Nora begins again

Thank you everyone for all the love and prayers.

Nora is considered nearly a failed transplant and since Very Severe Aplastic Anemia is such a pain in the ash, and there are such few pediatric patients who: 1) have unrelated donors, 2) live through transplant, 3) later have marrow failure—the research for what to do to help her is spotty at best. So Nora’s doctors have decided to enter her into a second clinical trial. She started the rituxumab/ATG/marrow boost protocol. She is going to be a subject to be studied for years to come. I hope this research helps to save many lives so it will not be in vain.

Nora did well with the chemo (rituxumab) and is not allergic to it! Yea!

She is getting an eight hour chemo (rituxumab) infusion each Wednesday for the next three weeks. She will now have no antigens or antibodies. Once again, she can’t be near people and the only time he can leave the house is to go to the doctor. We have to keep a close eye on her to watch for serum sickness and brain infections. They are both possible side effects of this drug. After she finishes the rituxumab (for the bcells) she will go inpatient for yet another (third time) 5 day ATG infusion (for the tcells). Afterwards she will get stem cells from her donor if, please God, he agrees.

Today we are at Stony Brook getting counts and realized from her numbers that her marrow is failing again. Her platelets are at 2. Not 200,000 where they are supposed to be. she a
So has a barking cough that they are looking at.

We are pretty much back to square one.

For whatever reason we cannot comprehend, she needs to do this. We will be in and out of the hospital for the third summer in a row and will not return to school next year. Sigh.

Please continue to pray for her and if you can, please donate blood. Especially if you are O-. If you are A- please donate platelets, she will have to suck down pint after pint for awhile.

I will keep you all posted as we go forward.
Love,
Shawn, Maureen, Arik’s, Nora and Nugget

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