affirmation bags" for each person. We all made our own, including the adults. Throughout the whole camp, when you had time, you were supposed to write something down on a piece of paper which would affirm or lift someone else up and put it in their bag. At the end of camp, a week later, the bags will be sent to each person and they can open it up and read what wonderful things people had said about them. The kids made a treasure box and each thing that was done during camp was put in those boxes for them to take home as "memories". Each volunteer assigned to a child made a pot plant pot and decorated it with paints and gave it to their child at the end of camp as a gift with special flowers.....plus they got like a show bag at the end of camp with special stuff in it. We had the amazing race which was obstacle courses for the kids but the parents could do it with them as well. Here are some photos of everything.
Below is my sister and I in the parent room. This room was for respite for the parents and adults and the kids were not allowed in this room, nor the volunteers....... My sister-in-law to be and myself being silly.....

This is out of order but at the end of camp, on the last day, each member of camp was given an award for something nice about them....every single adult and child. It was so uplifting......

This is our room.....Isaac going to sleep after a very BUSY day at camp......

A photo of the group. I think I was resting at this time.......I will try and name them in another photo......

Mum and dad and myself......

Hehehehehe.....this is part of the Talent Night. This was a hilarious skit.....hee. The sleeping bag on the floor has people under it and they are a big snake and this is the snake keeper and he was feeding the snake and the snake would throw things out the other side as it ate. It was funny....like he would crawl in and get eaten and someone would throw his empty clothes out the other side like he had been eaten. People were REALLY laughing. It is so hard to explain.

Hmmmmmmm......Alan was the presenter at the Talent Night and kept dressing up in these funny wigs and doing a Southern Drawl!!!

Jordan and Darren (Alan's cousin and brother) dressed up for their Talent as the Circus Master auditioning someone wanting to be in the circus....it was funny.

You cannot see the kids all that wel but this was Ray (FA child) and Nathan (FA Adult's child) doing a skit.....teaching the tiger tricks!

The audience...some of them......

My family singing "in the Jungle the Lion Sleeps tonight"....Liesl (sis), Tim, Eliana, mum, Isaac and Myself.

Janet (FA Adult) and her son, Josh doing karaoke. Go Janet!!!!!

Alan, Isaac and my Talent. We were trains and had been chuffing around, singing the Thomas song and we had our numbers on. We're 2, we're 4, we're 6, we're 8!!!!

Alan is pyscho! He was Leading the talent night and had taken off his wig. It was on a stick and the hair dresser had told him it was alive and it was chasing him around and he was proclaiming his horror in a Southern Drawl.....hehe

Liesl, Eliana and Tim doing their Talent....a medley of children's songs. Yes, Eliana did sing and she is so cute. Liesl is my sister and Eliana my niece...Tim....brother in law.

Haha....Brooke, Helen, Ray and Jasper and I think Adam and Karen....can't see them in the photo....are doing their skit..."the bus stop"

Sitting at the bus stop

Alan in a crazy wig!

The story of Eddie Rice....these guys are acting it out in a play......


Still acting and Alan is a pyscho as per usual!

A chef came and showed us adults how to garnish food. Janet (FA adult who will be 40 next year!) loves cooking and had ago at garnishing all this fruit....check out the photos!

Janet, Brooke and Denise (my mum in law) all having a go at the garnishing!

Isn't it pretty?

This is Helen and I. Helen is such a beautiful person. Her son, Ray, has FA and is only 6 years old. He has already had a transplant. If you are reading this Helen, I miss you heaps and am so blessed to have met you. Thank you for letting me post your pictures!

Brooke, Jasper's mum whom you have all met at Camp Sunshine, Helen and myself and a volunteer...he was camp co-ordinator and did extremely well.

Liesl, Tim and my dad.

All of these pictures were taken out at the Bon fire on the Saturday night. We cooked marsh mellows over the huge fire an ate them. It was fun.....this is Darren and Angela.

Brooke and Helen really got along well!

At the Bon Fire!

Doesn't it look pretty! And Hot!!!!

Pool fun! This is Pua, Isaac's volunteer, Isaac and I!

Adam has FA and is 8. He had a transplant recently.....but was well enough to be at camp obviously! This is him with his volunteer!

Ray with his volunteer!
Canoeing! It was fun. I think this photo of Isaac is cute.

This was hard work, We each had an adult in each canoe with a child in the middle!

Can you see how Alan, Pua and Isaac's boat is WAY down in the water????? Alan kept letting water in the boat when they tipped sideways...he was much heavier than Tim, my brother-in-law, and I and Jasper in OUR boat. We were champions!

A great photo of Alan, Jordan (cousin) and Isaac ready to get in the canoe

Boulder Wall climbing...look like fun? I like this picture

Liesl and Tim having a go!

Isaac even had a go!
I pretended. I was SO exhausted from the canoeing and just didn't think my arms could do it so I posed! Ha..the canoeing was tough work. There were small rapids and we went agains the current some of the time. I think my swimming paid off by giving me some muscles in my arms!

Janet (FA) was real good at the boulder wall climbing!

Ray and Jasper both had a go!

Jasper....

Some pictures of the FA parents! Brooke, mum and dad

FA adults, Janet and myself
Mum's of FA children: Wilma (my mum), Brooke, Helen (Ray's mum) and Karen (Adam's mum)

FA adult couples: William and Janet (FA), Alan and Charisse (FA)

Alan and myself

Janet and William, her husband

Janet's children: Josh and Nathan

FA children: Adam, Ray and Jasper

My child: Isaac

FA kids and adult: Charisse and Janet at the top and Adam, Ray and Jasper at the bottom

FA children: Adam, Ray and Jasper

The Group Photo with Banner that Says, "Eddie Rice Camp, Fanconin Anaemia". This is all the volunteers and all the FA adults and children and support people. Unfortunately there was one family of 6 who were only able to make it on the Sunday. They had one FA child in their family and we did not take any photos.....I can't believe we did not. This was the last day and they had already left which was such a shame. So there were 6 more people at camp on the Sunday.

Each night we did Candle light sharing. We held a candle on our laps in a circle and in the dark and what we had to do was...the person who held the candle had to pick someone in the circle and say something really nice about that person or what they were grateful for that day or about that person and then hand the candle on to that person who would do the same. It was emotional and very heart warming and we learnt a lot about one another and bonded heaps.

So it is late and that was a huge entry to write. If there is any more to write I will do it in another entry.

Camp was beyond words, wonderful. A great experience. Heart warming and emotional and I miss everyone already and I can't wait to see everyone again next year for our second camp.

Please write in the guestbook. This is such an exciting entry for me.....such an exciting moment!

I better go to bed!

Love you all,

Charisse