We are officially in Transplant. John’s last MRD test showed that his Leukemia burden was on the rise so, Dr. Pui and Dr. Leung moved mountains to start the Transplant conditioning process earlier than planned. It’s not ideal to start transplant MRD POSITIVE (it’s devastating really) but John’s organs are not holding up very well and he can’t tolerate another round of ReIntensification in addition to the Transplant conditioning (chemotherapy).
This past Wednesday morning was a whirlwind of appointments and meetings, tying up all of the loose ends of the pre-transplant process. The most stressful appointment was his radiation simulation. It was a NIGHTMARE! To our surprise John’s total lymphoid radiation required a radiation mask. It’s a mesh mask that is molded to his face and BOLTED to the radiation table! His legs are spread apart and put in a leg mold and his “boy parts” are placed in a very archaic metal device to shield them from radiation. It is terrifying and demoralizing. After that appointment John melted, crying for hours. It was a whole new feeling of brokenness.
After a very emotional morning we dragged ourselves to the clinic for our consent meetings, to sign the protocols for the Haploidentical Donor Hematopoietic Stem Cell Plus NK Cell Transplantation. I was required to sign my donor portion first. I entered the consult room, alone, and was caught VERY off guard when I found an advocate waiting for me in the room with Dr. Leung and his research nurse – for whatever reason – I felt ambushed. She was a seemingly nice older women but I was in NO mood to go over the protocol word for word. I’d already combed over it multiply times – no matter what the risks, I was signing it! I shot her a nasty glance, grabbed the pen, flipped to the signature page and attempted to sign it. My new advocate friend found the need to grab my arm and literally gasp at the thought of me just signing the paperwork. She thought maybe I didn’t “understand” the risks. She naively attempted to “dumb it down” until I exploded – I think venom was spewing from my mouth as I ripped her to pieces. You would have thought that would have shut her down – but she proceeded to talk down to me (like I was a child), going on to explain the new chain of command - that I was no longer “allowed” to contact Dr. Pui and Martha May; they were not his caregivers while in Transplant. That was it – claws came out! I don’t remember much of what I said but I made it very clear that Dr. Pui and Martha ARE and ALWAYS WILL BE part of John’s team of caregivers. I think she finally understood I was well educated and well connected. She never opened her mouth again. She sat quietly during the next meeting where Rich, John & I discussed the recipient portion of the protocol in great detail. It was an emotional meeting, we left it a little worse for wear but got through it.
We checked into the Transplant Floor late Wednesday night, about 9 o’clock. John settled into his new patient room and Rich, Bella and I set up the parent room – settling into our new home for the next 40+ days. Emotions were high and there were a lot of tears all around.
Yesterday, Thursday, November 13th was Day -8 in our transplant countdown. Since we moved his transplant day up we needed to shave off day -9 and combine that day’s radiation to day -8. So, early yesterday morning was his first (of 4) scheduled radiation appointments. We woke to John having a full-blown panic attack, refusing to go to radiation. Not at all a surprise given the nightmare the day earlier. John was curled up in the fetal position on his hospital bed, crying and pleading with us not to take him to radiation. It was heartbreaking. After 45 minutes of sobbing, John called out for Martha. I called her in the clinic … before I could even give her a reason for John needing her, she said “I’m on my way” – she must have ran across the hospital because she was here within minutes. She knelt down next to him and he shared with her his fears (their relationship is built on trust and in that moment you feel that John entrusted her with his deepest feelings). But, we were no closer to getting him out of the bed and down to radiation. Que the soft lights and the angels singing … in walks Dr. Pui. The room goes totally quite for a moment – the only sound is an occasional sniffle from John. He told John, “I’m here to take you to your radiation appointment” (he must have heard John was having a difficult time). He went on to say that in the 38+ years he’s worked at STJ he’s never been to radiation department and has never taken a patient to a radiation appointment. So, off they went; Rich pushing John in the wheelchair and Dr. Pui by their side. It was a tender moment. Not only did Dr. Pui walk John to his appointment he stayed and sat with Rich in the waiting room. So, even as we enter this new phase, Dr. Pui and Martha continue to support John and our family. As I mentioned earlier, they will always be John’s doctor and nurse, always!
When John returned from his first radiation appointment he was completely wiped out. He had a lot of medication and he was emotionally exhausted from the morning’s ordeal. He slept through his first dose of chemotherapy and woke shortly before his 2nd radiation appointment for the day (Yes – two radiation appointments on day -8). It went just a little bit smoother. He was still anxious and reluctant but succumbed to the medications and lay defeated on the radiation table. After, Rich brought him back up to the transplant floor and snuggled him in bed for the night.
Dr. Pui and Martha came in to check on their sweet boy and we called it a night. Day -8 was finally over.
Today, Day -7 started off with radiation appointment number 3. He again was hesitant but didn’t resist as emphatically as yesterday. When he returned from radiation Dr. Pui was there to greet him (his second visit to the transplant floor today). I could tell that John felt proud of his accomplishment and Dr. Pui was equally pleased. Their relationship is certainly a special one! His second dose of chemotherapy went well and he had a short catnap before heading to his 4th and final radiation appointment late this afternoon. He had some moments of alertness today but tonight he is quiet and for the moment comfortable.