November 30, 2020. Ian had a minor surgery for a port placement following his very first chemotherapy treatment.
December 6, 2021. One year and 6 days later. Ian officially finished this regiment of chemo. OUR BABY RANG THE BELL!
What a year it’s been. I was so nervous for him to start chemo. I was a wreck for awhile. I could pull myself together long enough to care for him the way he needed. Pulled myself together in the face of others. But when the doors closed behind me, when I was left in the dark by myself, I broke down. I broke down more times and in more different ways than I can tell you.
People would tell me how strong I am and how well I was handling things. I would want to laugh and then cry hearing those words. Because I didn’t feel that way. At all. I hated the pain it caused my heart and a lot of times, I did things to avoid that feeling. I never dealt with it the way I was suppose to. And I didn’t start to until recently.
But there’s also a joyous occasion to celebrate here. This regiment of chemo is OVER. There is such a sense of relief that the next few Mondays in the next few months don’t involve chemotherapy treatments. Don’t involve making sure Ian gets Zofran on top of his other medications to prevent him from getting sick. And then Ian getting sick anyway a week or two after the fact. Because that’s what chemo is. Unpredictable at times. Everyone reacts to it differently, and it’s not always the same every single time. It weighs on the patient, and it weighs on the caregivers.
It wasn’t until the last couple years that I realized what the ringing of the bell symbolized. I used to think it meant it was over. But Ian’s tumors are still present. Our chemo this past year was meant to keep the tumors stable until we can get on a clinical trial that targets the specific mutation he has. So for us, this isn’t the end. But we rang the bell. We rang the bell because even though it’s not over yet, this year was difficult. Most difficult on Ian. But he fought. He fought hard. And our baby deserved to celebrate getting through this year. Ringing the bell is a signal of hope. Hope for what’s to come in the next chapter of Ian’s brain tumor battles. Hope for freedom. For peace. For a cure. The kind of tumor Ian was diagnosed with is typically removed with surgery. You can’t even find information on the internet about it being treated with chemo because it just doesn’t happen. But the placement of Ian’s tumors are dangerous. They are in parts of his brain that could alter him entirely, they are going through major blood vessels, or they are simply too small and in deeper parts of the brain. There’s bound to be others who are, or will be, in our situation. We need to find a cure for them too. We are crossing our fingers and wishing on all the stars in the sky that this clinical trial helps our baby.
One year and 6 days later. Our baby rang that bell that he’s been staring at since our first day there. Wanting so badly to touch it. “Your day will come, buddy.”
It came on a whim. Ian was delayed treatment for 4 weeks from when he was originally suppose to get cycle 12 due to his low blood counts. When his counts were finally up, we agreed to go ahead with the last and final treatment to obtain the optimal results from the treatment. But the universe had other plans for us. Ian immediately had an allergic reaction to the chemo. He became as red as a tomato and extremely itchy. His lips began to swell, but the staff at Children’s caught it quickly enough that it didn’t get worse from there. This isn’t uncommon towards the end of the chemo he was on, especially after the delay Ian had this time around. Some Benadryl and steroids took care of it within minutes.
Something was telling me, even months ago, that Ian shouldn’t get cycle 12. Before all this, I couldn’t tell you why. It was just a feeling I had. I chalked it up as I was just tired of everything and wanted it to stop. I wanted him to be done and thought that would benefit him more. But the thing about chemo is that you need to stick to the plan. The plan called for 12 cycles, so 12 cycles is what you aim for. I agreed with that, but couldn’t get this intuition I was having about it out of my head. And now I know why.
Ian ringing that bell was the sweetest sound I ever heard. What an amazing Christmas present. This year, we will celebrate the end of this treatment journey, celebrate what’s to come, and celebrate the Now- our togetherness, our health, our love. Happy holidays everyone! From our family to yours, thank you for continuing to be on this journey with us!
