Community News

Walker’s Journey

By: Kara Giandomenico | Jan 18th, 2024

Family on the couch Walker with his parents and baby brother

Our wonderful baby boy

When our son, Walker Avery Gronau, took his first breath on April 27, 2020, our world, as we knew it, changed forever. Covid was spreading like wildfire, but for us, nothing mattered that day outside of holding this tiny 6-pound baby boy. He was so alert and instantly exuded an old soul, observing us with these mesmerizing oceanic blue eyes. Chris and I had both lost our mothers prior to his birth, and we like to think he had a little bit of both of them in him, sent as a gift from them.

Walker was always so calm. Even early on, he had a way of making everyone around him feel loved, without an ounce of shyness. He would go up to other children and parents, gently gesturing that he wanted them to play.

 

Something felt ‘off’

We couldn’t pretend we didn’t have concerns about Walker’s health early on. He endured stomach issues almost daily. Consults with gastro specialists got us nowhere, hearing that it was a minor and common issue. But holding him as he shook and cried countless times until it was over never seemed 'minor' or 'common' to me.

At around 15 months, we became concerned that he was still not speaking. A brief phase of saying Mama and Dada had stopped, and even his babbling became non-existent. We took him to his pediatrician, agreeing to start him with in-home speech therapy along with occupational therapy, which was a blessing. This seemed ideal because of his love for interacting. There was no doubt he had a unique imagination. This might have been more predominant because he was non-verbal, but to see the ways he communicated nonetheless is something we loved most about him.

One afternoon, I captured a picture of him playing. I observed just how dark the circles under his eyes were becoming, his skin giving off a yellow complexion, his ribs more distinctly sticking out. However, once again, our worries were redirected, this time with doctors saying he was simply a picky eater and probably not sleeping enough. I thought that strange since he never expressed an ounce of fatigue. My gut feelings made me dig deeper, from topics about heavy metals to low iron. Deep down, we feared it was not that simple.

In the meantime, we watched Walker obsess over dinosaurs, dig holes with his trucks, and collect rocks of all shapes and sizes. Each night, my husband Chris and I made it our mission to give Walker all our attention, especially in the evenings. We’d chase him around the house, let him hide, pretending not to see him. We had our routine and we looked forward to it every day. After baths, Chris would take Walker to get in his PJs, and I would wait down the hall for his little voice to make a "pss, pssss" while they hid behind his bedroom door waiting for me to find them. We'd all sit together reading the books he had picked out. Afterward, we’d stand him up, do our special goodnight handshake, and blow three kisses upward to his three grandparents who were now angels in heaven.

Woman holding baby Walker with his mom, Kara

Finally, a diagnosis

In November of 2022, Walker got sick with RSV, and I had just given birth to our second child, Easton. Initially, his ongoing fevers were dismissed by doctors. But by December, our demands for further testing were finally heard. We had no idea just how life-changing these flagged labs would be. Suddenly life seemed to move too quickly. By January 2023, Walker was seen twice a week and doing bloodwork every other week.

When life changes like that, you expect a two-year-old to get over the constant oncology visits. But when I tell you this kid just went with the flow, even looking forward to seeing his doctor to play hide and seek, it makes your heart melt. Of course, each time in the lab, I'd try to prepare him by letting him know there would be a quick ‘ouchie’. He would just look up at me from my lap, holding my hand, then point towards the hallway that led to the clinic’s playroom. I swear it was as though he knew what was needed of him.

By May 24th, after five months of pokes and three biopsies, we now had a diagnosis. We listened stunned as his doctor described Fanconi anemia (FA). I don't think a single parent wouldn't feel heartache at such an outcome. The drive home was quiet. I was already searching the FA and other families’ stories. Right when we were feeling most alone, I came across the Fanconi Anemia Research Fund (FARF). To say we felt connected to a community and more understood is an understatement.

 

Transplant

On June 5th, we had our first good news in almost six months. Walker's now 10-month-old brother, Easton, was a 10/10 match for a bone marrow transplant. We struggled with feeling celebratory, knowing how serious this procedure would become for Walker and the guilt for how this would also affect Easton. By July 26th, Walker and Easton were officially ready for what we thought was our new beginning. Strange to think on the 25th, all four of us were laughing and playing in the kitchen for the last time ever, feeling so eager and hopeful.

As always, Walker did everything asked of him during his week of chemo. On August 1st, Easton would have his bone marrow harvest. Leading up to the transplant, Walker now had a .03 white blood count. Chris and I were so unaware of complications we never could have predicted. The transplant procedure on the next day seemed flawless.

 

Our world crashing down

However, over the next few days, Walker expressed severe abdominal pain. For a child who never complains, the pain level that he experienced was something I never could have prepared for. From one afternoon all the way until morning, Walker would not only still have the stomach pain, but now fevers and continuous vomiting. I voiced my concerns as I laid holding him the entire night. His condition was apparently normal for a bone marrow transplant. But at 8 am, doctors called for Rapid Response as Walker became unresponsive in the nook of my arm, still hand in hand. Walker was immediately moved to the pediatric intensive care unit, in which they would attempt to intubate him, but as they did, he coded. Chris was walking in circles and I was being held up by staff, watching as they attempted to save him for approximately an hour.

Our resilient boy just couldn't take any more. Walker took his last breath and we watched the twinkle in his eyes dwindle away, still in his favorite dinosaur pajamas. I laid with him, singing his favorite song. Before letting him go, I said for the last time, "no more ouchies”. 

Walker's fight and strength made him the definition of heroic. On this day, I tell Walker's story about his beautiful soul, his courage and the will to smile under any circumstances. While we will never know the path in which Walker's life would have played out with FA, we do, however, know such a child existed with all the love anyone could have given.