Friday, October 12, 2012
We Spent WORLD Arthritis Day at the Hospital
We had our visit today with the doc and we are still here at Shands Hospital since it’s IVIG infusion day/night. The good news is it’s just an overnight stay. Parker’s doc is amazing and we are so fortunate to have her helping our kiddo. She talked with the principal investigator physician for the RAPPORT study and bought us some time. She got an additional 4 weeks’ worth of med. I thought I was losing my mind a bit because I could have sworn we had until the end of December with drug. I really thought that was what we signed up for…come to find out…YES, that is what we signed up for but because they are running out of money to run the study, we were going to be cut after the trial run was complete. It really seems unfair on so many levels…but we are thankful for the additional time. His doc is so very upset by this…she felt that he should get it because so many biologics have failed him but she can only do what she can do and we are frustrated right alongside of her.
In the meantime, an appeal was filed. We are also going to appeal as parents too. And his doc is going to call the drug company to see what can be done. She is also contacting one of her connections at the National Institute of Health (NIH) to see if Parker could be seen up there. We are feeling a bit desperate. We do not want to see this disease attack his organs again.
We also talked about trying to decrease his steroids to see what happens. We have a sense that the steroids might be holding some of the symptoms back. So we will test that while he is still on the rilonacept.
Also, since Parker is going to need IVIG on an ongoing basis, his doc is going to try and set up home infusion…she said it kind-of works like an insulin pump. He would get it once a week and it would run for 1.5 hours and infuses in the stomach. There are a few advantages to this: we would get to be home; and he would get more continuous levels of IVIG. For those of you who are not aware, IVIG is an infusion of around 2,000 donors’ blood plasma. This helps his immune system that is definitely not working correctly. So we will see about that too.
If Parker cannot continue on the rilonacept and cannot get into NIH, then the only choice left is to go “backwards” and put him on what he has been on before and probably multiple biologics. As for the symptoms that have returned…we will continue to monitor his temp, Raynaud’s, systemic rashes, and his vasculitis. She said he has “hot spots” with his vasculitis. And if by some miracle, he gets to continue on rilonacept long term he may still need to alternate it with another biologic because this darn disease seems to be outsmarting the drugs yet AGAIN! Yes, it is crazy and we so want to see Parker comforted and feeling better.
Parker was super scared today and totally freaked when they told him he was going to have to share a room tonight with another patient (sweet kiddo by the way). And even through all his fear, Parker was also super sweet…he asked the doc to come back so he could give her a hug. He gave her a long hug and he cried. He loves her so much and he knows that she is really trying hard to help him. So please continue your prayers and encouragement. We appreciate the support more than we could ever ever express.