I am member of a rare and elite group I call “Club Med.” It isn't the Club Med that takes you away to exotic vacation destinations. My Club Med instead is made up of families like mine whose lives have been changed forever by our children's life-threatening medical conditions. I did not choose to join Club Med --- we got an automatic membership on April 9, 2006 when my 9-year-old son Austin was diagnosed with leukemia.
Those of us who belong to Club Med go on the roller coaster ride-of-a-lifetime and are expected to handle all its unexpected loops, dips and turns and the mixture of extreme emotions that comes with them -- both happy and sad. The cost of membership in Club Med is withstanding abrupt changes in one’s life and learning humility at a deeper level. The goal of every parent who is initiated into this club is the same: to see our children overcome their life-threatening illnesses and live long and happy lives.
Austin, my second child out of four, was only a fourth grader when he was diagnosed. He was an all around active and very talented kid, and had just received an award for student of the month and been given the “principal handshake award” for being a special, stand out student -- which only one or two students, if any, are selected to receive each year. Austin also had after school activities; he played basketball on a traveling team and at a local recreation center, played the saxophone in advanced elementary band and being such an amazing saxophone player, had just started playing with the Middle School Jazz Band.
Who could ever imagine it would be my son to take this journey and fight for his life?
It still hurts when I think back about the week that led up to his diagnosis. We were on our family vacation having fun, playing in the snow, checking out all the sights and just enjoying each others company. We had even spent time sitting around the fireplace with our children, telling stories and
reminiscing about the special days when they were born, recalling their first words and laughing at their funny and silly antics through the years.
What remains deeply etched in my mind was our drive home on the last day of our happy vacation. Austin, without any warning, started having an awful side ache and began to hyperventilate. I had the gut feeling something was terribly wrong. That was the beginning of the roller coaster ride. It was full speed ahead. We ended up in the emergency room before we even had a chance to unpack. The next thing I knew, I was pulled aside into an empty cold room and told that my son might have cancer. One can’t imagine the dreadful feeling of this kind of news, unless it’s been said to you about your loved one…. your own child…
I didn’t realize where this roller coaster ride would take us. I was told that it would take 3½ years to treat his leukemia and that as long as we followed the chemo and medication protocol, it should be a smooth ride. They said there was a chance Austin could end up in the hospital once in a while if he had a fever with low blood counts, but he might not have any inpatient time at all. As it turned out, Austin wrote his own medical book.
Since his diagnosis, Austin has had many unforeseen complications in his battle with cancer: hypersensitivity and allergic reactions to the medication and chemo, severe pancreatitis, collapsed lungs, plural effusions, several blood and platelet transfusions, arrhythmia issues, the list goes on and on.
I never imagined the hospital would literally become our second home.
If you combine all his hospital stays, Austin has spent almost 8 months in the hospital during the last 3 years. He has had 8 surgeries, 2 of them major, for the removal of cysts, his spleen and part of his pancreas. From the last count, Austin told me he has swallowed more than 6,500 pills in these last years, had over 150 different procedures and injections of chemotherapy and tests. I’ve even been “Dr. at home” when I was hooking him up nightly to an IV pole with fluids and nutrients.
This journey has been very heart wrenching. Seeing Austin suffer and watching as others lose their battle has been torture. As a member of Club Med you become connected to many families. Not only have I felt my own joy and pain, but I have also deeply felt other's ups and downs. During those many long stays in the hospital, I have had the honor of meeting many beautiful children on the oncology unit who have touched my heart.
One in particular I will never forget was an incredible young man named Marlon who reached out and gave strength to Austin in the most difficult times in his treatment and thus became Austin ’s “best friend forever.” Austin described Marlon as being “tall as a tree” because he was 6'9" and wore a size 17 shoe. Marlon had a promising career ambition to become an NBA player until cancer took that all away. Marlon kept Austin distracted from his ordeal.
They spent a lot of time watching movies together, talking about how to cope with pain issues and, of course, discussing tips about playing basketball. Before Marlon passed away, he asked Austin to do 5 things in life… be strong, get an education, play a sport, drink healthy juices and chase girls. In return, Austin promised that when he is able to play basketball again, every game would be dedicated to his buddy Marlon.
I remember I used to celebrate and cheer when Austin received good grades or had a good basketball game. Now I find myself cheering when a high fever becomes low grade, when his blood counts are stable or just when Austin has a day that’s pain free.
Starlight came into our lives at one of the most crucial times in Austin’s treatment. It was during his hospitalization for his second major surgery when Austin was too weak to come out of his hospital room. He had just received news that his friend Marlon could no longer visit him because Marlon had contracted meningitis. We needed to keep Austin distracted, cheer him up and keep him entertained while he was recovering. Into the room rolled a Starlight Fun Center! Austin was thrilled about the movies and games. It helped him stop thinking about the pain too much and even though he was anxious, it kept him happy.
Austin and I talked a lot about what he would like to do once he was strong enough to get out of the hospital. He wanted to be able to go to amusement parks with his sisters like Disneyland, Universal Studios or Legoland. We would both laugh and imagine all of us on an amusement park ride, while sitting on a hospital bed! Funny thing, Starlight's Great Escapes family activities have made those dreams come true for our family!
What distinguishes Starlight from other organizations is that they include brothers and sisters and make them feel important too. Many people don’t realize that it’s not just the sick child who is affected. Everyone’s life is turned upside down, especially the healthy siblings. Starlight has made it possible for me to see my girls laugh and smile again with their brother.
For kids like Austin, Great Escapes events allow them to look forward to special moments away from needles and injections, and helps to take away the sadness of being sick. We’ve also made lifelong friends with other families whose lives revolve around a sick child. The support and camaraderie of others who understand your plight has been the one benefit of belonging to Club Med.
I am truly thankful to Starlight. Starlight has given us hope, taking a little bit of the worry away, giving us special times to be a normal family and helping us forget for a while the stress and uncertainty we feel. Starlight has also given us all a chance to smile again and it reminds us to cherish every moment we have together.
You would never know what Austin has been through by just looking at him. He has endured so many obstacles that a child shouldn’t have to deal with. He’s still in treatment and I know we have a bumpy ride ahead of us, but I also know that we will get through this. I continue to hold my head up high through every dip, turn and loop of this uncertain roller coaster ride, and to think positive. I believe that my son will survive.
Austin has a motto that he loves to share -- “do something nice for someone else everyday.” I would like to thank every Starlight supporter for living by that motto, and making our lives more bearable every single day. You truly give us hope, and keep us moving forward. On behalf of my family and the thousands of other Starlight families like us, please accept my heartfelt gratitude for your continued support of Starlight and the children and families they serve.