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My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent

My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent

Old May 6, 2023, 9:37 pm
  #1  
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My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent

BTW not sure if this is the right forum for this, so if it isn't I do apologize.

My niece was diagnosed with leukemia on Monday may 1st. She's a niece by marriage and while not my blood she and I have gotten a long really well. She's 13 years old big smart ... but super smart as well.

She lives in the Dominican republic and has been in the hospital since the 14th of April maybe the 15th don't really recall. The doctors there didn't know what was wrong and kept running test after test after test with no clue as to what was wrong just that her plaquette level was low.

I have a pediatrician friend in Ohio, sent her my nieces medical records and pictures of bruising around her body and in her mouth and first thing she told me was it looked like leukemia, but that they need to run some test to rule out infections to ask the doctors to run the test. When we asked, the doctors in the Dominican Republic they just scoffed at us and said to stop consulting elsewhere. I wish they had listened.

They finally tested her bone marro on the 26th and the 1st came back the positive result. Doctor the heartless b word that she is, told my niece alone while her mom went to get breakfast and her father was out at the blood bank buying blood. According to my niece she simply told her she had cancer and left. My brother in-law and his wife found my niece crying in her hospital bed, and she wouldn't tell them why. Eventually a few hours later the nurse told them the reason why she was crying.

The doctor doesn't even want to show her face near the family anymore, and today after the 6th blood transfusion and 5th plaquettes transfusion, they told my brother-in-law that soon they will send her home, that they won't be giving her anymore blood transfusions. Which means they have given up on her, and she will die.

What's worst is they aren't even sure what type of leukemia because the test cost too much and the hospital needed to get approval or something, even when we offered to pay.

I had started a GoFundMe for her, because her father has literally sold his trucking business too pay for blood and test to help his daughter and I have pitched in as well as other family members, but it just seems all or nothing now.

We tried getting a b2 emergency visa to get her to the states, and hopefully take her to st judes or some other hospital. But the lawyers in the DR said it was a long shot and not to waste the money. So here I am just venting.

Last edited by HWGeeks; May 6, 2023 at 9:48 pm Reason: Added disclaimer at the top about the forum.
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Old May 6, 2023, 9:42 pm
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Picture of her!
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Old May 6, 2023, 9:51 pm
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I'm sorry to hear the sad news about your niece. I suggest that someone contact St. Jude immediately:

https://www.stjude.org/

(Click on "Patient Referral.")

If you, or any of your niece's other relatives, are U.S. citizens residing in the U.S., contacting your Congressional representatives might help in getting the girl admitted into the U.S. for treatment. And the folks at St. Jude might have some experience/advice about how to get the necessary visa.

Information about obtaining a B2 visa for medical treatment provided by the U.S Embassy in the Dominican Republic:

https://do.usembassy.gov/go-united-s...cal-treatment/

I wish your niece and her parents the best of luck.

​​​​​
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Old May 6, 2023, 10:26 pm
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We contacted St. Jude and they referred us to a partner hospital in the DR. Which isn't far from her. However, they haven't said if they will accept her yet. I also wrote my senator on Wednesday and faxed Mr. Schumer. but I have a feeling it will all be too late.
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Old May 8, 2023, 3:00 pm
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Heartbreaking. I'm so sorry. I hope that the unexpected happens and she gets the medical care that she deserves.
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Old May 8, 2023, 5:56 pm
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Just a little update.

She is now in intensive care, but her spirits are high and even though she has no appetite she screamed yes when I asked if she wanted McDonalds, so when I get to the DR on Monday I will be buying her 2 happy meals and I promise I won't eat any of it.

Doctors are unsure how to treat her, and even have mentioned sending her home and stopping any future blood transfusions. But then decided to move her to intensive care today.

Her test results for the type of leukemia came back invalid or something, and they have to do it again but because of the blood transfusion she had yesterday they don't want to do the test just yet.
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Old May 8, 2023, 6:40 pm
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Please keep us updated. We care about what happens to this beautiful child.
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Old May 8, 2023, 7:16 pm
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Originally Posted by HWGeeks
Just a little update.

She is now in intensive care, but her spirits are high and even though she has no appetite she screamed yes when I asked if she wanted McDonalds, so when I get to the DR on Monday I will be buying her 2 happy meals and I promise I won't eat any of it.

Doctors are unsure how to treat her, and even have mentioned sending her home and stopping any future blood transfusions. But then decided to move her to intensive care today.

Her test results for the type of leukemia came back invalid or something, and they have to do it again but because of the blood transfusion she had yesterday they don't want to do the test just yet.
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/
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Last edited by guv1976; May 8, 2023 at 7:29 pm
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Old May 9, 2023, 8:10 am
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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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Old May 9, 2023, 8:58 am
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Originally Posted by HWGeeks
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.
In addition to a traditional visa, there is also something called, "humanitarian parole," discussed here:

https://www.uscis.gov/forms/explore-...itarian-parole
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Old May 9, 2023, 9:37 am
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Originally Posted by guv1976
In addition to a traditional visa, there is also something called, "humanitarian parole," discussed here:

https://www.uscis.gov/forms/explore-...itarian-parole
Thank you, I didn't know this existed. Will investigate it. Thank you so much for the time it took you to look this up and get it me the info!
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Old May 9, 2023, 11:46 am
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Sending hugs to you and your family HWGeeks.
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Old May 9, 2023, 11:56 am
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Sounds heartbreaking. Its so nice that you are helping and advocating for her. Its really horrible for the doctor to have just told her cancer, all by herself, and left her. Medical care in poorer countries can be really difficult at times.

Please reach out to me via PM, and Id be happy to contribute via Paypal.

My youngest daughter is a little younger than your relative, and I can just imagine if she was seriously ill. Hoping for a hospital transfer soon!
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Old May 9, 2023, 3:11 pm
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A little update.

The Hospital associated with St Judes in the DR have refused to accept her. But St Judes here in the US said they are willing to consider her if her Doctor in the DR writes a referral letter in English with her records.

They sent a really heartfelt email to us and said they can't anything without knowing what leukemia she has and seeing her records, but they are more than willing to look over her case and consider her as a potential patient. The best news we got in a few days. The hope alone lifted up our spirits.
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Old May 10, 2023, 11:07 am
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While St. Jude might be the best option if it would admit the OP's niece, there are charity care/financial assistance programs offered at a number of comprehensive cancer centers in the U.S. Here are details for Roswell Park in Buffalo, and Memorial Sloan Kettering in Manhattan:

https://www.roswellpark.org/become-p...stance-program

https://www.mskcc.org/insurance-assistance/assistance
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