With one heavy foot forward and one foot dredging backwards, it is difficult to be in the present. I didn’t realize, until midmorning, that today was Ewan’s half birthday. On this March 22nd, time marches forward toward another birthday Ewan will not know. I didn’t make the connection with the date because I was so busy looking backwards; a year ago today, he left the house never to come home.
Ewan had been sick and lethargic for over a week. His condition was worsening. I knew why but there was nothing I could do. He was deteriorating because his cancer was spreading. Ewan was in a holding pattern, waiting to receive CAR T cell therapy. Active disease in his bone marrow is what qualified him for the trial. Doctors assured us this was necessary for his magical t-cells to work. They called it “simmering”. A low level of disease would kick Ewan’s reprogrammed immune cells into action. Then the immune cells would reproduce and their offspring would destroy more cancer cells. I read scientific articles that indicated a range between 5 and 30% blast cells in the bone marrow was ideal. That’s a huge f*ing range. Even at the time, it made me wonder if anybody knew what the heck they were doing. But we were committed down the CAR T path and had to sit on our hands and watch Ewan simmer.
On Ewan’s last night at home, he was so sick he vomited blood on the wall. Whatever hot mess you might picture a dire and sick cancer patient in, that’s what Ewan was experiencing. He cried from pain in his head. Oxycodone was useless; it never touched headache pain. He cried from pain in his back and his legs. It was the pain that was causing him to hurl with such force that the lining of his stomach striped away. Frantic, I called the hematology oncology fellow. Projectile blood vomit was a new one for me. Since Ewan did not have a fever or meet any of the criteria for coming into the emergency department, we were instructed to stay put for the night.
I was petrified. This was the most terrified I had been in the two years since Ewan was diagnosed. When I reflect on Ewan’s last week at home, there is not much I can remember. I think I have blocked it out. And I don’t have many pictures. There wasn’t much to smile about and photograph. But I remember March 22, 2018.
Ewan had a scheduled clinic appointment. He was NPO, nothing by mouth, as of 7 AM, which was fine because he felt too awful to eat. He was inactive and chilled from the previous night’s suffering and subsequent lack of sleep. Since he felt so miserable, I let him stay in his Star Wars pajamas. His favorite pjs had been a gift from a friend and had his name embroidered on the front in dark blue thread. We left for Children’s just before 10 AM. On the way, we stopped at the library to pick up his books on hold. Ewan was too fatigued to go in, so I parked in the library’s roundabout front. The library’s signature boy statue resting against a giant rabbit was reading his book, as usual. I remembered the bronze boy and his bunny from a spring day, seven years ago, when we visited Mercer Island for the first time. We drove to the library just to make sure it existed; we couldn’t live without a library. I sprinted inside, grabbed Ewan’s books from the hold shelf and mad-dashed to the check out counter. A friend waved from the stacks. She walked over and said, “Good morning, Jenny”
“Hi. I have to run. Ewan is waiting for me in the car. He has a clinic appointment. You should come out and say ‘hi’. He’d be happy to see a smiling face.”
So, she did. She opened his car door and said, “Hi, love.”
It made Ewan smile. I think he told her to tell his friend, her son, hello.
With our quick detour done, we headed to clinic. He read his newly borrowed, library books quietly while I drove. Rush hour was over so it didn’t take long.
This meant we were early for his appointment; the hematology oncology (hem/onc) clinic squeezed him in for a blood draw. Then, I took Ewan over to his physical therapy appointment. Ewan was checked in and proceeded to an unfavorable, frequent activity: waiting. To our backs was the large aquarium. In front of us, there was an activity table with crayons and picture pages for coloring. Samples of patient-colored pages had been taped to the glass block wall. Ewan’s name was called and we were taken back to a room. He moved with great effort from the wheelchair he was seated in to a low exam table. (I forgot to mention that I got him a wheelchair upon arrival. I think I even valet parked the car which I only did when I felt desperation.) He put his head down on the exam table and instantly fell asleep. When the physical therapist came in, we agreed to not wake him. It was a nice, new male physical therapist; we’d never seen him before. The physical therapist said Ewan could use PT time to nap. He tracked down a pillow, turned off the room’s light and left.
After awhile, someone who sounded very authoritative came in and scolded me; we were not supposed to be in the room. I stated Ewan’s case convincingly enough that she agreed to give him more quiet time. Outpatient clinic had no space for a child to rest and Ewan clearly needed rest. With a little understanding, she left us in peace. Soon, another person unknowingly entered the room. She stopped when she realized the lights were off and there was a sleeping child on the table with his mother sitting in a wheelchair next to him. She quietly explained that it was her lunch break and that she needed to work on a project that was stashed in this room. She pulled out a large, freestanding-tented chalkboard. She was making a welcome sign for the entrance to her friend’s wedding reception. Using a continuous stroke of chalk, her hand quietly scrolled in calligraphy: “Congratulations”. Then she left and made sure to close the door gently behind.
