My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent
May 10, 2023, 4:15 pm
#16
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No major updates today, just another blood transfusion. Which scares me because I googled and maybe I shouldn't have and blood transfusions are just a way to buy time in a war that you're bound to loose. Hopefully that isn't true.
Her mom is starting to go a little mad, she is in denial about everything and says that Yessy is doing ok. I can't even imagine what she's going through right now.
Her mom is starting to go a little mad, she is in denial about everything and says that Yessy is doing ok. I can't even imagine what she's going through right now.
May 11, 2023, 4:35 pm
#18
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So I have been here for a little under an hour or maybe an hour trying to figure out how to start this post. So I'll just go for it.
She doesn't have leukemia. When my wife told me that I jumped for joy, but that joe was short lived. She instead has bone cancer ostearcoma or something like that. I have to google it to find out exactly what it is. But it's a bone cancer, and the cancer has spread to her lymph nodes and skin.
The doctors have sent her home, there is no game plan for her treatment. They said she needs to reach out to a specialist but to look for one quickly. my wife believes they sent her home so she doesn't die in the hospital and spends her last few days with her family.
I took so long to post this it logged me out.
She doesn't have leukemia. When my wife told me that I jumped for joy, but that joe was short lived. She instead has bone cancer ostearcoma or something like that. I have to google it to find out exactly what it is. But it's a bone cancer, and the cancer has spread to her lymph nodes and skin.
The doctors have sent her home, there is no game plan for her treatment. They said she needs to reach out to a specialist but to look for one quickly. my wife believes they sent her home so she doesn't die in the hospital and spends her last few days with her family.
I took so long to post this it logged me out.
May 11, 2023, 5:14 pm
#21
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So I have been here for a little under an hour or maybe an hour trying to figure out how to start this post. So I'll just go for it.
She doesn't have leukemia. When my wife told me that I jumped for joy, but that joe was short lived. She instead has bone cancer ostearcoma or something like that. I have to google it to find out exactly what it is. But it's a bone cancer, and the cancer has spread to her lymph nodes and skin.
The doctors have sent her home, there is no game plan for her treatment. They said she needs to reach out to a specialist but to look for one quickly. my wife believes they sent her home so she doesn't die in the hospital and spends her last few days with her family.
I took so long to post this it logged me out.
She doesn't have leukemia. When my wife told me that I jumped for joy, but that joe was short lived. She instead has bone cancer ostearcoma or something like that. I have to google it to find out exactly what it is. But it's a bone cancer, and the cancer has spread to her lymph nodes and skin.
The doctors have sent her home, there is no game plan for her treatment. They said she needs to reach out to a specialist but to look for one quickly. my wife believes they sent her home so she doesn't die in the hospital and spends her last few days with her family.
I took so long to post this it logged me out.
https://www.stjude.org/disease/osteosarcoma.html
Last edited by guv1976; May 11, 2023 at 6:14 pm
May 11, 2023, 7:22 pm
#22
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So i will be arriving on Sunday and yes Happy meals all around.
May 11, 2023, 7:31 pm
#23
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Her family is pissed that she and they were told it was leukemia, I went out looking for doctors who sepcialize in that and hospitals, being told we just need to know what type, and that test could take ddays to arrive. Only to be told its something completely different. so many ups and downs today
May 11, 2023, 8:48 pm
#24
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Her family is pissed that she and they were told it was leukemia, I went out looking for doctors who sepcialize in that and hospitals, being told we just need to know what type, and that test could take ddays to arrive. Only to be told its something completely different. so many ups and downs today
St. Jude would seem like a good choice for either disease. You just have to reach out to them again to update them on the diagnosis, and see if you can get a physician in Santo Domingo to provide the medical records and a referral letter in English.
It looks like the Children's Hospital of Philadelphia might also be a strong choice:
https://www.chop.edu/conditions-dise...ma-in-children
But you would have to investigate the financial assistance available at CHOP. If your niece were admitted to St. Jude, the family would not have to worry about hospital bills.
