In our last conversation with the oncologist, the one where we learned that Benjamin didn't have a sarcoma but rather a rare disease and type of cancer called LCH, he told us to expect a call from the hospital the next day to schedule his next round of tests.
When I didn't hear from anyone I snapped into mama bear mode and called every phone number and extension I could find and left a voicemail in every mailbox I was connected to. By some miracle I was able to book all three scans, chest x-rays, skeletal survey and ultrasound of the abdomen, for the next day.
Based on the week-long wait time for Benjamin's diagnosis, we were expecting similar before having the results of this next round of tests. To our surprise we got a call from Sick Kids booking us in for a results appointment just two days later.
Benjamin had been so good, his bright light never dimming, while he was in and out of the hospital so frequently, being poked and prodded by the myriad of doctors who were working so hard to diagnose him. Not wanting his enthusiasm to wane I suggested he wear his skeleton jammies to his scans. He LOVED the idea and insisted on completing his look with his skeleton socks and mittens. He gave me one of his wide, full-on signature Benjamin smiles as he told me he couldn't wait to give the doctors in the x-ray and ultrasound clinics a laugh.
Just as he had been up until this point, Benjamin was a willing and easy-going patient through the hours of imaging he had to undergo. He was cracking jokes, talking Cars, and posing for the hospital staff who asked him about the bones on his jammies.
Now that we were out of isolation from being close contacts to someone who had tested positive for COVID we were allowed to visit the hospital's Starbucks. I promised Benjamin the treat of his choice on our way out. This has since become a tradition I may never have started if I knew how often we'd be in and out of Sick Kids but he loves it and always leaves with a smile. If it's something that feels special, helps make this journey exciting and keeps it from feeling overwhelming, scary or negative, I'll do it every single time. My hope is that one day he'll ask me about this chapter in his life like this: "Mum, where was that place we used to go all the time, just you and me, for special treats?". I'm sure he'll remember more than the treats but if he can remember that there was something special about the way he felt through this, I'll take it as a huge win.
Now back to the story...
The day between Benjamin's tests and receiving his results my aunt dropped by with a very special gift. She'd gotten out her old sewing machine and made him his very own superhero cape complete with a lightning bolt, bold blue "B" for "Benjamin the Brave" and a Spiderman lining. He was beyond excited.
Later that day, Benjamin asked me if he could wear his new cape to the hospital for our next appointment. I guess he liked the idea of dressing up after the reaction he'd gotten from his doctors and nurses when he'd been there to get his scans. Of course my answer was yes and I laid out all of the pieces of the outfit he'd so carefully chosen.
Even thought it was only a couple of days the waiting was torturous. I tried hard to keep away from Google so that I could keep my mind focused purely on the information we'd receive from the doctor about Benjamin's case in particular. I had one brief slip-up the night before meeting with the oncologist and I learned from a reputable source that if we were told that the LCH existed in his liver, spleen or bone marrow we'd be looking at a "high-risk" diagnosis with a survival rate that's roughly 20% lower than if the LCH was affecting his other "low-risk" organs. That was enough for me to close my computer, wish for a time machine to go back and un-know this information and to have a sleepless night.
In the morning Mimi arrived at our house, masked as her cold was still lingering, to care for Ella while David drove Benjamin and I to the hospital. COVID rules dictate that one one parent can accompany a patient into the hospital and only under very special circumstances are both parents allowed in. We've been told by the hospital that we don't want the kind of circumstances where this exception is made.
The plan was to give Benjamin his tablet and noise-cancelling headphones and to FaceTime David who'd be taking the appointment from a nearby parking lot in our car once we were in with the doctor. Once again, I knew I'd have to put on my bravest face for our little superhero so as not to hint that there was any reason to fear or to be sad. It's not that I think parents should hide their emotions from their kids but under these circumstances, for this child in particular, the best thing I can do to keep up his strength, his spirit and his joie-de-vivre is to keep things as happy and light as possible.
David dropped us off at the door, carefully fastened Benjamin's cape around his neck and gave us both huge hugs before driving down the roundabout to the parking lot down the street. The knots in my stomach grew tighter the longer we had to wait. I'm sure I was talking too loudly, too quickly in a far too upbeat tone considering where we were. I was over-compensating for the way I was feeling but matching Benjamin's level of excitement for the day's adventure at the hospital was what he needed to feel safe and happy and I would do anything, anything for the little guy bravely snuggled up next to me in that waiting room.
Finally Benjamin's name was called. I dialled David on FaceTime and we met the oncologist who specialized in LCH, the fellow and the nurse that would be following Benjamin's case. I held my breath as the oncologist began to speak. He told us that the LCH was localized to two organs. Still holding my breath, he continued. The first organ being the skin which he believed was presenting as a patch of mild dandruff and a minor rash on his cheeks. The second organ being bone, specifically two facial bones: orbital and zygomatic. Because the bones affected are so close to his eye we were told that the main components of his treatment will consist of a mild chemotherapy and a heavy dose of an oral steroid.
