Being that it was a big, two-appointment week, my Mum took a COVID test and came from Ottawa to spend nine days with us. Not only did Benjamin and Ella get to share Easter with both of their grandmothers but we also got to celebrate my mum's birthday with her for the first time in a couple of years.
Having her come to stay with us was such a source of support in so many ways. Most days she walked to and from school with me to drop off and pick up the kids. She played with them while I made dinner to the sound of their happy squeals and belly laughs. She put Benjamin to bed every night by request and laid with him until he fell asleep (most often as he was mid-sentence, I'm told). She encouraged David and I to take time together, just the two of us. She came with Benjamin and I to the hospital for his PCR test (COVID protocol) leading up to his CT and PET scans. She gave Ella breakfast, got her ready for school and dropped her off on scan day. The extra pair of loving hands alleviated so much of the little everyday stresses that have a tendency to feel much bigger as we approached a pivotal milestone in Benjamin's cancer journey.
Having a 7:30AM appointment meant that we were out the door before any major traffic. After putting on Benjamin's cape and our masks we did a quick double check that we had everything from the car that we'd need: extra Emla patches just in case, Hot Wheel Bandaids for when his butterfly came out (the hospital only has beige ones), the tablet, Sidekick Bunny, our phones and my camera. Then it was up the parking garage elevator to the lobby for our COVID screening questions before taking the elevator in the atrium up to the Digital Imaging floor.
As soon as we sat down after checking in, the CT scan technician came and got us. Benjamin was weighed and his height was recorded and then it was off to a small private room with two comfy chairs (one was even a recliner) and a private washroom. Thought there were two chairs, all three of us had snuggled into one. While David and Benjamin played games together I answered the usual pre-scan questions: when he last ate, when he last drank, when his last bowel movement had been, listing off any surgeries he's had, what medications he was on, if he'd been in close contact with anyone who's had measles, mumps or chicken pox, etc.
We were then given an overview of what the CT and the PET would show us. We were told to think of the scans in terms of the room we were sitting in. The CT would show us where there was a light, an outlet and the sink faucet while the PET would show us how much electricity was travelling through the wires and how much water was flowing through the pipes. If that example doesn't resonate, the CT shows where the soft tissue (LCH) mass is and the PET shows whether or not it's metabolically active. The hope is that after a second round of intensive therapy (Induction) that the cancer mass is further reduced and that it is not metabolically active.
As the CT Scan Tech began to talk about how the administration of the general anesthesia would go I interrupted to explain that we were hoping to try to have Benjamin complete the scans without it, meaning he would be fully awake, fully conscious, without any sedation. Even though he was masked it I could see the look of surprise and perhaps doubt on the face of the CT Scan Tech. I went on to explain that he'd already been sedated for two surgeries this year and that in both cases he had a less than ideal wake up from the anesthesia. The Tech listened empathetically and excused himself to discuss with the team about the best way to proceed. This is something I've come to appreciate greatly at SickKids. The staff do listen and are solutions-oriented. While I'm no medical expert, I know Benjamin best and have a responsibility to advocate for him and in my experience the staff has always been very attentive and respectful of any requests I've made.
He returned shortly and proposed that we do a sort of dry run where we would put Benjamin on the board as though he were about to have the scan and slide him in to the scanner without turning it on to see if he was able to relax and lay still. Only one parent would be allowed in the room for the real scan because of the radiation and David and I had already decided that that person would be me so this trial run allowed Benjamin to show David around the room, something he was eager to do.
I lifted Benjamin up onto the board and the Tech began rolling small towels to place on either side of his head and between his feet to help keep him as still as possible. Tape was applied around his feet and Benjamin was tucked in tight with a couple of blankets both to mobilize him and to keep him warm. The room with the scanner is kept very cool as the machine generates so much heat and if he were to begin shivering the images captured wouldn't be clear and easy to read for the Radiologist. Finally Benjamin was further mobilized on the board with wide velcro straps that spanned his shoulders to below his hips. You'd think all of this might be scary for a four year-old but Benjamin took it in a stride, excited to show Dad how it was done.
As the board moved into the scanner David grabbed my hand. When I turned to look back at him I could see that he was tearing up. I hugged him tightly and he whispered that he couldn't believe that I'd stood here twice before, alone, and watched Benjamin go through this. I was lost for words for a moment and then just kept telling him that he would be ok. That everything would be ok. I really didn't expect that reaction from David, not that it wasn't totally and completely warranted. It was heartbreaking. Sometimes I forget that for him, being able to be present at these appointments is still new and that while Benjamin and I have gone through two scan days together, this was a first for David.
Five minutes after it had started the trial scan had come to an end. In a voice laced heavily with surprise, the Tech said he thought that Benjamin could successfully complete the full thirty+ minutes of scans without anesthesia. That felt like a win to us. It meant one less form to consent to that included language along the lines of "may result in fatality" just above the signature line.
Shortly after we were back in the small private room we were visited by the nurse who put in Benjamin's butterfly needle. This was the first time in a long time that it was done while Benjamin was sitting. He was fairly upset but once it was in, he quickly returned to his happy self. His blood was drawn to check his sugar levels and it was confirmed that they were low, where they should be as he'd had to fast prior to the scans.
The Tech told us that the contrast dye would be administered through the butterfly and that we'd then wait for a period of thirty to forty-five minutes. He went on to explain that in order to avoid diminishing the effects of the contrast that we'd have to keep Benjamin very calm, still and warm to avoid burning off any of the sugar in the dye.
