Fourth CT Scan - REMISSION

Photo from the 2023 SickKids House of Legends campaign

On January 24, 2023, nearly one year to the day since Benjamin began chemotherapy treatment for a rare form of cancer, our lives as we knew them changed once again.

That morning Benjamin, David and I arrived at the hospital for Benjamin's fourth CT scan in twelve months and he knocked it out of the park with his brave and ever-positive attitude, adventurous spirit and friendly demeanour. He laid completely still in the CT scanner and as soon as we received confirmation that the images captured were crystal clear we were given the go-ahead to leave.

With the tough part for Benjamin out of the way, David and I knew the hardest part, the waiting for results, was just beginning. We decided to honour our post-hospital tradition with the added bonus of distracting ourselves by taking Benjamin to Sky Zone followed by lunch in a restaurant. While these may seem like regular activities for many, we've kept busy public outings to a minimum, the exception being on weekdays after an appointment during regular school and business hours.

Ella's going through a phase where only mama will do at bedtime so while I was putting her down David was in the next room doing the same with Benjamin. As I crept out of Ella's bedroom I peeked in on the boys who had fallen asleep together. I tip toed downstairs and as I was mindlessly scrolling through apps on my phone, it rang. The number was close to mine and I was nearly sure it was a phishing call but post-scan, until I have those results, I answer ALL the calls. I picked up and it was a bad connection.

Me: "Hello?"

Them: "Hello?"

Me: "Hello?"

Them: "Hello?"

Me: "Hello..."

Them:

Me:

Them: "Is now a good time?"

I said yes and told myself to patient, not to hang up unless I heard the words "duct cleaning". To my complete and total shock, it was Benjamin's oncology fellow calling us on the same day as his scans at nearly 8:30 at night. We'd been told to expect the results on Friday. It was Tuesday. I asked if he could please hold on until I could get my husband. Those words are a major trigger for David and before I could even stand up I heard him jump out of Benjamin's bed and start down the stairs, taking them two at a time. Before I unmuted the phone I asked David to start recording the conversation on his Voice Memo app. I didn't have my notebook or a pen and figured if he was calling same day at this time of night that the scan results must have been very clear and in my head that meant the news would either be really great or devastating. In any case, I didn't want to miss anything. I liken these calls to a marriage proposal in the way you sort of black out in terms of the details but retain the jist.

I haven't gone back and listened to the recording but I remember these words: "LCH free". Once I heard those words I remember feeling desperate. I needed to hear him to say the words, out loud, in as many ways as possible so I started asking questions.

Me: "LCH free?"

Oncology fellow: "LCH free."

Me: "Cancer free?"

Oncology fellow: "Cancer free."

Me: "Does this mean he's in remission?"

Oncology fellow: "He's in remission."

David and I were completely stunned. Absolutely shell-shocked. Uncharacteristically quiet aside from asking the same question in as many ways as I could come up with. When we hung up the phone we sat side by side in tear-streaming silence for a minute before we could look at each other and hug. It was one of the best, most connected hugs of my entire life, knowing that he was feeling the exact same way.

David was the one to finally break the silence by asking me if I thought we should wake up Benjamin to share the news with him first. I absolutely did and so the two of us headed upstairs and we allowed Marvel to follow knowing his presence would make it extra-special. As David sat on Benjamin's bed holding Marvel in his lap I gentle lifted Benjamin into mine. We worked hard for nearly a full minute before he opened his eyes. As predicted, he was overjoyed when he discovered Marvel was not only in his room but up on his bed. With tear-filled eyes, a cracking voice and a big smile I told him that his doctor had just called and that he was cancer-free. At first he fed off David and my happy tears and smiles but his face quickly fell and he burst into tears as he told us that he was really going to miss chemo. We knew what he meant. He wasn't going to miss the medicine itself but rather the experience, the friends he'd made on the oncology floor, his nurses, his doctors, the Campfire Circle volunteers, the Child Life Specialists, the toys and activities, the special post-treatment treats and adventures. We realized in that moment that everything we'd hoped for in terms of how he'd look back on this chapter of his life had come true.

Our next move was to pop a bottle of champagne, at 9:00pm on a Tuesday, and call our families. If we didn't have to wait for the news, we felt that they shouldn't have to either. My mother-in-law, God love her, had a bottle of champagne popped within thirty seconds of hearing the results. It was the second time in my entire life that I've ever seen my dad cry. Like me, my mum could barely speak. David had to give the news on each call as I was completely unable to utter the words "cancer-free". The moment I'd try I'd break down. I still can't say them without welling up.

Since we began telling our family and friends the two most common questions we've been asked are "What's next (in terms of Benjamin's care)?" and "How do you feel?". The first one is easier to answer so I'll start there. Benjamin will go into the hospital for regular follow-ups every three months which will entail a finger poke to test his blood and a physical exam. He'll also need to have surgery to remove the port-a-cath that was implanted into his chest to facilitate blood draws, IV drips and chemotherapy administration.

The second question is a tougher one to answer. "Cancer free" are the words we've been longing to hear since Benjamin's diagnosis and it's the best possible news we could have hoped to get at this point in his journey. That said, there's still a long road ahead which includes the surgery to remove his port. It requires me to once again sign my name beside a statement that goes something like "anesthesia can be fatal" on the surgical consent form. I'm anxious when I think about Benjamin going under and how he hasn't always come to very well after the fact. I'm comforted knowing that for the first time David will be allowed to be there with us for the surgery. I won't have to wait alone in that quiet room full of concerned and anxious parents. I won't have to wait alone for the doctor to come over and quietly ask me to follow them on a silent journey into a tiny, silent room where they'll tell me how the surgery went. I'm fearful knowing that the chance of a relapse in the first two years following remission is not a small percentage, especially when you consider that the total number of children that are diagnosed with LCH in Canada each year is between thirty-five and forty. I'm overwhelmed when I think about how the odds of relapse in those first two years are significantly higher than the odds that our family would ever be affected by this disease in the first place. I feel sad knowing that I'll never be truly carefree again, that this anxious, nagging feeling will always be there in some way, shape or form. That said, it's something I'm committed to working on so that while it may always be there, in time, it will be more of a whisper than a yell. I feel extreme guilt for having heavy, traumatic or negative thoughts when I know how lucky we are especially when I consider how much other families that we've met along this road are desperate to hear the words "cancer free". I feel grateful for the unbelievable expertise, care, kindness and empathy that Benjamin's medical team have and continue to offer and without which we couldn't have arrived here. I feel calmer and reassured knowing that Benjamin will be followed so closely in the coming years and that throughout this time he'll receive consistency of care. I feel so fortunate that we live here, with one of the world's best children's hospitals and that because of that we're able to celebrate this major milestone, albeit cautiously. I feel joy knowing that life for both Benjamin and Ella is on a path to some semblance of normalcy. I feel relieved that Benjamin is so positive and resilient that he views his journey through rose-coloured glasses and has forgotten many of the memories that I recall as traumatic. I feel lucky that we've had and continue to have so much family, friend and community support. I honestly don't know what we did to deserve it and I don't know where we'd be without every last one of you.

In short, I feel a lot of opposing feelings, many of which are difficult and scary to articulate. Though it's incredibly uncomfortable and exhausting I know I need to sit with these feelings and to process them to be able to continue to move forward in a way that honours Benjamin's journey and this huge step in the right direction.