I am so, so grateful to have a peaceful, lazy morning at home today! Our first week home from transplant may have been one of the most exhausting. This is partially due to the end-of-semester crunch I am feeling, and partly because of our almost daily trips to the hospital. We’ve been back to the bone marrow clinic for labs and counts several times, and while Ollie’s cells remain relatively low, all the results have been within the expected range of a transplant patient. I talked with the doctor yesterday about when he could go back to school, and just be out in the world without a mask, and expectedly, there is no set date, but the average is six months post-transplant. That means April. Clearly we have some strategizing to do with the school! Thankfully they have gone above and beyond for us time and again, and I know they will work closely with me to do what is best for Ollie. It is nice to not worry about at least one thing!
The biggest source of stress this week has been radiation. As I’ve come to expect, starting a new treatment can be a bit bumpy. In this case, Ollie and I rushed to UAB for our 2 pm appointment on Thursday, after a long morning of teaching and advising students for me. We made it on time, were greeted by a friendly nurse, and escorted to the changing rooms. I was directed to take a gown from a cabinet, get Ollie undressed and into the gown, and wait to be called. Radiation for the patients of Children’s is done at UAB, at the same center as adults. One consequence of this is the gowns are several sizes too big, and because we were directed to the women’s changing rooms, Ollie and I get to spend a lot of time with older women who are also receiving radiation. They wanted to chat with him, but he was having none of it, and all the seats were taken anyway, so we stayed in the little changing room until called to the back.
We entered a room with a large machine, almost like a CT scan, but with these large wings that fold around the sides of the table. And speaking of the table, it is hard as a rock. John Oliver has no fat, and therefore no cushion between his pointy bones and this hard surface, so lying flat on his back is uncomfortable. He also must keep his arms positioned above his head, cradled in a mold that was made last week in order to ensure the exact same position each visit. It takes only about five minutes before his arms start to fall asleep and tingle. His feet are propped up in a cushion cradle, but this too is a source of discomfort – they are a couple of inches off the table, so his knees become locked, also resulting in reduced blood flow and tingles. Ollie also has this quirk about his knees – he almost always has them bent. Keeping them straight is uncomfortable for him, and the several times he has been tasked to do this were quite difficult, resulting in sobs more than once. But we were told once he is in position, it should only take 20 minutes.
Ollie is having the spot of the original tumor – his left adrenal gland – and his right hip radiated, so two treatments. This was a difficult decision – radiating the hip may result in uneven growth of his legs. We decided it is worth the risk in order to do everything we can to fight the cancer. This is most often at the heart of every decision – do we accept lifelong side effects, knowing we did everything possible to fight the cancer? On the surface, it is simple for me – yes. Getting rid of the cancer and keeping it gone is the most important quality of life goal. But it is complicated because we do not know if the treatments will even work, so perhaps Ollie will have the side effect without the positive benefit. In other words, he could relapse and have a shorter leg, or if we opted to not radiate the hip, he could be NED for the rest of his life and have symmetrical legs.
The lab techs put his arms in the mold, and proceeded to attempt to line up the marks on his torso from our original assessment last week with the red lights emanating from the machine. It took them a while, but they finally got it – or thought they did. We reminded Ollie for the umpteenth time to stay completely, totally still, and then we exited the room, a large door was sealed shut, and we walked behind a counter. There was one screen with video of Ollie in the room, another computer with lots of numbers and letters that I have no idea how to decipher, and a third screen with an x-ray of Ollie in order to confirm proper location. I could see the maze of tubes inside his little body. I was shown a button I could press to talk to Ollie, and I did this often, at one time even risking public humiliation by singing his favorite song to him. Because we did not want him to move at all, I told him to not talk back to me unless it was an emergency. This is where the trouble began. Things did not look right, so the door was opened, Ollie was readjusted, and the process was repeated. This happened a few times, each redo escalating the frustration of the lab techs. It was concluded that on the day his mold was made, and the marks were placed on his body, he was lying in an awkward position. I am sure he was – he was crying the whole time about how painful it was to lie down on that hard surface. But those mistakes a week ago were causing lots of trouble on the day of radiation.
After about 45 minutes of increasingly tense attempts to get him in the right position (they put a rolled towel under his back, twisted his hips to create a curve in his spine, and tried to balance him to be tilted a little more to the left), it was decided to take a break and give him Ativan to help him relax (this seemed a little odd to me since we were trying to get him into a position that replicated a day he was very tense). Ollie and I were sent back to the little waiting room, and there we sat for 2 hours, sometimes participating in awkward small talk with the women also waiting, and sometimes doing our best to ignore them and send the social signals of “leave us alone.” Once the Ativan kicked in, he became super goofy, quizzing the women about breathing tubes, their four eyes (he was seeing double), and keeping me in a state of unease, just waiting for something inappropriate to pop out of his mouth. Once all other patients were finished, we were taken back for try number two. Not surprisingly, the same problems persisted (and the Ativan had mostly worn off), but with some persistence from the staff, and astronaut role play on my part (Ollie was on a mission to outer space, and during the launch and trip, he had to remain completely still. The radiation machine feels like a spaceship, and there is a beautiful image of the sky on the ceiling, complete with little lights that twinkle), we managed to get through it. Towards the end his arms were really hurting, and he was crying, and my new favorite lab tech said he could keep them folded on his chest (another tech said no, that we would need to tape them down – um, no way!), and I am so, so grateful for the insistence of this guy to fold Ollie’s arms on his chest. It greatly helped Ollie to stay still and stop crying. By the time we left, it was after 6 pm, and we ran straight into a huge traffic jam due to an accident on 65. It was a long day.
Yesterday was much, much better. Ollie and I arrived at 7 am, saw some friends in the large waiting room, and he was sedated for the treatment. When I laid him down on that hard surface, a very friendly anesthesiologist assistant pushed some of the “magic milk” into Ollie’s noodles. He had time to yell out, “Slow!” only once before passing out. In this state of complete relaxation, they could position him and tape him however they needed without fear of him readjusting. We were finished in 20 minutes. Piece of cake. He was really out of it for a while, but was not grumpy like he usually is after sedation.
We went to our appointment at the bone marrow clinic, had blood drawn, and more waiting. His counts came back ok – still low, but not low enough to need blood products or cause concern. We also found out we will be back at Clinic 8, the hematology/oncology clinic, starting next Tuesday. I am in shock that we are moving on from transplant, but a little sad. Our transplant doctor is one of my very favorite of all the people we have met since this started. He is incredibly patient and thorough, and what I most appreciate about him is his philosophy of treatment. He makes decisions – when to start and stop medication, when restrictions can be lifted, what is truly necessary – based on what is best for the child, not what the protocol says. I loved having conversations with him, and I know I will miss the comfort and assurance I felt with him during these last few months. But, as wonderful as he has been, thank goodness we are putting that phase of treatment behind us!
Ollie is still vomiting daily, and not eating too much, but the feeding tube is keeping him nourished. It makes him smell sweet, like candy. We call it the “infinite milkshake.” I’m not a fan of refilling it in the middle of the night, but this is one way radiation will help. Because we have decided to have Ollie sedated, he cannot eat or drink anything after midnight, so on the nights before radiation, I only have to get up and turn off the feeding pump. We have ten more radiation sessions, every day except weekends and Thanksgiving.