Chase’s Miraculous Journey is Music to Our Ears
Her daughter was a little over a year old when Alisha Harper was thrilled to learn she was expecting another baby.
“We’d always wanted our kids to be close in age so while everyone else was a little shocked, our life was going exactly as we planned,” explains Alisha.
Until it didn’t.
When the hemorrhaging began, Alisha thought she was miscarrying, as she had seven years before her daughter was born, when she lost a baby at 14 weeks. Fortunately, an ultrasound revealed this baby was doing just fine and Alisha breathed a sigh of relief. Six weeks later a follow-up sonogram showed her pregnancy was still on track and Alisha was feeling optimistic as she waited to review the results with the covering OB/GYN.
Up until then there had been no indication her baby she was carrying would be any different from the two-year-old daughter she was holding in her arms as the doctor delivered what felt like devastating news: there was a high probably her baby would be born with Down syndrome.
“I just went home and cried. I didn’t know anything about Down syndrome and the words just sounded so scary,” Alisha recalls.
But she didn’t allow her fear to get in the way of making sure she would be ready to welcome her child – a little boy – with love and support.
“Once the shock of it wore off, I sought out experts and focused on learning everything I could, and while there are definitely concerning medical issues related to Down syndrome, I couldn’t wait to meet my son.”
Since children with Down syndrome can be born with a number of health issues, Alisha was connected to a team of specialists at St. Joe’s and arranged to deliver her son at St. Joseph’s Women’s Hospital. Little did she know it would become her lifeline for the next four years.
A full month before his due date, Chase made his appearance into the world and no one was happier to meet him than his mom. “All of the wondering and worrying melted away and all I could see was my beautiful, perfect baby boy. My heart was so full.”
His early arrival and the fact that, like most Down syndrome babies, he was born with a known cardiac issue, meant Chase needed to spend some time in the NICU where he delighted — and surprised – the staff from day one. He was their resident rock star and continued to improve ahead of schedule. All his detected heart defects closed and corrected in utero except one, and while he needed to deal with issues related to sucking, swallowing, and breathing, in a little over a week Chase left the NICU to be with his family.
Their next hurdle was heart surgery at 8 months to correct the single remaining defect. Chase spent two weeks in the cardiac PICU and sailed through his recovery.
“We continued to deal with our share of recurring illnesses, which is not uncommon for kids with Down syndrome, and needed to manage Chase’s tracheomalacia, asthma and ENT issues.
But in general, life was pretty normal after that,” explains Alisha.
Chase’s Down syndrome sort of settled into the background, simply a part of who he was, like the color of his eyes or his infectious smile.
“When I think back to how much I worried about his Down syndrome before he was born, I wish I could have told myself what a gift it turned out to be. Everywhere Chase goes people gravitate toward him. He’s such a happy joyful kid and people respond to that.”
In the fall of 2020, Chase was having major issues with his tonsils and he had to get them removed. As with everything else Chase was back to his old energetic self in no time. Alisha likes to say, “I have full 13-hour kids. They never nap. They start each day at 70mph and don’t reach zero until bedtime.”
So, when Chase started school this past January and his teachers commented on his lack of energy and preference to be left alone, Alisa knew something wasn’t right. A few weeks later, after a rash prompted further testing, her fears were confirmed. Chase had leukemia.
“It was a gut punch for sure,” says Alisa, the emotion evident in her voice. “He’d been through so much, our family had been through so much. He was finally at the peak of his health and development and then this.”
So just as she did before, Alisha armed herself with information. But what really got her through was Chase’s team of doctors at St. Joe’s.
“We were connected to an amazing group of oncologists – but Chase’s other doctors, his cardiology team, his pulmonary team, stay so involved in his care, and ours. I can’t even begin to explain how much that meant, especially when things unexpectedly took a turn for the worst.”
Although kids with Down syndrome do really well beating this type of leukemia, Chase began to experience complications with his treatment and for a while, his health was spiraling out of control.
“There were so many things going on that I can’t even begin to list them. None of them were good,” explains Alisha. “His was a very complicated case and as his health continued to decline. But in my heart, I knew he was exactly where he was supposed to be. That’s how much faith I had in his doctors at St. Joe’s. I trusted them completely with my son’s life. And I knew that Chase just took a little longer than everyone else to do things. That’s just Chase.”
“It took a little time and a lot of patience but eventually, they brought him back to us and he’s doing so much better now,” shares Alisha. “I honestly could not have imagined going through that experience anyplace else or with any other medical team. Chase’s doctors truly know my son, not just medically but personally, and are available to us 24/7. Having them in our corner makes a world of difference.”
For three months, St. Joe’s was Chase’s home away from home, not the best place for anyone to be for that long, but even more difficult for a child. However, early on Chase discovered a service that brightened his days, Music Therapy. This service is funded by the St. Joseph’s Children’s Hospital Foundation, our Child Life Team connects with each child personally, finding out what they love and what makes them smile. For Chase, that was clearly music.
“Even though he’s dealing with so many medical issues, at the end of the day Chase is just a regular little boy who wants to do what regular little boys do. While I knew Chase was receiving the very best medical care, I worried about how this was all impacting him emotionally.
Music therapy was the highlight of his days, and his joy as he “rocked out” during sessions was contagious. I can’t begin to thank the Child Life Team for lifting his spirits – and ours – during a pretty dark time for our family.”
As she watches her son face down every obstacle thrown his way, Alisha is grateful for the continued support of St. Joe’s and can’t help but marvel at Chase’s resilience. While he still has a long road ahead with a couple of years of chemo in his future, he’s currently on a trial medication that has already been remarkably beneficial to his treatment. And he’s back to all his therapies – including his beloved music sessions – making progress every single day.
“Chase has been a rock star since the day he was born, and I know with the help of the amazing team here at St. Joe’s his future will be as bright as his smile.”