Brooke

Brooke Elizabeth’s first strange sign of what would later be diagnosed as full blown aggressive stage IV neuroblastoma cancer came September 21, 2010 with a phone call from Brooke’s daddy while her mother was away at a state science education conference.

Our perfectly happy, healthy toddler had a sudden painless limp which rapidly progressed into debilitating pain and a trail of various misdiagnoses. By Thursday, November 18, 2010, the world crashed down upon us as answers came and the word cancer arrived in our lives accompanying our child’s name. It was the most terrifying dark tunnel ever imaginable. Brooke had a massive day of exploratory abdominal surgery the very next day along with bleeding, cauterized internal biopsies, bone marrow biopsies, and port placement in her chest. By that Monday, our little 3 ½ year old daughter was starting her first drip of toxin to save her life – her first dose of chemotherapy.

As of this writing, November 29, 2012, cancer has been invading our little girl’s life exactly 800 days from the first strange, unexplainable painless limp… and counting. For the past two years, living with cancer is the only life Brooke has known. Her days of being a carefree baby and toddler are gone and have been replaced by a beast stripping her childhood away from her as we have watched our baby turn into a young girl during her battle. Even now at the tender age of 5 ½ she has endured more than most adults do in a lifetime.

We knew she needed the absolute best surgeon possible, and we found him, the lead surgeon of surgeons for neuroblastoma in the country, 1,600 miles from our rural South Texas home on the ranch, in New York City. In April of 2011, we pursued the surgeon and, giving all credit to God, he removed her primary mass and numerous lymph nodes leaving her to battle what remained of the cancer in her bone marrow. Just before her 4th birthday, she had her 6th round of chemo, post the life saving surgery. Our little girl with the pretty curls was living life hanging by a thread, and never ever got to eat a bite of her My Little Pony 4th birthday party cake.

New York advised with the amount of disease Brooke still had in her bone marrow that the routinely practiced stem cell transplant would likely not work for her. They gave us the option to come back. We made the decision in prayer on the foot of Brooke’s hospital bed. Her fever and immunity were still too delicate to try and fly commercially, so we were gifted a private flight to get her to Manhattan and we arrived in NYC the second time on May 11, 2011. She was there 365 days ~ one year exactly. From May 2011 until May 2012 we lived in the Ronald McDonald House of New York City while seeking out the best possible medical options. Brooke’s daddy remained home working and making periodic trips to see them when he could. It was a long hard year of aggressive treatment, followed by a quiet period of stable, seemingly responding to treatment, then… progression. Then, more aggressive chemo was used to stop the progression but did not clear it, so the next step was a 30 minute radioactive injection that she is still recovering from, months later, a form of radiation of the blood called MIBG therapy… followed by {finally} one week at home.

Five weeks home going back and forth from Corpus Christi to Austin, Texas… three days a week in the hospital and/or traveling to them, and four blissful days a week at home. Then it was one week in Michigan for scans (and time to donate her first foundation check to research through her newly formed growing nonprofit www.BrookesBlossoms.org), and back home again.

Then a bad word in our lives: progression.

The week before Thanksgiving, and Brooke’s cancer progressed with another new lymph node in her neck.

But here is the amazing part about individualized, targeted, genomics therapy. The very next day after her scans, Dr. Sholler had the lymph node surgically removed, and immediately began the process of analyzing Brooke’s neuroblastoma ~ again.

Re-evaluated. Re-targeted.

Re-aligned therapy to look for changes (as neuroblastoma is known to do) and STOP the pathways in the cancer cells from growing.

Next week, on day 813 of Brooke’s time enduring the side effects of a life battling pediatric cancer, she will be scanned once again. We hold faith in our hearts that God has led our child to this place, to this therapy, and that each miracle he has given her has been a gift one day at a time, and in many instances, one moment at a time. None of us knows our time, or how much time we have, but what we do know is that we will never stop fighting to FIND and FUND cures for children fighting cancer. WE are her strongest voice. WE are her advocates. Children are our future, and if we have HOPE for their tomorrow, the chance to make a difference, even one child at a time, starting with our little girl, then there is HOPE for many. Yesterday’s cancer diagnosis for a child is different than tomorrow’s IF we take action on their behalf. Thank you for reading and believing in many more days for Brooke… and in honor of children like Ezra who deserve to be forever remembered for the battle they fiercely fought that will change the cures of tomorrow if we never forget… and for the sake of those children out there right now who have not yet been diagnosed who deserve the best possible chance of days filled with the light of hope.

A note from Kyle and Robyn Matthews, Ezra’s parents… Brooke had many happy, healthy days being treated on the personalized medicine trial. Crushingly, she passed away June 26th of 2015. Our tears and love are with the Hesters.