As blood dripped profusely from Emily’s nose down the shower drain, Heather Pulido knew there was something sinister going on within her daughter.
Emily has Down syndrome (DS). Despite this, the 15-year-old dodged many potential health bullets associated with it throughout her life.
“She never had the heart problems, never had the vision problems – we’ve managed to avoid so much with her,” Heather notes. Besides managing her thyroid levels from a young age, Emily seemed to be “scooting along just fine.”
One trip to the ER later, and all of that suddenly changed. Emily had been diagnosed with B-cell acute lymphoblastic leukemia (B-ALL).
The Relationship Between Down Syndrome and Leukemia
The connection between DS and leukemia was first discovered in 1930. Research has since established Down syndrome as an increasingly pressing predisposition for leukemia.
Those with DS are 10 to 30 times more likely to receive a blood cancer diagnosis than those without DS. For ALL in particular, children with DS face a more than 20-fold increased risk of developing the condition as opposed to non-DS children.
An Extended Stay
What followed for Emily and the Pulidos was an excruciating 2-month long hospital stay, making the cancer diagnosis that much harder to handle.
Usually, children with DS who are managing various health issues must spend more time interacting with the health system. Since Emily had been relatively healthy before her diagnosis, Heather remembers, “We went from ‘I’ve never been in this hospital’ to ‘I never leave this hospital because we live here!’”
As if that wasn’t enough, the family saw themselves celebrating both Thanksgiving and Christmas in the hospital as Emily received her first rounds of treatment. “To get that kind of diagnosis and it be the holidays – that was a lot.”
No Unique Treatment Protocol
Cancer patients usually need a hospital stay for “induction,” which is the start of chemotherapy treatment. This phase aims to quickly rid the body of as many cancer cells as possible. It lasts about a month for ALL patients, but this process can take much longer for DS patients.
The reason is that DS causes the body to become more sensitive to some chemotherapy treatments. Since there is no alternative protocol specialized for those with DS, the only option is to reduce dosages—the same approach generally used for older adults or people who have other severe health conditions. Coupled with the increased risk for adverse side effects, DS patients tend to require more time under supervision, meaning more time in the hospital overall.
Despite doctors’ explanations, Heather remained frustrated at the lack of targeted treatments.
Although there has been limited research on the topic of alternative regimens or treatments, the scientific and medical community understand the gravity of DS as a risk factor for leukemia.
In 2022, the NIH’s National Cancer Institute hosted the “ImpacT21” conference, bringing together blood cancer academics and clinicians to investigate the problem further.
According to ImpacT21, “children with DS and leukemia often have not been able to have early access to novel therapeutics due to the concern of increased toxicity. More recently, however, inclusion of patients with DS has been considered in the design of clinical trials for new agents.”
How Team Emily Came to Be
For Heather, the amount of research is nowhere near the appropriate level.
Deciding to channel her frustrations positively, she created Team Emily, a 501(c)3 nonprofit to help fund research on specialized treatments “so that when [someone with DS] gets diagnosed, their quality of life can be better than what my daughter has experienced.”
Rallying the Community
Since Emily’s diagnosis, the family has received an outpour of support from the local community. Heather joked that when they left the hospital, “It felt like we needed a bus to get her out of there because people just brought so much stuff for her and us.”
Support also came in the form of home-cooked meals from neighbors, Doordash gift cards from their church, and people taking Heather’s two other children to their activities.
Physical changes aside, even Emily’s diagnosis was a community effort. After some weeks of body aches and lethargy, Heather could sense something wrong but didn’t know what. A post on a Facebook group for moms with DS children provided some possibilities.
“People were saying it could be puberty, it could be her thyroid, all those things. And then one person sent me a text and said, ‘Hey, you need to go get bloodwork done because someone said that this is what happened before they got diagnosed with leukemia.’”
Leukemia hadn’t been on the radar, though. Only a few months before developing symptoms, Emily’s screening labs had come back all clear.
As the family got ready for a Sunday church service the very next day, blood began streaming down Emily’s nose. With so much coming out, Heather had to put Emily in the shower. At that point, “I didn’t even know if we could make it to the ER,” Heather recalls.
Getting Past the Struggles
When asked about personally difficult parts of this process, Heather points to the loss of identity and financial burden she faced when having to quit her job to care for her daughter. “Going from career mom…working 60-hour weeks…to stay-at-home-mom, that was so hard.”
Her advice for people going through something similar is that everyone needs a “team.” Try to have a support system in place.
As for Emily, she is in remission now and has been “a superhero,” Heather remarks. “She just knows she has to do all this stuff to get better.”
Thankfully, Emily has her own passions she draws strength from. Her faith has been a pillar during these times, and a passion for WWE keeps her thoroughly entertained!
“[WWE] must be an extra chromosome thing,” giggles Heather.
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