What It’s Like To: Nurture a Child Who Has Had a Brain Tumor

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Photo credit: Emily J. Davis

 

Hildie Vega of Fountain Valley augments standard medical treatment for her daughter Olivianna with help from MaxLove Project.

She’s 2. She was born at exactly 35 weeks. She was tiny, 3 pounds, so she had to stay in the hospital for about three weeks just to grow a little. Other than that, she was healthy.

When she was around 3 months, she just started acting differently. She started staying awake through the night, not sleeping at all. She got worse and worse.

After several trips to the pediatrician and to the ER, one night she started to projectile vomit. That’s when I grabbed her and told my husband we needed to go to the ER at CHOC. I said, “We’re not going to leave until we find out what’s wrong.”

We knew something was horribly wrong when we were in the room waiting and they put in the IV for fluids and a catheter. A whole group came into the room—doctors from other floors, an oncology doctor, ER doctors, two nurses, we had a charge nurse—a whole team came in to give us the results.

The ER doctor put his hand on my shoulder and said, “You need to sit down, Mom.” I lost it. He didn’t even say what it was, but in a way I knew. He said, “She has a mass in her head. We don’t know what it is. For her size head, it’s a pretty large mass. We need to get that out as soon as possible.”

They took her in for surgery three days later. They said everything was great; they were able to scrape out almost 99 percent of it. In her neurosurgeon’s words, it was “beautiful.”

“But,” he said, “we were standing back admiring how everything was so great when she started hemorrhaging.” So she had a brain bleed, which is a stroke, and it may be that which affected her vision.

Altogether, she’s been put under 20 times in a year and a half. She’s been through so much. She’s had a total of nine surgeries. She had to get a shunt in her head that she has on the right side to keep the fluid flowing and draining. She’s had 12 MRIs.

When we got home from the hospital after her first big stay, her surgeon called us—Dr. William Loudon. He told me that MaxLove was starting a new project called The Ohana Project, and they help families like us. It was founded by Audra and Justin Wilford, whose son Max had a brain tumor as well. So they’ve been there.

Dr. Loudon just felt that Olivianna would benefit from it. He knew we were completely lost. We didn’t know what to do. He saw that it was rough on her dad and me. He would want one thing for her, but I was like, “No, we’re doing it this way.”

Eventually, her dad was able to talk with Justin and get some insight into when to let Mom run the show. (Laughs) I was able to reach out to Audra. It just really helped us to talk to them one-on-one or through MaxLove events and the courses.

Through MaxLove, Olivianna has been able to get treated with acupuncture and heat therapy. She gets cupping on her back and on her tummy. She gets massages with oils and creams.

It makes a big difference.

When she gets the treatment, that’s the only night a week she sleeps and she will finish her bottles. It’s such a great thing. It’s amazing what they do for these kiddos.

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