Monday, November 3, 2008


Yesterday I ran into a friend, and he talked about when he visited us in the hospital. I felt bad. I honestly did not remember that he ever came by. Those first several months were just a blur. I have tried to thank everyone who helped us, but it is almost impossible. So many people have been by our side. It has been fantastic. Through it all, even if we can not recall the specifics, we knew we were surrounded by countless supporters.

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)

Cameron Brown was 0n J-5 at Children's Hospital a lot while we were there. We have mentioned him several times on this blog. At 9 years old, he has been fighting a courageous battle against cancer for 5 1/2 years. Recently we asked you to pray, as his parents were faced with some difficult decisions. Doctors said conventional medicine offers "no remaining options". After a valiant fight of 5 years, 7 months and 4 days, Cameron passed away on Thursday. Please keep his family in your prayers. And please consider helping to fight for a cure.
Cameron Brown

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.

Barry Ryan


Rhonda said...

Tell us.....what can we do? I am heartbroken for these families I have been supporting and praying for. No child or family deserves to suffer like this. It feels like an insurmountable climb to get the money necessary for researching new medications geared for children. Other than signing the petition and writing senators, what else can we do???

Anonymous said...

It has definitely been a hard few weeks, learning of so many children passing. It's an ugly disease, it's mean and it needs cured! I love reading your posts - they give us hope!

Glad to hear Tyler continues to feel well - we continue to think and pray for you all.

Take care - Heather Timbrook (Chris and Nick)

Deyerle's said...


You have been so great about thanking everyone for thier support and graciousness. By being able to reach out to you, Kathy and the boys each one of the members of your community, friends and family members were able to feel blessed themselves. It is by blessing others that we ourselves are blessed. Continue your fight againist childhood cancer never feel guilty for speaking up and searching for the cure. You as all of us are our own children's advocate. It is our responsiblility to be in their corner. Fight to Win!!!!!!!!

Joseph's Nana said...

Thank you for posting on I am Joseph's Nana.Although Joseph is now living Jesus he will always live in our memories and our hearts.Our family will consider it an honor to pray for your courageous son Tyler.My brother died from leukemia many years ago.My scripture that started my day for the months we had Joseph was "This is the day the Lord has made let us rejoice and be glad in it"We all only have to-day.Nobody knows what to-morrow will bring so lets make it the best possible day.Tyler I will be praying for complete healing for you and for God to fill your family with hope and peace.God bless you all.Pauline Taaffe

Anonymous said...

I can certainly relate to your frustration and struggles. It often feels like we are helpless and there is nothing we can do, especially when you look around and see all that is being done for other types of cancer. I mean these are our children. I came across a wonderful organization not that long ago, Alex's Lemonade Stand ( If you don't know the story, it was started by a 4-year-old named Alex Scott who held lemonade stands to raise funds for childhood cancer, including her own! Even though Alex ultimately lost her life to childhood cancer, the Foundation continues. Children around the country still hold lemonade stands, and thanks to them, the foundation is able to fund research so hopefully someday we will no longer have to face these cancers in our children. There is something we can all do.

Mom said...


Thank you for keeping us all aware and involved in finding a cure. Our children cannot continue to go unnoticed. Cancer took my only sister at an early age and my precious father and has tried and tested my beautiful grandson, Tyler - Enough already. How can we do more? I will continue to fight as long as I live.