Hinman twice saved by sibling marrow transplant

BROTHERS ETHAN and Jesse Hinman sit outside grandma Alice Hinman’s Columbia home. Until his immune system is up to speed, Ethan must wear a mask when he goes out. Maggie Beck/Union Democrat, copyright 2009

He saved Ethan for the first time in 1995, with a do-or-die bone-marrow transplant at UC San Francisco Medical Center. And if Jesse doesn’t remember the clinical details, that’s understandable: He was only two-and-a-half.
 

When he saved his brother’s life again last May with another marrow transplant, Jesse more than remembers it: “He won’t let me forget it,” laughs Ethan, 19 and fresh from cheating death for the second time. “I owe him.”

Such is the camaraderie, support and humor that flow in the Hinmans’ Sonora and Columbia households, where three generations have joined forces to help Ethan recover from a rare blood disease and next year return to classes at San Jose State.

    NEVER FAR from  the surface, however, is just how close Ethan has come to death.
  “Sometimes I wondered just how much one family can take,” said mom Tammy Hinman, whose 43-year-old husband, Eric, in 2006 was hospitalized for heart failure and remains on disability.
    The first harrowing chapter of Ethan’s ordeal, if life were at all fair, should have been the last.
    What was causing the 4-year-old boy to bruise so quickly back in 1995 was not common anemia, as first suspected. Instead, said doctors, it was aplastic anemia, a very rare (five cases per million) and potentially deadly disease that overwhelms the immune system.
    The cure? Jesse’s “magic blood.”
    Not only was Ethan’s little brother a perfect bone-marrow transplant match, but the procedure went without a hitch.

    I REPORTED the brothers’ story in March of 1995, but Jesse was too young to be interviewed and Ethan was recovering. So Tammy told it to me with all the emotion of a mother who had looked the loss of a child in the face.
    Still, Ethan’s survival was a wonderful, heartwarming story that caught the community’s attention and engendered its sympathy and thousands of dollars’ in contributions for the family.
    “He will do something in his life, I know it,” Tammy said at the time. “With all God has done to keep Ethan alive, he must have plans.”
    Ethan last spring was well on his way toward realizing those plans, studying computer engineering at San Jose State, and planning to enroll in the university’s Air Force ROTC program and become a pilot.
    Then he got up one morning last May and realized something was terribly wrong.
    His urine was black.
    “I went to the on-campus clinic, and they put me on lock-down,” remembers Ethan.
 
    WITHIN HOURS, a family friend took him to UC San Francisco Medical Center, scene of his 1995 drama. The doctors began taking his blood, vial by vial by vial. “They tested me for everything under the sun before they knew what was wrong,” said Ethan.
    The verdict: paroxysmal nocturnal hemoglobinuria, or PNH — another incredibly rare (one to two cases per million) blood disease. In fact, said doctors, a childhood case of PNH is probably what had struck Ethan so many years earlier.
    “They said it was the first case ever in someone that young,” said his dad, Eric. “It’s the kind of thing doctors write magazine articles about.’
    But the symptoms were the same: A defect in Ethan’s bone marrow was producing faulty red blood cells that were prone to destruction, hence the dark urine. His immune system was weakening and the only cure was a transplant from his still-perfectly-matched brother.
    
    “I DID IT BEFORE, I can do it again,” was Jesse’s reaction.
    First, doctors had to kill off Ethan’s remaining marrow with intravenous chemicals that caused him so much pain that he began punching the button his morphine drip like the play-all-rows key on a slot machine.
    “I knew it was addictive, and at first I didn’t want it,” he said of the drug. “But it was kind of necessary.” 
    More than once Ethan’s chemical cocktails had him shaking uncontrollably and, at times, swatting at invisible tormenters. Then he’d lapse into a deep sleeps, up to 20 hours at a time.
    Anticipating that the chemo would eventually cost him his hair, Ethan ordered up a pre-emptive strike from a Medical Center nurse — an attitude-laden Mohawk.

    JESSE FOR A week got regular shots of human growth hormone “to throw his system into overdrive” for the transplant, which came on June 10. The boys weren’t even in the same hospital room, and Jesse was spared the industrial-strength needle that had plumbed his marrow 14 years earlier.
    Still, with arms strapped to his side, he spent more than five hours on a table while twin IVs took the blood from his veins. Next, a centrifuge isolated the life-giving stem cells (“magic blood”) and the next day, June 10, Ethan got the best gift a brother can give.
    Tests taken since show that Jesse’s healthy marrow has completely taken over.
    “The readings were the best I’ve ever had in my life,” said Ethan, whose blood has been monitored since he was 4.

    ETHAN CELEBRATED his 19th birthday in the hospital on June 15, surrounded by his family, which had all but moved to San Francisco to be by his side for the ordeal.
    He stayed at UCSF until July 24. That’s 58 days. The bill, Tammy says, will likely exceed $5 million.
    Fortunately, California Children’s Services — a safety-net program for young patients stricken with unusual diseases — has covered virtually all of Ethan’s medical costs. Friends and family have helped Eric, Tammy and younger brothers Colton, 13, and Joshua, 6, get by.
    But release from the medical center didn’t bring Ethan freedom. House arrest was more like it.
    He was dispatched to grandmother Alice Hinman’s place in Columbia with instructions to keep clear of every errant dust mote, crumb, water droplet or breath. A sterile, germ-free, Lysol-soaked clean zone is what the doctors ordered for Ethan, whose immune system is still on the mend.

 THE CHOICE was clear.
    “That’s the way Grandma’s place always is,” laughed Ethan.
    “He’s right,” agreed 66-year-old Alice Hinman, who with husband Marion, 69, also nursed Ethan back to heath 14 years ago. “We’re happy to help,”
    Since July, his regimen has included bottled water, pre-packaged food, a battery of pricey pills and enough Purel to scrub out a septic tank. The water, 72 cases worth, came courtesy of John Egger, Tammy’s boss at the Tuolumne Market.
    Although he’s taken a few on-line classes, Ethan spends much of his time playing video games and has acquired skills his brother swears are now superhuman.
    The highlight of his recovery so far was a Sept. 27 trip to see Jesse play in Summerville High’s 45-28 Homecoming win over Denair.

    “IT WAS AWESOME,” he said, “except that I had to wear a mask and people were keeping their distance. It’s like they thought I had swine flu or something.”
    Today Ethan is getting better. His hair — along with that of his father and brother, who cut theirs in support — is growing back. His marrow is still 100 percent Jesse. A PNH-related lung fungus — which for a time looked like it might require surgery, has abated. His doctors now say chances for a complete and prolonged recovery are excellent. Best of all, his immune system is nearly at full strength and he may be within days of release from quarantine.
    “Eat at Taco Bell and go to a movie,” Ethan grins without hesitation when asked what he will do when he is finally free.
    But putting your life on hold, fending off death for a second time, and realizing what a thin thread life sometimes hangs? Doesn’t it all take a toll?

    “IT IS WHAT it is,” shrugs Ethan, who will probably return to San Jose State next year and still hopes someday to crawl into a jet cockpit. “You can spend a lot of time worrying, but I try to take life as it comes.”
    Meanwhile, Jesse will take the field for Summerville when the 7-1 Bears take on Amador in Sutter Creek tonight. Since last summer, largely spent watching his younger brothers while Eric and Tammy were in San Francisco, much of the high school senior’s focus has been on football.
    As a special teams player, Jesse may toil in the shadow of stars on the talented 2009 Bear team. 
    But the biggest play of the year? Without a doubt, it’s Jesse’s handoff to his brother Ethan.