Saturday, September 8, 2012
Progress with Systemic On-Set Juvenile Arthritis and the Drug Rilonacept
Week 17 on Rilonacept...These past few months I feel a bit like I have been “holding my breath”….waiting…to exhale and release… I have wanted to update Parker’s status but have not known how to put into words the progress….AND lack of. This morning, as I sit and try to find the words, I am still feeling at a loss.
We also extend our deepest gratitude to the team of doctors and nurses and researchers trying desperately to find a way to help Parker…of course one would "expect" that this would be a group of people who help…but it is “how” they are supporting us and treating our son that is most touching. This group of people has become our angels on earth. Systemic on-set juvenile arthritis has been the scariest experience for us and their persistence and patience is never-ending. I have wanted to yell out to everyone that Parker has made progress on the study. Rilonacept is definitely making a difference and has helped Parker make some gains…the incredibly hard part is he has soooooo far to still go. As a parent and a sibling, we watch and want desperately for things to go back to the “way they were”…it is this part of the disease that is relentless. We, as a family, are coming to the realization that this disease has attacked someone we love so very much and we cannot “stop it”…it keeps attacking. I have to believe that it is going to get better…I have to believe that the drug is somehow helping and that if we were not doing this treatment it would probably be worse…I have to believe that God will protect our son and give him quality of life…I have to believe that our love and strength will pull us through… I have to believe that a cure will come….all while we hold our breath and wait….always waiting…
But we are trying hard not to focus on the problems (although we cannot ignore them). He is less swollen. He does have less rashes. He is moving better and on some days doesn’t use his wheelchair when out. For this we are thankful…and he is making all his hospital homebound teleclasses (no absences). He desperately wants to go back to his school and we were told this week there are no openings in 8th at the moment and he is crushed. But we are hoping that he continues to improve and that an opening comes up.