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 began 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 understood the truth. Work, chores, races, school. None of those 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.
Let me try to explain "hard".
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 chest 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...I.V. 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. Six months ago doctors had given and were sending him home. Sinjin yelled, "I am 14 years old and have never kissed a girl! I REFUSE to go home and die". He stayed, and beat another relapse. 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 walked with Brett as he was wheeled to the ambulance, being 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?" Bob told him. A.J. then proceeded to comfort his father. That is hard. And that is courage.
Rob was in the room next to us at Children's. Now 15 years old, he had been in a bitter fight with cancer for half his life. Seven years of chemo, radiation, and failed bone marrow transplants. Then the third bone marrow transplant worked! The cancer was gone. Now he only waited for his blood counts to return, as he began dreaming of a normal life. But a virus shot through the cancer floor of J-5, attacking the weakened immune systems of Rob and several others (including Tyler). After a seven year battle, with the victory line finally in sight, Rob passed away. That is hard. That is courage.It is my hope through this blog to convey the truth of childhood and young adult cancer. It is my hope to share the courage of those suffering. It is my hope to celebrate the victories of the survivors. It is my hope to galvanize everyone to join the fight for a cure. It is my hope that every one of these young people would be home, where they can get back to laughing with friends and family, and complaining about raking the leaves.
The fear is mostly gone now. Even if things don't work out for me in New York, I'm not scared anymore. The way I see it, it's possible that all things are deliberate (though I don't think anyone can know for sure), in which case these past two cancer years may be my reason for being, and if so I give myself an A for how I've handled this harrowing ordeal. If I am no more than a 25 trillion cell organism who unfortunately got the short end of the stick, I have still thoroughly enjoyed the time I've been given. We're not entitled to one breath of air, yet here we find ourselves alive anyway. You didn't do anything to earn it, so whatever you get is bonus.
--Miles Levin, at 18 year old
In the presidential debate, the senators were asked their first priority as president. My first act would be to make it illegal to say, "This is hard". The punishment would be to spend a week on J-5, or one of the other childhood cancer floors around the county.
Team in Training Update: 475 training miles run. An 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, Rob, Mason, Tristan, Brendan, and far too many other names.