Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Feb 5, 2018, 11:55 AM
Ebrahim Saadawi Ebrahim Saadawi is offline
Member
 
Join Date: Feb 2018
Posts: 1
My 1 year-old girl angel is dying, please help

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,
Attached Images
File Type: jpg 27332123_10155387669328269_6671788287535246661_n.jpg (185.6 KB, 2 views)
Reply With Quote
  #2  
Old Mon Feb 5, 2018, 07:54 PM
rar rar is offline
Member
 
Join Date: Mar 2014
Location: colorado
Posts: 215
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
1 year post-relapse update DanL Transplants 7 Mon Jan 11, 2016 07:02 PM
Army mechanic dying, need info marykatie MDS 8 Tue Sep 15, 2015 10:27 PM
16 year old tired for over a year bone marrow failure Gregsgrouo Tell Your Story 10 Wed Aug 28, 2013 02:26 PM
Good news 1 year after ATG paulaespada AA 2 Thu Jun 18, 2009 06:34 PM
10 year old son diagnosed in October evansmom AA 3 Sun Jan 27, 2008 10:35 AM


All times are GMT -4. The time now is 07:52 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org