Five-year-old Jacob M. clutched his beloved Mr. Puddles — a tuxedo cat stuffed animal that traveled everywhere Jacob went — as he walked back for radiation. Mr. Puddles provided comfort to the little boy during his many appointments after he was diagnosed with diffuse intrinsic pontine glioma (DIPG). With Mr. Puddles beside him, Jacob never felt truly alone.
“Mr. Puddles made Jacob feel secure,” Mia explained. “From the minute he fell asleep to the minute he woke up, Jacob made sure he was there. We would have to put a Tile tracker on Mr. Puddles so that we could scan the tag and easily find him because Jacob would cry if he couldn’t find him.”
Facing DIPG at Four Years Old
Less than two weeks after Jacob’s mother, Mia, noticed a head tilt and balance difficulties, Jacob was diagnosed with DIPG — an aggressive pediatric brain tumor that begins in the brain stem and is considered inoperable.
Mia shared, “When they told us that it was DIPG, my first question to the doctor was, ‘If we do radiation and it goes away, how long do we have after it comes back?’ He told me that it would come back, and it would be under one year. It shocked me and made me realize that our lives just completely changed.”
The family understood that undergoing radiation, which required him to be placed under anesthesia, would prolong Jacob’s life, but it ultimately wouldn’t change the outcome. In addition to radiation, his medical team prescribed steroids shortly after his diagnosis.
“The steroids were the worst thing ever,” Mia explained. “They completely changed him. He gained tons of weight. He was angry all the time. He didn’t want to play. He was just sitting on the couch doing nothing, which was really hard to see, especially at five when he should be running around and starting school. He didn’t get to do any of that.”
For a young boy, swallowing a daily steroid pill was challenging. His parents would wrap the pill in a piece of fruit roll-ups and try to make a game of it. Jacob continued to take the medication until he lost his ability to swallow.
“At that point, we couldn’t take it,” Mia said. “Once we knew that the tumor was growing, we decided that we did not want him to continue with the steroids because we wanted his quality of life to be a little bit better than it was.”
Mia tried to consume as much information as she could about DIPG, including reading a resource called “Understanding the Journey: A Parent’s Guide to DIPG.” The resource guides the reader through other families’ stories and the process of what a child goes through with this devastating disease.
“I felt that if I knew enough to be able to acknowledge and understand the symptoms that were coming, then I would be better prepared,” Mia said. “For example, I knew he wasn’t going to be able to speak again. So knowing that ahead of time, I would think in what ways can we start acting now to make it easier for us to communicate with him.”
Grieving the Loss of a Child
Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19 years. Less than one year after Jacob’s diagnosis, the five-year-old boy with an affinity for Captain America passed away.
“It’s been a roller coaster,” Mia shared about her grief after Jacob’s passing. “On those days where you feel like you want to give up, that’s when you got to keep your head up, especially if you have other kids. It’s important to be present and live one day at a time — not thinking what life will be like in a week or a year.”
Mr. Puddles continues to offer solace to the family nearly a year and a half after Jacob’s death.
“Whenever I’m feeling upset or having a rough night, I just hold Mr. Puddles to make me feel closer to Jacob,” Mia shared. “As we’re going through this journey and trying to create awareness, I want Jacob to leave some legacy. We thought how fun it would be to incorporate Mr. Puddles because he was a huge part of Jacob’s life.”
When Mia began the registration process to create their Southern California Brain Tumor Walk fundraising team, it felt natural to call themselves, “Team Jacob and Mr. Puddles” and fundraise in Jacob’s memory.
“I felt like it was part of my grieving process to go,” Mia said. “I want to remember him for who he was rather than for that year that he suffered.”
Mr. Puddles joined the family for the 2023 Southern California Brain Tumor Walk, as their family and friends showed their support and helped raise more than $2,000 for the National Brain Tumor Society.