January 2007
January 17
Jake and Joshua had a great time at Christmas this year. It was so nice to be home and all of our family was here to celebrate. Jake gave Joshua a run for his money opening gifts this year.....Santa went a little overboard!
Since October Jake has been showing small signs that he has been starting to relapse slightly. He has become very obsessive about Mike caring for him again and has had many days of constant crying if Mike isn't around, he is also having trouble sleeping. He has remained on the same dose of ACTH since October, and we have been able to stop the progression of the OMS from going further into a full blown relapse. Because of the decline while trying to get off the ACTH again, Jake has been started back on a month protocol of Chemotherapy (Rituximab) which he will recieve once a week for four weeks. The first round was started here in Sudbury this past Monday, which went fairly well. Jake also received his IVIG on Tuesday (which he receives every three weeks), which meant the poor guy was exhausted come Tuesday night. The ACTH has been bumped up to 0.4cc every day until the end of the Rituximab protocol in hopes that we can eliminate any B cells active in his system, and start another wean again in approximately a month and a half. If this protocol fails, we will be making another trip back to Springfield, Illinois to see the specialist there for another spinal tap and consultation to see if adding another Chemo drug could do the trick. If Jake is found to still have active T and B cells at that point a stem cell transplant may be our only answer.
I will update more often now as Jake gets into the protocol....
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