Monday, October 5, 2009

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

41 comments:

Anonymous said...

Wow! Looks like you had a fantastic time!
Praying as always!
Psalms 55:22 Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved.
Prayer Bears
My email address

Cathy said...

Dear Rissy
What a joy looking at your world....I am so glad the camp was such an encouragement.....It was great to see all the family too, say hi to them all please. Australia seems a world away from here.....we are hot and sweating ALL of the time......there is so much noise and lots of people we are the ONLY whites so we get stared at lots...esp Esther.....

All is well I have done about 15 Birthing classes and am trying for some permanant Mid care in the area. I have thought of you and Al and will continue to pray......love you so so so much.

Cathy
PS Back on the 10th of DEc

Anonymous said...

These are such comforting words that paint such an amazing picture. Praying!
Isaiah 40:11 He shall feed his flock like a shepherd: he shall gather the lambs with his arm, and carry them in his bosom, and shall gently lead those that are with young.
Prayer Bears
My email address

Stacey said...

Hey Charisse!
Awesome Blog and YES it is a squirrel glider hehe.
I miss you so much!
Can't wait for next camp hehe, I'll be there! I hope some of the same peoples plus all the ones I didn't meet come as well!
Call me!
Oh and if you need some more pictures I think I've got some for ya :)

Love ya girl
~Stacey

Katie W said...

It looks like an amazing time. I'm glad things were slower this year, because I'm sure you're not the only one who could have used a more relaxing time.
Thanks for sharing!
Love ya,
Katie

Anonymous said...

This is such a wonderful promise. If Jesus wasn't who He said He was, He would have told us. But He IS and His promises are true! Praying right now!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears
My email address

Anonymous said...

I always come back to these verses. It never ceases to amaze me that the Holy Ghost Himself prays for us! He's praying for you! There's no greater comfort than that!
Romans 8:26-27 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
Prayer Bears
My email address

Anonymous said...

Was so sorry to hear that you have the flu!
No matter what happens, know that the Lord IS working. Praying!
Romans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.
Prayer Bears
My email address

Anonymous said...

Hi Charisse,
We did have a great time at camp, and the photos bring back good memories. I've only just been able to look at your blog because I've had lots of trouble with my internet!!!!! Grrr! It's so good getting to know everyone.
I also enjoyed seeing the photos of you and Isaac at Shan's grave. We sooo need to keep in view the amazing eternity we have with Jesus.
Love you heaps and praying always for you and a quick recovery from the flu and your stay in hospital. Love you heaps,
Mum

Anonymous said...

Keep hoping for news...
Know that I'm here praying!
Romans 8:33-34 Who shall lay any thing to the charge of God's elect? It is God that justifieth. Who is he that condemneth? It is Christ that died, yea rather, that is risen again, who is even at the right hand of God, who also maketh intercession for us.
Prayer Bears
My email address

Anonymous said...

Continuing to pray in Seattle!
Romans 8:35, 37 Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? ...Nay, in all these things we are more than conquerors through him that loved us.
Prayer Bears
My email address

Anonymous said...

Lifting up prayers
Romans 8:38-39 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
Prayer Bears
My email address

Anonymous said...

Know I'm here praying!
1 Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.
Prayer Bears
My email address

Anonymous said...

The Lord is with you right now, lifting you up, giving you strength! Always praying!
Isaiah 40:27-31 Why sayest thou, O Jacob, and speakest, O Israel, My way is hid from the LORD, and my judgment is passed over from my God? Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer Bears
My email address

Anonymous said...

Praying so very hard!!!!!!!!!!!!!
John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
Prayer Bears
My email address

Anonymous said...

Am here praying for your family!
John 16:33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.
Prayer Bears
My email address

Anonymous said...

Really concerned about you! Praying for you right now!
Romans 5:1-4 Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope:
Prayer Bears
My email address

Anonymous said...

Keep hoping you'll be well enough to post on here again...Know that you're in my thoughts and prayers!
Philippians 4:6-7 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Prayer Bears
My email address

Anonymous said...

Continuing to pray!
Philippians 4:8-9 Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.
Prayer Bears
My email address

Anonymous said...

Checking in to see how you're doing. Praying!
I Peter 2:9-10 But ye are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that ye should shew forth the praises of him who hath called you out of darkness into his marvellous light: Which in time past were not a people, but are now the people of God: which had not obtained mercy, but now have obtained mercy.
Prayer Bears
My email address

Anonymous said...

