Gift of Life: Santaquin mom searching for a bone marrow match adds 1200 names to registry – Daily Herald
By NEVAGiles23
Across Utah County, there are people waiting for donations, whether it is a needed organ, bone marrow or blood that will save their lives. Others have given these life-saving donations to complete strangers. Gift of Life highlights those involved in the medical donation process.
They found a perfect match for Robyn Marchant on a bone marrow registry. Robyn, a Santaquin mom with leukemia, needed a stem cell transplant if she wanted to live.
But they were never able to get ahold of the match.
That was hard, Robyn said, sitting on a couch in the Huntsman Cancer Institute in Salt Lake City, next to a window that doesnt open and wearing a paisley headscarf. That was in March, at the beginning of my search.
There were two 9/10 matches on the Be The Match bone marrow registry. Doctors preferred her brothers blood work, and they decided to do the transplant with his half match. Its their best option, even if it isnt ideal.
But a lack of a match didnt stop Robyns family from hosting six drives, including ones in Provo and Spanish Fork, and adding more than 1,200 names to the bone marrow registry. They suspect theres more who have registered to Be the Match because of her, but havent used Robyns name as the promo code to link it to her name.
They might not be able to help my daughter, but I am praying there is somebody in the country who is doing the same thing to help my girl, said Shelly Bills, Robyns mother who has organized registration drives.
If Robyns transplant doesnt take, shell need another one.
And even if she doesnt need another donor from the registry, theyre hoping the names theyve added will save someone elses life.
Theres a lot of people who have never heard of the Be the Match Registry, which in all honesty we have never heard about until this happened, and now our whole town down in Santaquin knows about it, said Kevin, Robyns husband.
Diagnosis
Robyn, mom to 9-year-old Kassidy, 6-year-old Korbin, 4-year-old McKinley and 1-year-old McKellan, is a busy woman who served as a former Relief Society president for her ward in The Church of Jesus Christ of Latter-day Saints.
She started to feel really tired at the end of January and brushed it off as being worn out from having a baby. Things started to get worse to the point where shed feel like she was going to pass out when she climbed up the stairs.
It was originally thought to be anemia, but that treatment wasnt changing anything. Then her spleen started to ache.
Kevin, a pharmacist, told Robyns doctor he suspected his wife had leukemia.
Nobody expects a 31-year-old mom of four kids to get cancer, Robyn said. We were all just so overwhelmed.
She didnt ask for percentages, and only knew she wasnt going to live without a stem cell transplant.
As the oldest, Kassidy started to piece things together. The kids, who knew a neighborhood child who died after being diagnosed with cancer, were devastated.
Our kids immediately associate cancer with death, which made it hard, Kevin said.
According to Be the Match, 70 percent of patients who need a bone marrow transplant dont have a fully matched donor in their family, and 14,000 patients a year will need a transplant for someone outside their family.
For Robyn, it wasnt supposed to be hard to find someone.
The doctors at the beginning said we wont have trouble finding you a match, Robyn said. Youre Caucasian, female, of western descent, theres tons of people out there. Well find you a match. But apparently Im one in a million because we just couldnt find one.
Finding a match
Bills woke up in the middle of the night a few weeks after Robyns diagnosis knowing she had to do something.
Even though they dont plan to hold another registration drive for a while, Bills is still handing out registration kits, and a friend started the hashtag #SwabbinForRobyn.
My mind keeps saying people are so willing, they just dont know, they dont know there is something they can do to save a life, Bills said.
Shes also encouraging people already on the registry to update their contact information so another family doesnt have the same experience theyve had.
Signing up for the registry is quick process that requires a cheek swab to add a donors tissue type to the registry. Once signed up, they will remain on the registry until they are 61 or request to be removed.
Registration can be done online at Join.BeTheMatch.org. To link the registration to Robyns name, use the promo code Robyn.
Potential donors have to be between the ages of 18 and 44 and willing to donate to any patient in need.
If a match is made, there are two ways to donate. One way is through a peripheral blood stem cell donation, a nonsurgical outpatient procedure. The other is a marrow donation, a surgical, outpatient procedure that is performed in an operating room.
Only a small percentage of people on the registry will ever be called to be a match.
As she showed up to a registration drive held in a Brigham Young University LDS stake (against advice to stay away because of her compromised immune system), Robyn was touched to see hundreds of people sign up for the registry.
She didnt know a single one of them.
These kids didnt have a clue who I was, but they were willing to do something, Robyn said.
Whats next
Robyn received her brothers transplant at the end of May. Since then, shes had side effects like diarrhea, mouth sores down her throat, insomnia and nausea.
Shell be in the hospital for a couple more weeks. After that, if the transplant isnt rejected, shell have to be constantly monitored by an adult for 100 days. If all goes well, that should be it.
Her hospital room is filled with pictures of her family and has a large window that looks out to the mountain. But for now, shes not supposed to leave the unit.
Lots of pokes and prods and illnesses, I can handle that, Robyn said. But being away from my kids is hard.
She video chats with her kids at least twice a day and reads to them from the Harry Potter books before bedtime.
Shes learning to cross-stitch. Her current project, a quote from Hogwarts Headmaster Albus Dumbledore in Harry Potter and the Prisoner of Azkaban, reminds them that happiness can be found, even in the darkest of times, if one only remembers to turn on the light.
Kevin is getting help taking care of the kids from family. On weekends, they make the drive up to Salt Lake City to visit Robyn.
For now, theyre focusing on staying positive.
We are trading 2017 so we can have the rest of our lives with her, Kevin said.
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