Last year, my aunt (rrpate on here) and myself held some auctions here on HCW for my uncle James who was diagnosed with acute myeloid leukemia. There were a lot of wonderful people on here who contributed in some form or another to the auctions and also lent an ear and or gave encouragement & support.
The timing of the diagnosis meant that we would spend Christmas at the hospital and we did. Between everyone being laid off (we live in Michigan) and my aunt (Uncle Jame's wife) having to miss months of work, financially everything was a complete mess (still is LOL). But we managed to get everyone down there and we enjoyed Christmas. If you ever want to have your priorities put in place and to have a good understanding of what matters the most..........spend your Christmas in the hospital and see all the sick and dying people.
Anyways, out of all the siblings my aunt (rrpate on here) ended up being the only bone marrow match for my uncle James. Of course it had to the sibling that lives the furthest away
. And as selfless as she always is, she took on the expense of flying (she lives in FL), going to U of M hospital for checkup, enduring shots in the stomach etc.
My uncle James did absolutely fantastic all through the awful chemo, radiation and the stem cell transplant. You hear about these people getting awful sick.......but he never did get super sick. Throughout the whole thing I don't ever remember him complaining. He basically lived at the hospital for what seemed like forever. Then when was released from the hospital he had to live at the transplant house for daily check-ups. Finally he was able to go home! He had to have regular check-ups at U of M hospital though. They told him he was a 10 of 10, a poster child for stem cell transplants. Everyone thought we had it licked. His tests showed he was in remission and all was great.
Oct 28th, Wednesday my uncle said he felt winded just walking room to room. It was too late in the evening to make an apt at the local clinic. He had a scheduled check-up down at U of M the very next day anyways (Thursday). He arrived down at U of M for his checkup. Told them he felt winded. He had NO other pain.......NOTHING. They checked his oxygen level and it was only 75% so they put him in the ER and then he ended up in critical care floor (ICU).
The doctors were not sure exactly what the problem was. They put him on a face mask respirator and pumped him full of a full range of every antibiotic to kill any type of possible infection. Each X-ray they took of his chest looked horrible and there was never any improvement. Friday, the 30th early AM they removed the mask and put him on the respirator which has the tube that goes down the throat. This is painful and uncomfortable so they sedate the person and keep them sedated so their body does not fight it. My uncle was knocked out and the machine was breathing for him. The cultures kept coming back negative. It was negative for the flu, it was negative for the swine flu and blah blah blah. So then they tried steroids. Still no improvement. So on November 2nd they wanted my uncle to not move a muscle, they wanted 100% of his energy used to heal the body and not expending a single ounce of wasted energy so they put him in a full medicated coma. Still no improvement. They did say that my uncle was the worst case on the ICU floor, which I knew could not be good. The respirator was at 100% but the monitor kept showing his oxygen level to be in the 80's. They would draw his blood for blood gas analysis and the numbers would keep getting lower. I don't know the medical terms but they told us the lowest the number should be is 60 something and his last draw of blood was only 44. My mom asked the respiratory therapist on Nov 3rd how low his oxygen level can be without doing any damage but the doctor said that there was damage being done because it is not good to breath in 100% for this long of time. They said a day or 2 is fine but not this long. During this whole time they could NOT move my uncle to do a cat scan or an MRI because of the respirator. November 4th my mom (Uncles James's sister) called me and told me they were told he only had a 1% of survival (the 1% was because the doctor said he can't play God) and he directed my mom to call all the family. They doctors told my mom he HAD to show some kind of improvement by the next day or it was pretty much a done deal. I packed my crap and headed down there. They actually had been treating him for
graft vs. host disease with
BOOP (
Idiopathic Rapidly Progressive or Fulminant BOOP. This is a very rare form of BOOP. The duration of illness is generally a few days. It is a very serious form of the disease with severe symptoms and respiratory failure. Unfortunately, a high percentage of patients do not survive, but prompt initiation of corticosteroid therapy may be effective) but we were not aware that they had been treating him for a full day. We were told graft vs. host could have been one of a number of things (the others being, virus, bacteria infection, pneumonia etc etc etc). We were NOT aware at how deadly graft vs. host could be. We actually thought that if that is what he had, then it would be survivable but he would have to start all over again with the chemo, radiation and another transplant. However the type of graft vs. host he had is VERY aggressive and usually does NOT respond to medicine. They had been treating him in the hopes that it would respond and they wouldn't have to panic us because they would have good news for us. Obviously that was not the case.
