My niece has leukemia (update: Aveolar Rhabdomyosarcoma) and just need to vent
May 26, 2023, 8:32 pm
#62
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Today I took my brother in law and his wife to dinner, we went to a gas station of all places which has a pretty good butcher shop in it, and they cook the meat for you.
He showed me a picture of my neice from yesterday, and her upper lips swollen she has a tube coming out of her nose suctioning the blood that shes losing out. Shes lost most of her hair as they continue to give her chemo.
Doctors have admitted they made a mistake by intubating her, and now fear taking the tube out, her hemoglobin is still at 11 which is ok, but her platelets are only at 42,000 and should be 150,000 or more. but they are higher than what they were thy were as low as 4 which i assume is 4000.
There is still a push by the family to get her out of that hospital but the doctors ay shes too weak to move however we are still fighting for that but her dads all but given up.
As I said yesterday took her little brothers to summit world which is a trampoline place, and a mundo rueda a roller skating rink. ALso ate pizza and tacos. We were going to do a movie as well but they were having a buy 1 get 1 free deal and sold out. They were super tired today they just wanted to lay down all day.
Thank you all that are reading this, i really just want to thank everyone for their support and prayers.
He showed me a picture of my neice from yesterday, and her upper lips swollen she has a tube coming out of her nose suctioning the blood that shes losing out. Shes lost most of her hair as they continue to give her chemo.
Doctors have admitted they made a mistake by intubating her, and now fear taking the tube out, her hemoglobin is still at 11 which is ok, but her platelets are only at 42,000 and should be 150,000 or more. but they are higher than what they were thy were as low as 4 which i assume is 4000.
There is still a push by the family to get her out of that hospital but the doctors ay shes too weak to move however we are still fighting for that but her dads all but given up.
As I said yesterday took her little brothers to summit world which is a trampoline place, and a mundo rueda a roller skating rink. ALso ate pizza and tacos. We were going to do a movie as well but they were having a buy 1 get 1 free deal and sold out. They were super tired today they just wanted to lay down all day.
Thank you all that are reading this, i really just want to thank everyone for their support and prayers.
May 28, 2023, 7:23 am
#64
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She has opened her eyes and family thought it meant she woke up but doctors say shes still in a coma and its not uncomon for that to happen with medically induced comas. nurse informed the family we still havent been able to see her outside of pictures due to her being in isolation. she is completely bald now atleast in the last picture i saw it seemed so
May 28, 2023, 7:04 pm
#65
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Another update, it's mothers day here in the DR and they allowed her mom to suit up and visit with her for 15 minutes. She is distraught and didn't really say how she looked. What we did learn today is the government hasn't been covering her pampers or chucks so those who donated it your money will partially go to that if not all depends how long she stays where she is, and I thank you again for all the supports and prayers. I personally am stuck in limbo I feel blah. I really miss her.
May 31, 2023, 10:21 pm
#66
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I haven’t posted an update in a few days because well there was no updates. That is until about ab hour ago.
They removed the tube and woke her up from the coma. She is responsive and trying but unable to talk.
they broke one of her bones to do a marrow test her dad says broke but I’m not really sure that is what he meant.
she is completely bald and still bleeding a lot but they have it more under control.
The brain infection is gone but she now has conjuntivitis but they are working on clearing that up.
so really good news!!!!!
They removed the tube and woke her up from the coma. She is responsive and trying but unable to talk.
they broke one of her bones to do a marrow test her dad says broke but I’m not really sure that is what he meant.
she is completely bald and still bleeding a lot but they have it more under control.
The brain infection is gone but she now has conjuntivitis but they are working on clearing that up.
so really good news!!!!!
Jun 7, 2023, 3:46 pm
#68
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No updates until today, they are planning of bringing her home and if done they are going to fight for a referral which was promised but hasn't been given yet.
They have been treating her almost daily with chemo. Her immune system is better her platelet count have steadied but still is low and her hemoglobin is at 11.
I'm exhausted also her little brother is now suffering from depression because he misses his sister and hasn't seen her in almost a month.
They have been treating her almost daily with chemo. Her immune system is better her platelet count have steadied but still is low and her hemoglobin is at 11.
I'm exhausted also her little brother is now suffering from depression because he misses his sister and hasn't seen her in almost a month.
Jun 7, 2023, 7:14 pm
#70
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Shes home and has an appetite shes been craving fried ripe plantains she also complains of being really hot which is a good sign means shes jot as anemic but she is complaing of back pain. but shes talking which is also good
Jun 11, 2023, 10:15 am
#72
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She's back in the hospital a day after she came home she got a really high fever and she's now again in the hospital. She's in a lot of pain though and the hospital allowed us to get her an air mattress which has helped.
She's been craving a lot of fried foods, mostly fried salami and sweet plantains. She has her appetite back she's not talking much but does understand and communicates. She's gone blind in her left eye but doctors are hopeful that can be corrected with surgery later on.
They are still trying to bring her to the US or colombia but the doctors here give a new execuse when we bring it up.
She still needs to get transfusions but it isn't as often as before.
She's been craving a lot of fried foods, mostly fried salami and sweet plantains. She has her appetite back she's not talking much but does understand and communicates. She's gone blind in her left eye but doctors are hopeful that can be corrected with surgery later on.
They are still trying to bring her to the US or colombia but the doctors here give a new execuse when we bring it up.
She still needs to get transfusions but it isn't as often as before.
Jun 11, 2023, 4:00 pm
#74
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She's back in the hospital a day after she came home she got a really high fever and she's now again in the hospital. She's in a lot of pain though and the hospital allowed us to get her an air mattress which has helped.
She's been craving a lot of fried foods, mostly fried salami and sweet plantains. She has her appetite back she's not talking much but does understand and communicates. She's gone blind in her left eye but doctors are hopeful that can be corrected with surgery later on.
They are still trying to bring her to the US or colombia but the doctors here give a new execuse when we bring it up.
She still needs to get transfusions but it isn't as often as before.
She's been craving a lot of fried foods, mostly fried salami and sweet plantains. She has her appetite back she's not talking much but does understand and communicates. She's gone blind in her left eye but doctors are hopeful that can be corrected with surgery later on.
They are still trying to bring her to the US or colombia but the doctors here give a new execuse when we bring it up.
She still needs to get transfusions but it isn't as often as before.
Jun 11, 2023, 4:06 pm
#75
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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.