Isle woman’s mar­row saves Cincin­nati girl

Honolulu Star-Advertiser - - LOCAL MONEY - By Do­minique Times dtimes@starad­ver­tiser.com

Kapolei res­i­dent Rose Anne Schucht never imag­ined that a sim­ple act done to help a friend in need of a bone mar­row trans­plant would end up sav­ing a young girl’s life.

Schucht, a for­mer Ihi­lani Re­sort and Spa em­ployee, joined the na­tional Be the Match bone mar­row registry af­ter her friend and co­worker, Shar­nell Onaga, was di­ag­nosed with leukemia in 2007. Nearly 750 Ihi­lani em­ploy­ees swabbed their cheeks to help Onaga, who needed a life­sav­ing trans­plant.

The chance of find­ing a match ranges from 1-in-540 to 1-in-10.5 mil­lion, de­pend­ing how com­mon the pa­tient’s tis­sue type is, ac­cord­ing to the Hawaii Bone Mar­row Donor Registry.

Two years be­fore and thou­sands of miles away in Los An­ge­les, Sam and Mina Cham­ber­lin wel­comed their first child into the world. “Ev­ery­thing was per­fect,” Mina Cham­ber­lin said of her daugh­ter, Maya. “I would never have known what was com­ing.”

As Maya grew, she was in the 95th per­centile for her height and weight and ap­peared to be pre­co­cious. By 18 months she knew her num­bers 1 through 20, and by age 3 was read­ing chap­ter books, her mother said.

Mina Cham­ber­lin kept de­tailed records of her daugh­ter’s health, in­clud­ing de­tails on how long and of­ten baby Maya breast­fed, her changes in weight. She had even kept an Ex­cel spread­sheet doc­u­ment­ing the daily tally of wet di­a­pers. “I don’t know if it was ma­ter­nal in­stincts or what, but I took ob­ses­sive notes, and I think when Maya got sick it was in­stru­men­tal in help­ing the doc­tors put things to­gether,” she said.

From in­fancy, Maya suf­fered high fevers ev­ery few weeks. Her blood work re­vealed that dur­ing those fevers her blood count was low, caus­ing her to be­come ane­mic, and her platelets — the cells in­volved with blood clot­ting — would drop.

“This kept hap­pen­ing over and over again, and I knew some­thing was wrong,” Cham­ber­lin said. “(Pe­di­a­tri­cians) said this is some­thing she will prob­a­bly grow out of as she gets older, but the fevers con­tin­ued.”

In 2009, af­ter a se­ries of blood tests and a re­view of Cham­ber­lin’s notes by an in­fec­tious-dis­ease doc­tor, the 4-year-old girl was di­ag­nosed with the

life-threat­en­ing im­mun­od­e­fi­ciency dis­ease known as HLH (hemophago­cytic lym­pho­his­ti­o­cy­to­sis).

“It was on 09/09/09 — I’ll never for­get the date,” Cham­ber­lin said. “They started her on steroids right away.”

HLH pa­tients have over­ac­tive white blood cells that ac­cu­mu­late on and at­tack healthy lymph tis­sue — the spleen, liver and lymph nodes — po­ten­tially dam­ag­ing vi­tal or­gans. The only ef­fec­tive treat­ment is a bone mar­row trans­plant.

When Maya’s health be­came sta­ble enough for her to travel, the Cham­ber­lins moved to Cincin­nati from L.A. to be near Cincin­nati Chil­dren’s Hospi­tal and Med­i­cal Cen­ter, a top hospi­tal for HLH treat­ment. Cham­ber­lain quit her job, and her hus­band took a job based in Chicago.

Three months af­ter ar­riv­ing in Cincin­nati, Maya found a mar­row trans­plant match and started chemo­ther­apy in prepa­ra­tion for the trans­plant. Af­ter re­ceiv­ing the new mar­row, Maya’s cell count rose above 90 per­cent, but her fam­ily’s ela­tion lasted only a few days.

“We were just fight­ing for her life,” Sam Cham­ber­lin said. “We were lean­ing on our faith, pray­ing and pray­ing, and then — it doesn’t work.”

Mina Cham­ber­lin said their hopes were shat­tered as they watched Maya’s cell count drop from 90 per­cent to 70, to 25 and, two weeks af­ter the trans­plant, zero.

At that time Maya kept a stack of her then-fa­vorite book se­ries, the Beren­stain Bears, by her bed­side and ev­ery day drew a new pic­ture of her fam­ily.

“One day I walked into Maya’s hospi­tal room, and she was read­ing her books and do­ing her art. She looked up at me and said, ‘I’m gonna make it,’” Sam Cham­ber­lin said, hold­ing back tears. “It was right then I knew Maya’s not go­ing away.”

Maya soon found an­other match in Schucht. The fam­ily was re­quired to wait a year be­fore the next trans­plant, and the girl un­der­went in­ten­si­fied chemo­ther­apy.

“When they told me the re­cip­i­ent was a 4-year-old child — I have a son the same age — so as a mom it just broke my heart,” she said.

Schucht said when she re­ceived the call, her mind flooded with mem­o­ries of Onaga, who died in 2007, leav­ing be­hind a hus­band and three daugh­ters. Onaga had found a mar­row do­na­tion match, but when the donor was con­tacted, he opted not to par­tic­i­pate.

While most mar­row ex­trac­tions are done through a blood draw, Schucht was put un­der anes­the­sia for mar­row ex­trac­tion from her pelvic bone. “It’s a bad myth that peo­ple think it’s painful,” she said. “They put you un­der the whole time, and I went home the next day.”

The sec­ond trans­plant was a suc­cess, and Maya, still a vo­ra­cious reader, is now a healthy 11-year-old play­ing soc­cer, bas­ket­ball and the drums start­ing sixth grade.

“The one and only rea­son why Maya sur­vived all this was be­cause of RoseAnne,” Mina Cham­ber­lin said. “If she wasn’t on the registry, I don’t know what the out­come would have been.”

The fam­ily first met Schucht a year af­ter Maya’s suc­cess­ful trans­plant. And last month, while on Oahu for va­ca­tion, the Cham­ber­lains met with Schucht again, ex­press­ing ea­ger­ness to share Maya’s story and to let oth­ers know that a cheek swab is all it takes to reg­is­ter and pos­si­bly save a life.

“A per­son who needs a trans­plant is fac­ing ei­ther re­ceiv­ing a trans­plant or dy­ing,” Sam Cham­ber­lin said. “When some­one does a mar­row trans­plant, they’re in­volved with sav­ing some­one’s life.”

GE­ORGE F. LEE / GLEE@STARAD­VER­TISER.COM

Maya Cham­ber­lin, 11, of Cincin­nati, left, was re­united with her bone mar­row trans­plant donor, Rose-Anne Schucht, a staff as­sis­tant for The In­ter­na­tional Broth­er­hood of Elec­tri­cal Work­ers 1357, dur­ing a trip to Oahu in July.

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