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).
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!
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).
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| 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!
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