On May 25, 2021 our 20 month year old daughter, Fiapule, was diagnosed with stage 4 Neuroblastoma. A few weeks prior we noticed some spotting of blood in her nappy. Scans revealed a polyp sitting inside her cervix which turned out to be neuroblastoma.
I still remember the phone call like it was yesterday. It was peak hour and I was on a packed train home from work when I got a call about her results.
"The doctor asked me to call him back when I was home with my husband so he could talk to us together. Anxiety crept in as I thought of the worst possible scenarios. Hearing the news that our child had cancer was absolutely heartbreaking." Maryanne, Fiapule's mum
Adjusting to hospital life was difficult in the beginning, especially with trying to take care of our other daughter. We had to manage before and after school care, as well as the support from family members when appointments took longer than expected.
The African proverb "It takes a village to raise a child" resonates with us so much. We had our "village" of family and friends cook us dinners, arrange Ubereats, send out groceries, babysit our older daughter, visit with food and pray over us. We are forever grateful for the support from all our friends and family. We also had the support of my amazing sister-in-law Rebekkah who helped to look after Fiapule with overnight hospital stays.
Fiapule's chemo consisted of five days infusion, then a two-week break. She repeated this for five rounds. Scans and general anaesthetic were tough. The first two times we had to physically restrain our daughter while they placed the mask on her. Walking away from your child as they are put to sleep for surgery never got easier, and to this day is still hard.
The toughest part of Fiapule's treatment were the stem cell transplants. High dose chemo meant bad mucositis (a painful inflammation of the gut and mouth). Fiapule was tolerating food up until this moment, but the mucositis got so bad she needed a nasogastric tube for feeding. I cried when she got her tube. I felt so helpless, I didn't want her to have it. She had already been through so much, however the tube ended up being very helpful as it meant we no longer needed to force or hold her down to take her medication and she was able to get some liquid food.
Unfortunately, Fiapule went through fifteen nasogastric tubes during both her stem cell transplants and it was probably one of the most traumatic parts about her journey, but she continued to remain our happy bubbly girl.
"We found constantly using positive self talk helped to keep her spirits high. "You got this" and "Pule Malosi" (strong in Samoan). As parents there were moments where we were feeling defeated and she would randomly say, "I got this." Maryanne, Fiapule's mum
During December 2021, in between the stem cell transplants, we welcomed our baby girl Marie Avatea. She arrived during the toughest time and we call her our "blessing in the storm." Her arrival brought joy and affection. She end up being Fiapule's little hospital pal and was a good distraction for her big sis.
Chemo was tough and the stem cell transplants were hard for our little girl. As parents we tried to stay positive and hopeful through prayer. The tough days will forever haunt us - we hope our daughter doesn't remember anything. Fiapule defeated the odds, but we know not all children have the same outcome. We desperately need kinder treatments. Life isn't fair. We don't understand why things happen.
Fiapule's most recent scans have come up clear. As the hospital appointments reduce, we are slowly getting back some "normalcy".
"Fiapule will start back at preschool in a few weeks. Life is short we cherish every day with our daughter." Maryanne, Fiapule's mum