April 11, 2023
Benjamin's first oncology appointment after learning that he was LCH-free. Cancer-free. In remission. Months later I still can't say those words without a lump in my throat and tear in my eyes. It's surreal. It's wonderful. But it also comes with fear. With worry. With the knowledge that this is the best possible news we could receive and on the flip side knowing that the nature of this disease is that it has a tendency to reoccur and that there is no guarantee that we'll ever "be on the other side of this".
When I set out to write this post I had thought that positivity would flow from my heart, through my fingers and onto the page. The above words caught me by surprise, especially in an entry meant to recount this truly joyful day on what has felt like a long and winding journey. As I've come to learn over the past year and a half, for me, having strong and wildly opposing feelings simultaneously isn't uncommon. All that said, on the whole. this day was incredible.
We weren't entirely sure what to expect from this appointment but I'm happy to report it was smooth sailing. Benjamin received a little prick of his finger and was a total pro. No tears, not even a flinch. Once the nurse had collected what she needed to be sent to the lab we were called to the orange pod for vitals and measurements. To our surprise Benjamin had grown nearly 7cm over the past 3 months! The exam with his oncologist went well and afterwards he could relax and play games while David and I spoke with the doctor.
Being in remission I expected a short, easy conversation but instead experienced a sobering reminder that this journey is lifelong. That said, we very much appreciate the candor of Benjamin's oncologists as well as the time they take to have these conversations with us. I know by the number of families in the waiting area that they are busy but they take care to ensure we never feel rushed.
We learned that our next steps include the following:
Monitoring for signs of diabetes insipidus which include excessive drinking, urination and incontinence.
Visiting SickKids every 3 months for the next year for blood tests and physical exams.
Undergoing an MRI in January 2024 to determine the next steps of Benjamin's medical care.
We're often asked "what if the MRI results show X?" and "what if the MRI results show Y?". My honest answer is that this is as far ahead as I'm able to look to be able to focus on the what we know now.
In addition to a list of next steps our conversation also unearthed some unsettling information:
The type of bloodwork that Benjamin receives at his regular follow-ups won't indicate reoccurrence.
The disease can reoccur anywhere in the body, not necessarily in the bone (in the case of LCH, bone is considered to be "low risk" whereas areas like the spleen, liver and bone marrow are considered "high risk"). The way LCH reoccurrence was described to us was "weeds in a garden".
Because of where his lesion is, Benjamin is at risk for developing neurodegenerative LCH which affects speech and balance to name a few. The odds are low but not zero and as I've said before, odds don't mean much to me as odds were in our favour that we'd never have a child affected by LCH. The good news is that inflammatory treatments exist but we've got everything crossed that we'll never have to cross that bridge.
Until very recently Canada was the only G7 country lacking a rare disease plan. $1.5B has been allocated to rare diseases (like LCH) over the next 5 years. While Benjamin will be followed at SickKids until he turns 18 it is the only dedicated LCH clinic in Canada. If he requires to be followed into adulthood his care will be transferred to Princess Margaret however this is worrisome for us as there is no dedicated LCH clinic for adults in Canada.
If you'd like more information about rare diseases in Canada, Benjamin's oncologist encouraged us to learn from the CORD (Canadian Organization for Rare Disorders) website. You can also help to ensure the National Strategy for Drugs for Rare Diseases is successful by signing this petition.
After Benjamin's exam and our conversation with his oncologist it was time for the main event: the ringing of the bell! But first his oncologist presented him with a certificate and a crystal cube "for distinguished acts of Strength, Bravery and Perseverance". He also received a very special "End of Treatment" Bravery Bead to add to the strands of beads he's collected. After the presentation, Benjamin's nurse handed him the bell. I've re-watched the video of this moment a thousand times and every time I hear her say, "You ring that bell and you ring it hard, honey!" I crumble.
Lots of hugs and even more tears later the 3 of us left the hospital where a year and a half ago this journey began. Joy, love, pride, gratitude, hope, worry and fear all in tow on our way to a celebratory lunch on a patio (in April!) in our neighbourhood. We knew the very next morning we'd be right back at SickKids for Benjamin's surgery to remove his port.