Tuesday, October 9, 2012
Trying Not to Let Fear Take Hold...Trusting All Will Be OK
Fear can seem to momentarily paralyze us…Michael and I feel like we have been hit hard in our gut and the wind has been knocked out of us. The last few weeks have been tough to digest. Parker has seen progress on the RAPPORT study and for that we are incredibly thankful. However, he is not doing as well as the other children on the study and we have seen the return of some classic systemic JA symptoms. But today, it was made official… we cannot get the drug approved for continued use after the study and next Friday is his LAST day of the study.
I broke the news to Parker and he totally withdrew and told me to leave him alone. So I honored his request…as hard as it was, because this was not his typical reaction to bad news… About 40 minutes later, one of his hospital homebound teleclasses started and when the teacher asked him how he was doing (like she does with each student during role call), he could barely squeak out “not too good”. She said he could just listen today. He said “ok”, muted his mic, and burst into tears. All I could do was hug him…
Even before he voiced his thoughts, I knew what he was thinking. He is scared of regressing even more. He is scared he will have to go back to multiple biologics. He is scared it will attack his lungs or heart again and he will be hospitalized. He is scared he will be back on 2 infusions a day of kineret. The day that we had his Arthritis Foundation Walk (May 5) was quite the celebration because that was the last night of his kineret infusion. That night we made about a 10 minute video in case other families wanted to see what our twice a day routine entailed.
He has been through so much such then….
During our last visit to the ped rheumy, we also had confirmation that he does have hypogammaglobulinemia and it is NOT due to his use of biologics but his messed up immune system and we were told he would probably need IVIG infusions for the rest of his life. She also shared that she really feels he also has psoriatic arthritis in conjunction with is systemic on-set JA and all the other overlapping stuff. And although he has been back on IVIG, his numbers are not increasing like she would like them to. It is incredibly frustrating and concerning.
We are processing a lot right now. Michael is coming with me on his next overnight infusion of IVIG this week, so we can talk about next steps and try to make quick decisions. We are trusting all will be ok and trying not to let fear take hold of us.