Ryan's Story
by Rochanna Thomas

 My name is Rochanna Thomas. I would like  to share this story on behalf of my daughter, Ryan Jessica Walker.

 I am sharing it because she died of a  rare disease, Malignant Thymoma, which is often missed in the diagnosis  process, and is just as often mis-diagnosed. Her story is a sad story, but when  you read it,
hopefully you will come away with a better sense of how to be  aware of the symptoms of this disease and how to advocate for a treatment and  cure. 

Ryan  was my only child; a very intelligent, outgoing and vivacious “Princess”. She  was full of hope and happiness, with a warm smile and a welcoming presence, who  embraced life to its fullest and was my world. Aside from being asthmatic, Ryan  was a relatively healthy child — very active in soccer, swimming, volleyball,  Girl Scouts and even in ballroom dancing competition, but all of that would soon  change.

At  the age of 11 Ryan came down with what seemed to be a simple cold. When the  cold seemed to linger longer than it should have, I took her to see her  pediatrician who diagnosed her as having a sinus and viral infection. We did  everything that the doctor ordered, and Ryan took the prescribed medication. She  continued to attend school, but it just seemed that the medicine wasn’t working  fast enough. We had a follow up appointment exactly one week after our initial  visit. Not only was the cold lingering, but now her breathing pattern was off. The  doctor assured me that the viral infection caused her asthma to flare up, and  told me to start her back on nebulizing treatment, which I did. It seemed to be  working, but then I noticed a swelling in her neck. I called the doctor who  told me it could be a side effect from the penicillin and to discontinue it. Nothing  seemed unusual. We went on with our night  — having dinner, doing homework, our  normal chat and off to bed. 

The  next morning was business as usual — breakfast, getting ourselves together for  school and work — but Ryan became nauseous. I suggested she stay home, and  like most kids, she was excited to just have a day off. As a parent you know  when your child is just not right, although Ryan never
complained or suggested that  anything was truly wrong. She watched television, I had her do homework  exercises on the computer, and nothing was different. The only change was her  appetite which I figured was because of her cold. Who really could have any  taste buds? As the day turned into night Ryan was still active, laughing and  joking around. Then, all of a sudden she said, “Mommy I
want to lie in your bed.”  I didn’t mind, but noticed a bead of sweat across her forehead, and her cold  limbs indicated that it was time to go to the ER.  My Ryan, being a little  feisty, said, “Mommy I’m fine. I don’t need to go.” I said we should just go to  make sure. She said, “Fine, but I need to go to the
bathroom first.” Then  everything changed within seconds. My baby girl passed out on the way to the  bathroom. 
           
 I frantically called the paramedics as  her Dad proceeded to do CPR. Everything was happening so fast I couldn’t wrap  my mind around it. As we were on the way to the hospital I was hoping, wishing,  praying that she would be fine. I NEVER thought the worst. The doctors informed  me they were able to get her stabilized, but her condition was critical. I thought,  “Okay, my baby will pull through.” My
daughter crashed 3 times within the 2  hours we were there, and at the last attempt she simply didn’t make it. As a  parent your worst fear is losing a child, and that became my reality on  November 30, 2010, exactly one month before her 12th birthday. 

As I gathered around her with family and  friends I was still in disbelief — shocked, everything you can imagine. My baby  girl was no longer here. “How could this happen?” I asked. She only had a viral  infection. The doctors told me it was respiratory failure due to an asthma  attack. I was adamant, telling them she didn’t have an attack. A nurse took me  aside and suggested I get an autopsy done, for he didn’t feel it was asthma-related.  I followed through with this because I had to know. As a parent you blame  yourself. I kept asking myself what I could have missed. What didn’t I do? I  was her protector and I failed. I was a ball of emotional confusion.

As we were making final arrangements, to  my surprise a cause of death was determined. Listed on her certificate was  “Malignant Thymoma”  I was stunned! How  could my daughter have had cancer without my knowledge? Once I received the  fully detailed autopsy report I found the cancer had spread throughout Ryan’s  body. In her eleven years she was never hospitalized, never had an asthma  attack. Although she carried her inhaler, it was barely used  — only when she  caught cold which wasn’t often. Nothing would have indicated or alerted me that  she was suffering from such a debilitating  disease.

The  more research I did or could do, I found this to be a rare and often  misdiagnosed cancer. The first thought that came to mind was perhaps the tumor  started when her asthma was diagnosed. Was this when cancer started taking over  her body? 

My goal is to spread the word and develop more  awareness, more research, and more funding to help prevent others from being  blindsided the way we were.