This visit to the hospital was set to be unlike any we'd had so far as this time we'd have Ella with us as well, at least for part of the time. A few weeks ago while we were at Blue Mountain she'd spiked high fevers for four days in a row and a urinary tract infection was the suspected cause. We'd been given a prescription for antibiotics for her to start taking while we were away provided we'd bring her in to our family doctor for a urinalysis when we were home. While her results didn't show signs of a UTI (being that she'd been on antibiotics for three days at the time her sample was taken this was not a surprise) they did show crystals and calcium oxalates which can be indicative of stones. An ultrasound at Sick Kids was ordered to determine if this was the case or not.
The plan was for David and I to take Benjamin to the hospital together as his appointment started earlier and then have one of us meet Mimi and Ella at the front entrance of the hospital in time to take her to her appointment. Being too young to wear a mask we wanted to avoid having Ella in the hospital for longer than she needed to be there and for the safety of the other oncology patients, even though she appeared healthy, we wanted to keep her out of the cancer clinic. Thank goodness for Mimi who as of now doubles as the world's best Baby Uber!
Mimi arrived at our home earlier than usual as we needed to install the rear-facing car seat in her SUV. She and Ella waved goodbye to me as I headed to the car where David and Benjamin were waiting (per usual - but to be fair, I have a lot to do to get us all ready for each hospital visit). Ella kept saying "BUH-BYE!" and giggling in between repeating the word. Such a funny little bunny, that one.
On our drive Benjamin talked excitedly about what he planned to show Ella at the hospital. Starbucks, the gift shop, the robot that makes ice cream. He's got such a sweet, kind, inclusive and excitable little heart that I can't help but feel so proud of the little person he continues to grow to be.
On the elevator ride up to the cancer clinic a doctor told Benjamin how much she liked his cape. He beamed as he thanked her and explained that the "B" stood for "Benjamin the Brave" and then proudly showed her that the inside had Spiderman on it. In true Sick Kids doctor form she reacted with excitement and enthusiasm that matched his.
In the clinic Benjamin was over the moon to see that the Playstation had been fixed and that no one was using it. He raced over, yelling back at David to follow him, as I checked us in and got his hospital bracelet. When his name was called over the intercom asking him to go to the IV room he was less than pleased. This was one of those tough walks down the hall. One of the walks where he drags his feet and whimpers that he doesn't want to get his butterfly. One of the ones where my heart breaks for him that he has to do this. Again.
Once in the IV room things continued to go downhill. He lost it, kicking and punching the air, crying and screaming loudly that he didn't want to get his butterfly. In addition to feeling helpless I find the unpredictability of his reaction in this room to be really difficult. Not that it should be predictable, he's only four and this is really, really tough stuff, but nonetheless it's hard. As soon as the butterfly was in and he was released back to the waiting room it was as though the past five minutes hadn't happened (for him at least).
When we were called to the orange pod Benjamin went much more willingly, excited to see his wonderful nurse. She recorded all of his measurements and let us know that his blood pressure was slightly elevated but wasn't worrisome as it's a known side effect of his medication. From there we waited in an exam room for the doctor.
Our approach to Benjamin's is exams is typically to have Benjamin and David playing together on his tablet and for me to have the conversation with the doctor, asking any questions that David and I have put our combined list between our last visit and the present one. When the door opened the doctor that walked in wasn't one we'd met before. She introduced herself as a fellow and she was amazing. Her exam of Benjamin was thorough and she was wonderful with him. She answered all of my questions, the biggest of which was whether it had been decided when Benjamin would receive his next round of scans. She didn't know off-hand but left to speak with one of the three LCH doctors on Benjamin's medical team. When she returned she told us that while normally a follow up PET and CT scan would be done after twelve months, the oncologists had collectively decided to repeat his scans at the six month mark (October 2022) to ensure that the disease was continuing to shrink and that the level of activity was decreasing. It was clear from the way that she spoke that she'd been brought up to speed on the miscommunication about his results that we'd received following Benjamin's previous round of scans.