May 11, 2023, 9:12 pm
#25
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And here's the Sloan Kettering page on osteosarcoma:
https://www.mskcc.org/pediatrics/can...coma/treatment
https://www.mskcc.org/pediatrics/can...coma/treatment
May 11, 2023, 9:30 pm
#26
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So some good news, my wife's cousin used to be married to a US Congressman (he's still a congressman) won't name him. She gave him a call and he agreed to help. He had previously agreed to help but we needed a real diagnosis which finally came today. I didn't know about this until tonight.
Her cancer we are told is aggressive but still survivable.
Doctors in the DR continue to be heartless and refused to write a referral for St Jude's and or handover medical records, tomorrow families going with a lawyer to ge the records. Not sure why they wouldn't hand over the records. (might be more to this or I understood wrong so will clarify later)
Her cancer we are told is aggressive but still survivable.
Doctors in the DR continue to be heartless and refused to write a referral for St Jude's and or handover medical records, tomorrow families going with a lawyer to ge the records. Not sure why they wouldn't hand over the records. (might be more to this or I understood wrong so will clarify later)
May 12, 2023, 9:57 am
#27
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They got the medical records and a referral from the doctor. She claimed she didn't want to give the referral yesterday because she doesn't know English and both St Jude's and Mayo clinic want it in English I knew this so she is forgiven. As for not giving the records, they said at the time they were speaking with the parents the records department was already closed. I understand this but believe records should be available in the event of life of death.
Here is what the records say according to my wife, might be missing some doctor lingo and other details and some stuff may be lost in translation. I am also writing it all out for my own sanity.
April 14th my niece woke up in pain, when she tried to get out of bed she fell to the floor her legs couldn't support her, doctor who saw her at the emergency room ordered an X-Ray.
X-ray showed something and Radiologist recommended a specialist read the X-Ray. Attending doctor overruled and noted no abnormality X-Ray looked normal and sent my niece home with pain killers, and told to drink vitamin D.
I remember teasing her telling her she just didn't want to go to school. She had a project due that day, I know this because I started a non profit int he DR in the neighborhood she lives in to help under resourced children. A lot of children come who are in her class and do their homework but supplies we sell dirt cheap. She would normally come as well to do her homework with three of her friends. The day before her three friends came to do a project on pollution. I remember her mom telling my wife she was going to send Yessy to the center to work on her project as well but never showed up. Her little brother who did come to the center told me she was home sleeping.
April 15th she didn't go to school either as she was in pain still but not as much as the days before.
April 16th my niece returned to the same hospital same doctor saw her and decided to run some additional test. Also, this time my niece started to present bruising all over her body and inside her mouth. We first thought it was an allergic reaction to the painkillers they prescribed. It looked like a rash on some parts of her body.
April 17th - 18th my niece is noticed to be pale and lost 5 pounds in 1 day. Doctors believe she's anemic and she has no apetite.. Test requested day before was to test for anemia. Also noticed a mole on her right leg got darker and grew over night.
April 20th Test results arrive and show she has a low platelet count, and her hemoglobin is dangerously low so she is anemic.
April 21st new test are ordered to test for infections. This is the same day I started to contact my friend's wife who is a pediatrician in Ohio. She recommends a platelet transfusion. I remember this day because I am in the process of registering the non profit in the US and had a meeting with my friend John who is one of the board members. John and I had a scheduled meeting that day and it was the day I asked if I could contact his wife and I contacted her right after the meeting.
April 22nd to 23st my wife couldn't understand what the doctor wrote.
April 24th I am stuck in Comfort + when my friends wife calls me asking if they performed the transfusion yet. I tell her no.
April 25th results come back showing my niece has no current infections. But did have previous infections. Doctors conclude that the previous infections wouldn't still be causing the low platelet count and order the platelet transfusion. My friend's wife agreed but was upset they hadn't ordered the transfusion on the 21st. She also says they should test for various cancers.
