FITCHBURG — Michelle Oywech never imagined the health issues her son started having in December would lead to where they are today.
What began as hives they initially thought were spider bites resulted in cutting things out of 15-year-old Asa’s diet and changing soap and laundry detergent, but nothing seemed to help so they took him to their pediatrician.
“He was certain that it was chronic hives but put in a referral to an allergist to be certain,” his mother recalled. “In between seeing our pediatrician and the allergist Asa had developed a sore throat with a fever that turned out to be strep B. The fever broke and the sore throat subsided in 24 hours, so we thought nothing of it.”
The allergist had a complete blood count done. While the Fitchburg High sophomore’s white blood count was low, she and the pediatrician thought it was likely due to the strep infection and the two physicians disagreed on rechecking his CBC in a few weeks.
Asa opted not to have another blood draw done when given the choice, but the hives persisted from February on and then “seemed to be getting less frequent and less severe around mid-late May,” Michelle said.
In May, COVID-19 hit their whole household including Asa’s three younger siblings, but Michelle said his symptoms “were not worse than the rest of us.” The following month and into July he had another sore throat that this time “presented with slight bleeding.”
“We were told by the doctor that saw him that it could happen with irritation in the throat,” Michelle said. “He was negative for all types of strep this time.”
A week or so later the medical mystery deepened when he started experiencing wrist pain, to the point of feeling “terrible pain like electric shocks in his wrist,” his mom said. “He was playing his keyboard, he’s teaching himself how to play classical music on it. My husband and I thought it was possibly a pinched nerve from overuse, so we told him to give the keyboard, his phone, and lifting weights a rest for a bit.”
When the pain shifted to his fingers Michelle tried doing some hand stretches with him. Not only did it not help, but the pain worsened. His foot also started to hurt.
That was on Wednesday, Aug. 3, and that Friday she took Asa to urgent care in Worcester. She explained what had been happening with the hives, the strep, the sore throat with some slight bleeding, and requested a CBC, testing for rheumatoid arthritis, and an x-ray of his wrists.
The next day she received a call that would change their lives forever.
The doctor that had seen Asa told Michelle that she needed to bring her son to the UMass Memorial Medical Center emergency department right away and that “his blood counts are critically low.” He was admitted to the hospital that night and just a few days later some shocking news was delivered.
“Nothing, nothing at all, can prepare you to actually hear the words said to your 15-year-old ‘We’re so sorry to tell you, your diagnosis is cancer,’” Michelle said. “I had a pretty good idea we had a not great diagnosis coming as every test for an autoimmune disease came up negative. When they let us know that he needed a bone marrow biopsy, I knew, I knew it wasn’t going to be good at all.”
Asa was diagnosed with acute myeloid leukemia, or AML, a type of cancer that starts in the blood-forming cells of the bone marrow that is uncommon in his age group.
“My initial reaction was as you would expect for anyone who’s world was inverted with such news,” Asa said. “I had to quickly reckon with all the possible outcomes, even death. When we learned that it’s not the deadly form, that was a huge relief.”
Michelle said she remembers hoping that if it was leukemia “it would be a very easily treatable kind, but nope, he was diagnosed with AML which is rare in children. He also has a subtype that puts him in high risk for relapse, so he has to have a stem cell transplant.”
While she did her “best to remain strong for Asa” leading up to the diagnosis, they all had a hunch when the attending physician brought in two boxes of tissues to them.
Soon after he, a nurse, a resident and a social worker came in the hospital room.
“I held my breath, hoping that would somehow stop the tears,” Michelle said. “It didn’t, of course. My husband had to step out right after the diagnosis was stated. Asa sat stoically in his hospital bed, let a couple tears fall, as he absorbed news that’s difficult for adults to absorb, let alone a 15-year-old.”
She said she went home that night while her husband stayed in the hospital with her son.
“I cried, I yelled, I asked the universe ‘why, why my son?’ I completely fell apart and then picked up the pieces and we’ve taken this head-on ever since. It’s the only thing can you do.”
Asa will be in the hospital for some months to come receiving cancer treatment, including taking part in a clinical trial he decided he wanted to be a part of that is currently in its third phase for his type of leukemia.
“He was randomly selected to receive the type of chemo being tested,” his mother said of the trial. “The hope, and so far, they’ve had great results, is that it’s just as effective as the standard treatment, which for AML is very toxic to the body while protecting the body from the toxicity of the chemo. That’s what we were hoping he would be getting.”
She said when Asa was asked if he would be comfortable with the idea of a clinical trial he said, “I think it’s important for me to take part in it. Even if I don’t benefit from the treatments, the research and information gained could help the next kid getting this diagnosis.”
He had a central line put in on Aug. 11 that enables him to receive the treatments and on Aug. 15 his chemotherapy induction 1 began. While he feels fortunate to be able to take part in the clinical trial, that doesn’t mean it hasn’t been a rough road for Asa.
