Update on Caitlin

Caitlin is still on the minimum dose. Went for a thorough appointment this morning and the only thing they were still somewhat concerned about is her wbc, but I reminded them that this is nothing new and Caitlin feels fine. Her count is at 175 today so this is great, considering that her drops usually start in September if we follow her yearly patterns. I asked the doctor and the study coordinator to consider taking her off Nplate and they are really looking into it. My only request was that I would only want to do this if we had the assurance that she could get the drug again if her counts drop. She needs to have her counts up around 50 or higher at all times due to how competitive she has become and her acrobatics have become almost dangerous, even for a non-ITPer. (I grow new gray hair each time I watch her so I try not to watch, lol!) They have given me enough Nplate for the next 4 weeks, but they are hoping that we get to stop in about 2 or 3 weeks. Deep down, I really feel like she is in remission from the Rituximab and I really want to give her bone marrow a rest because 4 years is a long time on a drug! (It will be 4 years in Dec.)

Whatever the reason behind the high-flying count, enjoy! But they won't know for sure til they discontinue the N-plate, will they? I hope it's the Rituxan--and that our Caitlins continue to do so well. It'll be 9 years for my Caitlin next month! Ann, Caitlin's (24) Mom

Wow, 9 years already! That's awesome! I hope the same happens for my Caitlin! I guess we really won't know for sure if she is in remission until she is completely off Nplate, but it is hard to believe that such a tiny amount (it's like a teardrop or maybe less!) can really help that much! I have not heard anything yet so I don't know if they will allow her to get off.

That is great!! I like to read about stories that give me hope. My daughter is 5 and I would love for her to do activities but we just can't get numbers up long enough to do anything. Keep us posted!! Good luck on taking her off.