Even when you understand your child’s diagnosis, nothing can prepare you for just how challenging their treatment journey can be. Especially when their journey is affected by a global pandemic.
Keri Reid and Jason Lee found out in mid-2018 that they were expecting their fourth child. They were already proud parents to daughters Latisha (21) and Trinity (14), and son Nathan (20).
Keri already knew that she was a carrier for a mutated gene – the RB1 genetic mutation – which would predispose her unborn child to genetic cancers if this was passed on. She knew what this could be like, as she supported her firstborn daughter through this journey when she was born 20 years ago.
At the beginning of her second trimester, Keri had an amniocentesis procedure that would determine whether or not the RB1 genetic mutation had been passed on.
The results came back showing that it had.
At 33 weeks, Keri and Jason travelled from their home in Feilding to Wellington Hospital for an ultrasound test that would show any physical signs that their baby would face related complications.
“They zoomed in on his eyes,” Keri tells me. “There was a mass that they could see. So, they contacted Auckland Hospital and Auckland decided that we needed to do an inducement.”
5 weeks later, when it was safe to do so, Keri and Jason returned to Wellington Hospital to induce the labour of little baby Jaxon. The labour was “perfect”, according to Keri, which was at least some small comfort before they would embark on their 18-month treatment journey.
Once he had been assessed by the paediatric eye specialist in Wellington Hospital’s NICU, Jaxon and his parents were flown directly to the National Children’s Hospital for immediate treatment.
Jaxon was diagnosed with retinoblastoma, a type of cancer which affects the back lining of the eyeball. From only 5 days old, Jaxon began an intensive treatment of chemotherapy and laser eye surgeries to attempt to remove the tumours.
For the first six months of baby Jaxon’s life, Jason and Keri would live at Ronald McDonald House Auckland.
“It was quite scary actually,” Keri says, recalling her first visit to Ronald McDonald House Auckland. “Leaving your home and everything you know. We didn’t know much about Ronald McDonald House at all.”
As soon as Keri and Jason walked into the front foyer, their worries were eased.
“The staff were amazing,” Keri says. “You walk in there and they are with you, they were supportive. It’s a warm environment. They made you feel welcome and put your mind at ease.”
Six months is an incredibly long time when you are away from your home, friends and family. During Jaxon’s treatment, Keri and Jason’s other children stayed at home – which made things quite lonely for them at times.
Thankfully, one of the ways RMHC New Zealand helps families the most is by providing them with the support network they need during tough times.
“It’s massive,” says Keri. “They become a part of your family. A ‘welcome home’ they say. We lived there for six months – it is our home.”
“It puts you in touch with the other families too. You know, who are in the same scenario. I don’t know what we would have done without them.”
Now, in 2020, Keri, Jason and Jaxon still make monthly trips to Ronald McDonald House Auckland Domain for Jaxon’s laser eye surgeries. This was especially challenging from them during the COVID-19 crisis, but there was a very special moment amongst the stress of lockdown.
Having been together for 20 years, Keri and Jason got engaged! And they wanted to include RMHC New Zealand in a very special way.
“We’re getting married in November,” Keri tells me, “would you believe it, at Ronald McDonald House Retreat in Rotorua.”
When asked what made them want to include RMHC New Zealand as part of their wedding, Keri said, “It’s the love, it’s the happiness and the support – it’s our family.”
We are thrilled to be a part of this incredible journey with Keri and Jason. And as baby Jaxon continues to receive his treatment, your support means that the Lee family will always have a ‘home-away-from-home’ at Ronald McDonald House.
Keri says, “Without you, it just wouldn’t be able to happen. We wouldn’t have been able to be together with other people and get through the tough times we got through. Just a huge thank you.”
If you'd like to help more families like the Lees, you can make a kind donation here.