Meet the Orr Family
From Victoria, BC
“I didn’t expect it to be so comfortable,” says mom Amanda Orr about Ronald McDonald House BC & Yukon. “I didn’t expect it to be a home.”
Amanda and her young family from Victoria, BC, already had lots of experience with travelling back and forth to BC Children’s Hospital. Their youngest son, Kade, needs to see specialists regularly at the metabolic clinic, and they had gotten used to staying at AirBnBs for their short stays. But, when their 4-year-old son Mack was diagnosed with Fanconi anemia and they learned he would need a bone marrow transplant in Vancouver, they needed to find another option, fast.
At first, Amanda shared, they didn’t know what to expect. They had heard good things about Ronald McDonald House from other parents, but they were nervous. Would they feel comfortable in such a big place, with other families? How would they be able to take care of Kade’s dietary needs at the same time? Would they be able to get enough sleep?
But, right away, staff at RMH BC worked to accommodate them, giving them extra freezer space and making them feel welcome. And, much to the relief of Amanda and her husband Riley, the family has adjusted easily to their comfortable room. “We’ve been pleasantly surprised at how it’s worked for our family. It was basically just like being at Home,” says Amanda.
After Mac had his bone marrow transplant, he spent 38 days in the hospital. Now, he is able to stay with his family at the House, as they all wait until 100 days have passed and they are cleared to go home.
It was during Mac’s stay in the hospital that he was first drawn to music therapy. “He had a keyboard in his room and a guitar,” remembers Amanda. “The whole time, he would strum and tinker away while watching TV. It calmed him, and gave him something to do to keep him occupied.”
When Mac was able to come to the House, Amanda and Riley knew that music therapy was something they needed to continue for their boys, so they signed up for one-on-one sessions.
For Mac and Kade, it was an activity they could enjoy together as siblings. During Mac’s stay at the hospital, they hadn’t spent much time together, but in music therapy they enjoy experimenting with different instruments, trying out all kinds of new sounds, and singing songs with Erin, RMH BC’s music therapist. For 3 and 4 year-olds, it’s the perfect activity – unstructured, free, and with lots of noise! For Kade, it’s all about banging on drums, while Mac prefers the keyboard. It’s something they look forward to – and something different to break up the day while they need to stay close to the hospital.
For Amanda and Riley, the sessions are also a welcome break for mom and dad. “We’re not musical at all,” says Amanda, “But it’s great to see the boys trying something new and keeping busy. We don’t have to be ‘on.’ We can just enjoy it and don’t have to be the ones moving it forward.” They also appreciate having a safe space for the boys to interact with another person, and have this growth in a time when we’re all so isolated in our own bubbles.
They know that music is now going to be a part of their boys’ lives, even when they return home – Mac wants a red guitar for this birthday – and he says it has to be full size, not kids’ size!
When not taking part in the music program at the House, the Orrs love to play outside, riding bikes, playing in the snakes and ladders playground, and Mac’s favourite, baseball. “He’s getting a pretty good swing!” laughs Amanda.
For Amanda and Riley, the community of support from other families has also been priceless. They were lucky to meet some other families going through bone marrow transplants, who were about a month ahead of them in the process. “We got to see where it was going, and share this experience of what the kids go through, the different stages and things we found challenging, and they could give us tips.”
Looking back on her family’s experience at the House, Amanda has nothing but gratitude. “It’s such an amazing resource,” she says. “I’m so happy that families have it. We’ve met families who have spent almost a year here. It’s so crazy to take a whole year of your life, to do something you don’t want to be doing, something that was forced into your life in a negative way. I couldn’t imagine not having the House, and all the challenges that we would have if it wasn’t here.”