Ava's Story

Ava's brain tumor was discovered on December 6th, 2011. She had a cold but kept complaining about her legs hurting and she would loose her balance causing her to fall down. She was also drooling a lot the week before and having trouble swallowing her food. She was having a number of outbursts and temper tantrums along with bad speech.

We took her to her doctor mainly because of the issue with her balance. After he watched her walk he was concerned with how she was leaning toward one side and ordered a CT scan. I thought he was being overly cautious but she had a pecan sized tumor on her pons (the middle of the brain stem).

Ava in November 2011 before her diagnosis.  You can tell the droopiness on the right side of her face and how her smile isn't symmetrical, both signs of DIPG. 

We rushed to Dells Children Hospital in Austin and Ava was admitted.  The next day she had an MRI followed by a biopsy the day after.  

A few days later we received her diagnosis of Diffused Intrinsic Pontine Glioma (DIPG). We were devastated. This is a very rare and aggressive tumor. It can't be removed because of the the location and the standard treatment of radiation does work, but then the tumor grows back and there is nothing that can be done at that point expect make the patient comfortable.  90% of children diagnosed with DIPG die within one year and the remaining children die within 3 years. 

Given that information, our family decided that we would take part in a clinical trial in Phoenix that adds a chemotherapy drug called cetuximab to the standard treatment of radiation.  We moved our family there from Texas and Ava received treatment for about six months.  She did well on the trial but during a MRI a new lesion was found on the front of her brain and numerous tumors in her spine.  She was removed from the trial because of the growth of these new tumors and our family came back home.  She recently finished a 10 day course of radiation to her spine and the top of her brain.  

On November 17th, 2012 Ava passed away with us at home.  She is missed so very much!

One Response to “Ava's Story”
  1. Anonymous says:

    I just want to tell you about my cousin, Ann Marie. She was diagnosed with a brain tumor when she was 5 years old. This was back in 1965 and of course not as much was known and the treatments were as sophisticated as now. After 85% of her cerebellum was removed, we were told that she had 6 months and would probably never walk again. Well they were right. She didn't walk again. Instead she hopped; she skipped; she jumped but I don't think there was a lot of walking in there. And instead of 6 months, God gave us another 2 years with Ann Marie. She never had pain after that first surgery because of stints that helped relieve the pressure. When the stint had to be replaced, she quietly went to join her God. Miracles do happen and prayers are answered -- not always the way we want them to be but just be thankful for every day you are given together. God bless.

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