PeekabooNWA

Ryan’s Story

Posted on 02. Jan, 2009 by admin in Personal Stories

On November 3, 2006, my little boy Ryan, age 6, was complaining of a headache and a sinus infection. So, my wife Andrea took him to the doctor’s office for what we assumed would be a routine visit.

This trip to the doctor was far from routine. We were not offered a simple diagnosis and a prescription for an antibiotic. Instead, what we learned would change our lives forever. Ryan was diagnosed with a golf ball sized tumor behind his right eye.  When the doctor informed us of this, my wife just handed me the phone and went to hold Ryan.  He told us that he had already been in contact with the Arkansas Children’s Hospital (ACH) in Little Rock.  They had already begun administering medicines when the nurse came in and told us that the helicopter would be landing in about 30 minutes for Ryan.  We were stunned.

Within 24 hours of Ryan’s diagnosis, Ryan was in surgery fighting for his life.  They could not get all of the tumor and it was then that we heard the words “it’s Cancer.”  The doctor told us to make arrangements  because he did not expect Ryan to make it past the night. We had planned a lifetime for our little boy and this doctor was only giving him a night. Ryan fought, minute by minute, hour by hour, and day by day.

When that doctor made his rounds on Monday, he was surprised to see Ryan still with us.  Ryan was in a coma and on a cooling blanket to keep his temperature down so his body and brain could heal.  One week after Ryan came in to ACH, he woke up from his coma.  A couple of days later, we watched the movie Cars for the first time.  Ryan continued to get stronger.  Ten days after the surgery we found out what type of Cancer we were dealing with.  It was the most aggressive type. It was a GBM (Glio-Blastoma-Mutliforme).  It normally occurred in 45 year-old men, a far cry from the 6 year-old little boy we watched fight it.  We were told that Ryan had a 9% chance of survival for 5 years.  If they did another surgery to remove the rest of the tumor, it would increase his chances to 20%.

Ryan was in PICU for 13 days and then transferred to another room.  He began therapy with a quiet, ‘bring it on attitude,’ and always did more than expected.  He had become a human pin cushion. So, to eliminate the need for any more pokes and sticks he went through another surgery to insert a port under his skin that could be accessed when a needle would be needed for drawing  blood, IV’s, etc.

When Ryan was to begin radiation, the doctors thought that he would have to be sedated because a 6 year-old can’t lay still long enough for radiation.  Ryan surprised them.  He listened to his Rascal Flatts CD and played “possum.”  He spent a total of 43 days in ACH and then moved into the Ronald McDonald House.  He had to endure 30 radiation treatments and 42 Chemo treatments before he could return home to Pea Ridge.

All was well until February of 2007 when the doctors decided to go through with a second surgery to remove the remaining part of the tumor.  After 10 days in the hospital, Ryan was able to come home.  We enjoyed all the rest of 2007 and were amazed at how well he was doing.  The damage from the tumor and surgeries caused him to lose all movement in his left side, but he regained about 75% use in his arm and leg.  He played T-Ball for the Fighting Frogs.  He played Right field that was later renamed Ryan Field just for him.  It was an amazing summer that we ALL lived 110%.  While Ryan was in ACH, my daughter Ashtyn started collecting pop tabs at home and school to take to the Ronald McDonald House. The pop tabs are collected and recycled with proceeds going to the Ronald McDonald House. One pound of tabs is worth 57 cents, and one gallon of pop tabs (4,175 tabs) is worth $1.49 (www.rmhc.org).

Word spread and when we would go for Ryan’s clinic visit, we would take them with us.  We collected from all of our family, the school, our church, even from his Uncle Steve that was stationed in Iraq at the time.  They came in from everywhere.  After each T-Ball game, Ryan would dig through the trash cans pulling pop tabs off.  He told me that he wanted to help because so many people had helped him.

The rest of the year was full of living, he became a Cub Scout and did very well.  He  was an Ambassador for his class.  Things were going wonderful until he started getting weaker and having accidents.  He entered ACH again on February 11, 2008 and was released on February 19th, only to return on February 26th.  He continued to get weaker as time went on.  He lost the ability to use his left side again, he lost the ability to eat, and he lost the ability to talk.  He was fed through a tube but was still able to get his point across.  When the Nurse tried to throw away the Pedia-Sure can he was being fed with, he made it known that there was a problem.  He wanted the pop tab off of the can so he could give it to the RMH.  Ryan’s last visit to the RMH was on March 20, 2008 so he could see his pictures that they have on the Wall of Hope.  On March 22, Ryan’s NASCAR Hero, Ryan Newman, called him. As his health was failing, he received visits from the Easter Bunny and all of the doctors and nurses who had cared for him. His favorite nurse, Nurse Valerie came by to visit around 9pm and told him it would be okay, he did not have to fight any longer.  With a room full of family and friends, Ryan passed away at 1:49am on Easter Morning.  Never had a 7 year-old touched so many people and continues to do so through the retelling of his story.

My wife and I have started the Ryan Mondy D.A.S.H. Memorial Scholarship Endowment in affiliation with the Arkansas Community Foundation in Little Rock. The foundation benefits cancer patients and survivors and siblings of cancer patients, survivors, and for those that have also lost their battle with this terrible monster of a disease.  D.A.S.H. stands for  (Doing Anything Supportive Helps). D.A.S.H. refers to the space between your life and your death and Ryan made his D.A.S.H. count.    Please make your D.A.S.H. count. Cancer does not affect just the individual but the entire family.  If you would like to visit Ryan’s story, please visit www.caringbridge.org/visit/ryanmondy and leave us a note.

We read each posting and cherish the memories that we have from all the people that have left messages from all over the world.  My brother has written a book, Memoirs of Miracles, which is about Ryan and his struggle with cancer and his day to day life.  It is available at www.mondyfamily.com  A portion of the proceeds go to ACH, the RMH, and to The Ryan Mondy D.A.S.H. Memorial Scholarship Endowment.