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Up until the day of his B-cell acute lymphoblastic leukemia (B-ALL) diagnosis, Declan was your typical preschooler, hungry for activities. He was in swim lessons, ninja classes, and ran around the playground like it was his job. He would do anything to keep his body moving. That is, until the day he couldn’t: he was suddenly too tired to run around at recess, and that’s when Declan’s mom, Elizabeth, sensed something was really wrong with her son.
ASK Mom Elizabeth remembers the early signs of her son's diagnosis, but didn’t think too much of them at the time. "He had broken his leg in May and then had a tonsillectomy in August, so some of the signs that we were actually noticing, we excused away, because when he was like, 'oh, my legs hurt,' we [thought] maybe he's just, you know, growing and getting adjusted to being out of a cast. And when he was looking tired, we [thought], 'Okay, well, it takes a while to get used to, you know, life and sleep after tonsillectomy. Maybe that's it…' But the one that really set us over the edge [was when Declan] came home from preschool on a Wednesday and said, 'Mama, I was just too tired to run at school. So I just sat and chatted with my teacher instead.' We were like, 'Oh, that's not our child.”
Life changed quickly for Declan and his family the moment they received his lab results. Elizabeth recalls the life-changing news, "It wasn't gradual, but it was definitely instantaneous like, 'Okay, that's weird that he's not running around.' Declan was four when he was [officially diagnosed with B-cell ALL]. It was just before Thanksgiving [2023]."
Still, the family reflects on the timing of the diagnosis as a miracle. "He was diagnosed that [Friday] morning by Dr. Edwards. And then, he had his bone marrow biopsy later that day. We had to wait until Sunday for his port to get placed, and then he started chemo on Monday. So, [it was] less than a week between us noticing something [was off] and the chemo actually starting, which is another miracle. A lot of other cancer moms have told me it took them weeks and multiple ER visits to get a diagnosis," explained Elizabeth.
The first five or six rounds of chemotherapy were challenging. "It was really intense. Life just sort of stopped. We were carefree and easy one day, and then the next, we had a kid with cancer." Elizabeth said. She had to leave her job to care for him and his two-year-old sister full-time, while Declan's father and older brother continued with work and middle school. But without Elizabeth’s income, finances got tight. ASK was able to help them stay afloat by helping with certain monthly expenses. Without that aide, Elizabeth says they might not have been able to stay in their home. Facing housing insecurity on top of a cancer diagnosis isn’t something anyone should have to deal with. Thanks to ASK, it wasn’t something they needed to worry about.
Declan also had to stop attending preschool due to his diagnosis. ASK Education Support Navigator, Amy Fender made sure to get Declan resources and activities to help him overcome any gaps from his missed time in school.
Amy is one of six Navigators stationed at each of Virginia's five pediatric cancer treatment centers. These dedicated professionals bridge the gap between hospital inpatient stays and the patients' schools, helping them stay on grade level and receive the necessary accommodations to succeed. They provide training for teachers and parents on the long-term effects that chemo has on the students.
This year, Declan was able to start kindergarten in August and is currently in the maintenance phase of his treatment, which includes daily chemotherapy at home and in-clinic chemotherapy every three months. Shortly after Declan began his current stage of treatment, he and his family had to move to Indiana, leaving their friends, family, and clinic—essentially, their entire support network—behind. Despite being out of state and ten hours away from Carilion Children's Hospital, though, they were able to still use some of that critical support network, even from a distance, through the amazing educational resources Amy Fender provided them. "Declan is finally to a point where he wants to tell his classmates about his diagnosis," Elizabeth explains. "Amy emailed me presentations, snail-mailed flyers, got us a “Monkey from Monkey in My Chair,” and even sent us things we can pass out to his classmates. It's been amazing. We were able to confidently talk to his classmates about his diagnosis and they were so receptive to it."
Navigating childhood cancer is not easy for any family. ASK ensures that families have financial, educational, and emotional support from the time of the child's diagnosis through adulthood.
"Cancer touches every part of life, and it's hard to go through it; it's hard to survive it as a family. And without someone like ASK filling in the gaps for the things you don't even know that you don't know, it wouldn’t be possible. When you start the cancer journey, you don't know what you're going to need. You don't know where you're going to be struggling, and you're struggling everywhere. Being in a different state with different resources, we truly know the difference between having ASK and not having ASK. It is huge. ASK makes the journey so much easier, which isn’t a small thing when you’re talking about a complete upheaval in your lives like a pediatric cancer diagnosis causes."
- Elizabeth ASK Kid Declan's Mom
Today, Declan loves jumping on the trampoline, building with his Legos, and playing with his friends at school. Since doing physical therapy, running around and being active is getting easier for him. "[Declan's] really into imaginative play and pretending; we recently just listened to Phantom of the Opera, and he loves pretending to be Phantom, and his little sister plays the role of Christine. They'll do a whole play for us, which has been really fun. We’re adjusting to life with a cancer diagnosis. It’s becoming our normal, just another thing we do doing our day. It’s crazy that cancer is normal for us. I never thought we’d ever think of this as routine and un-extraordinary. But we do. And ASK was a major part of getting us to this point.”