When I came home tonight, the boys were fighting and complaining about raking the leaves in the yard. They said it was too hard. Then the complaints about homework being too hard. I am in the real estate business, and every day I listen to Realtors and lenders talk about how hard the times are.
Tonight, listening to the boys complain, I finally realized the truth. Work, chores, races, school. None of these things are hard. They are not necessarily fun, but they are not hard. In fact, I have never experienced hard. Running a marathon does not qualify. I know this because I have seen hard.
A few months ago, I watched Tyler stare at a plate of food. He had hundreds of open sores in his mouth and down his throat. He had nausea so bad he could not keep down a small cup of water. But the TPN (intravenous feeding) had to be stopped. The TPN was shutting down his kidneys, and the lack of food was causing his diaphragm muscles to atrophy. So the food had to be forced down, through the sores and nausea. Without complaint, he forced the food down. That is hard. And that is courage.
I watched as the chemo caused neuropathy, creating enormous pain in Tyler's legs and feet. Then layers of skin began to peel away, until his feet were raw. The pain was so great that we could not even allow the bed sheet to touch his feet. But Tyler needed to keep the circulation moving in his legs, so that the poisonous chemo could saturate deeper into his system. So each day he got up and walked the halls of J-5, walking on raw open sores...IV poll in tow. That is hard. That is courage.
Stef has been fighting for his life for over a year. One step forward, three steps back. Yet every day he gets up. He goes to work. He goes to his kids soccer games. He searches out Tyler wherever we are at Children's. He is forever supportive, always encouraging. He refuses to bend. He refuses to stop. He refuses to lose. Stef knows hard. And Stef knows courage.
Sinjin has fought three relapses, and has been written off by the doctors more than once. And he keeps fighting back. He is unstoppable. He now has shingles, and some worrisome signs on his recent tests. It will be two weeks before the tests are confirmed. And he continues to be filled with compassion, faith, and courage. He knows hard. He knows courage.
I watched Brett being wheeled to the ambulance to be sent home to die. He was too weak to lift his head, but whispered to the nurse, "Please thank everyone for all they tried to do". At home his mother sat with him as he begged to be allowed to fight some more, to be given more chemo...while the doctors turned their backs. That is hard, and that is courage.
Bob sat with his 14 year old son, knowing that all options to save A.J. had been exhausted and the end was coming soon. There was nothing else remaining to try. A.J. looked into his father's eyes and asked, "Dad, what do they mean by hospice care?" A.J. then proceeded to comfort his father. That is hard. And that is courage.It is my hope through this blog to convey the truth of childhood cancer. It is my hope to share the courage of those suffering. It is my hope to celebrate the victories. It is my hope to communicate the need for all of us to fight for a cure.
Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact.
--Miles Levin, 18 year old
In the last presidential debate, the senators were asked their first priorities as president. My first act would be to make it illegal to say, "This is hard". The penalty would be to spend a week on J-5, or one of the other childhood cancer floors around the county.
Team in Training: 475 training miles run. Easy little 3 mile maintenance run tomorrow, and i am all done. Oh yeah, that is accept for the 26.2 miles on Sunday. Piece of cake.
No, really. It really is. Remember - I have been on J-5. This is a piece of cake. It is my honor to run for Tyler. It is my privilege to, in a very small way, stand in the shadows of the courage and bravery of Tyler, Brett, Stef, A.J., Sinjin, Kylee, Jana, Ryan, Mason, Tristan, Brendan, and far too many other names.