April 26th her first blood transfusion is ordered. There was some other info we couldn't understand
April 27th they don't see improvement in the platelet count and order another platelet transfusion.
April 28th they order more blood work and a bone marrow test they are concerned that her hemoglobin and platelet count continue to remain low.
April 29th another blood transfusion ordered.
May 1st they received the test results that indicated cancer in blood it also had some other which my wife couldn't decipher but it didn't have any mention of leukemia..
May 2nd it says patient notified of diagnosis of cancer. (Doctor claims she never said leukemia but my brother in law says that's exactly what the nurse told them and doctor the next day confirmed my wife also says the doctor told her leukemia when she asked.) The doctor did admit she told my niece she had cancer while she was alone and regrets doing so. Blood transfusion given.
May 3rd doctor says she spoke with specialist from another hospital, and they recommended x-rays. Platelet Transfusion given. Doctors worried about hemoglobin.
May 5th specialist says x-rays shows a growth my wife can't decipher where the growth is but the Xray was of the pelvic area. Family isn't TOLD THIS.
May 6th they want more test but can't because she received a transfusion recently. The test is a bone test what kind of bone test not sure.
May 8th they perform some test and blood transfusion given. Doctor still recommends bone test but can't because it would cause my niece to lose more blood and they don't want to risk it. This was told to the Family.
May 9th test show my niece has Rhabdomyosarcoma and further testing needed. Family isn't TOLD of this diagnosis.
May 10th test results show the cancer metastasized from her bones to her skin, lymph nodes and blood. Blood transfusion also given.
May 11th my brother in law is informed of diagnosis but told it was Osteosarcoma (They did correct that with him before he left but understandably, he told everyone the wrong one he is right now in a horrible mental state.).
May 12th she is at home complaining that its too cold even though it's hot as a oven in the DR right now.
The good news even though it's spread it's treatable and the survival rate is higher than leukemia.
The bad news as I was writing the good news, i just got a text that they are rushing her to the ER that she's bleeding a lot. They didn't tell me from where. I told my wife to close the center and just go to the hospital as well.
Here is what the records say according to my wife, might be missing some doctor lingo and other details and some stuff may be lost in translation. I am also writing it all out for my own sanity.
April 14th my niece woke up in pain, when she tried to get out of bed she fell to the floor her legs couldn't support her, doctor who saw her at the emergency room ordered an X-Ray.
X-ray showed something and Radiologist recommended a specialist read the X-Ray. Attending doctor overruled and noted no abnormality X-Ray looked normal and sent my niece home with pain killers, and told to drink vitamin D.
I remember teasing her telling her she just didn't want to go to school. She had a project due that day, I know this because I started a non profit int he DR in the neighborhood she lives in to help under resourced children. A lot of children come who are in her class and do their homework but supplies we sell dirt cheap. She would normally come as well to do her homework with three of her friends. The day before her three friends came to do a project on pollution. I remember her mom telling my wife she was going to send Yessy to the center to work on her project as well but never showed up. Her little brother who did come to the center told me she was home sleeping.
April 15th she didn't go to school either as she was in pain still but not as much as the days before.
April 16th my niece returned to the same hospital same doctor saw her and decided to run some additional test. Also, this time my niece started to present bruising all over her body and inside her mouth. We first thought it was an allergic reaction to the painkillers they prescribed. It looked like a rash on some parts of her body.
April 17th - 18th my niece is noticed to be pale and lost 5 pounds in 1 day. Doctors believe she's anemic and she has no apetite.. Test requested day before was to test for anemia. Also noticed a mole on her right leg got darker and grew over night.
April 20th Test results arrive and show she has a low platelet count, and her hemoglobin is dangerously low so she is anemic.
April 21st new test are ordered to test for infections. This is the same day I started to contact my friend's wife who is a pediatrician in Ohio. She recommends a platelet transfusion. I remember this day because I am in the process of registering the non profit in the US and had a meeting with my friend John who is one of the board members. John and I had a scheduled meeting that day and it was the day I asked if I could contact his wife and I contacted her right after the meeting.