Continuing to lift up prayers!
Psalm 116:5-9 Gracious is the LORD, and righteous; yea, our God is merciful. The LORD preserveth the simple: I was brought low, and he helped me. Return unto thy rest, O my soul; for the LORD hath dealt bountifully with thee. For thou hast delivered my soul from death, mine eyes from tears, and my feet from falling. I will walk before the LORD in the land of the living.
Prayer Bears
My email address

Anonymous said...

Know that I'm here praying!
Psalm 121:1-4 I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the LORD, which made heaven and earth. He will not suffer thy foot to be moved: he that keepeth thee will not slumber. Behold, he that keepeth Israel shall neither slumber nor sleep.
Prayer Bears
My email address

Anonymous said...

Know that I'm here praying!
Isaiah 43:1-3a: But now thus saith the LORD that created thee, O Jacob, and he that formed thee, O Israel, Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the LORD thy God, the Holy One of Israel, thy Saviour.
Prayer Bears
My email address

Anonymous said...

Hope this beautiful Gospel passage gives you comfort! Praying!
Titus 3:4-6 But after that the kindness and love of God our Saviour toward man appeared, Not by works of righteousness which we have done, but according to his mercy he saved us, by the washing of regeneration, and renewing of the Holy Ghost; Which he shed on us abundantly through Jesus Christ our Saviour; 7 That being justified by his grace, we should be made heirs according to the hope of eternal life.
Prayer Bears
My email address

Anonymous said...

Know that I'm here praying!
Psalm 19:14 Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer.
Prayer Bears
My email address

Anonymous said...

Lifting up prayers!
Psalms 27:7-9 Hear, O LORD, when I cry with my voice: have mercy also upon me, and answer me. When thou saidst, Seek ye my face; my heart said unto thee, Thy face, LORD, will I seek. Hide not thy face far from me...thou hast been my help; leave me not, neither forsake me, O God of my salvation.
Prayer Bears
My email address

Anonymous said...

Praying!
II Corinthians 1:3-4: Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.
Prayer Bears
My email address

Anonymous said...

Continuing to pray!
II Samuel 22:29-33 For thou art my lamp, O LORD: and the LORD will lighten my darkness.For by thee I have run through a troop: by my God have I leaped over a wall. As for God, his way is perfect; the word of the LORD is tried: he is a buckler to all them that trust in him. For who is God, save the LORD? and who is a rock, save our God? God is my strength and power: and he maketh my way perfect.
Prayer Bears
My email address

Anonymous said...

Still praying in Seattle!
Psalms 31:1-3 In thee, O LORD, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me.
Prayer Bears
My email address

Anonymous said...

Praying!
John 3:14-17 ¶And as Moses lifted up the serpent in the wilderness, even so must the Son of man be lifted up: That whosoever believeth in him should not perish, but have eternal life. For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
For God sent not his Son into the world to condemn the world; but that the world through him might be saved.
Prayer Bears
My email address

Anonymous said...

Know that I'm continuing to pray!
Galatians 2:20 I am crucified with Christ: nevertheless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by the faith of the Son of God, who loved me, and gave himself for me.
Prayer Bears
My email address

Anonymous said...

I don't even have words to express what's in my heart right now. I just cannot believe that Charisse is gone!
Know that I'm here praying so hard for your family!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears
My email address

Anonymous said...

"Until I post again..." her last words on here...so hard to read now...
Am here praying!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Prayer Bears
My email address

Anonymous said...

Know that your family is always in my thoughts and prayers!
Ephesians 2:8-9: For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast. For we are his workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them.
Prayer Bears
My email address

Kristin Young said...

Hello my love. We miss you very much. Your family is missing you. Send them love and hugs so they can feel you are still there, with them.

Love my friend,
Kristin

Kristin said...

miss you.

Kristin Young said...

I'm sure you were at camp this year. It was so nice to see Isaac and Alan. Isaac is doing so great. I know you must be proud. I'm also sure you saw them put your brick in. Sorry I couldn't really hang around close to watch. You know what a blubber head I am. I just wanted to say that I missed you and Wesley and Isaac seemed to play great together. It was sweet to see. Hugs my love.

Kristin said...

Still miss you.

Kristin Young said...

nYou're on my mind.

Kristin said...

Hello my friend. Miss you.

Anonymous said...

Thankyou for your lovely posts, dear friends. Lynn, I dont think I know you (I am Charisse's sister) have only now read your posts and want to thank you from the bottom of my heart for your faithful and persistent prayer. Not one prayer fell to the ground and i believe that Charisse was engulfed in the presence of God as she left this world for the next. 3 1/2 years later and I'm still tearing up. Thankyou so much for your prayers. God bless you xx
Liesl