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-   -   My 1 year-old girl angel is dying, please help (http://forums.marrowforums.org/showthread.php?t=5972)

Ebrahim Saadawi Mon Feb 5, 2018 10:55 AM

My 1 year-old girl angel is dying, please help
 
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Hello, guys. Thank you for the great community. One month ago, my beautiful 1 year-old showed signs of bruising and gum bleeding, at first I suspected Haemophilia and Thrombocytopenia disorders, I rushed her to the nearest hospital, and the CBC tests showed incredibly low Platelet count of about 7000. I was shocked, of all the years we worked as doctors we have never had a patient with such shocking CBC tests. I requested a Bone Marrow Aspiration test as I feared the worst: Acute Lymphocytic Leukemia. Test results took a long painful week of platelet and blood transfusions, it came back with apparent Pancytopenia thus she was officially diagnosed with Severe Aplastic Anemia.

I always studied haematology knowing that AA treatment is Bone Marrow Transplantation, with quite low survival rates. I was, an am, devastated, and so is everyone around the family.
Our Especialist Haematologist overtook the case and I just want to make sure he's on the right track or see if anyone else went through the same course.

1- He signed a 50-day long hospital admission: I have been "living" there full-time for a month now, waiting and waiting, and I fear hospital infections would get her. So was anyone here admitted so long into the hospital?
2- The hematologist dismissed the idea of Bone Marrow Transplantation for now, which I found strange. His idea is that having no sibling, the BMT would be dangerous from a parent donor. Is that reason enough to dismiss the treatment?

3- He claims a corticosteroid treatment has the capability of treating the case and says: "I do not want to deprive her from the corticosteroid treatment plan. She's the second AA case in the country, the first was a little girl also under my supervision and the BMT was fatal, I am not losing another girl."

PROBLEM IS: the actual most important medicinal therapy is hATG, and I found out today that the doctor is not giving her ATG, only Cyclosporine and Corticosteroids and Antibiotics, etc. This is due to budget problems. He says hATG would be hugely beneficial to her case.

He knows we can barely afford her stay is hospital thus was against writing ten 50$ (50$ = 1000 EGP = my Monthly salary as a dentist). People advised me to set up fundraiser campaigns and I am just lost and shakenly afraid for the life of my little girl, so is her mother.

Any help, either financial or support, no matter how small, is immensely helpful at this point of hopelessness.

I Set Up a Fundraiser For The ATG: www.youcaring.com/mylittleangelsahar

The payment method of youcaring is not approved in Egypt. The only method people can send donations is through WesternUnion.com money transfer website where you put my information

(Ebrahim Ebrahim Saadawi,
00201002542254,
Address: Mansoura, Egypt, Qesm 2,
occupation: Dentist,
Email, ebrahimsaadawi@gmail.com)

Dr. Ebrahim Saadawi, Mansoura's Paediatric hospital, Egypt,

rar Mon Feb 5, 2018 06:54 PM

1. I spent 3 months in the hospital with one foot in the grave with the other on a banana peel. In the long run it kept me alive. You get used to it.

2. See be the match to find suitable donors. There are millions entered. A sibling is best if a 10/10 HLA match but not necessary. Look for an unrelated match. At diagnosis I had a 4% chance of living 3 years. I had a SCT 3.5 years ago. SCT was billed at $3 million, insurance covered all.

3. There are drugs that provide temporary remission. As far as I know a transplant is the only durable cure.

Ray


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