Mom suffering from MDS RAEB-II, need help finding a bone marrow donor

[surabhi]

Hi,

My mother aged 47, was diagnosed with MDS mid last year, and underwent her second bone marrow test and on on 28th Jan 2012 the results are:

Bone Marrow biopsy: High Grade MDS converting to AML (M6)
Bone Marrow Aspirate: Blasts -13%, MDS RAEB-II

She weighs only 28 kgs (61.6 lbs) and had undergone her first round of chemo (Decitabine) last week. She was admitted again today with very low platelet counts - <10,000 and RBC was close to 2. Because of her weight, she was given lesser dose of Decitabine as compared to normal and I’m not sure if doctors would send her for a second round as they did inform us that we have 15-20% chances of losing her in chemo.

She doesn’t have siblings who could be a match and I’m looking for a bone marrow donor for her. I am from India and unfortunately, there are not enough options to find a donor, I tried reaching out to other international associations but the cost of sending a stem cell over (if matched) is more than my family could arrange for even if we sold off every asset. That’s just not a possible option for us…just somewhere in dreams I guess.

I have found this forum with a lot hope and people who can understand what it feels like to be in a situation like this. I’m looking for someone who could match her HLA and would be ready to donate marrow to her. Since, we can’t afford stem cell being sent here but we could arrange air fare (both ways) and complete stay and care here. I know it might sound very weird but that’s the only option I can see.

My mom is being treated at one of the best hospitals India has, Army Hospital, Research & Referral, New Delhi, since my dad is an ex-army person. The doctors are good but because of scarce donors, very little awareness and openness, the number of donors in India are nothing if compared to number of people who need a match.

My dad has been taking care of my mm 24*7 leaving everything aside since she has been sick and I’m the eldest of the siblings (25), my younger sister is 20 and brother is 18.

Even though I have all my hopes up but looking at her I feel she will not be able to cope. She is too young to die and like everyone I don’t know what to do. I know BMT is a risky process too but if at all possible on this earth, I want her to get a chance. I request all readers to please think about this and get in touch with me if you have any questions. Her HLA test report has arrived and I could send it over whenever needed. If anyone has any other information that might help her condition, health, mental peace, help me keep her happy, anything… I would highly appreciate.

Thank you once again for reading this, I really hope someone can help.

[Neil Cuadra]

surabhi,

I realize how hard it must be for you and your mother to face her high-risk MDS. She's young compared to the typical MDS patient, and that makes her a better candidate for a transplant if a donor is found. However, the chances of finding a volunteer who then turns out to be a match for her is so small that a better approach would be to continue working with international associations to find a match, and then looking for charitable funding that could pay for the stem cell donation.

There is certainly a need for more registered donors in India. Publicizing your mother's situation could encourage people to sign up. Perhaps you can work with DATRI or another organization that could help you run a bone marrow registration drive:

• DATRI Blood Stem Cell Donors Registry
  
  
• Asian Indian Donor Marrow Registry
  
  
• Marrow Donor Registry India (Facebook page)