Ronald McDonald House
An Unexpected Challenge – Kauai Family Fights Child’s Leukemia Together
By Gene Davis ~
Trinette Hepa, a 37–year–old single mother of four from Hanamaulu, Kauai, didn’t expect to be spending so much time in Honolulu the past few months. But when one of your children is diagnosed with a serious illness, you do whatever you have to, and you do it without hesitation.
Tishelle, Trinette’s nine–year–old daughter, was diagnosed with Leukemia on March 3, 2006. Now, they travel regularly to Honolulu for treatment and are familiar faces at the Ronald McDonald House, where they reside while on Oahu. They usually spend one–two weeks on Oahu each time they come.
Recently, I had a chance to sit down with both of them and talk a little about their situation and Tishelle’s sickness.
It all began back in January of 2006 when Tishelle began experiencing pain and weakness throughout her body. “My joints were hurting, and then my back was hurting,” Tishelle told me. “I couldn’t really run anymore.”
“She was at the point where she had a hard time even walking,” added Trinette. “She looked like she was deteriorating before my eyes, she lost a bunch of weight, and she was just in a lot of pain. She was constantly sleeping.”
Trinette took Tishelle to the doctors many times but, according to Trinette, she was diagnosed with everything from the flu, to anxiety attacks, to growing pains before they sought another opinion at Kapiolani Medical Center for Women & Children.
Tishelle’s first blood tests indicated that she was becoming anemic and then a bone aspiration revealed what was causing her symptoms. “The doctor called me, Tishelle and her father in, and told us straight up that she had Acute Lymphoblastic Leukemia (ALL)”, Trinette said. “From that day, everything went really fast.”
“On Kauai they don’t have a place where you can go and receive chemo, so that’s why we have to come to Oahu so much,” explained Trinette. “Tishelle’s treatment is in six phases over two and –a–half years. They give her one set of medicines for two months, then she rests for two weeks, and then they start another phase and give her different medicines for two months, and so forth.” She said that Tishelle was in so much pain at first, that they gave her morphine.
There was surgery to install a “Hickman” semi–permanent catheter in her chest to make it easier to inject medicine, and additional bone aspirations before beginning chemotherapy, but during the first cycle of treatment, she received steroid therapy along with her chemo and she felt much better and able to eat again.
Like most parents in her situation, Trinette suddenly had an insatiable appetite for information about ALL and spent much time during the initial weeks of treatment on the internet and asking questions of doctors and nurses.
“I learned how doctors closely monitor leukemia patients and are ready to adjust the dosages of chemo when certain red flags appear,” said Trinette. “Or ease up, if it’s appropriate. They don’t want to cause any unnecessary discomfort to the kids, because chemotherapy can be devastating. What Trinette has are good cells battling it out with confused cells and the chemotherapy doesn’t know the difference and kills all the cells.”Tishelle said she was also learning about how analyzing bloodwork unlocks the clues that lead to the most effective treatment plans. In fact, Tishelle is so interested that she now says she wants to be a pathologist. “I want to help people get over their fears of taking a blood test,” she said.
At home, Trinette also takes care of her 85–year–old, wheelchair–bound father, so when she is on Oahu with Tishelle that big responsibility falls on her other children, 13–year–old son, Tyren and her other two daughters, Tyra–Lynn, 15, and Tamara, 17. So, aside from fighting the leukemia, the biggest challenge for the Hepas is maintaining her family’s continuity back on Kauai. Raising her three teenagers and taking care of her disabled father is hard enough to do without trying to do it from another island. “My dad is on dialysis, and kids at home need guidance,” Trinette said. “Once in a while, we have to fly home just for the day to make sure everything is okay. But it puts a big strain on the finances. I have had no choice but to jack up the credit card.”
“I can only imagine where we would be financially if it weren’t for staying here at the Ronald McDonald House, said Trinette. “Hotels are so expensive and don’t have the healing atmosphere we have here. Plus, you have to rent a car and eat meals out. Here, you have all the privacy you need, but you can also enjoy this big, beautiful home, cook when you want, and be with other families that are going through similar experiences. The Ronald House offers security, comfort, and a staff that shows they really care. Being so far away from home, it is a real comfort to find friends here. It gives us such a sense of peace. It’s about parents helping other parents and children helping each other too. We’ve learned so much from the other families staying here.”
Tishelle said that she has made some new friends here, mentioning Ruthie, Meredith and Rica in particular. “It made me feel really good when Ruthie was getting her transplant, and she told her mom that she missed me and wanted to come back home to the Ronald McDonald House and play with me,” Tishelle said. “She knows I’m her friend.”
It has been nearly a year since Tishelle was diagnosed and began treatment, and she and her mom carry their burdens with utmost grace and with continuously positive attitudes. They are almost ready to begin the maintenance phase of her treatment and, barring a relapse, their trips to Oahu will be shorter and less frequent in the future. Of course, their “home–away–from–home” at the Ronald McDonald House will be here for them when they need it.