I arrived down at U of M hospital. Wow.......I guess I was not prepared to see my uncle all hooked up like that (I really don't think anyone could prepare themselves for that). I took one look. Had to catch my breath and bawled my eyes out. The kind of graft vs. host he had was very rare. In the meeting with the doctors and our family they told us it was the worst case they had ever seen as far as how fast everything was. My uncle was LITERALLY fine one day and then not the next day. The type of graft vs. host he got is very aggressive. The machines (respirator) and everything was maxed out at 100% but the oxygen was still not getting into his blood. They told us it now was the point of no return because with his oxygen was so low for too long, the blood gas tests were getting worse......he was not getting enough oxygen to his organs or brain. There had been NO improvement by the next day. He had tubes coming and going everywhere. I counted once the bags of IV stuff and there was 9, not including the respirator machine. The doctors apologized and said his case was a super sad just because everything was going so wonderful and this was completely unexpected and the speed of how fast things went........we are still in shock, including the doctors. We asked the doctors if we made the right decision by having the stem cell transplant in the first place and they said he would not have lived without it. We asked the doctors if somehow we missed ANY signs of the graft vs. host disease? He said the graft vs. host usually manifests itself by attacking externally first, usually presenting itself as rash. The form my uncle had attacked internally instead and went straight for the lungs. There was NO other signs other than being him being winded--That was IT. There was nothing else to miss......no other signs! The doctor also said it would not have mattered if he had come in on Wednesday instead of Thursday. One day he didn't have it and the next day he did and once it was there, that was it. The rest of family arrived at U of M hospital. We had them disconnect the machines. They made sure my uncle was on a TON of pain meds so he would not feel anything. I asked them 1000000000 times if they were SURE he could not feel anything.........we did NOT want him to feel like he was suffocating to death because that is exactly what would happen.......suffocation. He hung on trying to breath on his own for 45 minutes. We all cried and cried and cried and cried. We watched the monitor as his numbers dropped.......dropped down to flat lines and zeros for his blood pressure, heart rate and oxygen. The doctor then came in and listened with a stethoscope on his chest for a heart beat and then she opened each eye one at time and shined a tiny flashlight to look for any response and confirmed his passing. That all happened November 5th.........we all said our goodbyes.........except my uncle...........who thought he was being sedated to help an infection get better........but never was to wake up ever again. He was only 47 years old...........the baby of all his siblings. His daughter just graduated high school. All our eyes are beat red from crying......I came home today and finally after a week with only getting 1 to 2 hours most of sleep each day........I went straight to bed. It is hard to close my eyes.......cuz I see my uncle and I cry a lot still. I think we are all still in great shock. The doctors said when things are unexpected like this and as fast as this with no time......it is super hard. He was so easy going and LOVED to talk. He would talk to everyone and anyone. He loved telling jokes and laughing.......he had lots of laugh lines or laugh wrinkles, whatever you want to call them. There were times when we all lived together. I would say he was like a dad but that doesn't fit......since I guess he would be more like a brother since he was just a really big kid at heart. There is only 13 years difference between us. I was actually in Kindergarten and he was a senior and we rode the school bus together
.
Anyways.........I just wanted to say thanks for the support over the past year. I don't expect anyone to read this mile long post in its entirety but do hope you see the thanks. I just felt like talking I guess and no one was awake in my family when I started typing this out.........and it is now 5:00am and everyone is still sleeping of course. I guess I value my life so I didn't call my mom.
Everyone is physically and emotionally exhausted here so I didn't want to bother anyone.......so sorry for long book.
Thank you for the kindness. 
Re: Thank you for the kindness. 
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