Radiation week. In a period of seven days, with a two day break for the weekend, Liam was under anesthesia 14 times while he received 14 rounds of radiation. Each session was short…fewer than five minutes…but it seemed like an eternity knowing that his little body was being pummeled with dangerous beams of radiation precisely pointing at the site his tumor was located. His body now sports tiny permanent tattoos that helped guide the radiation technologists while setting up the machine. The risks of not hitting the same spot with each radiation session were too great to not use a permanent system to mark his body. Those tattoos will also serve as markers should Liam need radiation in the future. Essentially, they’ll know where not to radiate him in the future since you can’t radiate the same area.
The process every day was the same. We’d have to be at the hospital by 7 a.m. (Liam insisted on wearing his jammies to the hospital); go to the IV room on the 9th floor; wait; get hooked up to fluids; go down to the second floor; yell, sing or hum Old McDonald through the hallway with echoes while I explained every day why this particular hallway had echoes while the five other hallways on the way to the radiation area didn’t; wait sometimes more than an hour for a radiation technologist to summon Liam from the “tiny play room” complete with a play kitchen and miniature-sized radiation machine for simulation play; go to the radiation room; make sure it was his picture showing on the monitor positioned up high on one of the walls; hold Liam in my arms while the grips of anesthesia forced him to sleep; carefully place his limp body on the hard table; kiss my son good-bye; say a quick prayer; leave the room with 1-foot thick walls and door while a team of people hovered over him to prepare his body and the machine; meagerly walk back to the recovery room to wait; do e-mail while watching for him to be wheeled into the room in a small hospital bed with a monitor loudly but assuredly beeping his vital signs; inspect and fret over my baby while waiting for him to wake up; change him from jammies to clothing; hold him close to my chest the minute he woke up; put him in his stroller; figure out how to kill five hours until the second radiation session of the day while keeping him entertained; and then do it all over again. But here’s what amazed me. Liam loved the process. He would wake up around 6:15 a.m. each morning, come find me and announce he was ready to go to the hospital to have his picture taken. The radiation machine looked similar to a CT scan machine which also looked similar to a MIBG scan machine – “picture machines” Liam is all too familiar with by now. So for him, this was simply a different kind of picture…in a room with pictures of leaves on the ceiling. He liked it so much that after the second day, he marched to the room without needing me to hold his hand and instead held the string of lady bug pull toy that played “Old McDonald.” He passed five radiation rooms along the way – each with two or three attendants – and said hi to each person he saw and announced he was going to get his picture taken. When he walked into “his room” which was the last one in the row, he looked for the anesthesiologist, announced that he was ready to “rock and roll”, positioned the lady bug pull toy next to the radiation table; stepped on the step stool usually used by people decades older; and then rock-climbed up the side of the table to reach the top. He would ask the anesthesiologist, there was a different one every day, if he could help and then would push the white-colored anesthesia into his tubie. I would hold him while he pushed the end of the syringe under the watchful eye of the anesthesiologist. It took about 10 seconds for it to take effect. And then he was out and I was being silently but definitely encouraged to leave the room. The second he was asleep, loud beeps and other strange noises would sound as the machine and Liam were prepared for their rendezvous. The tone of voices in the room immediately shifted from friendly to business like. And as much as I wanted to stay and watch, I would walk back to the recovery room to get in as many e-mails as possible before Liam returned. When he woke up in the recovery room, he never asked what happened and never seemed surprised that he had fallen asleep or been moved to another location. He just wanted to be held and rest his head on my shoulder. And when he announced he was ready, I was allowed to put him in his stroller where he would flip over, tuck his knees up into his chest with his butt up in the air, and fall asleep.
Between sessions he couldn’t eat and could only drink clear liquids up to two hours before the second session. Liam learned the meaning of clear during radiation. Every day he valiantly tried to convince me that milk, his beverage of choice, was clear. And when he gave up on trying to convince me that milk was clear, he shifted his focus to ice cream. By the third day he would point out clear drinks and then work on getting me to buy every clear drink. Even though he couldn’t eat, the one place he wanted to spend time every day was the cafeteria. He would stand at the end of the railing normally reserved for holding trays while I bear-hugged him from the waist down to keep his shaky anesthesia legs firm, and intently watch the short-order cooks making eggs and pancakes. He wanted to know every step of the process for making eggs sunny side up, over easy, scrambled, and fried. He didn’t want to eat anything – he knew he couldn’t – he just wanted to watch and learn. One day during the week was Employee Appreciation Day and to note it a special smoothie station was set up. Liam was completely fascinated watching all the different combinations of smoothies being prepared. By the third day, Liam was greeted by cafeteria employees and his dream of watching popcorn being made in the large popcorn machine, something he has wanted to see since his first week at Sloan, was fulfilled. He was given a tall chair on wheels as a new perch to watch the workings of the early morning shift in the cafeteria. He would position his hands on the arm rests, tap his fingers, and survey the orchestration of the breakfast operation. He was in his element. We would walk around the cafeteria, he would pick out foods he wanted to eat, we’d collect them all in a box, and then carry them around the rest of the day until he could finally eat. He never complained about not being able to eat. He would just look at his food and change his mind every five to 10 minutes about what he would eat first.
The other four hours we spent playing in the sandbox of Sutton Place Park along with other children, watching boats go up and down the East River, and trying to discourage him from pulling flowers from the Trump apartment building flower bed. It was a triumph and bitter sweet to have Liam playing in a sandbox along children his age. He always wears a hat – he has always been a big hat lover – so no one knew he was a cancer patient between radiation sessions. But to be so close to other seemingly healthy children and their parents or caregivers was difficult. I reveled in the fact that Liam was there. I regretted the fact that our lives have forever been changed. I don’t like cancer. I want it to go far, far, away but the reality is it will never be further away than a three-month workup for a long time.
One morning we were greeted with torrential rain. After trying for more than 20 minutes to find a cab, a car service car stopped and asked where we were going. I told the driver. He told us to get in the car. I took the rain shield off Liam stroller as quickly as possible to keep him out of the rain, held him at arm’s length so he wouldn’t touch my dripping-wet jacket; he got a little wet and was quite unhappy, and off the car took for Sloan. And then the questions started. “Is it genetic?” “Did you suspect?” “Were there symptoms?” “How is he doing?” “What do you mean it isn’t genetic – you mean my son could get it?” “How would I know?” “Is he in pain?” Liam was fascinated with the dual DVD players in the car. I tried to answer the driver’s questions, but weighed what I was saying against the fact that Liam was with me and awake. I tried to be as informative but as vague as possible. When we arrived at the hospital, the driver pulled up onto the curb under the awning of the hospital so that we wouldn’t get wet. He scurried around the car to help us out and told us to call him any time. It turns out that he lives three blocks away from our, as Liam calls it, city home.
After the second radiation session, Liam would ravenously eat his selection of foods from the cafeteria. He couldn’t eat fast enough. And even through a drug haze and slurred speech he would tell me how good the food was. It’s now over and we can check add another check to the list of treatments completed. Up next? A week of 3F8 beginning Monday, July 23rd.