BY RON ELAND
North Hawaii News
For the most part, Jessica Guilloz is like any other 11 year old. She likes to play with her family and friends, go to the beach and ride horses.
But unlike most kids her age, Jessica has spent her fair share of time inside of hospitals over the last few months. That’s because she’s in need of a bone marrow transplant.
In March, she was diagnosed with Fanconi anemaia which according to fanconi.org is “an inherited type of anemia that leads to bone marrow failure. Though considered primarily a blood disease, FA may affect all systems of the body. It is a complex and chronic disorder that is psychologically demanding. FA is also a cancer-prone disease, affecting patients decades earlier than the general population.”
According to her mother, Nahua, Jessica got the flu before Christmas and never got her coloring back. She said she was always very tired, often cold and lost her appetite and eventually lost weight. And, they noticed she was falling down a lot.
“We took her to the doctor and they ran some tests,” she said. “They were horrified. They said, ‘She’s near death, did you know that?’ I was shocked at how severe it was. Jessica was frightened so that meant I couldn’t show any reaction for her sake.”
She said her platelet levels were very low and that Jessica’s bone marrow levels had dropped to just 5 percent So, she was flown to Kapiolani Medical Center on Oahu where a barrage of tests were conducted. Doctors knew it was some kind of anemia but it took nearly a month before they concluded it was Fanconi anemia, a very rare, recessive genetic disorder. The disease can be passed on to a child when both parents are carriers of the gene. And even then, the percentage is small that it will be passed on. Jessica’s younger sister, Malia, has been tested and is fine.
The disease is so rare that Kapiolani hadn’t seen a case of Fanconi is nearly five years.
“When they told us what it was we were relieved it wasn’t cancer,” said Jessica’s father, Jeff. “But at the same time, it’s something so rare that they (Kapiolani) has had just one case in five years. You can’t help but ask, ‘so now what?’ It’s like going from the frying pan into the fire. You get all these thoughts going through your head like she may die. What will I do without my oldest daughter?”
Jeff, a retired Marine who saw three tours of duty, said it’s his family’s strong faith that has helped get them through the past few months.
“But it’s still tough to watch your 11 year old get tested and poked with needles,” he said. “Then she looks up at you and says, ‘Daddy, I’m tired of this, I want to go home.’ It’s one of those things you thought would never happen to your family. But I trust the Lord with all my heart and that’s where I’m at right now.”
As mentioned, Jessica is in need of a bone marrow transplant. This past weekend, drives were held in Waimea and Kona (where the family lives) to find a match. Those who signed up and took the simple cheek swab test, will now be put on the national registry as a bone marrow donor.
Roy Yanashiro, a recruitment specialist for the Hawaii Bone Marrow Donor Registry, said of the nine million donors registered nationwide, more than six million of those are Caucasians.
“We really try hard to get more minorities to sign up,” he said, adding that because of Hawaii’s diverse ethnic population, it’s often hard to find matches here.
In fact, because of Nahua’s mixed heritage of Hawaiian, Portuguese, French and others, Jessica has only a 3 percent chance of finding a match. Yanashiro said that common sense would say since marrow is based on a person’s genetics, a sibling would be a perfect match. But, only 30 percent of siblings are matches. And sadly for Jessica, her sister Malia is not one.
“That was very disappointing — we really hoped Malia was going to be a match,” said Nahua, a longtime employee at Parker Ranch. “It’s scary because we’re worried whether or not we’ll find a match. We have strong faith so we’re staying optimistic and praying that someone out there will be a match.”
Yanashiro said it’s important for people to become potential donors whether or not they know the person in need.
“The thing we stress the most is that we have patients all over the country,” he said. “The worst thing is that they give someone false hope by being a match but backing out because it isn’t someone they know. So I tell them, ‘please, if you’re not willing to help anyone, don’t get tested.’”
To date, Jessica has had three blood transfusions. And even though they take nearly five hours to complete, Nahua said her daughter is like her old self again for the next two to three weeks.
“It’s like a 180-degree change,” she said. “It’s a complete turnaround. She has a lot of energy, isn’t always cold and gets her appetite back.”
Nahua added that doctors have told them that there’s not a huge hurry to get a marrow transplant but that after 10 transfusions, the rejection rate following a transplant increases. They were also told that a bone marrow transplant was pretty much the only alternative. There are two drugs on the market that may work but one is a male growth hormone and the other a diabetic drug that would require daily injections.
Jeff said he’s encouraged at the fact that the time between the transfusions has continued to increase. But for Jessica, the time between visits is never long enough.
“I really don’t like it — it’s boring,” she said. “All I do is watch TV. And when I get the blood, I’m itchy all over. But afterwards, I feel great. I’m perky and I want to run and play.”
Jessica, a fifth grader at Kona Christian Academy, said she first noticed something may be wrong while at school.
“I was walking real slow. My legs started to give out on me. I couldn’t keep up with my classmates,” she said.
As for what she’d like to say to the dozens who turned out for the donor drive, Jessica said, “I’d say thank you to them. And even if they’re not a match, thank you for coming to see if you are a match.”
For more information, visit www.bethematch.org.