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Back to School after Surviving Cancer: One Boy’s Story

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Summer is soon over and the anticipation of the upcoming school year is here. It’s time for children to say goodbye to bonfires and swimming and hello to schedules, desks and books. It is a time for new beginnings and endless possibilities for most children. For my two healthy children, it is just that. But for my son Gavin, who was diagnosed with a brain tumor near the end of his kindergarten year, back to school can be a time of worry and uncertainty.

For the thousands of children in the U.S. living with a brain tumor or cancer, going back to school is bittersweet. They crave the normalcy that ensues when a new school year begins, yet must delicately balance being a child while going through treatment or dealing with after effects of it.

At the start of Gavin’s journey, I had yet to realize all that comes with treatment for a brain tumor. I naively imagined that once he beat the tumor, he could then carry on with his life as he knew it. Sadly, this isn’t the case for most childhood survivors. Many of the treatments used to treat pediatric cancer have long-term effects such as mental fatigue, physical and cognitive deficits, or trouble with attention, memory and speed.

During first grade, Gavin received homebound instruction (where a licensed teacher helps maintain a child’s progress) when he was not in the hospital. When finally returning to full-time school, he had missed 17 months of consistent education. Any healthy child would fall behind missing that much school. In addition to that, Gavin endured chemotherapy, five brain surgeries, multiple procedures, surgeries and medical complications. During all of this, our goal was survival. When his disease was finally under control, we soon realized that going back to his life as he knew it was not going to be an easy task.

Transitioning Back to School

Parents like myself are faced with the reality that while we helped our children fight to live, they missed part of their childhood. Education, activities, sports and social interactions aren’t easy to experience while at the hospital. Back-to-school for us is so much more than buying a few new outfits and getting the necessary supplies. It now includes meetings with the school, evaluations, discussions about special services and emotionally preparing our children to re-enter a very different world than what they have experienced during treatment.

Communication is key between parents and schools. For the upcoming school year, I have been preparing for what I foresee being areas of struggle for Gavin. I am acquiring updated evaluations from neurology, physical therapy, neuropsychology and vision specialists so that we have the most current update on Gavin’s needs. Being knowledgeable and proactive has helped tremendously.

I’ve learned to utilize every resource available: I depended on PACER and the American Childhood Cancer Association/American Brain Tumor Association. These resources can alleviate feelings of worry and uncertainty and allow you to advocate for your child. If you can, find a neuropsychologist who you trust and who can be an ally in helping others understand your child’s unique situation. Gavin has an amazing neuropsychologist who supports him and his academics and encourages him on how far he has come.

Despite all these challenges, Gavin is excited to begin third grade! I consider this a cause for celebration. When I compare Gavin to his siblings, or even his previous self, it is easy to be discouraged and imagine how much easier things could be for him. However, at the same time, going through this life-changing journey has altered my perspective. I could have lost him, but he is here, starting third grade, and that is simply a miracle.

Photo credit: Scott Streble

How do you help your child ease back into the school year? Add your comments in the comment section below.

 

About the Author:

Nicole Pierson is the mother of Gavin, a pediatric brain tumor survivor. Nicole is also a mathematics teacher currently taking a sabbatical to study neuroplasticity and implications for educators. You can follow their journey at her son’s CaringBridge website or her blog.

Comments

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5 Replies

  • By Dayle Duffy-Cavaliere

    I have read your story and send caring thoughts your way as you advocate for your son.Though understandably Gavin is more time consuming and worrisome, never forget your older children. Even a wake up on Saturday morning, to go out for breakfast, just the two of you, to talk and laugh together, will enable them to continue feeling special.
    I practiced this with my children and it reduced sibling rivalry and improved my relationship with each child. They were each special needs in a profoundly different way but this was the equalizer. One Saturday every other week I was all theirs. Did wonders!

  • By Shannon Schultz

    You are simply amazing Nicci! You are an an amazing writer and mom to all three of your beautiful kids! You and Steve are great parents and we pray for Gavin to have a great year as a third grader! Blessings,

  • By Tammy

    Awesome article! I follow Gavin’s Caring Bridge site and continue to pray for all of you. You are making a difference in so many lives, most importantly Gavin’s and your family’s!!

  • By Lori Ballantine

    Nicole,
    Thank you for sharing your journey and it’s learning to empower others who will follow. Prayers for continued health and strength for Gavin, you and your family.

  • By Anne Allen

    I read your story and God bless all your families hard work in Gavin’s journey in life! I have a friend who as an adult developed a brain tumor that caused him to loose his wife, a very good job and was a vegetable. Several surgeries repaired his brain and allowed it to heal cancer free. He was in my college science classes in 2011 for the first time after his recovery and earned straight A’s and went on to become a Respitory Therapist. I am very proud to say that I have an amazing friend who I am so proud of. Since it was his first semester after getting out of the hospital, I got to witness his success and helped him realize the amazing life he was living. Life is so good! God Bless Gavin, your family, teachers and doctors.