My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent
Jun 12, 2023, 3:34 am
#76
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Some bad news, we knew she was fully blind in one of her eyes but we now know shes blind in both eyes. She just sees shadows. The eye doctor said what caused it was when they placed her into a coma they left her eyes open. She needs surgury they alerady quoted a number higher than the family can afford. But doctor said they will submit a request to the goverment to see if they can help so fingers crossed.
Edit: And to put my money where my mouth is, I have just matched the last donation that was made.
https://www.gofundme.com/f/yessy-12-...ource=customer
Last edited by Finkface; Jun 12, 2023 at 9:13 am
Jun 12, 2023, 11:08 am
#77
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Thank you!
Some bad and good news. The eye surgery isn't something urgent they said it can wait. Even though the desperation in my nieces voice from not being able to see is heartbreaking and yes she is talking in full sentences now but she does lose her breath fast.
From what the doctor told us she needs two cornea transplants to fix her vision. But even though the doctors made it seem urgent yesterday they have now confirmed that it can be done later on.
Her platelet count has stabilized at 100,000 still lower than the 150,000 but she isn't bleeding as much as she was before and the bleeding from her mouth has all but stopped. She hasn't needed a transfusion for a few days which is a complete win!
Some bad and good news. The eye surgery isn't something urgent they said it can wait. Even though the desperation in my nieces voice from not being able to see is heartbreaking and yes she is talking in full sentences now but she does lose her breath fast.
From what the doctor told us she needs two cornea transplants to fix her vision. But even though the doctors made it seem urgent yesterday they have now confirmed that it can be done later on.
Her platelet count has stabilized at 100,000 still lower than the 150,000 but she isn't bleeding as much as she was before and the bleeding from her mouth has all but stopped. She hasn't needed a transfusion for a few days which is a complete win!
Jun 13, 2023, 6:33 pm
#78
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Does anyone know what these results mean. The doctors aren’t saying much and my friend who is a doctor is in Nigeria and my messages aren’t arriving till she returns in a few days. We are desperate to know.
Last edited by HWGeeks; Jun 14, 2023 at 12:48 pm Reason: Removed medical results as contained personal info and GUWonder was wonderful and helped decpher them.
Jun 14, 2023, 10:51 am
#79
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I am at a loss for words whenever a child is suffering. So I will just jump to say that the love people show in dark times too does inspire.
I ran the lab report by a pathologist on an informal basis without providing any background on this matter or on the patient. This is the informal gist of the limited back and forth in between the person being busy with surgicals, frozen sections and whatever else comes from being the doctor’s doctor in the course of a day:
“Looks like the bone marrow biopsy was non diagnosed. They sampled bone marrow aspirate flow cytometry. They are looking for immature blood cells. This report does not suggest proliferation of immature cells. They must be looking to rule out blood disorders of concern.”
Then I mentioned that there were already some transfusions and then asked if they may be seeing how the body is responding to transfusions. The response was:
“Probably. They did bone marrow biopsy so they are trying to find reason for low blood counts or bone marrow is not adequate to evaluate to under or over production of blood cells. Biopsy was not diagnostic so they may want to repeat Bone marrow biopsy”. “To me, flow cytometry report does not reflect any abnormal cell over production.”
My layperson takeaway is that your relative has a blood production disorder on the under production side and the doctors don’t know what the disorder is or the cause of the disorder is beyond just that. To me that also suggests they don’t know what to do other than to try to manage symptoms and just buy time and pain relief. I don’t have any pediatric hematopathologists to run things by; but if I had a child ward with this report, I would be looking for a pediatric hematopathologist to look into the matter — preferably one in medical academia in the US, UK or Germany, as they often like to have a wider variety of cases than a typical hospital/clinic pathologist with no interest in medical academia beyond that bare minimum necessary for continuing medical education credit or the like.
I ran the lab report by a pathologist on an informal basis without providing any background on this matter or on the patient. This is the informal gist of the limited back and forth in between the person being busy with surgicals, frozen sections and whatever else comes from being the doctor’s doctor in the course of a day:
“Looks like the bone marrow biopsy was non diagnosed. They sampled bone marrow aspirate flow cytometry. They are looking for immature blood cells. This report does not suggest proliferation of immature cells. They must be looking to rule out blood disorders of concern.”
