March 7, 2012
Misty Volaski, email@example.com
At a time when most kids are getting excited for the end of the school year, Jake Larkin and his family will be excited for a very different reason: He’ll be getting his IV removed.
“We’re hoping for June or July,” said Jake’s mom, Ojai native Kimberly Cluff Larkin. “And then, we have a big gong in the house, and he’ll get to bang it.”
In February 2012, six-year-old Jake was diagnosed with aplastic anemia, a condition wherein his bone marrow suddenly stopped producing blood cells and platelets. The only cure for the rare condition is a bone marrow transplant.
Jake, along with his mom, Kimberly, his big sister, CatieJo, and father, Bob, moved to Milwaukee’s Children’s Hospital last year so he could receive daily blood transfusions to keep him alive while a donor was sought.
More than 3,000 people worldwide — including several hundred from the Ojai Valley — responded to Jake’s struggle by registering to be potential bone marrow donors. One, a woman from Europe, was a “perfect 10 match” for Jake, Larkin said.
After months of constant worrying, isolation in sterile hospital rooms and handful after handful of powerful drugs, Jake got his bone marrow transfusion Sept. 14. And, in late January, he finally got to go home to San Francisco.
“He’s not out of the woods yet,” said his grandmother, The Oaks at Ojai owner Sheila Cluff. “But we’re extremely thankful and hopeful that his life has been saved … He’s been an absolute trooper. I’m in awe of him.”
Jake has passed several key benchmarks — albeit with a few bumps in the road — but still has a way to go. He’s not “cured,” but is in a sort of remission stage, Larkin said. Jake “no longer falls within the parameters of having aplastic anemia,” she enthused. “However, all that means is that his body is producing enough blood on its own, so he doesn’t fall into that category anymore. He still has treatment issues.”
For example, he must wear a mask anytime he leaves the house and is mostly isolated from others to reduce the risk of infections attacking his still-weakened immune system. He can’t swim or take showers, and still has lots of medications to take.
“We’re so proud of him, he can take eight pills at one time with water, he doesn’t even need milk anymore,” said Larkin. She paused, then reflected, “Another part of me is a bit depressed; this is my son’s accomplishment, swallowing pills, not hitting a home run or something. But it just shows, you just have to celebrate the little things, meet him where he’s at, and we do.”
Where he’s at is surprisingly normal for a little boy who has an IV in his chest 24 hours a day. “He’s as much a 6-year-old little boy as we could expect,” Larkin said. His hair is finally growing back, and he’s recently been allowed to invite his best friend over for short (well-sterilized) play dates. He can even occasionally dribble a soccer ball. And, while 9-year-old CatieJo is, like her parents, intensely worried about her brother, “She still treats him like a brother. She’s still sassy to him!” Larkin said. That sass isn’t exactly a bad thing, though — the family’s biggest challenge, aside from getting Jake well, is maintaining a level of normalcy in the midst of all this upheaval. That’s why little things, like Jake practicing writing numbers from 1 to 100, putting CatieJo back into school and going out for ice cream and pie — Jake’s favorite — are things the Larkins strive to work into the family’s daily routine.
Of course, it isn’t always easy. “This has definitely changed all of us,” Larkin acknowledged. “We just try to make sure that when we see something affecting us, we focus on, OK, really seeing it, and then trying to find a positive in it.”
They’ve gotten lots of help finding positives, in many unexpected ways. They’ve received hundreds of hand-made cards from students across the country who have never met Jake. Students at Wisconsin’s Marquette University took up a collection in their dorms, and along with a basketball signed by their men’s basketball team, they sent Jake $70 — “In one dollar bills!” said Larkin, getting choked up. “That’s their Domino’s pizza money, their Top Ramen money, they gave up for my little boy.” Jake used that “treat” money to buy frozen yogurt and a solar-powered toy car.
A church in Ojai sent Jake a box of goodies. “I didn’t know any of those folks!” Larkin said. “I did grow up in Ojai, but I didn’t know them. It was just, oh my God, these people in my hometown are thinking of us, caring about us, while we’re in the middle of Wisconsin.”
Larkin said her family has been “humbled” by the response from people around the world. “As pessimistic as people can be about people’s level of empathy and caring, we can tell you personally: People care, people go above and beyond. We’ve been the recipient of that,” Larkin said.
But the biggest point of inspiration has been in the number of people who have stepped up to be added to the National Marrow Donor Program. “To think that thousands of people stepped up and swabbed their cheeks for Jake — wow,” Larkin said. Because of their efforts, at least nine bone marrow patients have found matches, the NMDP told the Larkins. “The idea that nine other families have gotten the phone call saying, ‘there might be a match,’ it’s overwhelming! … I feel confident that there’s a family whose family member is going to live because people tested for Jake. That’s humbling and wonderful. We kind of say, ‘Well, I wouldn’t have ever chosen for my child to get sick like this, but at least we know something truly good has come from it.’”
The Larkins said they will remain dedicated to the NMDP cause. “When Jake is really better, even then this isn’t over for us. We’re committed to continuing the cause of bone marrow testing.”
Visit www.marrow.org to learn more about becoming a bone marrow donor.