David Elbert is both parent and caregiver to his daughter Ruby. When Ruby was 4 months old, she was diagnosed with neuroblastoma, a form of cancer which resulted in a spinal cord injury from T-12/L1 to L5.
A rough medical road
Ruby grew up experiencing health risks from cancer and also faced other muscular and neurological concerns. In addition, “the late effects of treatments of her cancer create a whole range of challenges including basically leaving her with growth failure and a variety of other risks,” David explains.
After an emergency laminectomy and tumor resection, Ruby began her recovery process. During this period, the family worked with specialists to help find activities for Ruby to participate in.
“[A specialist] came in with a CD player and some lights to put up around the bed, and reminded us that we were still dealing with a baby, and that she had to play, and that carried us a long way through Ruby’s recovery.”
Ruby started getting involved in adaptive sports when she was only 16 months old, and was able to get around with a walker and bracing by the age of 3. Participating in activities strengthened her physical condition.
However, Ruby’s cancer returned around the same time her younger brother was due to be born. The family relocated to the Ronald McDonald House in Philadelphia where Ruby underwent intensive treatment. David’s family united their support, and their combined efforts got them through these tough times together. For instance, David’s mother-in-law stayed in the Ronald McDonald house for short periods of time to give the family a chance to recharge.
A breath of fresh air
Once Ruby finished her treatment, the family found themselves back in the regular cycle of things. “I started getting back to things like playing basketball a few times a week, and my wife does some yoga,” David shares. “Sometimes I go for a walk in the woods, just thinking about everything that is going on, which is good to process too, but it’s also important to be away from it for a short while.” Ruby got back into adaptive sports as well.
Today, Ruby is 14 years old and cancer-free. Her early involvement in adaptive sports continued to flourish, as she is now active in different kinds of adaptive sports, from wheelchair basketball to sled hockey.
As for David, he is still the loving father and dedicated caregiver that he has always been, continuing to look out for his daughter and advocate for her. He recognizes the challenges, both for Ruby and for himself as a protective father who wants the best for his child.
Striking a balance to foster independence
“[It’s so hard] to see her left out and left behind in certain circumstances. Ruby loves sports and she’s incredibly competitive, yet her second round of cancer has affected her growth. So here’s a girl who loves to play wheelchair basketball, and will give her all, and is a smart player, but still has to fight limits in her size and strength. When she bumps up against those limits, I can still find myself thinking ‘the kid’s had cancer twice, the kid is paralyzed, can she catch a break somewhere?’ and that’s certainly emotionally hard as a parent.”
Yet, over the years, David has observed how his role as a parent and caregiver evolved as well. He recalls that he took a more hands-on and physical approach to meeting Ruby’s needs when she was still young, but now that she is older, he is letting her be more in-charge of the reins. Ruby is slowly but surely developing more independence.
Ruby has her father to learn from, and also her peers from her sports teams. “Ruby knows [how to be independent] from watching other kids on her sport teams. She truly is a remarkable, smart, driven kid.” Ultimately, David’s love for Ruby has helped her to blossom into the person she is today.
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