I recall the night the doctors met with us to confirm the cancer diagnosis. There were really no surprises at the meeting, only confirmation of what we already knew. I had gotten my hands on the records and surgery results even before the oncologist had them. We knew exactly what we were about to be told. But it still hit hard. Knowing it is the worst case scenario is one thing. Hearing it confirmed by the doctors is entirely different. When we walked out of the room, the entire hall was filled with our closest friends. I can not tell you what I did or said. But I clearly remember them being there. And they were there again, over the next few days, as we learned things were much worse than the "worst case" scenario.
They sat for hours as I ranted about the medical system, sometime in anger and sometimes in tears. They listened as I rambled, probably sometime incoherently, about how I had almost figured out how to control all the uncontrollable things that were happening. They left work when they heard I was making the 3 1/2 hour drive to Brett Workman's funeral, refusing to allow me to go alone. And they sat with Tyler for hours. And they prayed for Tyler for even more hours. Some disagreed with how I questioned doctors, and searched around the world for better answers. But they knew I needed to do so, that I could leave no stone unturned. So they just sat and listened.
They did Laps for Love, Snowball/Softball, and Dodge Ball. They shaved their heads. They cleaned our house, bought our groceries, and ran our other boys to their sporting events. But most of all they were just there.
They all seemed to understand the extreme feelings of loneliness. The feeling of walking the halls of J-5 at 3 A.M. looking for someone to talk to. The way you know the story of every child behind every door you pass, and you know the ones who are "out of options". The horrible feeling in the pit of your stomach when you watch the nurses erase a child's name from the grease board that lists their room number. Our friends were there for us, to stay or leave, talk or listen, cry or pray, whichever was needed.
And there is Stef, fighting his own vicious battle with cancer, but always there with a word of enthusiasm for Tyler. Stef is back in the hospital, and in a lot of pain. But he continues in his prayers and support of Tyler. And then there is Brett's mom and A.J.'s dad. They each lost sons to the same cancer, at the same age, all at the same time Tyler was fighting for his own life. And they both turned to support and encourage us through the fight. And they are still there today. And so many others have done the same.
And our friends are here as Tyler continues to get strong. They were at the marathon to help me along. And afterwards came to the house, bringing gifts of Ibuprofen and cold beer. Every where I go, people come up and ask how Tyler is doing. We have been very blessed with wonderful friends.
As Henry David Thoreau said, "The most I can do for a friend is simply to be his friend." And we all need friends. No one can go through this alone. This is what it is like on the pediatric cancer floor...
I have no idea if you have even been on the 9th floor at TX Children’s Hospital, or any other pediatric cancer floor. If you have ever walked the halls and seen the smiles or tears on the faces of these little fighters as they play on the little trikes and big wheels as they fight for their lives. How the moms and dads race behind them with the ever present IV pole. How they have little child-sized masks on because they are at high risk of infection. How the teens hang together and still try to be cool, even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their vocabulary, instead of LOL and "sweet". How they know what’s at stake and still get up every day, fight, smile…..LIVE! How the poor little baby's cry because they can't even relate what hurts. Or if you've ever seen a mom or dad alone in the break room at 3 am, with their head in their hands, feeling alone, helpless, scared and mad. Knowing they have no control over their world any more.
--Bob Piniewski (AJ's dad)
On his 16th birthday, Barry Ryan learned he had leukemia. He beat leukemia into remission. But it came back. So he beat it again. But it came back again. The battle has continued for two years. Last week Barry's aunt sent this note to Barry's father:
It is time for you to rest your weary brain. No more research, no more phone calls to doctors all over the country and around the world, no more Internet at 3am, no more searches for experimental trials, no more looking at third world countries that "swear they have the secret to curing leukemia", no more studying of pharmacology and biology and researching Lil b's doctors backgrounds and where they studied..... it's time to rest your weary brain and let your heart take over. LET YOUR HEART TAKE OVER!! Lil b is tired, and you are tired. I am here with you and we will cross the finish line TOGETHER with the rest of the decisions made FROM YOUR HEART. I love you more than you will ever know.
Finally the doctors said "he will not make it through the night". They repeated the statement every day for over a week. Still he continued to fight, and then fight some more. And then it ended. Barry's 18 year old cancer ridden-body was cremated yesterday.
Please join us in a fight for the cure.