Serving in honor of Angel Ryder

“While we try to teach our children all about life, our children teach us what life is all about.”

–Angela Schwindt

On a cold fall day, in 2008, Ryder Thomas was brought into this world.  As cliché as this sounds, I can honestly say that I instantly fell in love. At the time, he was my only child and his arrival was very exciting for our family. The moment I found out I was pregnant I was ecstatic.  I was determined to be the best mom in the world. It is surreal how much love you can have for your child.

As with anything in life, things can change in an instant. Nothing in life is guaranteed. On November 28, 2010, Ryder woke up from a nap with a ping pong ball size lump on his neck. I panicked when I first saw it.  I rushed him to the emergency care clinic.  The doctors there were unsure of what it was and recommended I see our pediatrician.  They thought it was possibly a blocked salivary duct (what I wouldn’t give for a blocked salivary duct) or some type of infection. He was on antibiotics for seven weeks, but the mass continued to grow and eventually began to close his airway. Two months, multiple tests, IV antibiotics, a hospital stay and two surgeries later it was finally determined that Ryder had cancer.

Unfortunately, the lump in his neck was not just any cancer, but a rare and aggressive cancer called a malignant rhabdoid tumor. Due to the fast growing nature and location of this tumor Ryder had to be on machines to help him breath. Not only was the tumor pressing on Ryder’s airway, it was completely wrapped around the main blood vessels and nerves in his neck.  This made the tumor almost impossible to remove.  Ryder began chemotherapy immediately after diagnosis.  Our first exposure to inpatient cancer treatment left us in the hospital for almost six weeks.  Five of these weeks were spent in the intensive care unit connected to machines to ensure Ryder’s airway stayed open.

We had an amazing clinical team that developed a plan to attack this cancer just as aggressively as it was trying to attack my son.    Ryder endured numerous surgeries, received countless lab draws, was administered gallons of medications and we were required to stay in the hospital for about 15 days of every month.  On the days we weren’t in the hospital, often we were visiting the clinic, checking labs or receiving some type of outpatient treatment.

When your child has cancer, you will do anything to find a cure.  You would sell your soul if you thought it would help.  My life stopped in order to care for my child.  I stood directly in the flames with him.  I was there for every visit, every procedure and every treatment.  Ryder could not be left to fight this battle alone.  His battle was a team event.

As a result of the aggressive treatment and the frequent hospitalizations, I was not able to work.  I used up my PTO and medical leave quickly.  I was at a loss for how to make ends meet and pay the bills.  Even though our life had come to a crashing pause, the bills continued to come and the world around us seemed to move even faster than before.  There were medical bills, home health bills, bills for supplies and equipment….the list goes on and on.

Ryder’s tumor was in his neck and crushing all the important pieces in his throat.  Because of this, he was not able to eat “normal food”.  Ryder required tube feeding through a small hole in his abdomen.  The formula alone was thousands of dollars per month.  I remember receiving a denial claim from my insurance company for his tube feeding.  The letter stated that it was “not a medical necessity” and that they would not be covering this cost…talk about rage, confusion and tears.

Thankfully, through help of family, friends and our care team, I found an amazing organization, called Angels Among Us.  Angels Among Us provides financial and emotional support to families with a child battling cancer.  Money is provided directly to the account needed to provide assistance at this difficult time.  For Ryder and I, it meant receiving help to offset our mortgage payment.  Without the generosity of Angels Among Us and the individuals that donate to this charity, Ryder and I would have been forced to move out of our home.  In an already chaotic time, we would have been uprooted from the only bit of normalcy we had.  Angels Among Us was a blessing.  I can’t imagine dealing with Ryder’s treatments without their help. 

Through all of the chaos, Ryder continued to have a smile on his face.  He was filled with love, energy and the most tremendous spirit.  Ryder passed away on October 31st, 16 days after his 3rd birthday.  Our story is not intended to let you lose hope, it is intended to let you know that you are not alone.  That there are other people in the world that understand.

Our experience was exhausting.  It was devastating.  That being said, it has also helped me to truly value life.  I don’t take a single moment for granted.  While I wish I could change our outcome, I don’t regret anything.  I experienced so much love, so many hugs and really was able to dedicate my life to caring for my child.

As a result of our experiences, I’m in a place now where I want to give back.  I want to show support for families battling cancer.  I completely understand their frustration and how overwhelmed they feel each and every day.  Being a parent of a cancer kid is a club that no one should ever have to belong to.  Unfortunately, cancer is real and it affects 60-80 families in Nebraska each year.

It’s been eight years since Ryder’s cancer battle began.  I’ve taken a lot of time to heal and process everything that happened.  I’m in a good place and am constantly looking for ways to give back.  I received an outpouring of kindness and generosity during our fight.  Now is my chance to pay it forward.  This is why I am currently serving on the Angels Among Us Board of Directors.

This is my opportunity to make a difference in a big way.  Not only do I have the ability to give back financially, I can provide my experience (the good and the bad) so we can help to provide emotional support to families as well.  Cancer is a beast… impacts every single part of your life.  I am honored to serve on the Angels Among Us Board and hope that I can impact a number of lives over the coming years.

“Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever…”-

–Isak Dinesen