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Hi good people,
I'm needing some reminders to keep the faith. As some of you know, Mia, my 14 yo daughter has had ITP for a couple of years. We went through the normal protocols -- prednisone, ivig, anti-D, and a lot of "watchful waiting" with our great hematologist. When platelets wouldn't budge and stayed chronically low, we finally did rituxan (jan 2013) and Mia got 8 glorious months of remission -- such a gift we know she was fortunate to receive.

That said, she turned up with 9K about 6 weeks ago and, because she was about to get her period, the hematologist really wanted us to get right on Rituxan again. So, 10 days ago finished another 4 rounds of rituxan. The first time she did it, she popped right up -- and 2 weeks ago she was, in fact, at 185. But then they dropped -- even with the prednisone she was given with the rituxan. She was at 12, now clearly lower than that, and for the first time ever is doing some active bleeding (gums, these weird scabs on her scalp, loads of pettichaie, some a little bloody, etc). Even the prednisone seems not to be doing its normal magic (and god, but I hate prednisone). Nonetheless, she is just going about her life -- babysat last night, off to the Red Sox parade this morning at 6 am with her dad. So glad she is doing all this though I know she feels crappy.

So please remind me that the Rituxan can take a long time to kick in -- even if it kicked in quickly the first time. Here's a prayer to everyone struggling with this stupid disease. Prayers to you all for high(er) platelets and no bleeding!

So please remind me that the Rituxan can take a long time to kick in

Remember... Rituxan can take a long time to kick in! Sometimes as long as 12 weeks!

I don't have a child with ITP; my wife does, and I am sure that it is easier, in that she is ultimately responsible for her own medical decisions, even though I am her "designated worrier". Parenting through the rough spots can be pretty trying.

Remember to focus on the positive. You have a daughter with a strong spirit, who still babysits and goes to the Red Sox Parade. You have a husband who takes his daughter to the Red Sox Parade! The Red Sox won the World Series!! You have a great hematologist. It is much too early to give up on the Rituxan. There are lots of other good options. And if nothing works, even then your daughter's levels are not too low to live with.

And remember: you and your husband are the source of your daughter's strength.

Prayers for you, too, for the strength to stay positive.


Edit: My wife doesn't have a child with ITP, she has ITP. Where are the grammar police when you need them?

Rob,
My heart is filled with gratitude for your great, great email.

I am so grateful for your encouragement and for this amazing group of people to whom we can come to with our questions and worries and outright fears -- and even our petty gripes -- and be understood and held. thank you. I have been on the pdsa fb page more often lately but do not like to post about my daughter -- esp because our m.o. is to just go about life as much as possible, even with some bleeding and single digits.

I am grateful for your reminders of all that's great -- my plucky daughter, the amazing red sox, a beautiful fall day, and the support of this group.

I pray I'm here to support you and your wife should you ever need it.
BLESSINGS and GRATITUDE.
Firkins

My thoughts and prayers are with you and your daughter. I had my longest remission (3 years, 8 months) after Rituxan, even though at the time my counts dropped, even with Dex added. I hope that your daughter will have a complete recovery.

Roll with the punches Firkins - the randomness of ITP is the most annoying bit. Got my fingers firmly crossed that something will start working soon