I remember the day vividly. I don’t think I’ll ever forget it.
Mason was only 18 months old. I took him to the doctors early in the morning, he didn’t have any symptoms but my mother’s instinct and a gut feeling told me something was wrong. It seemed that there was something wrong with his vision. He had bumped into the couch with his tummy first, then his hands. I remember thinking to myself “please don’t be a tumor” but I told myself off, thinking I was just being paranoid and stupid.
The doctors referred us straight to Waikato Hospital, with our family on standby. Tests were undertaken, but they gave us no answers. Meanwhile with each hour, Masons eyesight was getting worse, his pupils dilating more and more. By 5pm CT results showed he had something across the back of his eyes. Everything the doctor was saying was blurred, but I noticed the ambulance officers and gurney waiting to take Mason and myself to Starship.
Nothing you can prepare for
Mason was diagnosed with High Risk Neuroblastoma, a very rare and aggressive form of cancer. Mason was Level 4A with 5 being the worst. The tumor in his head was inoperable. Within days he had started emergency radiotherapy and chemotherapy.
At this stage we still didn’t realize the magnitude of the situation and what our baby boy and our family were about to go through. No one can prepare you for it.
Mason had a tumor in his stomach, on his adrenal gland and secondary ones across his optic nerves in his head. Patches around his wrists and shin bones were also mentioned. We would stay in Starship for 12 weeks and it would become our second home over the next 18-24 months. When I first saw the cot set up in the hospital room and chemo going through my baby, I felt like I had failed as a Mum. I lost all confidence; I blamed myself.
A long, hard journey
Mason has endured rounds of chemotherapy, radiotherapy, a cell harvest, nuclear medication and scans, MIBG scans, surgery to remove tumor in his tummy, countless MRIs and CTs, blood tests, along with a tandem bone marrow transplant and immune therapy. Each course of treatment had some sort of side effects, hair loss, mucositis, vomiting, loss of appetite, and being irritable were the norm. Even though we knew the risks we had to fight for him.
One of the biggest things I remember feeling and thinking was how many family’s cancer effected. It doesn’t discriminate. The ward was full, from babies to teens, and the clinic was full with past patients. We met some wonderful families, really lovely people, some we are still close too. It’s like we’ve been friends for 30 years. We’ve been through things that others can’t understand, we’ve seen each other at our worst. Unfortunately, some lost their fight, parents lost their kids, our neighbor on the ward for so long had gone, yet another would replace them the very next day. The guilt is very real. How come my son is here yet they lost theirs? When they say it’s an emotional roller coaster, it is, you just can’t get off it.
Our new normal
I pined for our girls Chloe and Georgia, they stayed with family and friends – we wanted to try and keep things as normal as possible for them, to shield them. So many times, I’d cry either leaving Auckland for Mason or leaving home and our girls behind. They struggled a little but looking back it was the right decision; the girls do well in school and have so much empathy for others. They too have met some fellow siblings and been on camps etc.
Slowly over time, things became our new normal, all the hospital appointments, procedures etc. Mason was allowed to come home in between rounds. He had no immunity which meant no visitors, therefore friends dropped off. The district nurse became one of our favorite visitors, along with Collette from Child Cancer who bought Mason his beads of courage for all of the hard work he had done.
What life looks like for us now
Mason is now 6, he turns 7 very soon. He rattles off what he wants for his birthday. A typical little boy, a dirt bike is on the top of his list. He is actually due to go to Starship, to visit his Oncologist and have an MRI, right on his birthday. This is the longest stint in between appointments and I’d be lying if I said I wasn’t getting anxious.
As a result of chemo, Mason is hearing impaired. He is also blind in his right eye and impaired in his left. We are unsure if his eyes will get worse, but at the moment we are getting his fingers ready for braille. He also uses a cane.
We take everything day by day, he attends school with his sisters, has a teacher aide and a vision specialist that sees him also. We have always let Mason try things, to learn as much as he can. I don’t want him to catch my fear. In his little world he doesn’t think he is different from his friends. He does know he is a lot smaller than his friends and questions why he is small and when will he grow. He will need to have growth hormone at some stage.
There are still so many uncertainties and things Mason and our family will need to overcome. I have to think about the here and now, and the fact that Mason is here and how far he and we have all come.
I am so grateful to Cynthia from True Colours, she has really helped me make sense of where we’re at. I feel at ease with her, and she just lets me get everything off my chest. She is so patient and kind, and really understands. She helps me process the thoughts and feelings I get. I am grateful to her and True Colors for helping me in the aftermath. After running on adrenalin for so long, she is helping me to become the Mum I thought I had lost before or always have been, but accepting that it did happen to me and my son and family and helping us get through it.
I love getting creative, making candles and fresh flowers, I have a casual job that I get to chat to people but mostly being available for any of the kids if they need me, I am definitely that mum at school putting my hand up to help or volunteer. I guess I will until I feel like Mason doesn’t need me and I’ve made up for lost time with the girls. It doesn’t really go away, the “what if” is still very real and the thought of relapse is unbearable. Some days I can chat about it with people, other days I feel like my throat closes. I’m an active member of the CCF committee as I want to give back for all the support we got.
Even though our journey continues someone else’s has just started.