Sarah shares their story
We’re a family of four me and Ash, our six-year-old son Tyson, and our four-year-old daughter Isla. (6 if you include our new soft friends, Tiger Boy and Cotton Candy, from a trip to Auckland Zoo while staying in Auckland for treatment.) Back home in Hamilton, I work as a learning assistant at a primary school, and Ash works full-time at the meat works.
Before all of this happened, our weekends were pretty normal family weekends. We love spending time together, seeing family and friends, taking the kids out and just doing things as a family. Since Tyson got sick, I think we’ve realised even more how special those really normal, everyday moments are.
What are Tyson and Isla like?
Tyson is such a funny, loving kid. He loves being around people and absolutely loves school and learning new things, basketball and soccer are his current obsession and will play at any chance he gets. He’s been through so much this year, but he’s still just Tyson. He wants to laugh, play and have fun.
Isla is very happy, fun, social four year old and has loved making friends at the House. She is currently the UNO champion in the family.
They’re really close, and watching them go through this together has been pretty special. Isla might not completely understand everything Tyson has been through, but she knows her brother has been sick and she’s been right there alongside him.
Tyson’s diagnosis
It all started when Tyson had a seizure in his sleep. He’d never had anything like that before, so it was terrifying. After a couple of these seizures there were scans and more tests, and eventually we were told there was a tumour in his brain.
Everything happened so quickly. One minute we were living our normal life in Hamilton, and the next we were hearing words like brain tumour, biopsy, ependymoma and radiation.
After his biopsy, we found out Tyson had an ependymoma. Because of where the tumour is, surgery to remove it wasn’t considered safe, so radiation became a really important part of his treatment.
What was going through your mind?
At the beginning, I think it was mostly fear. You hear that your six-year-old has a brain tumour and your mind immediately goes to the worst places.
There were so many unknowns. We wanted answers straight away, but we quickly learned that with something like this you don’t always get every answer at once. Sometimes you just have to focus on the next appointment, the next scan or the next day.
How has it affected everyday life?
It completely changed our lives for a while. We had to leave Hamilton and come to Auckland for Tyson’s treatment. He had radiation Monday to Friday for seven weeks.
There have been hospital visits, medications, appointments, tiredness and worrying about symptoms that we probably wouldn’t have thought twice about before.
One of the hardest parts is trying to make sure Isla still gets to be a four-year-old and Tyson still gets to be a six-year-old, while at the same time dealing with something so serious.
Has it changed your perspective?
Definitely. I think we appreciate the ordinary things so much more now.
Before this, you’re always thinking about what’s next work, buying a house, school, plans for the future. Then something like this happens and suddenly you would give anything just to have a nom day at home with your family.
It’s taught us to appreciate those little moments and not take them for granted.
It has also shown us how many genuinely kind people there are. Our family, friends, schools, medical teams and even people we barely know have supported Tyson and our family. That has been pretty overwhelming in the best possible way.
Staying at Ronald McDonald House
What did staying at the House mean to you?
Ronald McDonald House gave us somewhere that felt like home when we couldn’t be at home. Having to bring your child to another city for treatment is already overwhelming. If we’d also had to worry about finding and paying for accommodation for seven weeks, being away from each other, cooking every meal and all of those everyday things, it would have added so much stress. Instead, we could concentrate on Tyson and being together as a family.
What does a typical treatment day look like?
Our days revolved around Tyson’s radiation appointments. Appointments are in the mornings, we all wake up and walk to radiation together as a whānau to make sure Tyson knows we are in this together. Then we’d come back to the House and try to make the rest of the day feel as normal as possible. We play games, hanging out together or Isla trying to beat everyone at UNO. There were still lots of laughs in amongst everything else.
What have the kids enjoyed?
Isla absolutely loved making friends. For her, the House wasn’t just somewhere we had to stay because her brother was sick it became this place full of other kids to play with. Tyson has also made some awesome friends that we will remember forever. Being together as a family everyday for seven weeks was definitely a highlight. The House gave them opportunities to just be kids during a time when so much of our life was centred around hospitals and treatment.
What have you and Ash appreciated most?
Being able to stay together was probably the biggest thing.
We’ve also been really grateful that family and friends could come and see us, and for the connections we’ve made with other families. There’s an understanding between families at the House that is hard to explain because everyone is there for their own reason, but everyone understands what it’s like to have a sick child.
There have been some really hard days, but there have also been some really special memories made there. I don’t think we’ll ever forget the people we’ve met or what the House did for our family.
A message for Ronald McDonald House supporters
What would you like supporters to know about their donations?
I don’t think you fully understand the impact of Ronald McDonald House until you’re a family who suddenly needs it.
Your donations aren’t just paying for a room. You’re giving families somewhere safe to come back to after a difficult day at hospital. You’re helping parents stay close to their child. You’re helping siblings stay together. You’re giving families meals, support and one less thing to worry about during probably one of the hardest times of their lives.
We never expected to be the family that needed Ronald McDonald House, but this year we were.
What would you say directly to supporters?
Thank you. You might never meet Tyson or our family, but you have been part of his journey.
Because of your support, we were able to be together while our little boy went through seven weeks of radiation away from home. You gave us a home when we couldn’t be in ours, and that’s something our family will never forget
What are you hoping for most?
Honestly, we’re hoping for boring. We want normal family life again.
We want to go home, watch Isla start school, see Tyson settle into his next chapter at school, have weekends together and make plans that don’t revolve around hospitals and treatment.
Our biggest hope is for Tyson to be healthy and for his treatment to have done exactly what we needed it to do. We know there will still be scans, appointments and some uncertainty ahead, but we’re trying not to let that take away from the life that’s happening right now.
After everything this year has taught us, I think our biggest goal is just to enjoy our kids, make memories and appreciate being together.
We’re looking forward to seeing what life looks like beyond treatment and hopefully having lots and lots of ordinary days together.