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Aidan’s Story

Meet Our Angel ~ AIDAN

Every parent will tell you that their child is special (that’s OK-I’m sure they are), but Aidan 

 

September of 2013 was an exciting and fun month for Aidan.  He was starting preschool for the very first time, he was playing soccer for the community Athletic Club and he was another month closer to his 4th birthday in November.  The month didn’t start out that way.  Aidan was outside playing baseball with his big brother Ryan and his friends. (Aidan described in his cute little voice “I was the guy who does this” and he would then squat and squint his eyes.)  Unfortunately, “Catcher” Aidan forgot to keep squatting and stood up right when his brother swung the wiffle ball bat.  Aidan was OK – we watched for signs of a concussion – thankfully he just had a “shiner”.  Oh! and Aidan was proud of it!  🙂

 
Aidan couldn’t wait to go to school and he loved playing soccer, he couldn’t be stopped. 
 

Symptoms

The end of September/beginning of October, we noticed that Aidan started tripping when he would run – he was a 3 year old – tripping is normal…right?  He then started asking us to hold his hand when he would walk – to the kitchen, upstairs, outside… as a parent, you brush those kind of things off because kids do quirky things like that.  When he would walk down the hallway, he said he felt like he was going to fall and he just seemed to be feeling under the weather. Thinking maybe he had an inner ear infection, we took him to the pediatrician.  He was checked and the doctor said he was fine and was probably just being a clumsy 3 year old. 
 
The week following, Aidan seemed to be getting worse. His preschool teacher said he didn’t want to go outside to the playground and seemed really scared.  He went from actively playing soccer, to asking his coach to hold his hand to run.  I will never forget the last soccer game Aidan played on October 5th  – we looked at one another and said – something just isn’t right.  A couple days later, we noticed he started dropping things from his left hand and his face looked like it was drooping a little.  (Aidan was getting increasing worse in a week’s time).  My husband and I then rememebered the bat episode and immediately called the doctor with the fear he was suffering from a concusision or some type of swelling in his brain. 
 
After seeing the doctor, one week after the initial appointment, we were told to take Aidan to get a catscan.  Our pediatrician called that evening and said it was very important to take Aidan down to CHOP for a MRI the next day – the CT showed some size differences in an area of the brain and the MRI would tell us more.   We NEVER thought it was something to be worried about – what parent ever thinks something like this could happen!?  
 
The soonest they could see us at CHOP for the MRI was 5pm on Friday, October 11, 2013 – A day we will NEVER forget.  We didn’t even learn the doctor was concerned until Aidan was taken for the MRI.  We waited and now our anxiety was building.  When the anestiologist came to get us – he just had this somber look. and at the exact same time, our pediatrician was calling my cell phone – we knew something was BAD.  They took us back to an empty patient room and then walked in the Neuro-Oncologist.   
 
We were told Aidan had a very serious tumor – an incurable and inoperable brain stem tumor, Diffuse Intrinsic Pontine Glioma (DIPG), one of the worst!  At that point, I no longer heard anything more she said, (after they gave me some oxygen and I started breathing regularly, I realized I had been hyperventilating.)  Now, we had to pull it together and be strong for Aidan, who was waiting for us in a hosptial bed.  We also had the grueling task of calling our family with the devastating news.
 

Life would never be the same!

 
Now, we needed to learn more about this “serial killer” also known as DIPG. You can learn more about this devastating disease   Imagine being told there is nothing we can do to save your child’s life…well that is exactly what happened the next day.  We learned that chemotherapy was ineffective with this tumor because& without radiation therapy; Aidan was only given weeks to live.  
 
He courageously completed 30 days of radiation at CHOP.  (It is important to mention that when a 4 year old or any child that cannot hold completely still for the 5 min and as a result had tumor reduction, but doctors made it clear this was NOT a cure & the tumor would return aggressively. With very few clinical trial options, we enrolled Aidan was enrolled in a study in Pittsburgh, PA. 
In May 2014, as we suspected, Aidan’s tumor was beginning to grow again; therefore, he was no longer eligible for the Pittsburgh clinical study. Unfortunately, this left us with no options – trial drugs wouldn’t be safe to administer to Aidan based on his current state. We knew what was most important to us and that was to bring Aidan home where we could surround him with Love, Laughter, & Joy.
In August 2014, just 10 months after diagnosis, Aidan transitioned peacefully at home surrounded by his loving family. Aidan was a happy, healthy, 4 year old little boy up til diagnosis. There are no known causes or cure for this tumor.  He will be forever missed.

 

One month prior to Aidan turning 4, he was diagnosed with an incurable and inoperable brain stem tumor, Diffuse Intrinsic Pontine Glioma (DIPG). Without radiation, Aidan only had weeks to live. He courageously completed 30 days of radiation at CHOP and as a result had significant tumor reduction, but since we knew this was NO CURE, he was enrolled in a clinical study in Pittsburgh, PA. Aidan traveled to Pittsburgh Children’s Hospital every 3 weeks to receive a trial vaccine & MRIs. (The goal of the vaccine is to te ach the body to attack the tumor cells.) 

 
In May, as we suspected, the tumor was beginning to grow again; therefore, he was no longer eligible for the study he was enrolled in. We were left with very few options – trial drugs wouldn’t be safe to administer based on his current state. What was most important to us, was to bring Aidan home where he was always comfortable, felt safe and we all surrounded him with Love, Laughter, & Joy. 
We never gave up HOPE, but since there is no cure or treatment, we were forced to watch as DIPG robbed Aidan of his precious life. This disease took ALL of Aidan’s mobility, his voice, his body, his ability to breathe, BUT Aidan continued to AMAZE us with his bravery.
Watching Aidan’s strength – inspired us and gave us the strength to never give up. It is now our mission to help educate families, businesses, & organizations of the ALARMING childhood cancer statistics while raising money for more research. 
 
Aidan earned his much deserved Angel wings August 2014 – where he LOVED to be – at home surrounded by so much love
 
 
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