A Letter from Gretchen Holt-Witt

Filed under: Inspire,Uncategorized — admin @ 11:11 am May 13, 2013

Liam Witt would have turned 9 today. In honor of his birthday, his mom Gretchen has written a special letter to all the Good Cookies who help us do what Liam would have done: fight to make things better for kids everywhere.

A few days ago I went to Memorial Sloan Kettering Cancer Center, the place where my son Liam was treated for Neuroblastoma…and the place where he took his last breath.

It’s as hard as it is easy for me to go there. I know it inside and out. I know where things are. I know the people. I know the routines.  I know the smells. I know how to read the looks on the faces I see…some have fear, some have joy, some determination and some are just lost. I know them all, because at one time or another I had one of those looks on my face, which I always tried to hide from Liam so that all he saw was love.

I was at the hospital delivering favorite snacks to a shy, 12-year old boy from Oklahoma who has been in the hospital getting ready for a bone marrow transplant, and nail polish remover and cotton swabs to his mom. Chemo makes everything taste weird, so finding foods that a child wants to eat as they try to figure out what tastes good is a never-ending process. One day one thing tastes good, the next it doesn’t. Parents frantically search for anything that tastes good…anything…just to get precious calories into their child. It was a struggle Liam’s dad and I dealt with almost every day.

The family I was visiting came to NYC for routine scans as follow up to being treated for Neuroblastoma. Their son successfully battled back from his initial diagnosis, and then subsequent relapses, which, unfortunately, is pretty common in the world of nasty Neuroblastoma. It’s one of those types of cancers that likes to come back, again and again.

Their soft-spoken son had been cancer-free for a few years when, during the scans, they found that he had developed what’s known as “secondary Leukemia,” a type of cancer caused by the toxic chemotherapy he received for his initial diagnosis. Isn’t that the ultimate irony – the drugs used to treat his cancer caused another type of cancer, which is only treatable with a bone marrow transplant. This is the type of cancer Robin Roberts from Good Morning America recently battled.

They had packed enough clothes for a 3-day trip for those scans, but discovered they’re now going to be in NYC for 5 months. He was admitted immediately to start the rigorous process of a stem cell transplant.

Hospital time drags on….it’s awful and sucks the life out of you. 5 minutes can seem like 5 hours as you wait and wait and wait. When I dropped off the supplies, the boy’s mother was so grateful. It was the first time we were meeting, and yet we instantly knew each other. She wanted to sit in the small kitchen area on the pediatric floor designated for families and talk. I sat in the very same orange chair Liam sat in so many times. She told me she has to leave to go back to Oklahoma on Saturday for two weeks to complete nursing school. If she doesn’t go back now, she’ll need to start nursing school all over again. She is switching spots with her husband, who had just arrived to relieve her. They also have a 14-year old son who is back in Oklahoma. The emotional toll cancer treatment has on a family is one that is so hard and yet very rarely told.

While I was walking up to the pediatric floor, I walked through Nuclear Medicine and had a hug fest with the head of the department, the assistant manager, and several of the technicians. Several had come to Liam’s memorial service. We all cried together and told stories of Liam playing his blue guitar in the hallway with a small, empty box of Cheerios in front of him ready to take donations.

We reminisced how he would serve water to everyone in the waiting room, anxiously awaiting their name to be called out to go to a scanning machine that would reveal the state of their cancer. No one ever said no to Liam’s hospitality. I couldn’t believe how vivid their stories were of him. We all miss him and everyone marveled at how Liam’s sister, Ella, has grown so big.

And then I stopped in to radiology. It was a radiologist who found Liam’s first relapse, which was so small it didn’t appear on the sensitive nuclear medicine scan but showed up on a CT scan. We all thought it was nothing. It turned out it was something.

I saw people from Liam’s beloved cafeteria, where he was heralded as the next great chef. They would give him a chef’s hat and apron and take him into the kitchen to see how French Fries were made. I think the reason so many people were touched by Liam is because he took a genuine interest in them, and in what they were doing. And by doing so, showed how much he cared. It was beautiful to watch.

When I was leaving, I ran into Dr. Kim Kramer, who was one of Liam’s doctors on the Neuroblastoma team, and is now focusing her efforts on brain cancers. We hugged. We remembered. She told me that the project funded by a $100,000 grant recently provided by Cookies for Kids’ Cancer is now a treatment children are receiving for a horribly aggressive type of pediatric brain cancer called DIPG. It was a project that was considered risky but when given the choice between an option and no option, any option seems like a good option. And in the world of pediatric cancer which claims the lives of more children than any other disease, so many times you just want to know there is an option.

The fourth child just received the treatment and so far, all children are doing well. Can you believe that? Seriously, think about it…the money YOU raised helped fund this treatment that kids are receiving TODAY; Kids who, without this treatment, have very few if any options.

For your past efforts and your current efforts, we thank you from the bottom of our hearts. Words alone can’t express our gratitude. We promise you, your efforts are working and they are making a difference in the lives of children battling today and will help those diagnosed tomorrow. And we can’t tell you how grateful we are that you continue to be part of this journey.

Thank you for Loving Like our Sweet Liam who would be celebrating his 9th birthday today.

To our sweet boy, we will continue to do what you would want us to do and make it better for others. As you taught us, “If not now, when?”

Happy Birthday. We love you.

Mommy, Daddy and Ella

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