a little rae of hope »

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Jayden’s Story

I’m (Mom Hoku) from Molokai and I met Jade when I moved to Lahaina, Maui in 2006. We dated for a while before we had Jayden. I wasn’t supposed to be able to have children because of my POS (polycystic ovarian syndrome), but low and behold, I found out I was pregnant in 2010.

Jayden was born on January 22, 2011. I had complications—I have a cardio myopathy but they overruled my request for a C-Section and pushed for a natural birth. I ended up having an emergency C-Section. Luckily, Jayden was born a healthy baby boy. After Jayden’s birth, however, doctors found that was bleeding internally. I had to be rushed to the OR for them to re-open my stitches to find out where I was bleeding. I spent the next days in and out of consciousness and the doctors ended up removing my ovaries and uterus—so Jayden will be always an only child.

Last August, for five days Jayden had high fevers (over 102) and it didn’t diminish at all. Jayden has always been active, but suddenly he wasn’t showing any interest in his favorite activities. Instead of riding his bike around he stopped eating and was laying down all the time. My mommy instinct told me something was wrong even though doctors just told me it was a virus. By the fifth day of this, I took him to his pediatrician who had just returned to Maui and she ran tests and called the next day to say that he may have leukemia. I felt like the world had stopped.

We immediately flew over to Oahu where Jayden was diagnosed with ALL (Acute Lymphocytic Leukemia). The day was August 5, 2014.

Currently, Jayden is in maintenance. He is still receiving final taps every 3 months which includes a lumbar puncture.

He takes Bactrum on the weekends to prevent him from getting pneumonia and four days a week he gets chemo at home through an oral medicine.

Every Wednesday we have to check his ANC, or overall blood count, to make sure that he can still take his chemo at home. But if his ANC falls below 500 then he deemed “at risk” for getting another illness and chemo has to be put on hold until his blood count is back above 500.

If Jayden gets a fever, it’s an automatic med-evac flight to Kapiolani Medical Center on Oahu. He has to be held 24 hours after his fever breaks so that way they can keep him under surveillance.

There are a lot of inconveniences that comes with having a sick child on a neighbor island (not Oahu, the main Hawaiian island).

First, there are no facilities on Maui that administer chemo to children; only for adults. So when Jayden needs treatment, we have to go to Kapiolani for treatment over on Oahu.

We fly over to Oahu and that worries me. All the air on the airplanes is recycled so when someone even sneezes I think to myself “Is Jayden going to get sick?” It scares me every time, but I try to be strong for him.

My ticket and Jayden’s ticket is covered by insurance, but if his Dad Jade accompanies us, it’s up to $300 to go to Oahu for the day for Jayden’s treatment. It gets really expensive. Sometimes we have to wait in the hospital all day while they run tests because we have to wait for the insurance company to tell us where they are going to lodge us. Some of the places they put us in are unsafe—the cheap hotels are dirty with a lot of mold in the air. I try to spend as little time in those rooms as possible.

When we land in Oahu and when we leave, sometimes we have to pay for a cab out of our own pocket—which can cost up to $40 per trip.

Then there’s the food—eating out every day gets expensive, especially because all food that Jayden eats has to be made fresh.

Jayden is not able to have foods that been left out for two hours or more; all foods have to be fresh. Additionally, he is restricted to the indoors because of his low immune system. If we were to go out, he has to wear a mask. Since his diagnosis a year ago, he has spent about 95% of his time at home.

Jayden’s skin is very sensitive and he is highly prone to sunburns. If he does go outside in the sun, he has to be fully covered and wearing a hat and sunscreen. He can only be outside for an hour.

Because it’s so hot in Lahaina, he often gets rashes that are triggered by heat. It’s because of the chemo but because of the heat it becomes more uncomfortable.

At the end of the day, Jayden gives us hope. He’s so active and you can tell that he is so strong; he’s a fighter.

And I pray a lot. God has given me hope and strength.

To donate to this family click here.

A Huge thank you to Angela Nelson Photography for these amazing images.
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