WHITMAN — They call him Walter the Warrior, and the police escort he and his parents Amber and Ryan Merck received to welcome him back to their Harvard Street home, Friday, Sept. 17 was worthy of a hero.
State police and local police from all over the South Shore led them with motorcycle unit lights and sirens as they left Brookline following Walter’s nine months of treatment for brain cancer at Boston Children’s Hospital.
Walter’s grandmother was an administrator at the Whitman police department and their family remain longtime Whitman residents. Walter will continue to receive care with weekly appointments in Boston as all his physicians monitor his health and development.
Turning 1 year old and starting to grow peach fuzz on his head are just two of the daily milestones Walter and his family have celebrated recently. The family is now complete and readjusting to home life with all four children — ages 9, 7, 5 — all under the same roof.
Walter has been battling choroid plexus carcinoma; a very rare and extraordinarily aggressive form of cancer that infects the brain and spine.
Their family was handed the fight of a lifetime as their 10-month-old became sick around Christmas time of 2020. He was originally thought to have had a viral infection but as his health deteriorated he lost milestones such as crawling. He had changes in his temperament and was inconsolable. Amber and Ryan knew that something was wrong and his journey began at Boston Children’s Hospital with January 2021 revealing a grapefruit sized tumor taking up half of his tiny head. In the days to follow he endured an 18-hour brain surgery with embolization and tumor resection.
As the rarity of his tumor was discovered, and genetic testing was performed, the Mercks learned he has Li Fraumeni Syndrome a rare genetic disorder, which increases the chances of getting multiple kinds of cancer at a young age and throughout his life.
Walter also has retesting of his hearing in October to see if there is further damage from his treatments, said mom Amber.
The diagnosis of his brain cancer led to months of treatments including: chemotherapy, a stem cell transplant, innumerable transfusions, and countless, daily medical procedures only the tip of the iceberg.
With his siblings anxiously waiting to see their brother, Walter — or Mr. Wrinkles, as he is lovingly nicknamed by his dad —Sept. 17 they passed the time with baseball and outdoor toys in the front yard on Harvard Street. The family all wore Walter the Warrior matching gray T-shirts, along with dozens of neighbors, friends and family lining the roadside.
“Life sure is good to be able to be whole as a family again. Now we continue the road of advancing Walter’s milestone achievements,” Ryan wrote on his son’s updates and in his thank you to those who made Walter’s trip home so special.
Ryan has written a blog over the last nine months letting family know how their baby is doing and capturing photos of silly times they have shared.
Listening to all types of music Walter likes to jam. In some of the posted videos, and even with tubes attached, his precious smile and giggle are contagious.
In some ways, it’s therapeutic for the couple to document the day-to-day experiences of a family with a critically ill child, and the Mercks also found humor in their moments with Walter. As he interacted with toys, rode in a wagon to his medical treatments in the stark hallways, and was even given an “Elmo-rific” first birthday in his hospital crib they documented his life. His room decorated by his nurses who brightened their darkest days and through writing they kept other families facing a similar battle in touch with each other.
In a phone interview, Ryan credited the “outstanding” care Walter received at both Dana Farber and Boston Children’s Hospital where he had the top pediatric neurologist and oncologist, he said.
In their blog, Ryan and Amber have expressed being able to lean on each other. Amber says she gets her strength from seeing how much better their baby is doing and feels gratitude for the nurses who cared for Walter and often reminded her to take a walk or step outside on days the stress of seeing and being helpless over their baby’s health got the best of her.
Walter is crawling now and has been phasing out his G Tube feedings where he gets medications and nutrients, she said in a phone interview.
Although he is on a strict diet he is slowly learning how to chew and swallow food.
In late August the Mercks were transitioned to the Boston House for families facing medical crisis who need to be near their hospital and care centers but “escape the hospital setting” with the intentions to transition to their Whitman home as Walter’s health allowed.
As the family attempts a new normal they juggle school, work, and medical bills and around the clock care for Walter with help from Amber’s mom — who also works in the Whitman school system — they are trying to keep a schedule for their other three children all in elementary school.
When asked how the community can help lend a hand Amber said they struggle at meal times, which can be stressful under normal circumstances. Amber and Ryan have had an outpouring of care and support which they have gratefully acknowledged and offered thanks to all who have assisted in this last year through their blog on Facebook.
To contact the family or offer gift cards follow their story or reach out in a private message, visit GoFund Me or by a link for Walter’s medical bills at Facebook.Walter the Warrior Baby Fights Cancer page. If anyone wants to make donations they may contribute directly to Boston Children’s Hospital in Walter Merck’s honor.