The transplant - It’s been… interesting. It is so vastly different from his first that it is hard to wrap my head around it. Joe checked in to the hospital on the 6th of December to have his new hickman catheter placed. That was done with no problems and the conditioning began the next day. This go around the conditioning was less intense. Over 5 days Joe had 2 different types of chemo and 2 days of ATG (immunosuppressive therapy). He then had one “rest day” before the transplant.
At this point everything had gone decently. The conditioning had taken its toll on Joe physically causing pretty extreme fatigue and the mental aspect of being in the hospital again was extremely difficult for both of us. The only benefit of having had spent so much time in the hospital is that we now know what to ask for. I stayed each night and they thankfully gave us the biggest room with a long enough bench for me to us as a bed rather than a recliner that doesn’t fully recline. Additionally this time we know what prescriptions Joe responds to the best for pain and nausea. This helped us to stay ahead of the curve with some of the side effects.
The transplant day was exciting and uneventful. We were all crammed in to that little room and got special permission to share a meal beforehand (typically they don’t allow anyone to eat in the room other than the patient). Joe felt like Indian food, which was exciting considering at that point the last go around he was only able to eat soup and smoothies. Overall, things were going well until the next day when we were told that one of the screenings of the donated cells tested positive for a contaminant. We were told it could be a virus or bacteria that the donor had without knowing it. This of course hit us hard. The very thing that was intended to save his life could do irreparable damage. This is something that does occasionally happen and unfortunately there is nothing that can be done differently. Even if the contaminant was identified before transplant they would have had to give him the cells anyways since his body desperately needed those cells to rescue his immune system. Basically, the impact of no cells is far worse than the risk of infection. They immediately started Joe on IV antibiotics and drew cultures in order to monitor him and we immediately began praying. We spent a couple days in fear but thankfully, amazingly, Joe never showed any symptoms of infection. It was determined about a week later that the sample taken was a false positive. Joe’s cultures never came back positive for contaminants. While I hate that that fear was a part of this story, I am so thankful for the miracle of protection over Joe and his immune system.
At this point while we were really thankful, we were still holding our breath. We wanted so desperately to get out of the hospital and our medical team was on board with that but it was necessary to keep an eye on Joe for a few days. We were not in the clear of fever risk and he had an enormous amount of swelling from all the fluids they were pushing to protect his kidneys from the chemo. Joe actually gained and lost 17 pounds within 3 days. As you can imagine that is not comfortable. Thankfully, after the swelling and a few other things were resolved they felt comfortable discharging Joe to daily appointments at the clinic! While we were hoping and praying for this, I think we were both totally shocked that we actually got out. While 13 days inpatient is no picnic, it’s a heck of a lot better than 4 weeks.
So we were out, and in disbelief. We had the most wonderful care in the hospital with nurses that I truly love (not just saying that because they keep my husband alive, I consider them friends). With that being said, the clinic is like home for us. We’ve been there for so long now (at this point multiple times a week for over a year). The staff understands our story, in some ways, better than we do. They celebrate, mourn and care for both of us in a way that is so appropriate and comforting.
Again, things were going smoothly until they didn’t. Joe started having really crazy knee pain. It got so bad that he was not able to sleep on Wednesday night and he was unable to walk on Thursday. Thankfully our PA understood Joe’s pain level and gave him an appropriate amount of pain medication. We went for an x-ray and were scheduled for an MRI the next day. Oddly the pain resolved itself as quickly as it came on. Nothing was determined to be the cause. The only thing that I can figure is that with all the swelling and weight gain something got pushed out of place and was causing nerve pain.
Finally, to wrap up this insanely long post- We ended the year with some good news. All of Joe’s numbers are been improving!!!! This is the first time we’ve seen growth across the board in 8 months. This is Huge for us but still a bit daunting when we look at how far we have to go. For reference sake here are Joe’s numbers next to a normal range in parentheses. White Blood count 1.4 (3.2-9.8) Hemoglobin 7.9 (13.7-17.3) and Platelets 67 (150-450). As you can see we are a LONG way from normal, but we are celebrating each inch we get. Joe’s platelets are the highest they’ve been since the first of May and the most exciting this is that he has gone a full week without needing any blood or platelet transfusions.
Our next steps include a lot of waiting. We are now on day 18 sometime after day 60 they will give Joe a boost of his donor’s stem cells. I believe they will do this at least twice with the hope that this will disallow the cancer growing again. If all goes well we hope to be back home sometime in April. We’re praying hard that 2018 will be marked by healing.