Aaron's Story - From the Beginning

Aaron was your typical 16 year old – he loved sports, played the drums in a band and was working as an umpire. In June 2015, he told us that he thought his wisdom teeth were coming in as he was having pain in his jaw. Being the good mom that I am - I said, “No, they aren’t-you are too young.” Aaron insisted that something was going on so we went to the dentist and then an oral surgeon, who did a biopsy. One week later, he was diagnosed with Sclerosing Rhabdomyosarcoma -a very rare sub group of Rhabdomyosarcoma. Our world was turned upside down – we have a kid with cancer. 
There are no words – it is surreal.

We live in Fort Wayne Indiana so we had to decide where to seek surgery and medical treatment – we choose Chicago. The next day we traveled to Chicago to meet the surgeon who would do his surgery, she was very confident in her ability to get the entire tumor and in her team to rebuild his jaw. It was a moment of relief in the midst of this surreal experience happening to our son.

The scan of Aaron's tumor
from the top

The next couple of weeks were spent getting scans, blood work, and making arrangements to be in Chicago for a couple of weeks. It gave us time to digest the news. We took our cues from Aaron and his great sense of humor. One day, he was asked to cut the grass and of course the reply is, "I can't cut the grass - I have cancer!" Seriously-that was not going to fly - he cut the grass!




In August of 2015, he underwent the extensive surgery to remove the tumor. In order to get to the tumor they had to remove part of his jaw which was rebuilt with his fibula. He spent 10 days in the hospital following surgery. He had to return for a second skin graft on his leg to aid in the healing process. It was a grueling recovery but he handled it like a pro - always making jokes and laughing at every opportunity. Surgery was a success, clear margins and no signs of cancer.

By November of 2015 he was healed enough to begin a 40 week chemo regimen. Chemo began with a rough start and by week 4 he ended up in the hospital for 4 weeks due to complications from chemo. After the 4 week hospital stay, we decided that the travel back and forth to Chicago was getting too difficult for Aaron – we needed to be closer to home. We transferred his care to the pediatric oncologist in Fort Wayne. The Chicago doctors would continue to be involved but all treatment would be in Fort Wayne.



Scans were done again– no signs of cancer. Aaron had chemo treatments  every week and was such a good sport -always joking and laughing with the nurses. His friends would come up to the hospital and they would have pizza and play video games. Aaron’s room
was the party room.



Aaron began to have pain in his arm in June 2016 – scans showed that he had a tumor on his humorous and pelvic bone – biopsy confirmed that the Sclerosing
Rhabdomyosarcoma had returned. He was a few weeks shy of completing chemo. It was discouraging as he was getting ready to start his senior year of high school. Once again, he handled it like a pro saying, "What do I need to do?" He began a different chemo regimen that is designed for relapse patients. The hope at this point was to stop the cancer spigot and slow down the growth of the current tumors. In August of 2016, we noticed a swelling on the side of his temple and of course our worst fears are confirmed– another tumor. By this time we are beginning to predict the scan news by the look on the doctor’s face as he walks in the door.

The next option for Aaron was a clinical trial using an immunotherapy drug. This was not without obstacles as he developed a pneumothorax which required a hospital stay. After one cycle, scans showed more tumors. He was taken out of the clinical trial. Aaron’s standard response each time we hear that there are more tumors is – “OK, let’s move on to the next option”. His next option was a targeted drug which he began in October 2016. We were told that this is the last option as his cancer keeps figuring out ways to continue to spread. This was the hardest news as Aaron could no longer say – what’s next? 

We chose to not sit around and wait to see if the targeted drug would work - we took to the internet and our loving and supportive network of friends and family. We learned of a center in Scottsdale AZ that works to get patients own immune system to attack the cancer. It was an alternative treatment which included an array of supplements. As soon as we did our research from home, Mike and Aaron flew out to Arizona to check it out. They were extremely encouraged so they stayed to begin the treatment. I flew out a few days later to join them. Sam joined us when his class schedule at Purdue allowed. Aaron went to the clinic everyday for treatment and he continued to take the targeted drug. We were in Arizona for about 5 weeks. all possible due to our wonderful support system. They started a go fund me to help with expenses, took care of things at home and provided support and love from afar.

Scans were done again January 6, 2016 and we see that familiar look –cancer has spread – no more options from the medical community. Once again, our network of friends stepped in and shared with us another alternative treatment. We checked it out and decided to go with it! Aaron did this treatment at home. It gave him renewed hope and encouragement. We choose to follow our own path and live every day to the fullest.


Aaron continued to work hard to reach his goal of graduating from high school. Unfortunately the
cancer had other plans. On February 20th he was admitted to Hospice home with pneumonia - we were told to call his loved ones for their final goodbye. Aaron had other plans. He battled back to reach his goal of going home. 

I remember when Aaron was a small child and I would wake him for daycare in the morning- his standard response was, "I am not done yet". He was not done yet. He went home on March 1st. We had the support of Hospice and our loving support system of friends and family. He was very weak but kept a smile on his face and kept up the good fight. Then on the morning of March 12th - he woke up early saying, "Mom, I am awake!" This was not normal. He fell back asleep and woke up again uttering the same words, "Mom, I am awake!" Then he says, "something is not right today - what is going on?" I took his hand and reassured him that he was fine but I knew in my heart that it was not right. He was with us but he was also with his grandpa, Aunt BerBer and cousin Melanie who had all passed away before him. We called Hospice and they sent a nurse - Mike and I decided he needed to be back at Hospice. Aaron's next words were, "I need to go to Hospice and now! I also need to go in an ambulance. When will they be here?" We summoned our close friends who met us and the ambulance at Hospice. Our friends got to hold his hand and tell him that he is loved. As soon as it was just Mike, Sam, and I in the room - Aaron took his last breath and peacefully went to heaven.

Aaron lived his 18 years of life with grace, dignity and laughter. He made an impact on everyone he came in contact with. He did not achieve his goal of graduating from high school but he achieved far more with his gift of laughter, friendship and love. He will be greatly missed.

I love you Aaron!

Mom