How would you describe Zeila?
Friends and family have described Zeila as fun, goofy, eccentric, and free-spirited. She doesn’t let things bother her for too long, which has helped her a lot these past eight months. This journey has proven her to also be brave, optimistic, and unassuming.
What has Zeila’s medical journey been like?
We took Zeila to her pediatrician for some mild symptoms only to learn her vitals were dangerously out of whack and we needed to admit her to Kapiolani right away. She was diagnosed with class IV lupus nephritis, requiring aggressive treatment to prevent further damage to her kidneys. Her 36-day hospital admittance led her to miss the last two weeks of school, a ballet performance she practiced for months on, a good chunk of her summer, and a family trip to Canada. Even after finally being discharged, Zeila continued weekend stays at the hospital every four weeks to receive chemotherapy infusions. She finished six cycles of chemo on Halloween. Since then we’ve been working with her doctors to reach remission, which requires a lot of medicine, constant monitoring, monthly labs, and doctor visits.
In some ways, Zeila has had to grow up faster than other 10-year-olds. Since lupus is a chronic illness, it’s something she’ll need to manage for the rest of her life, so she’s had to start taking on some responsibilities for her health and treatment. That’s a heavy weight to hold at 10 years old.
How did you hear about Make-A-Wish Hawaii? How has your journey been so far?
I didn’t know there was a Hawai’i-based foundation until Zeila was nominated by Meagan, one of the child life specialists at Kapiolani. When Meagan asked our permission to nominate Zeila, I thought it was a mistake, or that Zeila would be turned down for “not being sick enough” because I was under the impression that Make-A-Wish was only for terminally ill children. When I learned more about Make-A-Wish, saw all the children they’ve helped, and read stories from past and present wish families, I realized there are so many illnesses out there, and each of them have their own set of struggles that come along with it.
From the day in the hospital, when Zeila received her congratulatory package in the mail, to the surprise wish reveal at Ala Moana, Make-A-Wish has only brought joy to Zeila and our family.
Zeila’s wish is to go to Tokyo and visit the Ghibli Museum. How did she decide on this wish?
We’d have conversations about her favorite things/people/activities to try to narrow it down to something that would make her the happiest, bring her the most joy, and [create] memories that’ll last a lifetime. Her love of Studio Ghibli movies, Japanese food, and Japan itself, is how she made the decision to make visiting the Studio Ghibli Museum her wish.
When Zeila found out her wish was coming true, what was that moment like for her and for your whole family?
It was great to know we could give her good news, when the past eight months have been filled with the opposite, “You can’t go there.” “You can’t eat that.” “We have to do another test.” “We need to start a new medicine.” etc. so to know we could give her good news that has nothing to do with her condition was a relief and a true gift.
Zeila was so moved by her special surprise wish reveal at Ala Moana that for the first time ever, she cried tears of happiness. I hope every person is able to experience that kind of gratitude in their life, because it really does humble you and reminds you that people are good, and they care, even for a child and family they don’t even know.
What has the anticipation of her wish come true been like?
It’s been exciting for all of us! We’ve also used it to help push Zeila to learn to swallow pills. We told her it’ll be so much easier and quicker to take pills, which will mean more time to do fun stuff on her trip, and it worked! It’s also helped motivate her to stay healthy for her trip. She has a compromised immune system, so we need to be very cautious about any kind of infections, but she doesn’t like to wear masks, especially to school. However, when I mention her wish trip coming up, she’s less reluctant about using it since it’ll help ensure that she stays healthy. So, when they say it Make-A-Wish helps with their treatment, it really does!
What will a wish come true mean to Zeila? What will it mean to you as a family?
Zeila said, “It would mean that all that time I spent in the hospital feeling bad was worth it if I could go to my favorite place.”
I think it’s about the same for us as a family, it’s the light at the end of the tunnel. I always tell the girls that everything is temporary, both good and bad, and when you’re given the opportunity to experience something good you need to really take it all in so you can carry it with you when you're met with future hardships. This wish trip is that opportunity for us to make some awesome memories, because when we come back Zeila will still have lupus, and there will be hardships ahead. The girls need to know that good things happen all the time and that there’s good people out there that help make them happen, and this trip will teach them that. When you or a loved one suffers from a chronic illness you can forget that sometimes, so this trip will be a constant reminder for us.