Noah was born a full-term healthy baby on August 28th, 2015. We were your typical family, getting accustomed to our new schedule with a newborn. When Noah was around 2 months old we started to notice he had become more fussy, had irregular bowel movements and had started to sweat. At regular doctor appointments, Noah was proclaimed to be a healthy baby. Since he was our first, we did not know any different…
When Noah was 3 months old, we noticed one of his pupils was larger than the other, and one of his eyelids was droopy. We took Noah to the doctor that morning. After seeing the doctor and being examined, Noah was sent home, with some exams scheduled in a few weeks. But something did not feel right. The next day we took him to Sick Kids Hospital, within hours they had done X-Rays, ultrasounds, and CT Scans, and we waited.
The moment the doctor came in and told us to have a seat, we froze. There were to be no good news that day. They told us they found masses in Noah, masses - plural. Noah, our Noah, a tiny 3 month old baby, had a 7 cm mass in his chest, multiple masses in his lungs, on both adrenal glands and in his liver. The list seemed to go on and on. Right away, your mind goes to the worst possible place. This can’t be survivable. How long does he have?
They did not have any answers. We took turns breaking down and comforting each other, while we waited for further tests. Each expert explained things to us that didn’t make any sense. This is our baby, how could this be? They said it may be neuroblastoma, spoke of survival rates, chemotherapy and stage 4 cancer, all while our tiny baby was laying in bed being poked and prodded.
It is unimaginable how adaptive we can be when we have to be. In the next week, we learned all about Neuroblastoma as we anxiously waited on actionable steps and the results of an MYCN - which indicates whether Noah’s cancer was 95% survivable or 50% survivable. On the 4th day we finally received the first piece of good news, Noah’s MYCN was off. Which meant 95% survival rate, and less harsh chemotherapy treatment.
The next two weeks were a blur as this quickly became our new “normal”. We stayed in a tiny hospital room as Noah received different medications to manage the effects of his cancer and to help him become stable. In December of 2015, we were able to go home, Noah became like a different baby, he was happy and energetic. In January 2016, after waiting for the results of a nerve-wrecking CT scan we were told that Noah’s tumours had shrunk and calcified enough that he would not require any more chemotherapy. We were done with the cancer. We could go home and continue our lives. Noah was healthy, that was all that mattered.
March 2016 came around, Noah was 6 months old and was starting to stand with help, eating solid foods, and loving his jolly-jumper. We were still trying to process the emotions from the past year and not panic at any slight change we saw in him. However, in mid-March an overwhelming feeling struck me that something wasn’t right; Noah had started to become fussy again. We went to Sick Kids and were told that he was just teething. Noah was still very fussy and upset that night, so the next day we went to Sick Kids again and we were told he may have a minor fracture in his leg, but were sent home again. By the third day, when we took Noah in, there was no denying that something was terribly wrong. Noah’s MRI showed a tumour that filled his spinal cord from top to bottom. In three days Noah had gone from an active baby, to a baby struggling to breathe. Noah was rushed to NICU for breathing support. I remember physically shaking the doctor and asking him to tell me Noah would be okay, only to get an answer that he couldn’t; I felt like I had been kicked in the stomach, I couldn’t breathe. My “cancer free” baby Noah, could no longer even move his arms and they intubated him, he was just 6 months old. This time, no one had any answers and there was no protocol for this. Neuroblastoma had not been observed to act this way before and they couldn’t operate because it was everywhere. We were told radiation was not an option, the doctors decided to start Noah on the harshest chemotherapy they possibly could and hoped for the best. They pumped Noah full of drugs: steroids, morphine, gabapentine, chemotherapy... Those first few days, he would just lie there, motionless. He couldn’t even make noise because he was intubated. He would just search with his eyes for some comfort. After a few days we noticed the first flicker of his finger. He was trying to hold his cow cow, his favourite stuffy.
Slowly Noah was able to move his arm and drop it. We were told that the chemotherapy had started to work, and this was good news. We had no reference point to look for, as his situation was unique, so we made daily notes of his progress and movements and put them up on the walls for everyone to see. Even intubated and not being able to move, Noah started to smile. He is remarkable.
After a month, we were able to allow Noah to breathe on his own and move out of the NICU. It should have been a happy moment, but we were so scared of not having the same one-on-one support for Noah on the oncology floor. Once on the 8th floor of Sick Kids, we saw the same nurses Noah had the first time around. At this point Noah started being able to move his arms fully and we began physical therapy. After his system recovered we still had chemotherapy rounds to do every 21 days.
After 2.5 months in the hospital, Noah was discharged. We still went twice a week to Sick Kids for check-ups and Noah had his last chemotherapy in June 2016. Noah will have lasting effects from the cancer for the rest of his life as the cancer paralyzed Noah from the chest down, but, just like with the cancer, Noah won’t let that stop him. He is a determined, strong and beautiful boy.