Round one of Benjamin's chemotherapy was administered by having an IV line inserted into his hand which we were told was not the ideal way, especially for a child so young. However, after snowmaggedon hit our city, we had no choice but to wait to get him a spot on the surgical board. Just two days before Benjamin's round two chemo appointment we managed to get him booked into an OR to have his port implanted.
The night before his procedure we encouraged Benjamin to eat until he felt full as he would have to begin fasting starting that evening until after his surgery. In the morning he would only be allowed small sips of clear liquids (water and apple juice) and 2mL of a yucky-tasting steroid before leaving for the hospital and then nothing three hours prior to his procedure.
We arrived two hours before the time of the surgery as instructed and checked in. We were given a private room for the day that included a couch, a hospital bed, a window that looked out at the yellow elevators zooming up and down in the atrium and because Benjamin had just watched the movie Boss Baby, he was the most excited about having his "very own personal potty" (even if it wasn't gold).
Over the next couple of hours, in between vitals checks which include "arm hugs" (what they call having your blood pressure taken at Sick Kids), listening to Benjamin's heartbeat, taking his temperature and measuring oxygen levels, we FaceTimed family, played games and watched the elevators moving. Eventually a nurse brought in the familiar white flannel hospital-issued pyjamas and warmed wet wipes so that I could give Benjamin his sponge bath before helping him to get changed.
I got him set up in the hospital bed with his games knowing that it wouldn't be long before someone from the IV team would be arriving to start a line in preparation for surgery. Up until this point Benjamin hadn't been bothered by having an IV put in so I wasn't worried that this time would be any different. I was wrong.
The IV team member and a nurse showed up and started looking for a vein. They tied him off and applied the heat but they weren't satisfied so they tried his other arm. I mentioned that in the past they'd only been successful getting a line in on his hand as opposed to the inside of his forearm close to his elbow but they seemed to have found vein there this time around. Unfortunately with the time it took Benjamin's anxiety had built up and he was pretty upset. When the needle poked him he flinched and moments later it was removed. The IV team member let me know that they'd have to call in someone with a portable ultrasound machine to locate a good IV site and they'd try again.
Though Benjamin got lost in the games he was playing for a few minutes at a time, he paused often and asked when they were going to try to put the needle in again. It wasn't too long before the portable ultrasound machine was wheeled in and we were joined by someone who I expect was more senior and more experienced. She didn't have to use the ultrasound machine and got his line started fairly quickly but the damage had been done. Benjamin wasn't particularly trusting given this was the second attempt and the first one had hurt. Once it was in, taped and the little pillow was attached to his wrist, he seemed back to his usual self, though on her way out the nurse asked if he'd like the door open or closed and for the first time that morning he said he'd like it closed.
Shortly after we had a knock on the door. A young man introduced himself as Alex and explained that he was from Campfire Circle. They do crafts and games with the patients to help them have a little fun and to pass the time. He asked Benjamin if he'd like to make some slime before his surgery and with a twinkle in his eye, Benjamin nodded an enthusiastic 'yes'.
Moments later, Benjamin was excitedly stirring blue food colouring and glitter in a plastic mason jar full of white glue. Alex encouraged him to dip the spoon in deep and pull in up, the sticky slime coming up about six inches out of the jar. He showed Benjamin how he could use his hands to pull it out and stretch it. He even left us with a sheet of stickers so that Benjamin could decorate the jar. It was such a wonderful distraction for and he was so excited to be told that he could bring it home. If I'm completely honest, I was maybe, just a little less excited to have blue glitter slime coming home to a mostly white house ;).
Because of the delay in getting the IV line started, Benjamin's surgery was also delayed by nearly two hours. Eventually the nurse came in and told us it was time. She called Transport and a gentleman came up with a wheelchair for Benjamin and to walk us both down to the surgical prep area.
Once there we met with the anesthesiologist and the radiologist to go over the procedure, and of course all of the risks. This part always makes me queasy. I know the risks are low but so was the probability that Benjamin would be one of the forty children diagnosed with LCH in Canada this year. Odds and statistics, no matter how low, don't provide me with any comfort anymore.
