Tyler is now asleep. Today was a difficult day on so many levels (Brett Workman). Tyler will receive a new round of scans in the morning. Hopefully round 5 of chemo will begin on Wednesday. To start round 5, Tyler’s ANC needs to be up to 1,000. It is currently at 0. White counts are also at zero. Platelets are still low, so another transfusion was given today.
Finally this long day is over. I listen to the IV pump and try to think of some blessings we have received. I wander the halls at 2 AM, and paced in front of Brett’s empty room. As I think of our blessings I realize there are quite a few. I would like to share some.
First and foremost, every scan and shown continued decrease in the cancer. There have been many battles in Tyler’s body, and Tyler is continuing to win the war.
We are also thankful for the speed of the diagnosis. Burkitt’s is very often misdiagnosed for several weeks, resulting in a far worse prognosis. Our process began when Tyler had a stomach flu that would not go away. Tests and x-rays reveled nothing. It was a GI doctor at Children’s who found the tumor and immediately sent us to radiology. The quick response of the GI and radiology doctors gave us the correct diagnosis within hours of walking onto GI floor. By that time the cancer was so extensive that any further delay would have had serious consequences.
The original tumor is deep in Tyler’s pelvis and could have gone undetected even longer. It was three additional intestinal tumors, clustered together close to the skin, that were identified by the GI doctor. Their location aided in the quick diagnosis.
The support from the community has been amazing. There is no way we could have made it this far without the help and support of this community in so many ways. Tyler’s school, our neighbors, everyone has been wonderful. We have also received letters of support from around the country and over seas. It has been both humbling and exciting.
We have great nurses on J-5.
We have made many new and wonderful friends here. We have shared experiences that will permanently change our perspective on life.
Two months before the diagnosis I left my job and went on my own through Keller Williams Realty. Although the timing added significantly to our financial issues, it has provided enormous flexibility as Kathy and I trade off at the hospital. Keller Williams has been an enormous support.
Living so close to Children’s has been a wonderful blessing. We have seen the struggles of families here that come from hours away.
Both of our families have been a lot of help. My parents have been here several times, and we have received a lot of encouragement from their friends. My brother-in-laws have helped in many ways.
It would be accurate to say our family has cancer. This disease affects all of us. Through this Brandon, Travis, and Erik never know what it happening from one day to the next, or which parent will be sleeping at home. They have been so flexible during this process, only showing concern for Tyler. They are wonderful young men who have continued to excel through these difficult times. I am so very proud of all four of our sons.
Kathy is the calm in the storm. She is always relaxed. She is the one Tyler most often turns to for comfort. During adversity, Kathy just has a faith that says it will all work out. She says I need to relax, but sometimes I feel my tension is the only thing holding me together. She is the comforter while I am the fighter. She provides stability while I provide adventure. We are opposites that are a perfect balance when working together, and a disaster when working apart.
And most of all, Tyler. He became a survivor the November 14th, the day he was diagnosed. On that first day he resolved to beat this, even before we knew what “this” was. His spirit and compassion has never faltered. It has not been easy, and there have been many difficult times. But he keeps fighting. He is am amazing young man. I love him very much. FIGHT TO WIN.
We have received many more blessings. We are thankful for them all. But please do not misunderstand. I read a story about a person who said the blessings they received were worth getting cancer. That is just stupid. We have a lot to be thankful for, and will carry these lessons for the rest of our lives. But do not get me wrong. Cancer still sucks.