Eventually, Ewan woke up and wiped the drool from his cheek. There was a small, sweet wet spot on the pillow. I felt relieved that he had indulged in a deep sleep even if only for an hour. Since he still had a little downtime before needing to head back over to hematology oncology, I pulled out a LEGO Batman minifigure set from my purse and watched him assemble on a side table. In a matter of minutes, he was done. It was a cool, Batman car. Before we left, the male physical therapist came back in the room to see how we were doing. Ewan presented him with the car and said, “I made this. You can keep it.” The physical therapist was impressed. “Well done”, he said admiringly. He cradled the minifigure in his palm and said Ewan’s work done for the day.
I helped Ewan back into the wheelchair and pushed him back to the hem/onc clinic. The medical assistant (MA) called him back. I am sure he went through the usual height and weight rigmarole that he repeated, without fail, at every appointment. I can almost remember helping him slip off his shoes so that he could stand straight, with heels back, touching the wall, while the MA slid the little acrylic tab down until it touched the top of head and measured out his height in centimeters. If I try hard enough, I can see him stepping on that scale, in in socks, with his back to me. He’d done this drill, what felt like, a thousand times. How was I to know it would be the last time?
This was the last time I’d kneel at his feet and help him slide his shoes back on in the outpatient clinic. Ewan sat back down in the wheelchair. Then, the MA led us down a familiar, turning corridor and showed us to his room. Today’s room was adjacent to the sleepy room procedure room. Even though Ewan had been NPO since 7 AM and was early for his 2:40 PM scheduled procedure, he would not make it next door. I didn’t know this. All I knew was that exhaustion had surged back up. I helped him move from the wheelchair onto the paper-crusted exam table. He curled himself into a ball on the table and fell asleep again.
It wasn’t long before Dr. Smith came into the room. The first thing I noticed was the set of papers, folded closed in her hand. Numbers were concealed from sight. Next, I noticed her gentle and concerned eyes. She always smiled with her blue eyes but sometimes there was sadness behind those smiling eyes. Finally, I noticed her cloaked voice. She couldn’t help but initially avert her worry. She was trying to spread out a blanket of affirmations. As if positive words would be enough to comfort me for the negative news that was about to swallow me whole. I don’t remember what she said until she got down to the point.
“There are blasts in his blood. I am concerned. We need to admit him and start chemo immediately.”
I don’t remember much else about the conversation. She was wearing her grey ankle boots today. My eyes slowly moved up from the boots, trying to meet her sad, smiling eyes without crying. She had on a dress I hadn’t seen before. She pulled up labs from the room’s computer. She said someone from transport would come over and help take Ewan to the Emergency Department where he would check in, then be moved up to the cancer care unit. I didn’t understand why we needed someone from transportation to push Ewan over to the ED. I knew how to get there by heart. But wheels were in motion and, Ewan would have been proud of me, I did as was told and waited. After Dr. Smith left the room, I woke Ewan up and shared that this day would be longer and different than expected. He was apathetic and willing to shift back into the wheelchair. What an easy child. Looking back, I wonder how horrible he must have felt to be so willing to check into his least favorite place.
When transport arrived, I insisted on pushing Ewan’s wheelchair so that he wouldn’t hit any spots on the ground too hard. Loading onto the elevator was the worst–the bump from that gap between the carpet trim and the elevator platform often aggravated his nausea. I took note of the colorful, but worn, gummy worm-patterned carpet underfoot – the very carpet I scoffed at on our very first trip to the outpatient clinic. Back then, we took the exact same path except in reverse. Ewan was rolled over in a hospital bed from the inpatient side on his first trip because he wasn’t able to walk. Sleepy room, where bone marrow and spinal fluid was taken seemed so scary, back then, but now they were ordinary appointments on the calendar. How many times had he been in the procedure room? The number also felt like a thousand times; realistically it was only fifty to sixty. I remember thinking that the carpet’s faded gummy worm-like pattern was a good idea gone awry–a fresh, kid-friendly feature thought up for the outpatient clinic’s last remodel and quickly worn thin.
Back in the ED, Ewan was affixed with a new wristband. This was all a procedural pass through while a room was being prepared upstairs. I went down the list of people to inform, calling Michael first. There was a portfolio night at Elena’s middle school. Could he attend? Elena had theater rehearsal. Would someone make sure she got there ok? I called Izabela to let her know that we would be checking into the hospital and asked her to pack an overnight bag for Ewan with enough clothes and activities for a few days. I called MT and Dr. Nancy. Everyone back at home was set. This all felt so familiar, and yet it was as completely unknown as the first time we ever set foot in Children’s. We were heading into uncharted territory.