Caregiver Spotlight: David Elbert

Posted by Reeve Staff in Daily Dose on May 25, 2016 # Caregiving

As a caregiver and parent, David Elbert knows the unexpected turns that life can take while caring for a child with a spinal cord injury. At 4 months old David’s daughter Ruby was diagnosed with neuroblastoma, a form of cancer that caused a tumor to develop on the spine, and crushed her spinal cord from T-12/L1 to L5. The initial prognosis was that Ruby would not regain any function back.

“Ruby has had this complex combination of spinal cord injury and then other medical issues. When we think spinal cord injury, we think of the neurological damage to sensation and function, we think of related orthopedic issues and muscular imbalance and she has all those types of issues with the added issues of cancer. 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.

In time, Ruby did manage to recover after having an emergency laminectomy and tumor resection. With help of a physical therapist while staying at the University of Maryland Medical Center, and child life specialists the family was able to get back on track. “[The 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.”

By the time she was three, Ruby was mobile with the use of a walker and bracing. She started adaptive sports at 16 months and her activity was the center of her continued physical improvement. Unfortunately, just before her younger brother was to be born, Ruby’s cancer returned. The family moved into the Ronald McDonald House near the Children’s Hospital of Philadelphia where Ruby received intensive treatment. During this time, like any caregiver, David found it hard to step away from the situation to recharge. Still, with the help of his wife and family, they were able to find a balance that benefited everyone.

David’s mother-in-law helped by coming to live in the Ronald McDonald house for short periods of time to give them breaks from the hospital room until Ruby was done with treatment. “But once all that was over and we were back home, we worked back to a normal regime, and Ruby got back to doing sports. Then I started getting back to things like playing basketball a few times a week, and my wife does some yoga. 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 is now cancer free at age 14, and actively involved in adaptive sports playing everything from wheelchair basketball to sled hockey. However, there are still some challenges that David takes on as both a caregiver and a loving, protective father, like looking for an accessible school system and other everyday activities that other children her age should be able to enjoy.

“It was a big emotional adjustment trying to make sure that I was advocating appropriately for my daughter.” David explains. “[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.”

Through all his ups and downs as a caregiver, at the end of the day, David does all that he can to be a good father and make sure Ruby is growing into an independent, mature adult. “I think early on [being a caregiver], was being someone who was actually physically there doing a lot of stuff, [but now] it has migrated towards stepping back and letting Ruby be the independent person that she is, and that I know she can be,” David said. “We’ve had to step in various times at school to help mediate situations to figure out the best way to do things or point out issues, but Ruby knows [how to be independent] from watching other kids on her sport teams. She truly is a remarkable, smart, driven kid.”