Strange breakthrough at Seattle Children’s is life-altering for young boy

It’s a medical breakthrough in the cancer field that sounds almost too strange to be true. An injectable substance derived from scorpion venom that makes tumors appear as green as a glow stick.

The “Tumor Paint,” as it’s called, was recently used on a local boy to guide the way to a tumor embedded deep in his brain.

Two-year-old Hunter has become one of just 15 pediatric patients at Seattle Children’s who have had Tumor Paint injected into their veins.

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How he got there began back in December when Hunter’s parents noticed he’d developed an odd quirk.

“Watching him walk — it almost looked like he would just start to lean and fall. Part of me thought, ‘well he’s just a little off balance he’s just a 2-year-old,’ but we’re talking in a matter of three weeks it got progressively worse,” Hunter’s mom, Laura Coffman, said.

With the tipsiness came vomiting. So off to the doctor’s office in Maple Valley.

“She checked his ears, checked his eyes, checked his nose, she was checking everything. I was just watching her and everything was coming back just fine and so she couldn’t figure it out … she said just go to [Seattle] Children’s and go from there,” Coffman remembers.

It was at Seattle Children’s that doctors made that life-altering discovery that can make a parent feel like the ground has opened up beneath them. They found Hunter had a mass at the back of his brain. Tests confirmed it was cancer and cancer cells were speckled throughout his brain.

“It was pretty much the worst — if you can think how it spread — it was the worst prognosis for his age when we were looking up anything. Our doctor kept telling us ‘don’t look online,’” Coffman said.

Soon after the worst though came hope in the form of something called “Tumor Paint.” Which, as you can imagine from the perspective of already terrified parents, can be a tough sell based on the name alone.

“I couldn’t wrap my brain around what [the doctor] was talking about how it was going to make it ‘glow,’” Coffman said.

Two years ago, on the brink of the first human trials, I spoke with University of Washington Professor, Fred Hutch brain cancer researcher and Doctor Jim Olson, who invented Tumor Paint. He said it was luck that led him to a protein found in scorpion venom that, when combined with a “flashlight” molecule can make tumors glow for surgeons.

“It gives back a beautiful green glow that they see as an overlay over the typical scene that they see,” Olson said.

It’s not a cancer treatment. Rather it’s a tool to guide the way for surgeons so that they cut only the glowing tumor and not critical, healthy brain tissue.

It was an invention born out of a promise Olson made to an 11-year-old girl. A patient he lost to an especially deadly form of brain cancer.

“Before she died she asked if we would take her brain at the time that she died and create research tools to share with other scientists around the world so that kids in the future wouldn’t have to go through what she did,” Olson said.

That’s why we have Tumor Paint today, and why Hunter is here today, too. Coffman says her son’s surgery went better than expected.

“The surgery went amazing. Went a lot faster. It was about four to five hours he was in surgery when it was supposed to be about eight. [The doctor] came out, I was sure she was going to come out and say ‘we couldn’t get anything’ and, you know, she came out and said ‘I got everything, there might be a light film left over, but he’s going to have a fight of chemotherapy and radiation,’ so we felt really good at that point,” Coffman said.

Hunter underwent three rounds of intense chemotherapy starting in January and ending in May. Then, he went through 30 sessions of proton radiation at the end of June. All told, two weeks ago Hunter was given a scan and the two-year-old was declared in remission.

Laura, however briefly, allowed herself to play the ‘what if’ game. What if there wasn’t Tumor Paint?

“I started researching other children who had Medulloblastoma and I started seeing these children who survived but they had really harsh side effects. [The medical staff] said ‘yeah that’s from surgery.’ And here Hunter is jumping into a pool, learning, I feel like he’s way more advanced than we ever thought he’d be at this stage … I have to believe that this is something that is changing surgeries completely because Hunter is dong amazing,” Coffman said.

Dr. Amy Lee at Seattle Children’s was the surgeon on this case. Hunter’s oncologist is Dr. Sarah Leary. She said the hospital has used Tumor Paint on 15 pediatric patients so far. All of the cases are part of the safety study required by the FDA as one step of many to get the substance approved for wider use.

Dr. Olson — Tumor Paint’s inventor — says it’s too early to know when FDA approval can happen. “They call the shots,” to put it in his own words. He says Tumor Paint has been tested for skin cancer, adults and children with brain tumors, and teams are now studying its use for breast cancer.

Much of the research into Tumor Paint, which began in 2004, was paid for through a crowdfunding campaign called Project Violet. The crowdfunding was a necessary step as many entities that approve grants found the Tumor Paint idea too ‘far out’ to fund initially.

The fundraising continues on Oct. 12 at Optimism Brewery on Capitol Hill. Hunter’s family will be there.

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