By Andrea Rose
Special to the Record
Looking at three-year-old Aaron Hong, you wouldn’t think that only six short months ago he was reaching the end of an aggressive chemotherapy treatment to battle a leukemia diagnosis he was given in the winter of 2021.
It was early in the new year that Aaron’s routine blood work started showing a decline in his platelet count. Otherwise a healthy, energetic toddler, Aaron didn’t come across as being unwell, but concerns grew as symptoms like fatigue and bruising began appearing and Aaron’s platelet count continued declining.
The family was referred to BC Children’s Hospital in Vancouver to investigate his symptoms further. The doctor who saw Aaron commented on how healthy Aaron appeared, lending some optimism to the family who was remaining hopeful, although anxious for answers. But the phone call they received shortly after leaving the hospital was not the news they were hoping for.
Shortly after their appointment, Aaron’s parents, Michelle and Chenyu, received a phone call from the doctor, “I usually don’t like to tell people this over the phone, but the blood results look like he has leukemia,” Michelle recalled him saying, “he needs to be admitted right away.”
“It felt like a death sentence,” said Michelle, describing how it felt during the first moments they learned of Aaron’s diagnosis, admitting she really didn’t know much about leukemia then.
“I always knew in the back of my mind that low blood platelets are associated with possible leukemia, but I think it was just so early it was hard for them to see,” she explained. “I asked how long we have to be in hospital for, he said, ‘he needs to be inpatient full-time for six months.’ I lost it. I really couldn’t imagine doing this for six months.”
No family can imagine or prepare themselves for this kind of news, wrought with uncertainty and difficult decisions. The family had left behind a busy life, along with their older son Theo, who stayed behind in the care of his grandparents. There would be no returning home for a while; Vancouver would become their home-away-from-home and there was no choice but to figure out a path forward.
Friends from the community suggested the family reach out to YANA for support, and soon after a social worker connected Michelle and Chenyu with the organization that would walk alongside them and support them every step of the way.
Aaron’s prognosis was really good, and after the second and most intense cycle Aaron cruised through his treatment. Aaron has Down syndrome, and Michelle pointed out that while it isn’t uncommon for children with Down syndrome to have greater challenges with their immune system, Aaron continued to overcome obstacles.
“Even throughout the treatment, I still thought of him as a well child, although he had this serious disease,” said Michelle, who describes Aaron’s nature as being strong and resilient, even learning to walk for the first time in the halls of BC Children’s Hospital with the help of his parents and an IV pole.
“He just needs mama and papa,” Michelle said. “He was so little so he didn’t really mind being in the hospital as much as we did. All he cared was that we were there with him, we were his most important people.”
Aaron had his mama and papa there with him by his side, every step of the way, thanks to their community, family and YANA who helped make that possible. Along with monthly funding, YANA also provided the family with one of their furnished, downtown apartments within walking distance of BC Children’s Hospital.
“The apartment was exactly what we needed,” says Michelle. “More than what we needed.”
Michelle and Chenyu took turns being by Aaron’s side and staying in the apartment over the seven months they spent in Vancouver. The apartment became a simple, safe sanctuary where they could recharge, cook, and come together as a family when Aaron was eventually given the green light for short visits. The short visits eventually led to longer visits back to the Valley until the family was finally able to return home last September.
Aaron and his family continue making trips to Vancouver as part of his ongoing care, and YANA continues to provide funding and support for every trip, and the family has no doubt about how special an organization it is to continue to be there every step of the way.
“It’s above and beyond. People were so jealous hearing about (the support) we have… a lot of people are from out of town. We haven’t really talked to anyone else who’s had this,” says Michelle.
Aaron and his family needed to stay in Vancouver for seven long months. Thanks to the incredible support of a community that deeply cares, YANA is able to say ‘yes’ to families like Aaron’s and countless others. YANA is able to let them know that however long they need to be away in order to be by their child’s side, no matter what, “You Are Not Alone.”
YANA (You Are Not Alone) is a community organization offering help to Comox Valley families who need to travel for medical treatment for a child or for a pregnant mother.
For more information, visit https://www.yanacomoxvalley.com
Andrea Rose is the family services co-ordinator at YANA