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On January 23, 2012 our beautiful son, Ryan was diagnosed with an inoperable, incurable brain stem tumor called a Diffuse Intrinsic Pontine Glioma or DIPG for short. On that day, his doctor’s informed Chad and I, that Ryan had approximately 9 to 18 months to live. Devastation doesn’t begin to describe the wash of overwhelming emotions we felt. Knowing there was no hope to save our sweet boy’s life we agreed to a clinical drug trial along with radiation therapy to prolong the inevitable.


Aside from a miracle the best possible outcome would be to shrink the tumor growing inside his brain so that we could have him with us a little longer. Our thought was if we can’t save our son, then at least he might be a part of the research that may someday save another child with his same diagnosis. As a family we traveled to Bethesda, Maryland for seven weeks to participate in the clinical drug trial. We were able to drive home on the weekends to reunite with family and friends and to give Ryan the much deserved break from his rigorous treatments.


Ryan’s treatments were performed in the basement of the clinical building where he would receive his special “milk”. Obviously, it wasn’t milk, but a medicine that was administered to cause Ryan to fall in a lifeless slumber in my arms so he could positioned on the exam table for the radiation therapy. He cried out for me every time e received this “milk” as if he knew what they did while he was asleep. Thankfully he was never aware of the custom fit mask over his little head and face that were then secured to the treatment table so that he was unable to move.


This routine, went on for six long weeks. He would awaken in the morning unable to eat or drink as a result of the impending sedation. The after effects of the anesthesia would cause him to be agitated, hungry and thirsty. It was very traumatizing to Ryan as well as all of us. We made it a point to treat him to anything he wanted after each treatment. His choices ranged from eggs, steak, lobster or just ice cream. Anything he wanted. In our minds he earned it.


After the six weeks of treatment, we felt as though we received a miracle when were give the news that Ryan’s tumor had significantly shrunk. However, this wonderful news was short lived. Soon after, he began to experience symptoms again. We were crushed by this news. The routine of the special “milk” was upon us again as another MRI was performed. The MRI revealed brain swelling secondary to the radiation therapy. This was explained to us as being a normal side effect of radiation. Even so, this meant he would have to increase his steroid dosage which also meant he would again become irritable with an insatiable appetite. The good news was that the tumor was not growing and the symptoms were a result of brain swelling.


We tried to be as normal as possible and continue with our appointments at two separate hospitals. Ryan had weekly blood draws and other testing so that we could remain in the clinical trial. During that time, we did our best to fulfill Ryan’s bucket list. It was our goal to give and do all that we could for him. He seemed happy then, but still heavily medicated, which caused him to never quite be himself again.


The week of July 16, 2012, Ryan’s symptoms began worsening. An MRI showed tumor regrowth and this time it was more aggressive and quicker than before. We were out of options and the inevitable was upon us. He would soon be taken from us forever. There was little the doctors could do for him at this point. There was the possibility of another drug that may or may not help. It would require us to travel to Hershey every day to have his port accessed for administration of a new drug with no way of knowing if it would prove helpful or not. The hardest thing to do as a parent, a caregiver, a mother is to decide to continue with preventative care where the odds are against the medication helping and spending hours upon hours in a hospital only to realize the same outcome of death. Or we could turn to comfort care, so that every day from that point forward till the end he would be comfortable and at home with his family surrounding him and finding a way to cherish every second we got to be together.


With everyday thereafter, the symptoms got worse. He couldn’t use his right hand very well. He started to trip over his feet and fall down. But he was determined though, if he wanted something he would cock his head to the side so, he could see properly and march as best he could tripping and falling and getting back up to start all over again.


He didn’t suffer long. Ryan peacefully left us at 3:05AM on Friday August 10, 2012. Mom and dad said their goodbyes and woke his sister Ellie to say hers. Just after she gave him a hug and told him she loved him, Ryan took his last breath here on earth and earned his wings as an angel. An angel watches over us every day and guides us to continue our fight.


He will always be our angel that guides us to help other children with cancer. But we cannot help others without your help.



Sincerely,


Rebecca Arnold

Ryan’s Mama