October 14, 2022
Day 10 post-scans. I hadn't slept much in nearly two weeks. My anxiety and emotions were at an all-time high and my patience for nearly anything was hitting a new low. That morning I decided to email Benjamin's nurse to ask if she was able to provide us with any indication as to when we might receive a call from the doctors with the results. I feared it would come as I was picking up the kids from school which has become one of the most challenging times of the day. My thought was that if I knew what day or had any inclination as to a window of time I could make a plan. I tried to lose myself in my work but found myself refreshing my inbox every ten or so minutes to see if a reply had come in. Around 2:00PM I saw the email I'd been hoping for. The one from "Sick Kids Contact Nurse". To my surprise she was able to tell me to expect a call from one of the LCH oncologists in the next twenty to thirty minutes. David was downtown working from his office so there was no chance he'd be able to make it home in time for the call. I flipped him the email from Benjamin's nurse so that he'd know when I'd be talking to the doctor. I set up our iPad to record the conversation so that David could listen to it when he got home that evening. I lit a candle and turned on the playlist our very special @BenjamintheBrave.ca community helped me to build the day before. I sat in the chair in our bedroom and for thirty-two minutes I tried my best not to throw up.
My phone screen flashed with the generic "SickKids" caller ID. The lump in my throat seemed to well as my heart raced. I pressed record on the iPad and answered my phone. The doctor and I exchanged pleasantries and before she could move forward with the results I gently but assertively reminded her of what had happened the last time we were given results. I was direct as I asked her to please confirm that all necessary medical professionals that needed to be consulted had been and that there was alignment amongst them regarding the news she was about to deliver. She assured me that this was the case. Her assurance was immediately followed by incessant beeping. It must have been her pager that I could hear on the other end of the line as she asked me to hold so that she could call into the O.R. Once again I made a concerted effort not to throw up. When she returned and began to speak I began to scribe our conversation in my notebook. When I hung up sixteen minutes later I began crafting the text message to send to our families:
CT & PET SCAN RESULTS
I just got off the phone with the doctor, one of the three LCH oncologists that Ben sees at SickKids.
I opened the call by reminding her that results had been prematurely delivered to us in the past and confirmed that all parties and disciplines that needed to weigh in had done so. One of the three LCH oncologists has not yet weighed in as he is away but she assured me that she and the other LCH oncologist are in agreement, along with the radiologist that prepared the CT report and the radiologist that prepared the PET report. In three weeks they are going to review Ben's case as a group of twenty-five medical professionals but it is not expected that any new news will come out of rounds for us.
In terms of the CT results they do see a residual mass on the orbit but it is smaller than it was last time. It can take up to a year fro the mass to disappear but the fact that it's continued to decrease with each CT scan is good news.
In terms of the PET scan, which is considered to be the gold standard in picking up activity, we have received a negative result. That means that with 92% accuracy, Benjamin's cancer is not active. Very, very good news as previously we received a posited PET scan result.
The oncologist said that they've observed an uptake in Ben's tonsil and lymph node on his right side but because they've also observed thickening of the mucosa, which can be caused by a sinus infection or an allergy (inflammation), they are not concerned. We are to be closely monitoring for any signs of a frontal headache, pain in his forehead, pain in his cheeks and/or congestion. If it becomes bothersome to him they may diagnose him with sinusitis which would be cleared up with a few weeks worth of antibiotics. This has nothing to do with his LCH, just something they have also observed on the scans.
They also saw a change in his bone marrow which they believe is most likely due to his chemotherapy treatments. The oncologist said that it would be unlikely for him to develop bone marrow disease at his age having never had it before. Again, she said this change is common in patients receiving chemotherapy.
They don't see any reason to change his treatment at this time as his scans are showing that he's responding well. In four months (January 2023) they will likely repeat only the CT scan as the PET scan was negative. Of course this will be dependent on his clinical exams and test results between now and then but performing only the CT will reduce the amount of radiation Ben receives.
Some stand-out quotes from the oncologist:
"The PET scan is quite encouraging."
The results are "pretty good".
Ben is "really responding well".
I've been asked a few times tonight how I'm feeling and the answer is complicated. I'm relieved not to be waiting for the results call. I'm happy that the results are trending in a positive direction. I'm so, so proud of Ben for FaceTiming family tonight to tell them "I have positive news...my PET scans were negative!". So amazed that he's able to talk about his results confidently, accurately and with that famous Benjamin grin. I'm confused because I thought that if this was the news I really thought I'd feel a lot lighter and I just don't. As I write, David and I are celebrating with a glass of champagne but the fact is that so many unknowns remain. There is still a long road ahead. Chemotherapy will continue. This journey will never truly be over. I feel intense guilt that I still feel as though I'm not able to exhale. But I'm working hard, really hard, to feel the light and to celebrate this win. I just didn't think this news would be complicated or that celebrating would feel hard.