The next morning, her blood work came back as abnormal and we were sent to the children’s hospital. By then my mother in law had arrived to have our boys so my husband could come with Piper and I. We spent the entire day doing scans and tests trying to get some answers.
We were then given a room on the oncology ward. Instant heartbreak. Later that afternoon, we were told our perfect little 11-month-old baby had cancer. Neuroblastoma to be exact.
Neuroblastoma is a rare childhood cancer, but the most common in infants. We knew from the scans that Piper was stage 4 as it had already spread from the adrenal gland to the liver, lymph nodes, abdomen, chest cavity, and ovaries. The thing we didn’t know was whether she was high or intermediate risk, which would determine how much treatment she would need.
The following morning, she went for her first general anaesthetic and first surgery. They put in a central line straight to a major blood vessel near her heart and took a biopsy of one of the tumours. She then started chemotherapy that afternoon. A couple of weeks later we finally got the results of the biopsy, she was mycn amplified, which meant she was high risk. This meant we had a big road ahead of us.
Piper would need 5 rounds of chemotherapy, surgery, stem cell transplant, radiation, and 6 months of immunotherapy. There are so many side effects to all the treatment, vomiting, diarrhea, mouth sores, weight loss, and some much more serious side effects which can land the kids in ICU.
We had to rely on family taking time off work and traveling to stay with our boys while Piper had treatment so my husband could continue working to keep a roof over our head. This meant I was always the one to spend nights and time in the hospital away from my boys.
I always missed out on special things with them which was extremely hard at the time. You don’t want to disappoint any of your kids or treat one of them as more important than the other, but at that time Piper’s treatment was our biggest priority.
Stem cell transplant was definitely the hardest, we were isolated for 4 weeks. She didn’t see her brothers for three weeks. They would both cry and beg to see her which was absolutely heartbreaking. My husband luckily had most of that time off to help me as we basically wouldn’t get any sleep with Piper up most the night being sick or in pain. Something you wouldn’t wish on your worst enemy.
Her transplant journey began at the end of November which meant we were highly likely going to be spending Christmas in the hospital. But by some small miracle we got discharged on Christmas day which was honestly the best gift I have ever received.
Most weeks that we weren’t inpatient (which was usually or a week every three weeks), we had to drive to the hospital for a full day of appointments about three days a week. I was constantly exhausted, living off red bull and coffee, trying to juggle school dropoffs for my eldest and then spending the day at the hospital with Piper and Franklin who was two at the time, or all three of them the days Cayden didn’t have school or over the holidays. The hospital is an hour each way from where we live so that added to my exhaustion.
