Jackson’s mom Martine has a “go bag” packed at all times. It includes Jackson’s pillow and comforter, his favorite stuffed animals, DVDs of his favorite movies including Boss Baby and Zootopia, and an iPad and whiteboard for schoolwork. Martine also makes sure to throw in some favorite snacks, a milk frother and hot chocolate packets, an extension cord and surge protector, and her laptop and toiletries. If they have to leave for the hospital in a hurry, they’re never quite sure how long they’ll be there. Whenever they get home, she washes everything, packs most of the items right back up and sits the bag on the counter, just in case.

This uncertain way of living, having to be ready to head to the hospital at any time, is how Jackson and his family have been living since July 2023, when Jackson was diagnosed with Ewing sarcoma, a type of bone cancer.

The Beginning

The first sign of cancer didn’t seem like a sign at all – Jackson tripped and hurt his leg during a trip to California to visit family. His leg kept bugging him on and off, until two nights later he woke up screaming in pain. His dad, Kyle took him to an after-hours clinic, then the emergency room. The hours dragged slowly past, and Jackson had an ultrasound, then another ultrasound, then an MRI. Kyle had been awake for more than 24 hours, worried about his son, when a doctor ushered him out of the hospital room to tell him the news: Jackson likely had bone cancer. Kyle broke down crying and called Martine, who was across the country at their home in Maine. She booked a flight right away.

“Nothing is little.”

Jackson’s tumor, which the doctors confirmed was Ewing sarcoma, was so big it caused a bone in his leg to break. When the doctors told Martine they’d likely have to remove his whole fibula, she couldn’t believe it.

“I remember (the doctor) very nonchalantly said ‘Oh, and they’ll have to take his fibula…’ and I was like what?” Martine said. “I understand my child has cancer but this is a kid who loves to play sports, he’s an athletic kid – is there no salvaging it?”

A little more investigating from the surgery team showed that they could salvage it, and Jackson had surgery to remove roughly half of his fibula in November 2023. He uses a wheelchair and a walker to get around – a tough transition for such an active 6-year-old.

“For that first month we just carried him around the house, and used a wheelchair when we were out,” Martine said.

Now, Jackson is partway through 14 rounds of chemotherapy, a tough journey that came with side effects like nausea, exhaustion, and even his fingernails falling off. Chemotherapy works by attacking any fast-growing cell – this includes cancer cells, but it also includes things like hair and nails. While he’s undergoing chemotherapy, Martine and Kyle have to keep an extra close eye on Jackson because his immune system is compromised, meaning even a low fever could be a sign of something serious.

“Nothing is little,” Martine said. “Any symptom could be a big deal. We’re not even supposed to take him to the dentist while he’s in treatment because of the risk of infection. We’re watching every little thing.”

This is where Martine’s “go bag” comes into play – any fever or unusual symptom means they have to drop everything and get Jackson to the hospital.

“If there's one thing I’ve learned from all this, it’s that there is no predictability,” Martine said. “It’s going to do what it’s going to do, no matter what you try to do to stay ahead.”

The Team Behind Jackson

Martine says it’s scary to have a child diagnosed with such a rare disease, but she’s comforted to know that so many doctors across the country have collaborated on Jackson’s case – he was diagnosed at Stanford in California, started treatment at Dana Farber in Boston and is now receiving treatment at The Barbara Bush Children’s Hospital in Maine. Martine says she’s been impressed by how well each hospital system and care team has communicated with her and with one another.

“The doctors know his name, and they tell me that they get together to talk about his case. He’s not just a box they’re checking, they really know what’s going on with him.”

This kind of collaboration is critical in childhood cancer treatment – Ewing sarcoma, along with most childhood cancers, is considered extremely rare, so doctors need to share information and ideas to make sure kids like Jackson get the best care possible. Kids need treatments that are personalized to them. For Jackson, that meant taking only part of his fibula instead of the whole thing, so the rest of his bone can grow with him and allow him to keep up with sports.

Since his surgery, he’s been working hard in physical therapy to get his mobility back. His physical therapist helps Jackson stay motivated by incorporating sports moves and even rock climbing into his recovery.

Making The Road Easier

Martine says Jackson’s experience has made her want to be a resource for parents whose kids have recently been diagnosed with cancer. Before cancer was part of Jackson’s life, Martine had a blog where she documented resources and tips for handling scoliosis, which she and Jackson both have. Now, she has a list of cancer “hacks” she wants to share – shirts that make port access easier, a thermometer kids can wear that has an alarm go off if they spike a fever. “Without that, I wouldn’t sleep, I’d be up taking his temperature all night,” she said. She learned these tricks from other parents, and she wants to pass the knowledge down and make the journey easier for kids diagnosed after Jackson. But the thing she wants more than anything is better treatments for kids.

“We’re lucky Jackson has been okay on chemo, but this is what they’ve been using for decades,” she said. “It’s crazy that it hasn’t been updated. The more awareness we get on all these childhood cancers, the more funding they’re going to get.”