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[nana of sadie]

My 2 year old granddaughter, Sadie Mae, has recently been diagnosed with AA. In April of this year, her mother, my daughter-in-law-Amber, took her to her regular doctor for unexplained bruises. She was diagnosed with ITP and was sent to St. Francis Children's Hospital in Tulsa, Oklahoma. Sadie went through all the conventional ITP treatments, and either had no response to them at all or very little response. The first BMT looked good...bone marrow flowly freely, mother cell there, but the second BMT was a different story...almost a total bone marrow failure. Sadie's older sister, Bailey who is 4 1/2, was tested for a bone marrow donor....she wasn't. Now, we are waiting for test results on Sadie before we can even look at the bone marrow bank. I have always been the "rock" of my family, but lately this condition has sent me in a tailspin. All I can say is..."I don't know!!" I would appreciated any advice...learning more and more everyday, mostly from this site.
Thanks in advance,
Denise-Nana of Sadie

[Neil Cuadra]

Denise,

Can you give us an update on Sadie Mae? How is she? What treatments is she getting?

Has she had futher bone marrow biopsies? Have matches been found in the Bone Marrow Registry?

[evansmom]

If I'm not mistaken, Sadie's AA has essentially resolved. I believe her marrow is functioning well again.

[nana of sadie]

Evan's mom,
I am glad to have finally found you!!!! After I saw your private message on the ITP site, I sent one back. Guess you like me, don't go there as often.

Sadie is doing well. Her last bone marrow biopsy in October came back at 50%. We were elated to say the least!! Her reds, whites, and platelets continue to rise and fall weekly, but are at a safe level. She has received no treatment since last summer, and a few weeks ago....her platelets rose to 92,000. We thought that maybe she was going to beat the dragon, but the next week they fell 52,000....dang!!!

We are just watching, waiting, and praying!!!

I found Evan's Caringbridge site, and will spend some time reading his journal.
Let me know if you'd like to talk to Sadie's mom. She knows more about the dragon than I do. LOL

Denise-Nana of Sadie

[evansmom]

Hi Denise.

I just came across your message now! So glad to hear Sadie is doing well without further treatment. That's great news. We continue to hang in there, it's been four months now so we are well on our way to accepting this as part of our life for now and are thankful for the fact that Evan feels well pretty much all of the time. We certainly get our strength from him, and we will continue to be positive and hopeful.

Take care and hugs to Sadie for me.