By Declan Rowles | Miscellaneous | October 5, 2022 |
By Declan Rowles | Miscellaneous | October 5, 2022 |
I felt as if I should write an article about my experience following my dad’s article. He summed it up alright, but I have a different perspective on the events talked about there, namely that of the patient: Me.
By way of introduction, my name is Declan. I am the son of the Benevolent Overlord of Pajiba (Yee Haw), Dustin Rowles. I am a nerdy kid whose interests include gardening, video games, reading, watching TV, and animal care. I wrote my first piece for this site around two years ago for a trailer about a movie called The Sound of Metal during the height of the pandemic and my half-year-long struggle with mental illness. (I got on an SSRI, and I am fine now other than the whole cancer thing).
In March of 2021, I was in a fairly good headspace, being back at school part-time and seeing the light at the end of the COVID tunnel. That was until I must have really pissed off some leprechaun. On St. Patrick’s Day, at around 6 o’clock, I sat down in the kitchen and was told I had leukemia and that I had to go to the hospital immediately. I had the obvious reaction: “What the absolute fuck.”
We drove to the hospital, a place I would soon become incredibly familiar with, and I was quickly escorted to Barbara Bush Children’s wing, a fairly small set of rooms on the top floor of the building. After I got into bed, I promptly got the second blood draw of my life, though they missed the vein a few times, which is fair for someone who had an unfathomable amount of white blood cells. The doctor came in to talk with me, but because it was during COVID and I had not been tested yet, he and his team came with full-on E.T. Hazmat suits, which even to the grief-stricken child who thought he was going to die in a matter of days, was pretty funny.
I knew about immune systems, so I asked questions about how it would affect it, how treatments would work to kill cancerous cells, etc. He was one of five pediatric oncology doctors who would be working with me for the next few months. After that, I was told there were two possibilities, ALL or AML. ALL is a type of leukemia that is most common in children; the survival rate is about 90%. I was told there was a better chance of me having this, in which case I would be able to go home a few days later. The other possibility was AML. That’s what I had. The treatment of this is more dependent on mutation. I happened to get a nasty mutation of the nastier leukemia. What a lucky person I am.
The week or two following the diagnosis was terrible. I am in a chat group with other teenagers with cancer, and whenever someone recently diagnosed joins and asks for advice, all I tell them is to let the feelings sweep them up, to sit in the grief, put on a TV show, and let it all out. After a few weeks, I began to accept this diagnosis, faster than anyone was expecting, even myself. The rest of the first round of chemo was standard. I get a shit ton of medication, throw up around four times a day, eat through a tube, and wait until my immune system recovers from the mix of chemicals put into my body.
Day by day I talk to the nurses, talk to the doctors, talk to my parents (who were switching out each day to take care of my siblings), and feel like absolute shit the majority of the time. My fellow students and teachers even organized a thing where they went outside my hospital window with signs of encouragement! I used binoculars to see them because I was around 16 floors up. I could see the minor-league baseball field out my hospital window, and the school and my amazing in-hospital teacher even arranged to post a message for me on the field.
It was around this point I got into a game called Undertale, which I wrote about on the site a few months ago. It’s a game about a child who falls into the underground, a place with all kinds of scary monsters. But this isn’t your standard game in which you fall into this situation and shoot everything to death. You befriend the monsters and begin to see the world not as a prison you fell into but as a home. This theme, and the theme of Determination, carried with me throughout my treatment. I came out of my shell and began talking to nurses and doctors. I got to know about them, they got to know about me. They were a second family for the time I was there. A month later, I left the first chemo round of three confident that, well, the rest of my long journey couldn’t get much harder than that, right?
Oh, boy was I wrong.
I had about a week’s worth of respite from my situation, where I went home, saw my family and pets, and got to sit outside and feel the (somewhat) warm April air. Nothing that remarkable happened. I found out that my leukemia was in remission, and now all I had to do was make it stay in remission before the Bone Marrow Transplant. I saw my friends from school, played Mario Party with my siblings, and hung out with a thought deep in the back of my mind that I may never see any of this again after I walk back through those hospital doors. This lingered throughout my experience and came a lot closer to being true than I had hoped. The next month and a half is when it got real. I was soon about to go to the only place I have no fond memories of whatsoever: The ICU.
The chemo round started out fairly normal. They pumped purple liquid into my body, and I felt bad, but that’s par for the course. I was used to it. (Fun fact: One time, with another patient a few years back, the bag with the chemo in it dripped a bit and made a hole in the tiled flooring. That’s how toxic chemo is. I brag about this a lot; I deserve the privilege.)
Around a week and a half in, I began to breathe more shallow and had an ache in my lungs. We chalked it up to my posture, but soon enough it became apparent this was a much bigger issue. One day, soon after playing Minecraft on Zoom with my friends, my O2 levels dropped. They put me on oxygen, ran a shit ton of tests, and the rest of that period is kind of a blur for me, as I was under some serious levels of morphine. The next thing I remember fully is waking up in an unfamiliar room with tubes in my lungs pumping out fluid that would have drowned me from the inside had it not been taken care of. Every breath elicited staggering pain; my brain felt numb. Even with all the pain medication, the pain was unimaginable. Side note: Morphine doesn’t really numb pain, it just numbs your brain from freaking out so much.
Soon after I awoke, they gave me an explanation. A giant non-malignant mass was pushing up against my heart. Normally, they would take me to surgery and cut it out, but if that had happened then, I would have bled out uncontrollably because my platelet counts were so low. Thus began the worst week and a half of my life. Every morning I woke up and everything in my body burned. I was put on a morphine pump, which I probably should have used more in retrospect.
