Solving the Puzzle

Solving the Puzzle in Boston

Camp Sunshine

We arrived in Portland Maine on Wednesday the 10th October in the afternoon, the camp picked us up from the airport and took us to the camp. We got given our room and got unpacked.
At 4.30 they had time where you could go and meet the other families with DC and some of the volunteers. They gave us tea and we had an intro to camp. There were different age groups that the kids split off into with leaders for the camp. The good thing about my age was that I could switch between the adults and the teenagers group. So I went to all talks on DC by the doctors but didn’t go the the stuff relevant for parents.

On Thursday morning we had breakfast with everybody then the kids went to their groups and the adults had some talks. The first talk was DC-101 which was on the basics of DC. The second talk for the morning was on DC Maintenance which was talking about what to look out for, what DC patients are at risk of developing and what and how to protect against things.
We need to keep an eye on their mouth for white, black spots and lumps. As we are more prone to oral and throat cancers. We also have to be very careful in sun and where a wide brim hat, where lots of sunscreen and try to stay out the sun in the worst part of the day. The skin is also affected with DC. I have to limit or no alcohol if posable and no smoking not even second hand.
Then in the afternoon the talk was on Bone Marrow Transplants Specifically in DC patients and how they are now trying to do them differently with DC patients by using less conditioning (chemo and radiation). They are discovering patients with DC don’t do as well as cancer patients when having bone marrow transplants. After the talk they had a Q & A discussion panel with the Doctors where some great questions were asked and answered. Later in the afternoon the parents were having a discussion so I went with the teens and played some games and went swimming. That night we had the Talent show and Masquerade where Paul did the haka.

On Friday morning after breakfast the talk was on Other Treatments besides Bone Marrow Transplant for DC, where antigenes and other treatments would be used. Then the talk was Advances in DC/Pluripotent stem cells. Where they may be able to use Gene therapy in the future to treat DC. Then in the afternoon I hung out with the teens and did some more swimming and other activities. I decided to have the gourmet dinner with the parents which was a great roast turkey with lots of different vegetables some of which was my first time trying. After the dinner they had karaoke so I stayed for some of that then I went to the teens.

On Saturday morning the last talk of the weekend was on Genetics and Fertility. Then we had free time till lunch and the parents had a talk about DC awareness and fundraising. Later I went swimming again with the adults and after tea they had the wish boat launch & celebration show. After that we had a game of newcomb volleyball which is played on a volleyball court where you can catch the ball instead of just hitting it back and people are eliminated if they don’t catch the ball. It was teens vs adults and us teens had played it before and it was fun to get everyone involved. To start with the teens were winning but then the adults got more people and learnt how to play so they won the last few games before the lights went out and we had to go to bed.

On Sunday morning it was time to say good by to everybody which was hard as I had made some good friends with DC families and also some of the camp helpers.

I found the time at the camp great with being able to meet others with DC besides my brother Aaron. I am really keen to go back in two years for the next camp. It was very interesting that I physically met my first ever other person with kartagener’s other than my brother. (he didn’t have DC, my brother Aaron and I are the only two ever with both). It was valuable to see people older than me who have DC and are still ok. There were parents with adult children with DC and grandchildren there too. Also to see all the different varieties and severities of DC was positive as I had seen was Aaron.

PS sorry it took so long, did it in Canada but lost it with faulty Internet.

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