At the time of the contrast injection, David was taken out of the room to a public waiting area. Benjamin crawled up into my lap and the Tech reclined the chair we were in before covering us with heated blankets and dimming the lights. He asked that Benjamin watch something as opposed to having him play a game to keep him as still as possible. We settled in to our cozy snuggle with The Emperor's New Groove.
Thirty minutes later the Tech was back. He asked me to take Benjamin to the washroom to empty his bladder before the scans. He pointedly told me to do my best to make sure that Benjamin didn't get any urine on his hands or his clothes. I didn't ask why at the time and now out of curiosity I'm wishing I had.
We walked down the hall and around the corner to the scan room for the second time that morning. Once again I lifted Benjamin up on to the bed so that the Tech could start to mobilize him with the rolled up washcloths and tape. This time they asked for Benjamin's shoes to be removed and added a couple of rolled up blankets to gently weigh down his arms and his hands before tightly tucking him in with even more blankets and finally the large velcro straps. Lastly, they used tape across his forehead to create some tension which would further prevent his head from moving.
When it was time, the board moved in to the scanner. Moments later the tech let me know that we had to remove Benjamin's sweatpants before continuing as they had metal grommets for waistband ties. Nearly everything came off while three of us shimmied his pants down before putting everything back on: the washcloths, blankets, tape and velcro straps. Benjamin was totally unphased and even giggling about the ordeal.
Back in he slid. The first scan was brief and took just a few minutes. Then it was time for the PET scan. I saw the big blue digital countdown clock numbers light up on the machine: "18:00". Eighteen minutes with no breaks for an energetic four year-old to lie completely still. Doubt crept in to my mind as I wondered and worried that we'd perhaps made the wrong decision by asking to first try without anesthesia. These scans were so important and we wanted them to be as clear as possible for his doctors to read. We also didn't want to have to repeat them and expose Benjamin to double the radiation. There was nothing to do but wait. I closed my eyes and began box breathing, part of my pelvic floor physiotherapy homework.
From the other side of the machine I could hear the Tech reminding Benjamin not to move, to stay very still and telling him that he was doing great and that he was really proud of him. I didn't know if he was reminding him not to move because he had been or if he was just doing it so Benjamin would hear his voice and be re-assured he wasn't alone.
I was standing at the end of the machine where Benjamin's feet were and before the scan had started I'd been asked not to speak to him in case he moved to try to see me. At one point in the scan his little voice called out to me, "Mama? Mama?". Of course I replied, gently telling him I was right there, reminding him to lie still, telling him he was doing so, so well, and that it would be over very soon.
Anytime I'd break from my box breathing and open my eyes I was surprised at how little time had passed, despite feeling like I'd been standing there for an eternity. Finally the digital clock ran out, displaying a glowing "00:00". One short scan to go. Thankfully that last one went by quickly and before I knew it Benjamin had been slid out of the scanner and was being unwrapped, layer by layer. The only part of this he wasn't so fond of was having the tape removed from his forehead as some of his hair had found its way onto the sticky side and it pulled a bit as it was coming off.
I lifted him off the board and helped him put his pants and shoes back on. When I stood up, David was in front of me smiling. The Tech had gone out in the hall to get him and had told him that Benjamin had done amazingly well and that the scans were crystal clear.
As we were walking back to the small private room to gather our things we were told that an appointment had been booked for us in the Cancer Clinic. My heart sank. I didn't know why and as of the previous Thursday we didn't have any appointment that day on the books. I know because the receptionist had printed off all of our upcoming appointments for me.
We were asked if we'd like to have Benjamin's butterfly left in just in case they needed to access his port on the eighth floor and we said that we would. No sense in putting Benjamin through the anxiety of having it removed only to possibly have it put in and taken out a second time.
We took the elevator up to the Cancer Clinic and I checked in with the receptionist. She told me she'd call the nurse and get back to me right away. A few moments later, the fellow came over and told us that we could go. As I understand it, the appointment had been booked "just in case". Just in case of what I don't know and I'm not sure I wanted to so I didn't ask.
As we walked down the hall from the Cancer Clinic toward the elevators Benjamin piped up, "Is anyone going to take out my butterfly?". David and I had been so relieved when we'd been told we could go that we'd totally forgotten his needle was still in his port. Safe to say we're not up for any Parents of the Year awards!
We turned around and went straight to the IV room to explain the situation. The Cancer Clinic was the busiest I'd ever seen it and I wasn't surprised when the nurse told me they'd call us in as soon as they could and asked us to take a seat in the waiting area. It was about half an hour before we could see a nurse but she was wonderful, just as all of our nurses to date have been.
For the second time that day we headed toward the elevators to leave the hospital. Now the real scanxiety kicked in. The scans were done. The information had been captured. In seven to ten days we'd have answers. Would we be required to put Benjamin through a third round of Induction or would he graduate to Maintenance? If he graduated which arm of the trial would he be assigned to? What would the results mean for his and our lifestyle?
We hadn't even left the building and my brain was on spin cycle. I took a breath and heard my therapist's voice say, "What do you know right now?" If you didn't know Benjamin had cancer, you probably wouldn't know. His side effects have thankfully affected David and I far more than they ever did him. He was happy. His prognosis was good. He's arguably got the best, most experienced LCH medical team in the world. Those are the things I know right now and those are the things I will be holding onto until my phone rings.
Comments