They explained that two incisions would be made, one small one and one longer one above and below the collar bone, respectively. They would use both ultrasound and x-ray to get the port in the correct position in his body. I was told that I would be called to see him in the recovery room in one to two hours time. Benjamin was given a sedative and once sleepy and slurry in my arms I picked him up and laid him in the hospital bed to be rolled into the second OR, for his second dose of anesthesia, for his second surgery in three weeks. He was wheeled out of my sight and I was walked to the waiting room where I gave my cell phone number in case I decided to take a walk and wasn't there when the doctor came to speak to me.
Finally my name was called and I saw Benjamin's radiologist walking towards me. He asked me to follow him down a short hallway and into a tiny room. My heart sank. Thankfully before I'd even sat down he turned to me and said that everything had gone well. Relief. I'm not 100% sure what he said to me after that but before I knew it he was walking me back to the waiting area where I took a seat for the second time. A nurse then came over and walked me to the recovery area where Benjamin was just waking up. I was told this was the second time he was waking. The first time he was very upset so they gave him something to lull him back to sleep for a few minutes and this time he was coming out of the fog in a much better way.
He asked me to get into his recovery bed with him and when I looked up at the nurse she told me I absolutely could. I carefully navigated around the lines he was hooked up to and held him close. I don't think 30 seconds had passed before he was asking me to play games with him on his tablet and asking the nurse for freezies. Bless his sweet nurse who brought him a Dixie cup holding each colour of freezie. By her expression I'm not sure she'd ever seen someone come out of anesthesia and knock back six freezies in such a short amount of time despite her best attempts to get him to slow down. Thankfully he didn't experience any nausea and they didn't make him sick.
When the nurse was satisfied with Benjamin's vitals she called for Transport to come down to wheel him in his bed back to the room we'd been given when we first checked in. Benjamin loved riding a bed down the halls and in the elevator. Once at his room, I gently lifted him off the transport bed and onto the bed in the room.
While David couldn't be there with us, my cousin, who Benjamin adores, works at Sick Kids and was able to come see us at this point. I had asked her days in advance if she could be the person to give live in-the-flesh support because after his biopsy surgery Benjamin didn't come out of anesthesia well at all. He was so wildly unlike himself: grumpy, sad and angry. He was unknowingly holding freezies upside down and trying chew through the plastic. It was a really, really hard thing to see as a parent. He was discharged while he was in this state and I had to wheel him out of the hospital like that on my own. He wasn't strapped in I worried the whole time that he was going to move abruptly and fall out of the wheelchair.
I saw my cousin, Kelly, get off the elevator from the window in Benjamin's room, watched her type on her phone before my phone buzzed with a text from her asking for directions. I told her to look behind her and flashed Benjamin's cape in the window. She waved and was in his room in moments. A real live bat signal, or "B" signal in this case.
Her timing was perfect. As soon as she sat down next to Benjamin the nurse came in to brief me on his after-care and to give me the list of signs to watch out that would require us to call the on-call oncology fellow and come back to the hospital right away.
The nurse then got Benjamin up on the bed to do one last test of his vitals before releasing him. As we waited, Benjamin piped up in a sing-songy voice I'm very familiar with, the one that only ever accompanies announcements of impending bodily functions, "I haaavvvvveeeee tooooo toooooooooottttttt!". Seconds later, he grinned ear to ear and said "Excuse me!". The nurse, my cousin and I couldn't help but giggle along with him. I took his toilet humour as a sign that he was feeling just fine.
This time leaving the hospital after surgery was so much different. Benjamin was happy, he could walk, and he didn't seem to be in any pain. We stopped by the reception desk to check out the life-size statue of Spider-Man upside down on the ceiling before walking to the yellow elevators. As always, Benjamin pushed the button and we guessed which one would open for us. When we got downstairs, we went to Starbucks, got Benjamin his much-deserved treat, especially since aside from freezies he hadn't eaten since 6:00pm the previous evening before walking to the exit where David was waiting for us with open arms.
After big bear hugs and saying goodbye to Kelly we headed home where we were greeted by Ella and Mimi (my mother-in-law). Mimi was quick to ask Benjamin what the best part of the day had been. Giving her his signature wide, toothy grin he said, "The freezies!". She then asked him what the worst part of the day had been. Benjamin looked up at the ceiling for a moment before looking back at her and said, "Nothing. There were no bad parts about today." Be still my heart, to be so brave and so resilient. David and I leaned into each other as we stood in our kitchen watching this interaction. We were both thinking how lucky we are to have such a special boy.
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