Then I mentioned that there were already some transfusions and then asked if they may be seeing how the body is responding to transfusions. The response was:
“Probably. They did bone marrow biopsy so they are trying to find reason for low blood counts or bone marrow is not adequate to evaluate to under or over production of blood cells. Biopsy was not diagnostic so they may want to repeat Bone marrow biopsy”. “To me, flow cytometry report does not reflect any abnormal cell over production.”
My layperson takeaway is that your relative has a blood production disorder on the under production side and the doctors don’t know what the disorder is or the cause of the disorder is beyond just that. To me that also suggests they don’t know what to do other than to try to manage symptoms and just buy time and pain relief. I don’t have any pediatric hematopathologists to run things by; but if I had a child ward with this report, I would be looking for a pediatric hematopathologist to look into the matter — preferably one in medical academia in the US, UK or Germany, as they often like to have a wider variety of cases than a typical hospital/clinic pathologist with no interest in medical academia beyond that bare minimum necessary for continuing medical education credit or the like.
Jun 14, 2023, 12:37 pm
#80
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Thank you!!!!! you have no idea how much you helped!
BTW we want to get her out of that hospital but the hospital and doctors have refused or have dragged their feet when it comes to making the referral to St Jude's etc. We have all the information on how to make the referral to St Jude's and Mt Sinai and even a hospital in Colombia, but the doctors have yet to write it. All require that the doctor attending my niece send the referral.
A nurse mentioned something to the family off the record and I believe her, but I can't publicly say what we were told because she's still in that hospital. But you can imagine what they told us, afterall they left her eyes open after placing her into a coma causing her blindness.
BTW we want to get her out of that hospital but the hospital and doctors have refused or have dragged their feet when it comes to making the referral to St Jude's etc. We have all the information on how to make the referral to St Jude's and Mt Sinai and even a hospital in Colombia, but the doctors have yet to write it. All require that the doctor attending my niece send the referral.
A nurse mentioned something to the family off the record and I believe her, but I can't publicly say what we were told because she's still in that hospital. But you can imagine what they told us, afterall they left her eyes open after placing her into a coma causing her blindness.
Last edited by HWGeeks; Jun 14, 2023 at 12:52 pm
Jun 15, 2023, 11:24 am
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They are sending her home again today. I asked, no I begged my brother-in-law to take her to another hospital AS SOON AS SHES DISCHARGED a better one that is the national district but I think he's numb and has become robotic and does what ever the doctors tell him.. I returned to NY yesterday or the day before I can't remember.
Her mom is also in a state of depression since the the diagnosis and is hard to talk to. She keeps saying she will be fine and talks as if its just a fever. I understand how hard it is for her.
My other brother in law has also been pushing for her dad to move her we all got into a huge argument on Saturday or Sunday night actually it was monday night. Because he seems to be dragging his feet and his only reply is the doctors said that if we move her she can get sick, or that other hospitals can make it worst. I think he is depressed as well well I know he is, because I am and I am just an uncle.
Also I am not that religious, but if you are, please have her in your prayers, and if you aren't have her in your thoughts.
Her mom is also in a state of depression since the the diagnosis and is hard to talk to. She keeps saying she will be fine and talks as if its just a fever. I understand how hard it is for her.
My other brother in law has also been pushing for her dad to move her we all got into a huge argument on Saturday or Sunday night actually it was monday night. Because he seems to be dragging his feet and his only reply is the doctors said that if we move her she can get sick, or that other hospitals can make it worst. I think he is depressed as well well I know he is, because I am and I am just an uncle.
Also I am not that religious, but if you are, please have her in your prayers, and if you aren't have her in your thoughts.
Jun 17, 2023, 11:02 am
#83
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They tried taking her to another hospital this morning, hospital refused her and said she had to go to where they were already attending her unless they receive a referral. On her way back home she had a seizure and they took her back to the original hospital since they were closer to it. She has a fever of 39c which is 102. Other then the fever and the seizure she's actually better than she was a week or so ago.
