Diagnosed at 10 months old, little Walter's cancer journey was anything but straightforward
When Katie and Matthew noticed a spot of swelling on their five-month-old son Walter’s lip, at first, they thought it was just another hemangioma – a type of non-cancerous growth that he had before and that resolved on their own.
However, with this new spot near his lip, the swelling just got worse, and it didn’t respond to medication like it was supposed to. An ultrasound showed that if it was a hemangioma, it wasn’t typical, so the family was referred to the Ear, Nose & Throat (ENT) specialists at Children’s Hospital at London Health Sciences Centre (LHSC).
“Dr. Elise Graham in paediatric ENT was wonderful,” Katie says. “She ordered an MRI and it came back as atypical, so a biopsy was done. It is my understanding that the tissue was analyzed at LHSC, where it was a ‘strange’ case, so it was then forwarded to Sick Kids in Toronto. They confirmed Rhabdomyosarcoma, a soft tissue cancer. He was 10 months old.
“Dr. Graham called with the news early in the morning, before she had even reached her clinic. She cried with me on the phone.”
Rhabdomyosarcoma occurs in about four in every million kids under four years of age. With that diagnosis, Walter entered the care of paediatric oncologist Dr. Chantel Cacciotti, and his care plan moved quickly.
“That night Dr. Cacciotti called me, I assume from home,” Katie says. “Within days we were in for a port and feeding tube insertion, and within a week of diagnosis we had surgery to remove the tumour. The speed with which they began treatment showed us just how seriously they were taking Walter’s diagnosis and care.”
The location of Walter’s tumour near his lip complicated his treatment. Within a matter of days of his diagnosis, Walter underwent surgery to remove part of his lip in hopes of removing the tumour. However, a week later, lab results came back showing that some cancer remained, and little Walter would need another surgery.
Adding to his challenges, Walter’s feeding tube broke, and the sutures holding his lip together kept pulling apart from the tension his new, smaller mouth placed on them. Walter needed a third surgery — all in three weeks — to repair his lip.
Between surgeries, Walter also started chemotherapy for his cancer. All that, before he had even celebrated his first birthday.
Cancer care is a long road, but Walter crossed a significant milestone in January 2023, when he got to ring the bell, signifying the completion of his chemotherapy.
“He is being monitored every three months until he is two years post chemotherapy, then perhaps every six months,” Katie explains. “He will be followed for the rest of his life.”
Looking back now, Walter’s family feels thankful for the care they all received, from everyone they encountered on Walter’s journey. “In all honesty our health care system isn’t perfect, but the treatment we received from individual doctors and nurses, porters, custodians and admin staff was excellent,” Katie says.
“Dr. Cacciotti and nurse Tara were always available to answer questions and lend an ear. One frantic night when we ended up in the ER, Tara even came down to meet us to personally give Walter a medication he needed (and my husband and me a couple of hugs),” she recalls.
“We can’t say enough about the incredible nurses up on the 6th floor, who were angels on our numerous stays upstairs.”
Through support of equipment, patient support, education, and research, Children’s Health Foundation donors were also there for Walter and his family during this incredibly difficult time. Walter has come a long way in the few years since his diagnosis.
“Walter was a baby when we first started all this, and now at two and a half he has grown so much,” Katie says. “He literally learned to walk in part from going up and down the halls of the chemo ward. He is now a funny as hell toddler who loves being outside – something we would do as often as we could at the hospital, rigging his IV pole to his stroller so we could go see the flowers outside in the pots at B entrance.
“He loves trucks and tractors and baseball and his little brother. He is a beautiful silly little boy, and we thank God every day that we still have him in our lives and we can watch him grow.
“His type of cancer is incredibly aggressive and would certainly have killed him without treatment,” Katie says. “There aren’t words to express our gratitude.”
Walter is featured on the cover of our celebrations! magazine — read more stories right here!
