This story begins on Nov 6th 2010. Ava was a healthy and inteligent little girl. She had turned 4 less then a month before. She had gone to her yearly check up a few weeks before and everything was fine. The day of the 6 th Ava had complained of a headache and dizziness and her pediatrician had said perhaps it was vertigo from an ear infection. At 2 am on the 7th Ava started to mumble,whine and throw up. She was touching the side of her head and shortly after she passed out her eyes rolling back. We thought she was having a seizure so we called 911 and we realized very quickly something was terribly wrong. She was entubated and the ER doctors and nurses surrounded her and worked very hard to stabilize her, and finally they came to tell us that she had a hemorraghe and they could see a tumor in her brain. They airlifted her to CHOP and there they gave us the worst news of all. IT was inoperable, and in a very delicate spot (the brain stem) they said nothing could be done.
The prognosis was bad but the hemorraghe was the biggest threat at the time, they did not know if she could make it 24 hours. A few days later Ava started breathing on her own and was taken out of the PICU and slowly Ava came out of the coma after weeks. She started recovering her movement on the left side, but she was paralized in the right side of her body . She started making sounds and saying "ma". Ava eventually went back to the old Ava, she was walking with assistance, speaking clearly and playing.
In July of 2011 we had a set back when she relapsed and her tumor grew 20 percent in one month. At the time they told us to go home "and get ready" we never lost hope and prayed very hard and we witnessed our second miracle, with the help of God her tumor shrunk without treatment, 2 weeks later, she was put on a experimental drug that kept her tumor stable (or perhaps it wasnt the drug at all) and in NOV of 2011 the MRI showed shrinkage.
We lived life to its fullest for a few really good months..we went on a cruise to the Bahamas and had alot of fun. Unfortunately Ava was not part of the very few that survive DIPG though she did live far beyond the average. In March her MRI showed growth and we made the extremely difficult decision to take her off chemo and enter her into an NIH trial. This treatment was an incredibly risky 10 hour surgery, which had only been done on three other children. On May 15, 2012, the doctors, essentially, injected an immunotoxin directly into my daughter’s brainstem.
Unfortunately, the tumor was relentless and the procedure was ineffective. Actually, after the surgery, Ava was much worse for a few weeks. She could not eat at all, nor could she talk or even hold her head up. Though she recovered about 80% of the functionality she had prior to the procedure, she never walked again.
In June, my angel graduated preschool with her class. She was so beautiful in her pink dress. We started with yet another chemo, given weekly, seeing the procedure didn’t work. By this point, our baby was so very weak, she was sleeping a lot, and she wasn’t talking anymore.
On Friday, July 13, 2012, Ava went into hospice. The doctors believed that she was suffering from a herniated brainstem, affecting her spinal cord. We knew our baby was really sick, but we never stopped praying for a miracle. One week later on a rainy and gray July 20th as she lay between her Mommy, Daddy and brother on the couch, our baby bird spread her wings and went to be with Jesus..
Our hearts will always carry the pain of losing our beautiful baby girl. Our souls long for the day when our family will be reunited. Until then, we will press on for other children still facing this gruesome disease.
If you have an idea for a fundraiser, would like to help in our next fundraiser or have questions in regards to DIPG brain tumors or treatment we would love to hear from you!