The worst day for Frank LaFountain was not the day he learned his 11-year-old granddaughter, McKenzie Lowe, had a tumor buried in her brain, which was causing her vision to blur.
“No, that wasn't the worst day. The worst day was two days later, on November 28, when they told us it was inoperable,” said LaFountain. He and his wife, Joann, had traveled from their Florida retirement community to Hudson to spend Thanksgiving with their daughter, Diann Lowe, and family.
McKenzie, their granddaughter, is the center of their universe. The pull was too strong; they couldn't bear to leave – so they haven't.
“We're still here. We never left,” LaFountain said, which is their way of helping absorb the shock of this unnatural blow, by helping with the new daily routine.
“I've been driving McKenzie down to Boston every day, five days a week, where she's been getting radiation and experimental chemo treatments. Right now she's back to laughing and singing again,” said LaFountain. “Today she wore those Groucho Marx glasses with the buggy eyes to school, just for fun.”
LaFountain said it began with double vision, so they had her eyes checked. At first they thought it might be related to Lyme disease, but the blood work told a different story. McKenzie's white cell count was too low.
"We took her to Children's, and that's how we found out. It all happened very fast," LaFountain said.
McKenzie is battling DIPG – Diffuse Intrinsic Pontine Glioma, an aggressive and relentless cancer of the “pons” region of the brain stem, which controls breathing and sight, among other bodily functions. The cancer cells grow in and around vital, healthy cells, making it impossible to remove surgically, with out devastating effects.
This is going to be a difficult journey. Odds are not in McKenzie's favor – according to the American Brain Tumor Association, only a fraction of the 200 or so children diagnosed annually with DIPG outlive the disease. But McKenzie is a fighter, and her family –the LaFountains, her parents, Dianne and Ron Lowe, and older sister, Casey, are doing everything they can to keep McKenzie's spirits up.
They called specialists at St. Jude Children's Research Hospital, and Cedars-Sinai for second and third opinions, but were told that the treatment plan McKenzie is receiving at Boston's Children's Hospital is state of the art.
There has been no real advancement in treating this sort of tumor in decades, which is why they are hoping and praying the experimental drugs will jump-start a miracle.
Since November, there have been many fundraising efforts organized on McKenzie's behalf – a whole community of caring that has wrapped its collective arms around the family.
“Friends of McKenzie Lowe” includes the entire school community at Hills Garrison Elementary, where McKenzie is a fifth grader. They are working on a number of fundraisers, as are several other groups in Massachusetts, including the Elks Club and VFW.
The Cops for Kids with Cancer Foundation donated $5,000 to the family in December, and Hudson police officers and the Hudson Police Employees Association presented an additional check to help defray expenses, some of which aren't covered by insurance due to the experimental nature of the treatment, said Hudson Police Officer James Stys.
Another fundraiser is scheduled for Jan. 20 at The Yard Restaurant in Manchester, from 12 - 4 p.m. “Country for McKenzie,” will feature two country music dance bands, the Natalie Turgeon Band and the Tom Dixon Band, said LaFountain. Tickets are $15 for adults and $7 for kids under age 12. Ron Doucet, owner of The Yard, donated the venue for the event.
It's been like that, LaFountain said – complete strangers stepping up and offering whatever they can, not only to help raise money, but to make every day special.
Like Rick DeFelice, owner of Valentino's Kitchen in Hudson, who had donated some gift certificates for one of the fundraisers. He contacted the family and said he wanted to send them all – Diann, Ron, Casey and McKenzie – anywhere they wanted to go.
“McKenzie said she wanted to go to Sea World, so that's where he's sending them in February – a complete stranger is doing this for my family,” LaFountain said, having a little trouble getting the words out, past the emotion of it all.
He said another kind stranger, Kim Frenette of Hudson, contacted the family to tell them she had rescued a horse that she wanted to give to McKenzie, who loves horses.
“Kim keeps the horse at her place, but McKenzie can go anytime she wants,” he said. “She named the horse Starfish at first, but shortened it to Star.”
“It's unbelievable. There are truly a lot of good people in the world,” LaFountain said.
He is hoping the treatments will shrink the tumor and deliver him another golden summer with his granddaughter, like the one they spent last year in Florida.
“She is something else – she spent most of summer with us in Florida, and because we live in an adult community, everyone there fell in love with her, too,” he said. “It's been such a wonderful outpouring. Everyone's been so supportive. Now, we've got our fingers crossed and we're just praying.”