Jun 19, 2023, 7:35 am
#84
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Update last night she was sent home again, doctors told her parents not to bring her to any hospital if she just has a fever. They also asked for a "Reunion de la Junta Medica" which is a meeting with the medical board. Her parents want a referral and since the doctors attending them refuse or give reasons not to give one they want the medical board to intervene.
I am in New York so I haven't seen her but I am told she looks strong and is active just seems to be in a bit of desperation because she can't see. She did ask for me which made me happy!
She's also really hungry but can't eat anything as she has to return to the hospital for a blood transfusion or a platelet not sure which one.
i've attached a picture of my wife and her from this morning. She covers her face because she thinks she looks ugly. Even though we tell her she's beautiful.
I am in New York so I haven't seen her but I am told she looks strong and is active just seems to be in a bit of desperation because she can't see. She did ask for me which made me happy!
She's also really hungry but can't eat anything as she has to return to the hospital for a blood transfusion or a platelet not sure which one.
i've attached a picture of my wife and her from this morning. She covers her face because she thinks she looks ugly. Even though we tell her she's beautiful.
Jun 25, 2023, 9:11 pm
#85
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Haven;t posted anything in a few days because I don't want to be annoying.
Major update she had the eye surgury and she can't see yet her eyes are covered but they are certain she will see according to the doctor.
She has the means to come to the US the visa is ready however its a family issue now, the father and mother feel that the hospital shes at is doing their best and are afraid to move her so now its not the hospitals reluctance its the mother and fathers. It's a delicate topic and unfortunately he feels the hospital shes at is doing fine. I disagree and the rest of the family as well.
She is currently home, her only real complaint is she is uncomfortable no matter how she lays in the bed she just cant get comfortable and shes in a lot of pain. She also can;t seem to find the right pamper size. She could use a small in depends however pricesmart the only place that carries adult diapers in the country only has medium and up. So she's been using size 6 Huggies that fit her but don't hold enough liquid. The medium depends are slightly too big and leak.
She keeps askingmy wife for me, I personally don't know when I will return to the DR I am int he process of getting my residency there and have to wait for the consulate to give me my visa. They told me to call Wednesday to see if its ready i it is, shortly after wednesday I will try to head down.
Thanks for reading.
Major update she had the eye surgury and she can't see yet her eyes are covered but they are certain she will see according to the doctor.
She has the means to come to the US the visa is ready however its a family issue now, the father and mother feel that the hospital shes at is doing their best and are afraid to move her so now its not the hospitals reluctance its the mother and fathers. It's a delicate topic and unfortunately he feels the hospital shes at is doing fine. I disagree and the rest of the family as well.
She is currently home, her only real complaint is she is uncomfortable no matter how she lays in the bed she just cant get comfortable and shes in a lot of pain. She also can;t seem to find the right pamper size. She could use a small in depends however pricesmart the only place that carries adult diapers in the country only has medium and up. So she's been using size 6 Huggies that fit her but don't hold enough liquid. The medium depends are slightly too big and leak.
She keeps askingmy wife for me, I personally don't know when I will return to the DR I am int he process of getting my residency there and have to wait for the consulate to give me my visa. They told me to call Wednesday to see if its ready i it is, shortly after wednesday I will try to head down.
Thanks for reading.
Jun 26, 2023, 3:29 pm
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Jun 26, 2023, 4:57 pm
#88
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Without insurance or financial assistance from the hospital or a charitable organization, the cost of treatment is going to run into hundreds of thousands of dollars.
Many children's hospitals in the US have online price estimator tools. Others, such as Nationwide Children’s Hospital, one of the top ten pediatric hospitals in the US, have price lists.
Many children's hospitals in the US have online price estimator tools. Others, such as Nationwide Children’s Hospital, one of the top ten pediatric hospitals in the US, have price lists.
Jun 26, 2023, 5:55 pm
#89
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Without insurance or financial assistance from the hospital or a charitable organization, the cost of treatment is going to run into hundreds of thousands of dollars.
Many children's hospitals in the US have online price estimator tools. Others, such as Nationwide Children’s Hospital, one of the top ten pediatric hospitals in the US, have price lists.
Many children's hospitals in the US have online price estimator tools. Others, such as Nationwide Children’s Hospital, one of the top ten pediatric hospitals in the US, have price lists.
Jun 26, 2023, 6:07 pm
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