Christmas 2006
July 2007 - Right eye swelled up
August 2007 - Diagnosed with AML 8/22/07
September 6, 2007
Admitted to ICU for approx 10 days due to lung infection & coughing up blood. Placed on oxygen, no immune system, scoped lung infection and flushed it out. Lost hair due to chemo. Sick to stomach. Worse week of his life.
September 18, 2007
Released from hospital for a week or two.
October 2, 2007
Found out only sister is NOT a match for blood stem cell transplant.
October 3, 2007
Supposed to be readmitted to Puget Sound VA Medical Center for 2nd chemo treatment.
(Aunt Marie, friend Jason Copus, Aunt Nan, Charlie, Aunt Barb)
They couldn't because he was sick.
October 9, 2007
Readmitted to hospital for 2nd chemo treatment.
October 15, 2007
Released from hospital. Charlie must go in three times a week for blood transfusions. Waiting for 3rd chemo treatment and hopes of finding a donor for the blood stem cell transplant.
January 1, 2008
HAPPY NEW YEAR!!!
Well, we finally received some good news yesterday. The blood stem cell transplant is a go. Charlie had to take 5 different tests to meet the criteria in order to receive the transplant and without it he would die and very soon. They found a donor from the National Registry Donor List (1 donor in 6 million matched). We don't know the percentage of the match or the chance of success at this point. The transplant is scheduled for 1/16/08. Charlie will be inpatient for approx 3-4 weeks during this process. They will completely radiate his entire body & kill all of his immune system, so this is a very crucial time. Mom is in Seattle with him for the next 3-6 months as a non medical assistant to care for Charlie 24/7. He will be on 50 different medications, iv nutrition and hydration. God has truly blessed us and given Charlie a second chance at life. Oh yes, he has hair right now and looks like the Charlie we all know and love.
January 3, 2008
Donor match needed to meet 10 different tests. As far as we were informed, the donor is a perfect match (10 for 10). Met with Dr. Chauncy - very rude and condescending. Acted like Charlie would be non-compliant. Charlie said Dr. Chauncy looked at him like he was apalled. Cut consultation short, had other people to see & will meet with us again in a week. Charlie stated, on the way home, that this whole process didn't even seem like it was worth it. In other words, his life. I was very upset with meeting.
January 13, 2008
In over a week we've been to the hospital every single day. Charlie has been to the dentist 4 times, had a 3 hour root canal, EKG's, had his pick line removed, had a Hickman surgically inserted right above his heart (2 iv lines, 1 for the stem cell and blood, the other for any other medications), been to Radiology, Cardiology, found out he has a weak heart, lungs are not working 100%, 2 more family consultations, made after care plans, etc, etc. Charlie will start the full body radiation on Weds 1/16. He shaved his head last night as he will lose all his hair again. It has been a very long and trying week and more is yet to come.
January 18, 2008
Charlie was admitted inpatient yesterday 1/17/2008 due to getting very, very ill from the radiation treatments. He couldn't keep down any fluids or food. This is the (TBI) machine where Charlie has to sit for 18 minutes, each side, front and back for each of the six treatments. Charlie had completed 3 treatments (2 on Weds, 1/16 & the morning treatment on Thur, 1/17 when the TBI machine "broke down") They had to transfer him to Seattle University for his evening treatment last night. He received his 5th treatment back at the VA Puget Sound HCS at 7am this morning, Friday, 1/18 - as the machine was supposedly "fixed".
January 21, 2008
Since Weds 1/16 Charlie received a total of 6 radiation treatments. (2 - Weds, 2 - Thurs, 2 - Fri) He also received 2 chemo treatments (1 - Sat, 1 - Sun) Monday, today, was a day of "rest". This is the normal procedure prior to patients receiving a full body blood stem cell transplant. The donor is a female, blood type A positive (Charlie is 0 positive - these are apparently compatible blood types), she is from Germany, and the stem cells were flown in today at 4:30 pm PT. They were sent to the Fred Hutchinson Center to the cyrogenics? so they can process them and prepare them for Day Zero, which is the day of the transplant (tomorrow). As for right now, nobody knows exactly what time they are doing the transplant. They believe sometime in the early afternoon.
January 22, 2008
DAY ZERO
The hospital counts down until the actual day of the transplant. This is called day zero. They also consider this day Charlie's new birthday. They are to call the apartment around 8am PT to let me know what time they are doing the transplant.
Didn't wait around, got to the hospital around 8:30am and Charlie was awake. Doctor Bill (Charlies doctor) came in and talked to us a little before rounds. He will become A+, he'll of course never be able to donate blood, he won't be able to have children, he is actually receiving the bone marrow, the donor probably had to go through their procedure at least three times and it is a very painful process. We won't be allowed to know who the donor is for at least a year. Charlies stomach and chest were hurting, so they scheduled a chest xray for him prior to the transplant.
Originally the transplant was scheduled for 4:30pm, then moved to 2:00pm, then did not actually happen until 3:35pm. Nurse Lisa & nurse Maryann were present at the start of the transplant. Lisa then left & Maryann continued the transplant. It was just a little bag that looked like blood (very bright red) and was hooked up to his Hickman IV which goes directly to his heart. Charlie started to get flushed and stated his chest was burning. Then Charlie got violently ill & was throwing up yellow and green bile. Maryann injected some ativan to try to calm him. Nurse Lisa came in and did not seemed pleased. When she left the room, within minutes, Charlies regular nurse, Donna, came in to the room, right around 3:50pm and stated she would finish the transplant. Maryann didn't seemed too pleased that she couldn't finish the transplant, but I was happy Donna came in when she did. She seems more in tune with Charlie and his concerns & she listened closely to how he was feeling and acted accordingly.
She hooked up anti nauseous medicine to his iv, he started to get cold, so she brought him heated blankets and she gave him some morphine to help with the pain in his chest & his stomach, which was really hurting now. The whole process lasted one half hour, which seemed like a lifetime. The transplant was over at exactly 4:05pm. Donna explained the probable reason for his unusual reaction, that is was due to the different blood types (o+ to a+) and the fact that this bone marrow was fresh and not frozen, shouldn't have caused this, because there were no preservatives in it, but it was more likely when they processed the bone marrow, there were still red blood cells present (which weren't supposed to be) and they were attacking Charlie's body. He requested no visitors while he was on morphine and was drifting off to sleep, when I left around 5:00pm.
More updates to come in the near future.......