“The treatment phase started with swift urgency because of the aggressive nature of any form of acute blood cancer, but AML is especially aggressive,” he said. “I was told everyone has bad days but for a brief moment I was naïve to think that I would be different because I wasn’t feeling all that bad — until I was.”
Michelle said the Childhood Oncology Group team of medical care providers at UMass “has been incredible.”
“This is a group of the top childhood oncologists internationally,” she said. “They network together to help a child facing cancer to have the best possible outcome.”
Asa, a self-proclaimed political nerd, tries to occupy his thoughts with other things. He hopes of one day meeting Andrea Campbell.
“He was having political discussions with my grandfather at the age of four,” his mother said. “His goal in life is to attend a top college and his top picks are Harvard, Cambridge or Oxford. His dream is to be a constitutional/civil rights lawyer.”
Despite a “battle raging inside him,” his mother said Asa is driven when it comes to his education.
“His biggest concern was still getting to have his Honors Academy level classes and the (advanced placement) and pre-AP classes he had signed up for,” she said.
Michelle had a meeting with the sophomore and Honors Academy administration and a couple of social workers to discuss Asa’s education and said “it went very well.”
“They are going to do everything they can, including being super flexible to be able to accommodate anything that might happen that would make it more difficult for him to complete work, to make sure that Asa has access to the Honors Academy classes including the AP and pre-AP classes. They are thrilled that Asa is being as engaged as he is with his education.”
“Fitchburg High School administration have been amazing,” she continued. “They are going to allow Asa to continue with the Honors Academy and all his AP and Pre-AP classes, remotely, and provide a tutor. He was so relieved when I told him. Imagine, a teen going through one of the scariest things you could ever go through, and his concern is getting the level of education he worked so hard to have access to. He never ceases to amaze me.”
One aspect of his high school experience Asa is struggling with is not being able to do track and field.
“He’s frustrated that he’s losing the muscle mass he built up doing track and field his freshman year and hates that he’ll miss out on track and field this year,” Michelle said.
She said that in true Asa fashion, ever since being diagnosed he has “wanted to protect his younger siblings from the scary, but quickly realized that wasn’t really possible.”
“So, he eventually reconciled with himself that his siblings need to know,” Michelle said of her brood, her “pride and joy.”
“It’s been difficult to balance home life and hospital life. At home my thoughts are on Asa. At the hospital my thoughts are on my three kids hoping they’re doing ok. I think, I hope, that as we grow more accustomed to our new, temporary, normal it becomes easier.”
She said that looking back now, she sees that “there could have been a few things that pointed to him having AML. But in the moment, they were just things that sometimes happen,” and of course there’s no way they could have known.
Michelle remembered a conversation they had when he kept getting hives and that “in typical teen fashion he was like, ‘Ohhh, is that was those are? I’ve been getting them since December but not usually this many.’”
“It’s so crazy that what we thought was simply an overuse injury or at the very worst pediatric rheumatoid arthritis ended up rocking our world in an unimaginable way,” she said. “We are going through the unimaginable and having the support system that we do has made such a world of difference.”
That village enveloping them includes family, friends, the greater community and even strangers. A GoFundMe set up for the family to date has netted $600 in donations so far to help cover the high costs associated with Asa’s treatment. There’s also a Meal Train people can sign up for to help nourish the family.
“The outpouring of support has been such a blessing and overwhelming at times,” Asa said. “From the start of all of this I craved normalcy, so it was difficult for me to receive special treatment, special gifts and attention because this isn’t a part of my normal everyday life. Organizations such as Why Me, Sherry’s House, Little Wishes, Make a Wish, and Dec My Room have been monumental support for my family and I as well as having the nursing staff and my team of oncologists.”
Michelle said her son is happy to share his story not only because it could help their “GoFundMe cause reach a bigger audience,” but because “it will bring more awareness to childhood AML during Childhood Cancer Awareness month.”
Asa said he has never asked the question “Why me?”
“I have been glad that it was me instead of one of my younger siblings. I feel that this is my path to tread, and there is much to learn from it. When this is over, I will be able to quote the words of a friend within the hospital who said in card, ‘Cancer did not bring me to my knees, it lifted me up on my feet. Together we are tougher than cancer,’” he said.
He’s been battling an infection recently and on a particularly bad day Asa “was shaking and shivering uncontrollably as the fever was coming on,” Michelle said. “He was scared, and in a rare moment for a teenager, let me comfort him.”
She said a rainbow began to appear outside his hospital window “right as he was going through the worst of it and as his body stopped shaking, the rainbow kept getting brighter and brighter. It was incredible.”
“It’s been a long road and we have longer still to go but we’re holding on,” Michelle said of those small pockets of hope. “Asa has taken in all the information and has come to terms with the fact that he has cancer. We know it’s a difficult one to treat but not impossible and that is what we’re holding on to. Asa amazes me every day with how well he’s coping with it. I’ve said since he was a little wide-eyed boy that he was an old soul in a young body.”