April 22nd to 23st my wife couldn't understand what the doctor wrote.
April 24th I am stuck in Comfort + when my friends wife calls me asking if they performed the transfusion yet. I tell her no.
April 25th results come back showing my niece has no current infections. But did have previous infections. Doctors conclude that the previous infections wouldn't still be causing the low platelet count and order the platelet transfusion. My friend's wife agreed but was upset they hadn't ordered the transfusion on the 21st. She also says they should test for various cancers.
April 26th her first blood transfusion is ordered. There was some other info we couldn't understand
April 27th they don't see improvement in the platelet count and order another platelet transfusion.
April 28th they order more blood work and a bone marrow test they are concerned that her hemoglobin and platelet count continue to remain low.
April 29th another blood transfusion ordered.
May 1st they received the test results that indicated cancer in blood it also had some other which my wife couldn't decipher but it didn't have any mention of leukemia..
May 2nd it says patient notified of diagnosis of cancer. (Doctor claims she never said leukemia but my brother in law says that's exactly what the nurse told them and doctor the next day confirmed my wife also says the doctor told her leukemia when she asked.) The doctor did admit she told my niece she had cancer while she was alone and regrets doing so. Blood transfusion given.
May 3rd doctor says she spoke with specialist from another hospital, and they recommended x-rays. Platelet Transfusion given. Doctors worried about hemoglobin.
May 5th specialist says x-rays shows a growth my wife can't decipher where the growth is but the Xray was of the pelvic area. Family isn't TOLD THIS.
May 6th they want more test but can't because she received a transfusion recently. The test is a bone test what kind of bone test not sure.
May 8th they perform some test and blood transfusion given. Doctor still recommends bone test but can't because it would cause my niece to lose more blood and they don't want to risk it. This was told to the Family.
May 9th test show my niece has Rhabdomyosarcoma and further testing needed. Family isn't TOLD of this diagnosis.
May 10th test results show the cancer metastasized from her bones to her skin, lymph nodes and blood. Blood transfusion also given.
May 11th my brother in law is informed of diagnosis but told it was Osteosarcoma (They did correct that with him before he left but understandably, he told everyone the wrong one he is right now in a horrible mental state.).
May 12th she is at home complaining that its too cold even though it's hot as a oven in the DR right now.
The good news even though it's spread it's treatable and the survival rate is higher than leukemia.
The bad news as I was writing the good news, i just got a text that they are rushing her to the ER that she's bleeding a lot. They didn't tell me from where. I told my wife to close the center and just go to the hospital as well.
May 12, 2023, 10:07 am
#28
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Just got an Update, emergency room doctor knows about my nieces case, and told them to take her to the Malecon (that's the water front) he said the sun will do her good and not to worry that she just had a small bleed and that will happen.
and i apologize for writing so much i just wish I was there and need to keep my sanity with my bad grammer.
and i apologize for writing so much i just wish I was there and need to keep my sanity with my bad grammer.
May 14, 2023, 10:59 am
#29
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Yesterday they took her to the hospital and she's currently in Intensive Care.
She had excruciating pain and was vomiting a combination of blood and feces. I asked my wife to speak with the doctor because my brother in law just isn't passing along the information as well as before because he is obviously under a lot of stressed and depressed.
My wife says the doctor told her she has multiple tumors in the chest area as well as the pelvic area. The larger one is in the pelvic area. They didn't tell her exactly how many but she said she didn't ask either. Right now they have her on some strong pain killers but admitted they are just buying her time.
She had excruciating pain and was vomiting a combination of blood and feces. I asked my wife to speak with the doctor because my brother in law just isn't passing along the information as well as before because he is obviously under a lot of stressed and depressed.
My wife says the doctor told her she has multiple tumors in the chest area as well as the pelvic area. The larger one is in the pelvic area. They didn't tell her exactly how many but she said she didn't ask either. Right now they have her on some strong pain killers but admitted they are just buying her time.