Camp 2010

KAT-FISH Camp = Kids and Teens - Families Investing Support and Hope!!

The first camp we ever attended was honestly one of the most eye opening experiences for each of us in relation to the journey with arthritis. Since then we have been hooked and the girls look forward to camp every year. This year there were 70 families attending; that is 3x the number of families in attendance over the first camp we attended. Why is camp so amazing? First of all the kids have a great time! Sadie is in a small group of people who fully understand arthritis and Syrah is with other kids that either have arthritis or have a sibling that has arthritis so they can understand what life is like with doctors appointments and having a brother or sister in pain. Here is what Sadie has to say about KAT camp:

Kat-Fish camp has been great experience for me. I like going to camp because I meet other kids my age who have arthritis and can relate to my experiences and share ideas and helpful tips on what helps them. You also get to tell others about your experiences to help them know what might help or even that there is someone out there that understands. When you go to camp not everyone in your age group will have arthritis, it could be a sibling or relative. You get to hear what it feels like for them living with someone with arthritis. I also like going to camp because you get to do fun activities and when you are feeling tired or sore you don’t have to feel uncomfortable explaining why you need to stop and take a break. You get to do things like rock climbing, horseback riding, crafts, swimming, putt-putt golf and so much more. I like listening to the adults talk about what living with arthritis was like for them growing up and how they feel now to get a glimpse of what the future might be like for myself. I love going to Kat-Fish camp!

As a parent, we get to hear from other families, what they face and how they handle different situations. We also often get to hear from professionals in a much less traditional setting. This year we had a women who gave us tips on coping with a child with a chronic illness, a nutritionist, a panel of young adults who were diagnoses as children and are now independent from their parents and my favorite a fellow pediatric rheumatologist (we learned a fellow means he is between year 8-11 of his schooling to get the title: Pediatric Rheumatologist). In addition we had meals with other families, met many new campers and learned the way the Arthritis foundation uses the funds that they raise throughout the year to support research and programs.

I wanted to share so desperately the entire 45 minutes (probably ran longer then that) of the fellow that spoke to us, he was truly amazing. His topic was where treatment has been, where it is now and where it is going. It was so well put together on a topic that is so complicated that they changed the name of pediatric arthritis from Juvenile Rheumatoid Arthritis (JRA) to Juvenile Idiopathic Arthritis (JIA) (Idiopathic because they truly know it is not the same as adult RA and it often acts in an idiopathic way making it very hard to clearly understand where the specific problem in the immune system is happening). I have been trying to find something that might come even close to how well he laid this out. In order for him to clearly talk about where things are going, he showed us bit by bit the very complicated immune system and what they know about how the system is not working properly. The video here is a good start to what he went into, but not as in depth as he went. Please keep in mind while watching this that JIA is similar, but not completely the same, but this is very close (with the exception of statements like: "RA typically starts in the hands and feet" - I am not sure if that is true in adults, but that is NOT true to JIA).



I personally walked away from this doctors time with us with a lot of information and I usually feel fairly well educated in the area of treatment, but there are so many new drugs on the market and so many different things being thrown at us specifically in clinic that it was very helpful to hear more about them. It very literally made me throw out one option that was previously put on the table and made me much more receptive to another option that has been given in the recent months. It also gave me a very clear understanding of how far they have come medically. An interesting side note of one of the many things they "tried" while trying to treat RA 30+ years ago. Doctors at that time realized that when a patient had RA and then had some type of liver damage (due to excessive drinking or other liver diseases); their RA would improve. So, they started intentionally trying to induce liver issues causing jaundice in hopes to relieve peoples RA symptoms. The conclusion: it didn't work and there were a lot of discolored jaundice patience for some time. That is just one of many of the examples he gave as he shared the long road that has been taken to get to where we are with treatment options today.

In the current times, the things that are being worked on and how specifically the medications can work on one small area of the immune systems is honestly amazing. Seeing how our bodies function, just the function of one blood cell and it's role in our system, is such a reminder of how big our God is and how complex his creation of us is.

Another highlight for me was an impromptu conversation prior to the young adult panel talking. Outside the auditorium I had the pleasure of meeting the mother of three girls, two of which have a rheumatic condition and are both grown and out of her home. I could have listened to her and drawn from her experiences for hours had time allowed it. She said one thing to me that has just been running over and over in my mind - it was: "I always told my girls not to let it stop them, go and live life, you can sit in pain at home or you can be in pain watching the baseball game, going shopping with your friends, etc - as long as you are safe and not doing more damage, get out there". I loved this and partly because I wrestle with this part of life as a mom... I want her to get out there, but I also don't want her to hurt more... it is a very fine (sometimes unseen) line. In our lives we have to balance a bit of the safety part as her ankle truly is wearing out and we are trying to preserve as much as possible, but this has made me step back and take a look at myself as a mother.

Beyond our time with the doctor, the one thing I walked away with the most was the faces of the parents who were in attendance for the first time. Our family worked on the welcome committee and I felt honored to do so as I truly remember what it was like our first year and how it was both a huge blessing to us, yet was a very overwhelming experience and difficult as we felt for the first time like being at camp was really accepting JRA/JIA as a part of our lives. I often would think of this as something Sadie had to deal with, but the truth is, our daughter having JRA/JIA affects each of us and each of our roles in our family. What I know above that is that it has not crushed our hope, not quited our faith (if anything it has made it stronger) and it has not and will not win.