Destinee's Story

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January 29, 2013

Life changed in a split second, what seemed to be normal was far from it.

My little girl, Destinee, just turned 5 years old this past January. For a few days, she complained of headaches and stomach aches. Each time I took her to the doctor or to the ER they said to just give her some Tylenol and stool softeners for her stomach aches. The headaches went away with the Tylenol. Therefore, we thought she may have just inherited the migraines that almost all of the women in our family have. 

One night Destinee woke up screaming and crying and saying "it hurts, it hurts." We were scared to death because she had never acted like this before. I decided I was going to take her to the ER because if she was screaming like that, then I thought there was definitely something wrong with her.

I tried to put her down so that I could get dressed and get her some shoes. However, when I stood her up on her legs, they were completely like rubber bands. Immediately, her legs buckled beneath her. We called the ambulance to come get us because by this time I was a mess and could not drive if I tried.

We were taken to a children’s hospital where she was given a CT scan of her head. The next person I saw was a neurosurgeon. He came in, sat down and said, “I am glad you brought her in, the scan showed a mass in the right ventricle and it is causing hydrocephalus and putting pressure on the brain.” This was the cause of my little girl’s headache and nausea. I was beside myself.

She was admitted to the hospital and I was told that further testing would be done the next morning. After a 4 hour MRI of her brain and spine, the neurosurgeon came in and told us she had a rare tumor called Atypical Teratoid/Rhabdoid Tumor or ATRT. I was devastated. There are only 60 cases in the world and only 14 of those patients are still alive. The surgeon told us they would remove the tumor in two days.

The day of the surgery we were all scared, but we knew she was in great hands. After an 8 hour surgery, the surgeon came to talk to us and said, “We removed the entire tumor, however she will need further treatment as the tumor was taken out of the brain on one side. When we got to see her after surgery, she looked good despite all the tubes and the drain coming out of her head. She was responsive and the first thing she said was "I love you mommy."  This melted my heart. Destinee was almost paralyzed on her left side. So, over the next week, she had physical therapy to regain her strength. At the end of the week she had recovered so well that the doctors released her to go home.

A week later, we returned to the hospital to meet with the oncologist for a treatment plan. Destinee will have radiation everyday for 5 to 6 weeks and then 4 stem cell transplants with a week of inpatient chemo in between once a month. But before we begin this treatment, she has to have a spinal tap, ultrasound, MRI, central line placement, and stem cell harvest. All of this in one week, as that is all the time we have before the treatment plan starts. The doctor says that this regimen was used with nine patients and eight of them are still alive after five years. We are hopeful that Destinee becomes the number 9 survivor.

This is going to be a very long journey, but I am up for the fight. The journey will be made even harder since I am 6 months pregnant and have to make sure I am taking care of myself as well. They will be testing the baby for the gene that causes ATRT after she is born. Destinee is excited about being a big sister and I think that is what is driving her to be strong every day.

Before Destinee’s diagnosis, she was a happy and healthy 5 year old- rarely having even a cold. Sometimes, my poor little girl sits and cries when she realizes she can't do something. Sometimes she says, "I want my old self back, I want my old life back." It's heartbreaking. We have to stay strong for her and stay positive that we will beat this thing.