From the moment of conception, as potential parents, we worry. The list is long, too: what may go wrong over the next nine months or so is a thought that never quite leaves us. By the time the baby is born, we’ve had countless frightening scenarios run through our heads, and are relieved when the baby is born, healthy and fully developed as we’d hoped. But what happens when after that healthy baby is born, an unexpected diagnosis is made?
That’s exactly what happened for a Rhode Island family of four. Troy and Ashley Peck describe their one-year-old daughter, Aspen, as a typical toddler who laughs and smiles — some days. But then there are the other days: the ones when she is dealing with pain, has difficulty eating and drinking, and is lethargic. Aspen was diagnosed with a rare type of leukemia, something she’s been battling for the last 14 months of her young life. With her parents by her side every step of the way, Aspen remains a strong and resilient inspiration for her family. While her story is rare, it provides us with a window into a world many of us hope to never know.
Just before her first birthday, Aspen developed a fever that just wouldn’t go away despite her parents’ and doctors’ best efforts. After ten days, Ashley took Aspen to the emergency room; COVID protocols dictated that only one parent was allowed to go. It was there that Ashley first heard the earth-shattering news — their baby girl had cancer. She called Troy from the hospital, so distraught that she had to hand the phone to the doctor, who delivered the news to Aspen’s father while he sat at home in their living room.
According to the American Cancer Society, 1 out of 3 children diagnosed with cancer are diagnosed with a type of leukemia. Of those, 3 out of 4 children are diagnosed with acute lymphocytic leukemia and all of the other cases children are diagnosed with acute myeloid leukemia (AML). The kind of cancer Aspen is fighting — a subtype of AML called RAM — is extremely rare. According to the Pecks, out of approximately 15,000 cases of pediatric cancer diagnosed each year, there are only about 20 like their daughter’s. The RAM subtype has particularly poor outcomes; it’s aggressive, resistant to chemotherapy, and has a high relapse rate. Because of the nature of Aspen’s disease and its reaction to chemo, Aspen must receive all her treatments on an inpatient basis, and remain hospitalized while she recovers — an average of a month in the hospital for each round of chemotherapy.
When a child is battling leukemia, the body cannot produce healthy, normal red and white blood cells, or platelets; therefore they can’t fight off infections. Patients who are diagnosed with this type of cancer have a 30% higher chance of relapse, according to CNN. In 2018, over 19,520 people were diagnosed with AML and of those patients over 10,670 lost their lives. There isn’t a medicine that can cure this type of cancer. Of course most patients receive chemotherapy, like Aspen, who is on her second round. But the only potential cure for some patients is a bone marrow transplant.
Since the pandemic hit last March, COVID-19 restrictions have made life for families with hospitalized loved ones even more challenging, especially for parents dealing with the health concerns of their child. In most hospitals, there are still restrictions on the number of visitors a patient is allowed; visiting hours are shortened; meals in and out may have been paused by hospital policies, meaning no bedside deliveries for the visitor; repeated COVID-19 tests to ensure visitors are cleared. Support group meetings are prohibited on the premises, and access to comfort rooms — where parents can take a much-needed pause to grab a snack, drink, or just take a breather — is also restricted. What happens when, as a parent, you must decide who will stay home with your other children, since siblings cannot visit and only one person is allowed to visit?
Emotionally, it’s all an uphill battle, almost too much to handle. For Troy and Ashley, the pandemic continues to burden them even further. They told Scary Mommy, “Aspen’s diagnosis amplified everything. We went from feeling trapped at our house to being trapped in a hospital room, but this time only part of our family could be together; our son Elliott cannot visit Aspen in the hospital.” Leading up to the diagnosis, they say, the staff made exceptions, letting the Pecks stay together so they could be together for the final diagnosis. But once they received the diagnosis, they had to split up. “COVID restrictions only allowed one parent to be in the hospital with their child,” they shared. “When we ‘changed shifts’ we had to switch off in the parking lot of the hospital while someone watched Aspen.”
Can you imagine walking this cancer diagnosis journey with COVID raging as a beast in the background too? Troy and Ashley are incredibly brave, and must show up in the ways they need to for their family, especially for their kids.
The Pecks had tough decisions to make along the way as they journeyed through the unknowns of living with a child who has cancer, complicated by the unpredictable path COVID-19 took us all through. The realities they are living through while keeping vigil at Aspen’s bedside are something that no parent ever wants. “The night Aspen received her final diagnosis, Ashley finally went home and Aspen started chemotherapy. That same night, Aspen ended up in the intensive care unit,” they told Scary Mommy. “Again, only one parent can be in the hospital at a time. The stress was real. We knew there was no way any parent should be forced to face this alone and something had to give. Due to the restrictions, some parents were even forced to say goodbye to their child one at a time; they couldn’t all be together.”
Through tireless advocating, the Pecks were able to convince the hospital to change their visitation policy to allow for two parents to be with their child in the hospital — but that didn’t put them at any less risk of contracting COVID-19, the other clear and present danger. So they also lobbied for parents and caregivers of critically ill children to be able to access the vaccine. “Initially, we started with the hospital, but they were only vaccinating staff, not the general public — i.e., the parents who practically live there,” they said. “Since the end of January we have been lobbying through all avenues to prioritize parents/caregivers of critically ill children for vaccine access, to no avail.”
As parents, we know that the fight never ends to be the voice for our kids through it all — even a pandemic that provides a particular challenge for patients and families who find themselves in the hospital for reasons other than being diagnosed with COVID-19.
Thanks to the work of an organization called Be The Match, Aspen received the call just last week that she and her parents had been waiting for; a donor had been found. Be The Match works specifically to help match bone marrow donors to patients with blood cancers like leukemia and lymphoma. The more people who do it, the more chances kids like Aspen have to find the match they so critically need. You sign up on the website, the non-invasive test kit (a cheek swab) arrives at your door, and you drop it back into the mailbox; that’s all it takes to join the registry and potentially save a life.
Along the way, Troy and Ashley never lost hope, and they want other parents to know that they’re not alone. And their best advice? “When you receive a cancer diagnosis, you get a shit cake with sprinkles. Focus on the sprinkles.”
Aspen’s family, like so many other families managing the financial burden of medical bills, have set-up a GoFundMe page to help with their medical expenses. You can learn more about other families facing similar challenges, and how you can help, at Project Stella.
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