Mimi arrived just after 7AM to watch Ella so that both David and I could take Benjamin to the hospital for his ninth round of chemo. We left the house shortly after the sun, buckled up and checked on traffic before beginning the drive.
Traffic on the highway was heavy according to Waze so we made our way east by driving through the city. I recently re-posted a quote from a fellow oncology mum, "One of the hardest parts of this journey has been watching people go on with their lives while ours was falling apart". While I feel that this was more relatable to me in the early days of discovery and diagnosis, that thought occasionally creeps in, often unexpectedly. Mundane things like traffic can trigger thoughts that people are returning to work, to school, to a semblance of normalcy, and we're just not there yet. That said, I believe with my whole heart that we will get there.
The drive started like any other with Benjamin asking when we'd be there two minutes in. "In twenty-seven minutes", one of us says from the front seat. "That's a LOT of minutes", the little voice in the back seat responds.
We arrived just as Waze predicted and parked in the underground parking garage. Until a few weeks ago we always parked across the street in an outdoor lot but since finding out we qualify for a half-price parking pass underground we've switched things up and it's been game-changing. We don't need coats, hats or mittens anymore - it's so much less stuff for us to lug around once we're warmly inside.
The appointment started like most others. I checked in while David and Benjamin headed over to the PlayStation console, I interrupted them to put on his hospital-issued bracelet, Benjamin's name was called over the intercom to go to the Orange Pod for vitals and measurements and being lead into an exam room to wait to see the doctor.
His stats this week looked good. No weight gain. His WBC count was on the rise. His Neutrophils level was normal. His RBC count was slightly low but not worrisome. His HGB level was on the lower side but again, not worrisome.
Benjamin's oncologist came in. He told us that in the previous day's rounds, a meeting that is conducted bi-weekly with his fellow LCH colleagues, they collectively decided that in addition to the CT scan that Benjamin would receive following this second round of Induction, that he would also have a PET scan. While a CT scan will show whether or not the cancer mass has decreased, the PET scan will show, if there is residual disease, whether or not it is active.
You may be wondering, as I was, why the doctors would be on the fence about ordering a PET scan, aside from the obvious concerns about additional radiation. In my medically untrained mind, this information would be highly beneficial, if not crucial, to know. The oncologist explained that because they hadn't done one in the discovery phase, because at that time none of the doctors we saw thought that Benjamin's symptoms would lead to a cancer discovery, a PET scan wasn't conducted along with his initial CT scan. This means that the doctors have no baseline to compare the results to. Simply put, doing a PET scan now will only tell part of the story: whether or not the cancer is currently active, but we will have no way of knowing whether the activity has increased, decreased, as a result of two six-week-long blocks of Induction treatment.
We also learned that after the previous day's rounds that the classification of his cancer had changed. Because the rough patches on Benjamin's cheeks have shown no improvement after one and a half blocks of Induction, what had originally been named as Multi-system LCH would now be referred to as Multi-focal Bone LCH. The difference is that initially they suspected that more than one organ was affected, in Benjamin's case bone and skin. However, the doctors have now come to the conclusion that it is only the bone that is affected, however it's two bones (the orbital and zygomatic bones). We were told that this is neither worse nor better, it is simply more specific.
The doctor went on to discuss reactivation and survival rates. If Benjamin receives the standard of care, one year of chemo in addition to the other medications we administer at home, the chances that his LCH will return is 25%. He told us that the survival rate for someone like Benjamin was 95%. For me, this number came with a wave of relief and anxiety. 5% is not nothing, and to me, it's not low. But I have to hold on to the positive and 95% is really, really high number. David on the other hand, unbeknownst to me at the time, had a completely different emotional experience in hearing the survival rate.
As we walked out of the exam room, Benjamin running ahead to see if the PlayStation was free, David looked at me, eyes wide, and said he thought everyone with LCH survived, it was just whether or not it came back. To him, survival had been a given. The 95% was a complete shock. My heart broke for him. Only now did it made sense to me why he'd been able to be such a total rock for me in earlier days when I'd start to spiral into the "what ifs". It was my turn to be reassuring. To tell him that 95% was a high number and that Benjamin will beat this. To remind him of Benjamin's strength, courage and positivity and that all of those things combined made him a force to be reckoned with.
The wait for chemo was on the shorter end of normal. When Benjamin heard his name called, much the same as last week, he started going through the sequence of a meltdown. First came the pout, then the whimper, then the whine. By the time we reached the doorway to the IV room we had passed the tipping point. Unlike last week there was no coming back. David and I were both comforting him while he was on the bed, having his port cleaned, the insertion of his butterfly, having his blood drawn, receiving chemo, flushing the line, removal of his butterfly and the bandage holding it in place. On our way out, as we passed the PlayStation console, his tears really started to flow as he wanted to stay and play some more.
He calmed down before we reached the elevators and we talked with him about maybe not playing PlayStation before round ten, not as punishment but to see if maybe it would be less upsetting to him to play on his own tablet, the same one he could bring in to the IV room and continue playing without interruption. Our thinking was that perhaps that was was really upsetting for him was that we were taking him away from this new toy he enjoyed so much only to go through the most unpleasant part of his appointment, getting needles and the pain and discomfort of having large sticky bandages removed. Maybe if we could simply move from one location to another while he was allowed to continue play time that the IV room experience may run more smoothly. He was completely calm and happy for the remainder of the day, enjoyed bath time and story time as usual and drifted off to sleep easily.
David was pulling an all-nighter having taken time away from work to join us at the hospital so I was upstairs with the kiddos while they slept. At 10:00PM I heard Benjamin get out of bed. I tucked him back in, chatted and snuggled with him. At 10:45PM Ella woke up crying. I picked her up, rocked her and rubbed her back until she was comforted and sleepy. At 11:30PM Benjamin woke up and stayed up until 1:30AM. At 4:00AM Benjamin woke up and asked for me to come snuggle him in his bed for a while. At 4:45AM Ella woke for a second time. I gave her a drink and a cuddle and put her back down. At 5:30AM Benjamin was up for the day, followed by Ella at 6:15AM. We headed downstairs, ahead of the time the coffee was set to start brewing so I turned on the machine while the kids played. I expected to find David catching a catnap in the basement when I headed down to bring him a cup of coffee but he was already up, headphones on, hood up, back at it. Needless to say, Fridays can be tough with insomnia often hitting for Benjamin on Thursday nights.
Since having the conversation about tablet gaming instead of using the hospital's PlayStation nearly one week ago and leading up to round ten (tomorrow), he has started conversations very calmly saying things like, "Maybe when our break from the Marble game is over..." (he thinks 'Marvel' is 'marble'). He remembers our conversation and isn't showing any signs of viewing the change in hospital routine we proposed to him as punishment, which we never intended it to be. It's a lot of trial and sometimes even more error, but there's no manual for navigating this. All we can do is our best and to cross our fingers that tomorrow's appointment runs more smoothly.
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