Truly Inspiring: Brayden’s Story

To My One and Only Brayden,

I don’t even know where to begin. I guess I am going to start by saying that no matter what has happened, no matter how hard life has been, you are the one and only thing that has kept me going. I wake up and get out of the bed every single morning because you need me…so I must. Sometimes it is hard and I don’t want to. I get up because you get up. No matter what you have faced, you wake up every day with the most beautiful smile on your face. You either wake me up from a sound sleep telling me it’s time to get up. And sometimes, after hearing Grandma Robin downstairs in the kitchen, I wake up to you screaming at the top of your lungs, “Grandma Robin!” It’s pretty funny. At night I cannot sleep unless I know you are ok. I wake up sometimes in the middle of the night and put my hand on your chest or my ear to your back and feel or hear your beautiful heart beating. Our life together sure has been an adventure.

I remember when you were born, the way I felt the first time I heard you cry – I started crying. They wheeled us to a room and in the room there were other moms and babies. I wanted to hold you so bad, but I couldn’t stand up and I was too afraid to lean over and pick you up – I was scared I would drop you. They finally came and wheeled us to our hospital room. I loved holding you in my arms. There were so many family and friends there. You were the apple of your grandparent’s eyes – on both sides. You were the first grandbaby. I cannot begin to explain the love you could feel in that hospital room.

The next couple of years were wonderful; you were so full of energy and had such a sense of humor. You had a few health problems. You had Reactive Airway Disease and a heart murmur. The heart murmur never caused any problems, but the Reactive Airway Disease did cause some. We had to take you to the hospital several times, every winter you would get a cold and then the breathing problems would start. It would be scary, you handled it so well. Even though you had a few health issues, we could have never prepared for what was coming.

The summer of 2009 was wonderful. We spent the whole summer outside, playing baseball, swimming, having water balloon fights, going to the playground. Then in September, you started vomiting every morning. It slowly got worse and worse; we took you to the pediatrician and the emergency room. We even took you to a GI specialist. You had an Upper GI and immediately threw up the barium. This made them nervous, but they said we would wait another week and do a CT scan of your stomach. When we went in to do the CT scan, Grandma Robin talked to the radiologist, telling him you had been throwing up every morning for a month. He then told her that was a sign of a brain tumor and that he wanted to take you over to the ER and do a CT scan of your head. And several minutes later you were laying on a table waiting on the CT scan. You were scared so I sang Twinkle Twinkle Little Star to you.

My stomach started hurting like I knew already that something was wrong. I looked up and could see on the faces of everyone in the room that sometimes was very, very wrong. The doctor walked up to me and said, “We found something in his brain.” My heart broke right then, and I started crying. I was carrying you like a baby towards Grandma Robin and she looked at me and knew they found something.

They found about 10 tumors in your brain and little pieces of tumor throughout your brain and your spine were covered with a sugar coating of tumors. It was the scariest moment of our lives. You were admitted that night and we did not leave for 60 days after that. You have had a rough time since. From October 2009 until June 2011, you went through treatment after treatment, nothing ever seeming to work completely.

On June 1, 2011 you relapsed with several new tumors in your brain. They started an experimental treatment and so far it has been working. You had an MRI on April 20, 2012 and, for the most part, everything appears to be stable; there was one questionable part around the part of your brain called the Hippocampus, but they think that means you are most likely having seizures that we are not noticing.

Even though all of the above has been tough, it’s not as tough as you are. You amaze me every day. I am so, so proud of the little boy you have become despite everything you have been through. You still look at life as nothing but an opportunity to have fun. If I could say one word to describe the way you are, it would be SHINE. You shine like the sun and love shines from you. You can be a little stinker sometimes, but you give the best hugs and you never meet a stranger. If anyone asked me what I was most proud of, it is you. If anyone asked me, who I aspire to be like, it is you. I wish I could be as brave as my son. If I am ever in pain, you say,” Remember Mommy, just take a deep breath.”

I love you Brayden, more than I will ever be able to express. I will see you tomorrow, brave boy – you are, after all, the most beautiful alarm clock.

Love you to the moon and back,



About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
This entry was posted in Brain Tumor Awareness Month, BT Kids, BT Parents, Foundation News, People, Uncategorized. Bookmark the permalink.

2 Responses to Truly Inspiring: Brayden’s Story

  1. amko1998 says:

    Thank you for sharing your beautiful boy with us. I can feel the strength behind your words. As a fellow mom of a child who has had a brain tumor and still has medical issues, I appreciate you sharing your story. It helps me to continue to stay strong throughout this arduous journey. Thank you.

  2. Beth says:

    This is so touching and so inspiring! Your love and bravery is something that touches the deepest part of my heart! Brayden is my postcard buddy and an inspiration to me every single day. I will get up and smile and face my day. Big huge hugs.

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