The news of scans at the six month mark has me feeling two ways. The first is relieved that they're not going to wait a year to investigate progress. If the results are as we hope we can continue doing what we're doing and have no reason to believe that further improvements will be see at the twelve month mark. If they results aren't continuing in the right direction we won't waste six months on the same treatment plan but rather can pivot sooner to something that will hopefully be more effective. On the other hand, more scans means more exposure to radiation, especially as it will be both a CT and PET (though I know the decision to repeat at six months wouldn't have been made lightly). It means fasting, it means mentally and emotionally preparing Benjamin as well as ourselves. It means major scanxiety. It means trust issues bubbling to the surface, and by that I mean how can I trust that what they tell me is accurate after the way we received results last time? I mean no disrespect but when we get the results call I will be asking if the oncology team and the radiology team has met to discuss and come to an agreement, and if not, I will be asking for the opinions of both teams.
The other question I had for the fellow was if we managed to escape to our family cottage this summer, what the emergency plan should be. As expected, heading from the cottage to Kingston General or to CHEO would be best. We would call our destination hospital to let them know we were on our way and also call Sick Kids to update them on our situation and let them know which of the two hospitals they would need to connect with for Benjamin's bloodwork test results. While this planning adds a layer of complexity and a good dose of anxiety to every escape from the city I can't help but be grateful that there are several hospitals in relatively close proximity to one another that work well together to deliver world class patient care in an emergency situation.
Back in the waiting room Benjamin flagged down a hospital staff member who he mistakenly thought was a Campfire Circle volunteer on the floor. They got to chatting and the woman happened to have keys that open a few of the locked cabinets in the waiting room. We'd never seen inside them before and it turns out they're full of brand new, still-in-the-package Hot Wheels cars for the race track, dinosaurs for the doll house and plastic food for the toy kitchen. She asked Benjamin to choose two new Hot Wheels cars that he'd like to race on the track and left the other items out for him to play with as he pleased. A dozen or so car races later, an actual Campfire Circle volunteer arrived on the floor, craft supplies in tow. Benjamin walked up to her and asked if he could make a craft. At this point it was time for me to go downstairs to meet Mimi to get Ella for her ultrasound appointment.
As I carried Ella through the atrium her eyes were wide as she looked around. It must have been what Benjamin and I looked like that first visit back in December. As we rode up the elevator I stood near the back so that she could look out at the ground floor getting further away.
Once we'd checked in and were seated comfortably in the waiting room, to my complete surprise, our little wild child sat calmly and quietly in my lap for the nearly twenty minute wait. Using her best indoor voice she calmly pointed out the clouds and the sunshine made of tissue paper hanging from the ceiling and the very new baby sleeping soundly in her mother's arms sitting across from us.
Just as her name was called Benjamin and David, having finished with chemo, entered the waiting room. Benjamin asked if he could come into the exam room with Ella and I. began to say that the technician probably preferred fewer people but he quickly interjected and said that it would be fine for Benjamin to join us. Inside the room Benjamin used his best calm and encouraging big brother voice to tell Ella that everything was going to be ok. He explained to her that they'll use gel on her tummy and that it would feel warm. He waster no time adding that they only warm up the gel for kids and that it's cold for adults, something he was told by the tech at his first ultrasound.
Ella surprised me a second time that morning by laying absolutely still, only moving slightly when she giggled at the feeling of the tech's instrument moving along her belly. Benjamin alternated between holding her hand and standing at the head of the exam bed where she could still see him when she was positioned on her side. He asked the tech why they use gel during an ultrasound. I'd always assumed it was to facilitate gliding the instrument over the skin but it's not; it's to allow sound waves to travel more easily and the result is that clearer images are captured.
Once her ultrasound was over, the four of us headed to the elevators so that Benjamin and Ella could choose their treats from Starbucks. As we waited for our order, David held Ella and Benjamin twirled around in circles to make his cape fly out behind him. Here we were in line at a coffee shop, a relatively normal thing for families to do, but for us it was in the lobby of Sick Kids instead of in our local neighbourhood spots.
Once we had our order we waited for the elevator doors to to parking lot to open. Benjamin turned to Ella and pointing out the Sick Kids VS images on them said, "See these kids on the doors? One day that could be me."
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