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some comments from Danica's mom

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15 years 4 days ago #583 by xray001
some comments from Danica's mom was created by xray001
First of all, how do I get my information to show at the bottom of my posts? (i.e. my name, and the list of treatments that Danica has had so far)

Second - to Donna, Ali and Pauline - I hope everything is going well with your kids. I read Ali's post, and I am glad that Dougie is doing well, Donna, you are always on my mind and I worry so much about you and poor Tim.

Last but not least, Danica is still doing the same thing. Her count was 7 today, so we will go for IVIg #27 tomorrow. Her hemo is away for this month, so we will not start the Decadron until March. I am trying to be hopeful, but fear that it may not do as well as I want it to, as she was resistant to the Prednisone. I guess there is only one way to find out - and I guess we will do that in March.

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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15 years 4 days ago #584 by alisonp
Replied by alisonp on topic Re:some comments from Danica's mom
Hi Michelle
If you sign in and go to the My Profile button, then Edit my Detais and the signature line is on the Forum Tab I think.

I am sorry to hear that Danica is still doing much the same in single digits. I have realised in the last few weeks how much I worry about Dougie when his count is low, and how much it all improves when it is higher. You must all be getting very tired of it, including Danica - since Dougie's count has been higher, I've also realised how much happier he is when he doesn't have to worry about platelets! I am really grateful that he has had the last few months without being in single digits, and I am also still very much hoping that ITP is a problem that will just disappear (Donna, I know, I know, but I am only hoping, not expecting!)

I am also waiting to hear what happens with Tim's Nplate, Caitlin's rhematologist, and Danicas new steroid - so keep us all up to date!

Lots of luck, Ali :cheer:

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15 years 2 days ago #653 by xray001
Replied by xray001 on topic Re:some comments from Danica's mom
Thanks Ali

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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