Brooks was an active, fun-loving, full-of-life 5 year old boy when his world unexpectedly changed on June 13, 2015. He was diagnosed with stage IV inoperable brain tumors, called Astrocytomas, in his left thalamus and midbrain. The size of a golf balls.
After receiving an emergency shunt and tumor biopsy, he was put on several medicines and a treatment plan was made. However, there is no know cure for this type of brain cancer and we were told that radiation was the best chance to prolong his life. So we did what any parent would do when hearing this devastating news...we got on our knees and prayed. Then we got right back on our feet again and fought like hell.
Brooks stayed 10 days in the hospital and was released for home. We were waiting on approval for a near-by proton beam radiation center. But unfortunately the next morning Brooks started acting differently again. We rushed him to the hospital to find out he had suffered a brain bleed at the biopsy site. He then needed to start conventional radiation of his brain that day in order to save his life. The tumor had grown 40% in 10 days.
Brooks was simply amazing and beyond brave during his fight. All of his initial and follow-up brain MRI's were non-sedated, as well as his 6 week long brain radiation treatments. He also started oral chemo that he took monthly. He never asked why, never cried, and knew what he needed to do in order to get better. Brooks's speech and physical abilities were greatly impacted from the brain bleed, growing tumor and radiation swelling. He lost all ability to walk, talk, eat, sit up, go to the bathroom, and play. He could hardly keep his eyes open. He received a ng-tube, which lead to a g-tube due to his lack of appetite and poor oral motor skills. He also had a PICC line placed a few times, but no port. During his recovery Brooks still tried so hard to do the things he loved the most...play with his hotwheels, Legos, monster trucks, books, video games, hanging out with his friends and being outdoors. He even discovered a new-found love for painting. His first canvas painting can be found on a Bucketfeet exclusive tennis shoe! The money raised from the sale of this shoe went to pediatric cancer research!
Eventually Brooks started making progress in his recovery!!! With the help of therapy, hard work, and miraculous tumor shrinkage, he started regaining gross and fine motor function, started talking, went to bathroom on his own, started eating some, started sitting up on his own...and finally started fighting with his younger twin brother and sister again! Looking back we now realize that we were witnessing a miracle. He started to do normal boy things again! In Janurary 2016 he got to go to kindergarten for the first time at Cherry Tree Elementary. What a blessing that was for him!!
Every 3 month brain MRI showed tumor shrinkage except for March 3, 2016, when it was found stable. We felt in our guts something was wrong, something was different this time. There had been shrinkage until now. Then on March 16, 2016 we were hit a heavy blow yet again. Brooks was acting differently that day so we took him to the ER. They ended up finding another tumor, but this time on his cervical spine. This was devastating news.
Brooks bravely underwent risky cervical spine radiation for 10 days in hopes to slow the tumor down. Unfortunately the tumor was too aggressive and resistant to the radiation this time. Brooks's neck and leg pain started to increase and his function began to quickly decrease. He was back to the confines of his wheelchair. He could hardly turn his head without pain, could not walk, could not use his right arm, and his voice was weakening.
Then on May 13, 2016 he caught a nasty virus and was admitted to the hospital. After several days of ups and downs, he started to quickly decline...we had to make the hardest decisions any parent should have to make...how did we want his last few breathes on Earth to look like. I still could not accept the fact that this was "the end". I never gave up hope. This just couldn't be happening to MY Brooks. But as his dad and I talked and prayed over every option, it was Brooks who ultimately ended up making the decision for us. During his 10 day hospital stay, while on b-pap, the only words Brooks ever said were, "I want to go home". So with heavy hearts we knew what was the right thing to do.
We transferred Brooks to our home on May 21, 2016. He waited until he was home, he was safe, and he was surrounded by family to take his last breathe here on Earth at 7:47pm. One of the last sounds he heard, just minutes before, was his mommy laughing and being silly with his 21 month-old twin siblings, Ellery and Rory. True to Brooks, he wanted to make sure we were all happy before letting go.
There is not a minute that goes by that Brooks is not thought of and loved. He is in our hearts and we just tug on our heartstrings to feel him a little more. He gives me "signs" in the shape of hearts...with his heart clouds being the most spectacular. It is so comforting to know we will see him again someday and that he is always with us. But it does not help the fact that our son was only 6 years old and taken from us way too soon. Our lives and our hearts will forever have a missing piece. We love you to the moon and back, and back again Brooksy ❤️
My heart has been calling me to do something more. Something big. Something Brave. I've stepped out of my comfort zone and asked for help. Help us find a cure. Help us by donating money. Childhood cancer is only allotted 4% of government funding for research. And of that 4%, pediatric brain tumors receive less than 1%. We have to fight for our children!! They are our future and cancer can impact any child. It does not discriminate.
Thank you for supporting Brooks and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
Please consider donating some of your "change" to help make a "change". Please cut and paste the link below to the Be Brooks Brave fundraiser page.
Love, Tracey (Brooksy's mom)