THE TEAM
Dr. Peter Rintels and Chris Clements
10/05/00 at George Clinic at the Rhode Island Hospital
A PEACEFUL END TO A LONG HARD BATTLE
Chris did come home from RI hospital Monday Oct 22 after being admitted Monday Oct 15
Chris continued his Radiation as outpatient till Friday October 26, but was readmitted for what was hoped to be just a few days of inpatient pain management with the hope of getting his pain under control to enjoy a few days home before going to Boston.
Unfortunately the pains increased and new pains in his side cropped up. We tried decreasing the pain meds but it was too much for him and we ultimately had to increase the meds to the point that Chris was in a fairly confused state and was still uncomfortable whenever he moved. Through out this he was getting x-rays, C-scans, etc to try and locate the source of the pain. He received his last dose of 15 days of radiation on Monday. Oct 29, and would have been heading up to Boston for the stem cell tranfer the following week.
Friday, November 2 we got the call from Peter. His latest Bone marrow had come back positive. The chromosome transposition that is evidence of APL leukemia was back. On top of this his blood and marrow was not recovering from the damage by the radiation. In particular, he was having trouble maintaining a safe platelet count even with platelet infusions.
Throughout Sat, Sun and Monday there was little sign of improvement. They had determined that there was a bad infection to a section of his bowels, which may or may not be due to a leukemic cluster (not sure if that is the correct term). Deb and I left the hospital late Monday (actually I think it was Tuesday by then), after a fairly intense day that required full attention by both Deb and I. But he had seemed to be resting and stable when we left.
Early Tuesday (5am-6am?) we got the call from the hospital that things had gone really bad and that Chris was to be put on a respirator and sent to the ICU. In 3 years of some really bad relapses and complications, Chris had never had to go to the ICU.
Im not up to going through all the details of what Chris went through Tuesday and early Wedsday, but he was heavily sedated and immobilized with drugs. The ICU staff assured us that he was medicated enough not to feel any pain but that he probably could hear us talking to him. I pray that that is true. Basically, as I understand it, the acid toxicity in his blood due to the bowel infection was limiting oxygen to his organs and they were all slowly shutting down on him. He fought it for a long time and amazed the ICU staff when they had all but giving up and then for no reason his blood pressure doubled reaching almost normal levels, and he started holding regular heart rates. He kept that up for quite a while and they were starting to get ready to do hema-dialysis(sp) which had previously been ruled out because of low blood pressures. But eventually his heart rate started to slowly diminish until it was painfully obvious to even me that this was the end of a long and hard battle. Debi and I both told Chris that it was okay to let go if he wanted to and we stood by him as he peacefully passed on from this world at 3:00 am November 7, 2001. There is no way I could relay how peaceful and non-traumatic it actually was. I've been saying that, it was really a gift from God. After the news of this last relapse, I think the impending transplant would at the most have be a postponement of the inevitable and would have carried with it more suffering then satisfaction of life.
Friday, October 19, 2001
More Delays.
Chris's Radiation didn't actually get started until 4 October. He is to have 15 days of localized radiation to his spine at RI hospital. This is only on non-holiday weekdays. Per schedule he should have been finished October 25th and we had a tentative plan to be admitted back into NEMC on the 31st (Halloween) and start pre-transplant chemo and radiation, with "Day Zero" (infusion) being Nov 5th. That would have been 3 years to the day after first diagnosis. However we lost two planned days of radiation already. One day Chris was too sick and the other was an administration screw up at the hospital. Backing up some. When we first got back from NEMC we figured that this would be kind of a break before the transplant. After getting back from NEMC, the pain in Chris's leg and groin continued to get worse to the point that he basically cannot walk. On top of that his potassium level has been getting drained from the IV ant-biotic (actually its an anti-fungal med). So he was receiving multiple bags of potassium each day at the clinic after doing his radiation. Last weekend he had to get the potassium at home, but evidently they did not prescribe enough. When we had his potassium checked at the clinic Monday, it was too low to replace in one day and safely send him home so they had to admit him into the hospital and keep a heart monitor on him. They also finally stopped the anti-fungal med that is suspected to be draining his potassium. If it wasn't for the fact that he is scheduled for the transplant they would have stopped it earlier but he still has some crackling in his lungs and they want to make sure the lung infection is completely gone before starting the transplant. He is starting to maintain his potassium better now with only 1 -2 infusions/day and will probably be able to come home Monday. Chris's spirits are not to high now (frankly he's pissed). He knows when he goes back to NEMC it will be for several months and was hoping to enjoy some freedom before that. I'm not sure what our new admittance date for the transplant will be, but I'm guessing around Nov 5th assuming we dont have any more delays. We knew we would be spending Thanksgiving up there but were kind of hoping to be home by Christmas, that is probably a very optimistic hope.