During this time I turned on the TV in the room. There were TVs in every room in the hospital, which connected to tons of channels. Weirdly enough for all you old people reading, I had never had an experience with cable TV before, being able to turn on any show in an instant without a second thought. I had my phone with me and I rewatched comfort TV shows like Community, the first 10 seasons of The Simpsons, Bob’s Burgers, Parks and Rec, and a variety of other stuff. But cable TV was a fun concept for me — having what I watch be at the whim of a network — so I spent a lot of hours flipping through various (mostly entertainingly terrible) channels. I also tuned in to Jeopardy! every night and sometimes I was so bored I watched Wheel of Fortune.
Back to the medical trauma: The plan was to keep me alive until my blood counts rebounded enough so that I could have the surgery. This proved incredibly difficult for the team as they had never been in a situation quite like this before. Eventually, they took me into the operating room, opened up my chest, and took that disgusting thing out of me. After I woke up, which was a miracle in and of itself, the mass was gone. I was not out of the woods yet. There was a gigantic scar across my middle rib cage and they had installed three more pumps above my belly button to get the still building fluid out of my lungs. Thus began another week and a half of pure hell. I had physical therapy and a no-nonsense nurse who I sometimes disliked, but in retrospect, she was incredible. Eventually, they pulled the tubes out of me, though they had to do so while I was awake because it would be too risky to use anesthesia. It hurt.
After the worst month of my life, I was out. Against some fucked up odds, I had done it. I was discharged from the hospital straight from the pediatric ICU. I had another respite, thankful for every moment I spent alive during that time. I hung out at home, celebrated my 14th birthday, and spent time outside with my chickens and my dog, Penny.
Then came the third and final round at Maine Medical before going to Boston for my life-saving bone marrow transplant. The third round was great. It was like the universe felt bad for me and decided I needed a well-deserved break. I still felt like shit, but there were no complications, and I had a genuinely good time. I built LEGOs, watched Sweet Tooth, Invincible, and The Queens Gambit, played a game called Monopoly Deal with my parents, and played video games with my friends as well as an embarrassingly large amount of time playing Animal Crossing. I left Maine Med with a smile, and surprisingly had mostly fond memories of my time there. I can’t thank my doctors and nurses enough for making that place feel like a home for me, and many other children, as well as for saving our lives.
After an especially long break, the final inpatient chemo was upon me. I shipped out to Boston with the family and then went to the Boston Children’s Hospital. I’ll quickly explain what a BMT (Bone Marrow Transplant) does before I go on.
Bone marrow produces blood, and leukemia is when your bone marrow produces a mutated version of the white blood cell. The goal of a bone marrow transplant, once all cancerous cells are gone, is to weaken the bone marrow and bring in a donor’s new bone marrow (my sibling’s) to graft so the old bone marrow doesn’t screw up again, effectively giving the patient new bone marrow.
Once I got to the hospital, I immediately noticed it was around 50 times bigger than my hospital in Maine. This was a big change, but I adjusted to it in around a week. On day 0, the day of the transplant, the nurses brought in the bag of bone marrow donated by my own sibling. My other sibling then pushed the button on the IV, and the bone marrow went into my bloodstream. My donor sibling, high on pain meds, made a stuffed animal friend named Dr. Pepperbottom, whom we still talk about to this day.
The next two weeks sucked. I had mouth sores all over the place, which is about as pleasant as it sounds, and my digestive system was shot. It was not a great time. The nurses on the floor were nice though, and I had some fun after adjusting to the scale of the hospital. Then my second visit to the ICU came. This time there was something wrong with my lungs. They never found out the cause, but it was definitely not good. I was admitted to the ICU the day I was supposed to leave, which really fucked with my superstitious dad.
Another quick tangent, my parents were a huge part of my treatment, and I definitely don’t give them enough credit when it comes to that time. They were supportive, fun to be with, and always were calm in the face of tragedy, at least when I was there. Anyways, standard ICU shit: They looked into my lungs to see if there was a fungal infection, there was nothing there, and the whole operation complicated my condition. Though I don’t blame the doctors because if it was a fungal infection, an operation definitely would’ve been needed. I went on a BiPap machine and narrowly avoided a ventilator. I got lung tubes for a few days again, which were just as painful as before. The nurses there were compassionate and even sneaked me out to a garden on the top floor of the building. They also put me on steroids, which were both incredible and terrible: They saved my life, but they really messed with my head. After a while, and a Rosh Hashanah in which I couldn’t eat apples or honey due to my immune system, I headed back to the transplant ward. Soon after that, I headed home. It was a gigantic milestone, but I wasn’t completely done yet.
The treatment made it so my immune system had to be kept weak so the engraftment could go smoothly and I wouldn’t get GVHD (a thing that happens when old bone marrow fights off new bone marrow). I had to isolate for around six months. I got a bonus pandemic, and as a great robot once said, Life is hilariously cruel. It was mentally taxing having the only thing keeping me going during the pandemic — the fact that everyone else I knew was in the same boat — taken from me in the next stretch of months. I also took frequent trips to the clinic in Boston, which is around 2 hours away, and I had to get up at 5 a.m. It was pretty rough, but it wasn’t too bad. I needed some time to recover, and though I certainly wish that was not an aspect of treatment, seeing how far I had come, it wasn’t the worst thing in the world.
Now it’s been around 14 months since my BMT, and after working at a summer camp as a camp counselor, I am back at school full time for the first time in two and a half years. I even got a Make-A-Wish and used that to make a beautiful garden in my backyard. I could not have gotten to this point without the help of my parents and siblings, my nurses, doctors, and everyone in the community who supported me. I thank them all from the bottom of my heart. My dad did a pretty good job crediting people in the other piece, so I’ll leave you with this. People say I’m a hero sometimes, but I think that’s discrediting the hard work done by the real heroes here, nurses. Like, seriously. If there is one thing to take away from this, it’s that nurses are the greatest among us.