My mum was still here the day after Benjamin had had his scans. We'd all finished dinner together and while David and my mum did the dishes I took Benjamin and Ella upstairs for bath time. From the bathroom I heard the front door open and Mimi call in to my mum and David. She has a key and it's not uncommon for her to drop by, usually with delicious treats.
Benjamin was lying on his back in the bath and Ella was trying to hug him which meant she was accidentally pushing his face under water. I reached into the tub, soaking my long sleeves and supported his head, cradling it in my hand, so that she could give him a hug and he could breathe.
Out of the corner of my eye I saw something flash on the bathroom counter. It was my phone and my ringer was off. I could just make out the all caps name scrolling across my phone. It was the oncologist. I quickly lifted Benjamin into an upright position in the tub and answered the call with soaking wet hands. My heart sank. I was too late. The line was dead. It took a moment to register that the name I'd seen scrolling across the screen wasn't the usual generic 'SickKids', it was the doctor's name meaning he'd called from his personal line.
I yelled downstairs to David to come up and heard him bolt down the hall and start up the stairs. I could tell he was looking behind him as he yelled, "Grandmas! Please watch the kids in the bath! There's a call from Ben's doctor!"
I was already hitting redial, I kicked behind me to close our bedroom door but the wind from the open window caused it to slam shut making this all extra dramatic. I tripped over the bed to get to my dresser drawer with my medical notebook. The doctor didn't answer but my call to him was interrupted by a beep. He was calling me back.
By now David was in our room, the grandmas with in the bathroom with the kids and I was frantically looking for a blank page to be able to take notes. I tried my best to sound calm as I answered the phone but obviously failed miserably as the doctor asked if he'd caught me at a bad time. Not bad, just unexpected, it was nearly 7:00PM on a Friday night and only one day after Benjamin's scans. We weren't supposed to hear from him for seven to ten days.
In my mind there was only one reason to call so soon: the results were clear and he could provide us a definitive update. Whether the results were good or bad was the question.
He was excited to share with us the the CT scan showed further reduction of the soft tissue (the LCH itself) in comparison with the CT scan that has been done after Benjamin had completed the first phase of Induction. He went on to say that the LCH had decreased in every directional measurement. While it was still there, he said that he hadn't expected that it would be completely gone. He told us that in one patient's case the LCH was still present even two years after completing the Maintenance phase of treatment. In any case, further reduction is very, very good news.
He went on to say that he was very happy that we'd done the PET scan as it came back negative, meaning that the scar tissue (the LCH itself) is not metabolically active. This also is very, very good news.
Finally, we learned that Benjamin was being green-lit to graduate from Induction to Maintenance starting this week.
In terms of my reaction on that call, all I can remember are what I'd written in my notes. I honestly couldn't say if I cried happy tears or just sat there shell-shocked in the best way possible.
I know that when we hung up with the doctor that David and I stood on my side of the bed hugging tightly for a long time before opening our bedroom door. David went straight to the bathroom to deliver the good news to Mimi and Benjamin, who had just gotten out of the tub. I went into Ella's room where my mum was trying to wrestle her into her pajamas which could truly be a future Olympic event. I know I cried as I shared the good news with my mum.
Moments later I was back in our bedroom and Benjamin bolted in excitedly yelling that most weeks he'd be able to go to school five days a week. I scooped him on my lap and squeezed him. He kept repeating, "Mama, you're hurting me! Mama? Mama! You're hurting me!". When I loosed my hug on him I looked up to see David and both grandmas laughing. Ella joined in on a laughter just a beat later - her comedic timing is hilariously impeccable. I got in one more tight hug before I let him go.
Earlier that day my mum and I had taken Benjamin to the zoo while Ella was at school. Once again, I fulfilled my promise to the universe to take him to see the snakes if he'd just be ok.
For whatever reason they had even more snake exhibits open that day and we saw much, much bigger ones than we'd seen the time before. Every pavilion was like a personal house of nightmares for me but I did it. And while it may seem incredibly superstitious and silly, we got the results we were hoping for. Not only that but Benjamin was over the moon excited to have shown grandma his zoo.
Once the kids were sleeping soundly, David, Grandma, Mimi and I celebrated with a bottle of Veuve we'd been saving for a worthy occasion. This news certainly fit the bill and then some.
As I write this post we're waiting for a call from the oncologist to tell us what trial group Benjamin has been assigned to. Depending on the result of the randomization we may have another heavy decision ahead of us, one that we'll need to make by tomorrow morning's first Maintenance chemo appointment.
While we've still got a long journey ahead, we're focusing our energy on what feels like a really, really big win.
Comments