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Guest Blog: Children Shouldn’t Run Out of Options

After multiple relapses of Medulloblastoma, brain cancer, our hearts have been unable to recover after hearing the life-altering words from our oncologist that there were no more treatment options available for our then ten-year-old daughter who had been fighting brain cancer since she was six years old and a Kindergartner. She has fought hard after her first relapse only to have it grow back again and again.

With more determination than ever, we took to the internet and to other families who had children that had relapsed several times as well. We called every hospital and spoke to every doctor that would listen to us tell our daughters story. Sadly, every call produced closed doors.

Children shouldn’t run out of options.

At the beginning of 2018, and eight months after hearing the words that will change the course of our lives again, a Physician in Augusta, Georgia said he would treat Daisy. He told us his trial would not save Daisy’s life but it would give her time. That was all we needed to hear. We weren’t sure how we would end up getting our daughter to and from Colorado to Georgia but we didn’t care. We would find a way. He said YES!! That single word gave us a pocketful of hope.

Less than a month after speaking to Dr. Johnson and his team in Georgia, Daisy and I were on a plane. Our initial visit lasted six weeks. This was extremely difficult for Daisy, but the love that surrounded her from all around the world helped tremendously. We also met new friends from the adoption community who read about her story on her Facebook page, Hope for Daisy, before we came. They reached out to us and came for visits to help the time pass. We couldn’t have been more grateful to them. After the initial tests were complete, we were given the ok to start the trial. Daisy seemed to respond well to the medicine. She began Temozolomide, a 5-day-a-month chemotherapy drug along with the stage 1 trial drug, Indoximod, 2 pills twice a day but it would be a while before we knew if it was working. Daisy had scans every two months but each scan showed new tumors and finally, in August, she showed progression. We want and need this to work so badly because we’re desperate for our daughter to live.

We will go back to Georgia in a week and some decisions will have to be made that are never easy and I am looking forward to this with complete dread. Our sleep has been hijacked with painful memories of life before cancer and also the implications of what our life might look like afterward but in order to function on a daily basis, we live in a bit of denial so we can fully enjoy and appreciate every day as it comes. We spend every moment we can with her.

Despite everything against our girl, she is full of life. She loves life and lives it vibrantly. She loves to tell jokes to make others happy.

Daisy began sixth grade which is a huge milestone and gift. We never know if she will make it to another birthday or reach another grade level in school but we celebrate the big and little events and milestones because they’re huge to us. The innocence of her childhood has forever been shattered but she loves school and dreams of being an artist when she grows up.

Despite everything against our girl, she is full of life. She loves life and lives it vibrantly. She loves to tell jokes to make others happy. She is mostly happy and her laughter pierces my heart with gratitude each time I hear it. She is a Disney enthusiast but doesn’t prefer to sit in front of the television. She doesn’t like to sleep in because she believes it’s a waste of time. She loves her two-year-old dog, Cupcake, and they have the most enduring relationship. She doesn’t look sick and truly, it’s just hard to imagine that a cruel beast resides inside of her trying to steal her away from us. Although some days are excruciatingly hard for us, her spirit and determination are unwavering and we try to find joy every day.

In September 2016, brain cancer surpassed leukemia as the deadliest childhood cancer yet lacks appropriate funding in research. Childhood cancer is also very different than adult cancer and kids need drugs tailored specifically to them. This is why the National Brain Tumor Society is important to us. They help fund this critical research and it is critical. Most drugs are unable to break the blood-brain barrier which makes it difficult to treat kids and adults with brain tumors. We desperately need to do more. It is unspeakably tragic to do nothing when there is so much that each of us can do.

 

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UPDATE: Since the writing of this blog, Daisy’s last scan came back stable, and she’s turning twelve today. Happy Birthday, Daisy, from everyone at the National Brain Tumor Society!

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