FlyerTalk Forums - View Single Post - My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent
Old May 9, 2023, 8:10 am
  #9  
HWGeeks
 
Join Date: Jun 2009
Location: Somewhere
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Posts: 3,363
Originally Posted by guv1976
Any progress in getting her transferred to the St. Jude affiliate in the Dominican Republic?

If the doctors ultimately determine that a stem-cell transplant is her best option, you might reach out to this organization, which seems like it could help:

https://icla.org/aboutus/

Edited to add: See, for example, this story:

https://icla.org/finding-a-cure-for-valery/

Nothing yet from the St. Jude affiliate. We did reach out to them again to both the affiliate hospital and St. Jude's directly, but no response regarding her being transferred.

Once her doctors decide on an attack plan and it involves stem-cells I will definitely be reaching out to icla, thank you for the link.

Her father is scared to continue with the visa process because the constant blood bank visits and lab test which has drained his pockets and the families as well he's afraid of becoming a burden. The government did agree to help pay for part of her hospital stay and part of her treatment so that is helping but lab test and blood bank is the families responsibility. I might start sharing the go fund me on my Facebook and twitter to help with that as well he was ok with creating.

This morning she woke coughing up blood, but I am told she is putting on a brave face acting as if she isn't scared. I also could hear my wife talking with her, and I could hear fear in her voice the way it crackled but she talked in a positive way. I think she feels a lot worst than she's admitting as well not to make the family worried. She has also become super thin. The picture above was taken the 4th or the 5th of May which would make it 4 or 5 days old and she is about 50% thinner today.

I wanted to change my flight on Sunday to arrive there sooner, but when I spoke to her about that yesterday she said if I come sooner it will scare her because it means I think she's dying, she told me not to come sooner so that she has a reason to see next week. So as hard as it is because I am scared, she will die, I will honor her request and go on Sunday. Yesterday was the longest Monday in my life and today Tuesday even though it's 10am feels like the longest Tuesday ever.
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