The goal of his treatment, specifically the chemotherapy, is to reduce the swelling, inflammation and pain of the affected bones in the hopes that they will heal, as well as to lower the odds of the LCH returning (most common in the two years following treatment) as well as late complications which include some scary things like Diabetes Insipidus (no cure) and impediments to his neurological functions.
Benjamin was also tested for something called the BRAF Mutation and his results were negative. This means that the chances of his LCH returning are less than had he tested positive, however, the doctor did caveat that other mutations are possible but at this time they're not tested for. Still, a negative BRAF Mutation result is good news.
Now that we knew a bit about the drugs that would be used to treat Benjamin's LCH a big question on our minds was what does his treatment plan look like? The first six weeks is a phase called Induction and it is the most intensive phase. The first step is a recommended surgical procedure which requires Benjamin to be put under general anesthesia to have a port-a-cath, or central IV, implanted in his chest. This is meant to facilitate the administration of chemotherapy which alternatively would require that an IV be inserted into his hand or arm for each treatment. Not only can going the IV route be traumatic for a young child, result in tired veins and cause scarring but if Benjamin were to ever wriggle in a way that the IV would come out during a chemotherapy treatment, the drug itself would result in burning of the skin.
To me the port-a-cath sounded scary - words like "surgery", "general anesthesia" and "implant" all made me feel very uneasy as there's always risk associated with each of these. The memory of Benjamin's last surgery for his biopsy was still just weeks in the rearview and the frightening language of the consent forms was still fresh in my mind. However, the risk of not proceeding with a port-a-cath (or port) seemed higher in the long run. Something we later confirmed with my cousin who is a paediatric neurologist who has volunteered herself as an invaluable resource to us.
The oncologist told us that he'd already put in a rush request for the port surgery in the hopes that it would be in place for his first chemotherapy treatment in one week's time. I will say, that though this has all been very overwhelming as we're essentially learning a new and very important language on the fly, we've been so appreciative at how quickly the doctors are moving forward with everything. They've minimized the time between knowing about the diagnosis and starting treatment which has helped in many ways to feel as though we're taking action and moving along the path to restoring the health for the little sweetheart who made us parents.
During this intensive Induction phase Benjamin will undergo chemotherapy treatments once every week. Because of the high dosage of steroids he's to take he'll be rendered immunodeficient as the role of this drug is to lower his body's ability to fight off the chemotherapy, allowing that drug to attack the LCH. As a result we'll have to keep him home from school and from his friends. This part breaks our hearts as he adores his time there and has been thriving.
After the Induction phase is completed at the end of February Benjamin will have his second CT scan. His healthcare team will then be able to assess whether the treatment he's received so far has been effective. If they're pleased with the results, Benjamin will move into the next phase, a less intensive phase, called Continuation.
The Continuation phase entails reducing the frequency of the chemotherapy treatments from once a week to once every three weeks and the oral steroid dosage will be tapered. At this time the expectation would be that Benjamin would be cleared to return to the classroom, something he's beyond excited for. That said, Ella has started at the same school and the first day he came with us to drop her off and pick her up we wondered if he'd be jealous that she's able to go or if he'd be sad if he saw his teachers or his friends. Quite the opposite - this heart-of-gold boy talked the whole way there about how he might get the chance to see his teachers or his friends. As we walked away from the building after drop-off he said a few times, "I'm really going to miss Ella". At pick-up he eagerly looked through the glass at the front of the school and as soon as he saw his baby sister he began cheering her on loudly and enthusiastically as she walked toward him.
All together if Induction and Continuation are effective the first time around Benjamin will receive what is called "the standard of care" which is one full year in length. In January 2023 he will receive his third CT scan and if it's clean he should be cleared to have the surgery to remove his port.
From there he will be followed closely. His doctors will be monitoring to see if the LCH returns as this is most common in the two years following treatment, if there are any signs of late effects such as Diabetes Insipidus or any neurological disrupters. At first he will be seen every 2-3 months, then every 6 months and eventually every year.
At the end of our appointment we did all of the hospital traditions we'd started together over the past few weeks: we chose our favourite pieces of art on the walls, guessed which one of the yellow elevators would come up to the eighth floor to take us down to the main level of the atrium and we stopped at Starbucks for a treat of Benjamin's choice and a much needed mama-sized coffee (don't worry, I remembered to get one for David who had been patiently waiting in the car all this time). David greeted us as we exited the building with wide open arms, a treat more special to Benjamin than his sprinkle heart-shaped cookie as his superhero, his dad, hadn't been able to even drive in the same car as us to any appointments up until now.
Throughout this process Benjamin has continued to be such a ray of sunshine for us and for all of the hospital staff he's met. His light is so bright and he just has to be ok because the world needs people like him so badly, now more than ever. He's got a fight ahead of him, and I don't just mean the LCH itself as the number of appointments, pokes, prods, surgeries, trips back and forth and the list of side effects that can come along with his medications are plentiful. If anyone can do this, it's him. He's already shown so much strength and maturity well beyond his years and we are so, so proud of our brave boy.
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