What’s wrong with this picture?

MAT-SU — Recently, we in the Mat-Su had the good fortune to start a holiday season of gratitude by celebrating the 65th anniversary of the Mat-Su Valley Frontiersman. We read and honored Mat-Su Valley Good Neighbors — outstanding individuals, Palmer business merchants, community members, schools and a first-time community outreach organization that will hopefully become a permanent fixture.

We’ve read story upon story of how these Mat-Su Valley neighbors come together as “family” in times of need. It might be tough financial times, floods, illnesses or just plain ol’ hard times. But that’s what we do, right? That’s the Mat-Su. It has been said over and over that our Valley residents’ actions speak louder than words.

Look at the photo accompanying this story. What’s wrong with this picture? It was taken at a Mat-Su home near the base of the Talkeetna Mountains this summer. What could be more right? A grinning boy with a dog, all smiles. But something is wrong.

The boy is Connor Dunham, another of our Mat-Su neighbors.

You have read about Connor in the Frontiersman over the last six years. Some of you raised money year-round by raising funds for research or registered on the American Bone Marrow Registry, all in the hopes of finding a cure to his cancer, acute lymphoblastic leukemia.

Imagine how the last six years have been for the Dunham family members. They daily deal with the maze of broken health care systems, with their regulations, changes, uncertainty and absurd mangled messes. Add daily coordination of medications, multiple appointments, chemotherapy, radiation, a bone marrow transplant, continual follow-up care, serial casting for bones affected by radiation, therapy and “normal” everyday life — things like school, grocery shopping, soccer practices/games, swimming, sleepovers — all while making sure Carson, the younger brother, doesn’t get lost in it all or feel like a caregiver himself.

Connor was diagnosed May 10, 2006, just two weeks before his 2nd birthday. His parents, Steve and Alicia, high school sweethearts born and raised in the Mat-Su, were devastated. Connor and dad were medevaced to Seattle. Mom followed with 4-month-old Carson on a commercial jet. Once in Seattle, Connor’s white blood count was so high he was classified “very high risk.” Immediate chemo was started, with no response. No matches were found on the American Bone Marrow Registry, so the risky decision was made to try a cord blood transplant. Then, at the last moment, a woman from England came up with a 9.5/10 match!

Mat-Su neighbors stepped up to the plate as mom and dad switched off and on staying with each of the young boys. You shopped at Carr’s, helping to donate air miles. Some even flew to Seattle, giving needed respite as they stayed at Ronald McDonald House. You continued fundraisers as mortgages and regular household bills had to be paid. Each time they thought they would be heading back to the Valley, setbacks hit — infections, poor blood counts or responses to medications. Again, your cards and letters of encouragement sustained the family.

Then on May 9, 2007, one day shy of a year from his initial diagnosis, they got to fly home — back to the Mat-Su. But that didn’t mean that things were over or that the memory of the families of others whose battles were not won was not far from their minds. Mat-Su families like Cody Dennis’ or Carl Gatto’s. They knew it could just as easily be them still.

Now would come the hard part: living with cancer.

For many Mat-Su families impacted by Alaska’s No. 1 killer, cancer, despite local medical practices like Midnight Sun Oncology pioneering oncology and treatment here in the Valley, and oncology services in Anchorage, many families have to make the trek back and forth to other medical hub cities for treatments not (yet) available locally. While many things are changing, obstacles still remain.

The financial strain many of our Alaska and Valley families face going Outside for treatment can hit like a freight train. Their commutes to cancer hub cities become routine, like for the Dunhams. The family made the difficult sacrifice of Steve working on the North Slope, being away weeks, sometimes months, to provide financially, but mostly so Connor can continue to get the medical care he needs. Plus, the extended time off helps give Alicia a break.

Many families, in essence, become “single-parent” households, trying to juggle trips in and out of hospitals, dealing with myriad doctor and rehab appointments — plus keeping some semblance of “normalcy.” Some families fracture under the strain as one parent has to stay behind and both run ragged. One worries because they can’t be there, the other worries because they are there.

The high visibility of Connor, in large part due to the Frontiersman, lets us see photos and keep up on his journey. We watched him grow from a chubby toddler from chemo/steroids one minute, to poof — he’s a handsome second-grader!

Then, it happened. Services and expertise with Connor’s type of leukemia were not available locally. The rising cost of gas, airfare and time, plus raising two “normal” young boys when, at the drop of a hat, they’d have to head to Anchorage or fly to Seattle, took its toll. They had made it to the five-year victory celebration of his successful transplant. It was a decision one more family had to make; the choice to leave their beloved Alaska/Mat-Su Valley family and friends to be closer to treatment and services. It had to be.

It has been bittersweet. Mat-Su is still “home” to them. They try to return yearly to visit.

Look at the photo again.

Notice Connor’s purple shirt? It’s one of his favorites. It’s his “Survivor” shirt from Relay For Life. He told me, “When I wear my purple survivor shirt it makes people think that if we keep working hard, all of us together, we can find the cure for cancer.”

I asked him how he knew.

His answer was matter of fact, “I just do!”

Then, he grinned.

So, what’s wrong with the picture?

One Mat-Su merchant said to Connor’s mom, “Kids can’t get cancer, can they?”

No, kids shouldn’t get cancer, but they do.

And that’s what is wrong with the picture.

Care Tuk is an 11-time cancer patient and advocate for cancer survivors and caregivers.