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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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47 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.

  • By Nancy Sen

    Nicole, I was very moved by your beautiful writing. Thank you so much for sharing your family’s story. I have never understood why some families are chosen to experience so much fear and heartache and I am in awe of your fortitude and of the love which rings from every word you have written. I am so happy to hear that Gavin is back in school. The brain is an amazing organ and needs time to heal. And it will. Might I add one thought, especially since Gavin is so young. Perhaps a year of part school and part home schooling might be a possibility, especially if the public school experience tends to highlight where he is behind as opposed to how far he has come. I also think the Dayle’s suggestion with regard to your other children is critical. Blessings to you all.

  • By Linda-Mary

    Praise God!

  • By Peggy Zuckerman

    Dear Nicole, As a former elementary teacher and an advocate for the placement of children in formal school setting, i.e., kindergarten, I hope that Gavin’s being place in third grade is not only due to his birth date. Too many children who have not had the challenges and loss of academic setting are “over-placed”, starting kindergarten too early. That can impact their success in school, and perhaps, most importantly, their view of themselves as a learner. For example, I taught children at the third grade who coped and struggled daily to be successful at third grade, and who were generally younger developmentally than the larger group. Had they been properly placed as second graders, they would have done extremely well. Giving any child the gift of time to develop and not to be overplaced in an academic setting is a gift that blesses him for a lifetime.

  • By Susan Blocker

    Myself & my Women of Hope of Cambridge, NY will be praying for your precious Gavin. God be with you all.

  • By Brenda Merlino

    Hi Nicole , I can understand what you are going through with your son having a brain tumor. I will keep you all in my prayers!

  • By David J. Mora

    God Bless you and your family, Gavin. You are all in my thoughts and prayers.

  • By karen Sieg

    I am a stay at home mom and grandmother. Our kids are all grown but now i watch the grand kids when needed. We live on a dairy farm near Osseo WI. I try to be a encouraging person to people who are on here. I will also pray for you and your family.
    I am glad that Gavin is able to attend school and is feeling better.
    God Bless

  • By Nicole Pierson

    Dayle,
    Thank you for the reminder about my other two amazing children. I have taken time to make them feel special, and celebrate their successes. You are right, it is so important for them to feel special too. Nancy, thank you for your kind words. We are meeting with Gavin’s team at school in the next week or two. I am on sabbatical this year, which is a blessing because I am able to take time needed to find resources, be very involved in his education as well as stay on top of his progress.

  • By Nicole Pierson

    Peggy,

    We considered having Gavin repeat first grade last year when he started second. He is one of the youngest in his class, as well as having the struggles he has. One important aspect we considered, is that Gavin was just another “normal” kid to all he knew in Kindergarten, before diagnosis. We felt that this would help him socially and emotionally to be with these peers that knew him during Kindergarten. It was also very important to Gavin. With this decision however, I know he would do better if he could go back a grade. I am blessed to be a teacher and worked with him this summer. He made great progress and he is willing to work hard to stay with his peers. It is difficult because I do not want to take away his motivation. To him, it also represents one more thing his brain tumor has taken away from him. Thank you for your perspective, as we are still going back and forth about this decision.

  • By Cheryl Nelson

    Wow. What a wonderful mom you are. So sad for you and Gavin, but you are fighting valiantly and he will be a better person for this. I went through a terrible illness 8 years ago where I was comatose for 2 months and woke up paralyzed from the neck down. As a 43 year old woman, I had to learn to do everything again, from feeding myself, to dressing, walking, talking, thinking, bathing, etc. My faith and good family and friends and LOTS of therapy have gotten me through it. I can now talk and walk and cook and read plus ride my 3-wheel bike, travel, and almost anything else except drive. So, go Gavin! You have a lot to offer this world. And hugs to Mom!

  • By Leslie Ratzlaff

    I’m glad to read about Gavin and your family. I can’t imagine how disruptive this has been for your family to have a child with a devastating illness. Through your story, however, I can see that you had wonderful resources and your whole family was in the fight together. Blessings as you continue this journey of life and ride the waves of victory and the many challenges ahead!

  • By Lettie Ritner

    What a brave and wonderful boy and what a dedicated family. I will keep you all in my prayers Tell Gavin I’ m rooting for him and hope he has a great Third Grade year. From a former teacher.

  • By Sherry Steele

    School is important, but you are right. Having Gavin is the most important. I am do happy for your family and the support you have from the school, doctors and PACER and all programs out there you have available to you.

  • By Darla Corah

    You go gavin .God is with every step of the way!

  • By Diane Little

    I can understand and know from experience what you and Gavin are going through. My son, Collin Little, has brain cancer, spinal cancer, and NF2. He has brain tumors. He also had a lot of surgeries also. We still struggle with him all the time and he is in special education at school. We did chemotherapy but his, however, failed and therefore had to stop the chemo right away. He is fully deaf in one ear and paralyzed in his neck as well from a spinal fusion caused by the brain tumors. You are in my prayers.

  • By Vicki Stubbe

    May God Bless Gavin during this journey called life. May his family receive the support of others while being the best caretakers and loving family he needs. My prayers are being sent your way.

  • By Merrilee Barkoff

    What an inspiring story! Gavin is so precious I am so happy he survived this terrible ordeal. He is very blessed to have such a loving family and I am sending hugs and prayers to all of you!! <3 xoxo

  • By Cheryl

    Gavin and your family,
    Your strength, perseverance and courage are beyond words. this world is blessed by your presence in it.

  • By Tina Wiggins

    I am Praying for Gavin and his family.
    May God continues Blessing the Family

  • By Tina and Adianna

    ❤We have been praying since we first heard about Gavin last year through a prayer request my sister passed on to me. She’s not a believer but cared enough for you all to ask me to pray for him. My daughter and I pray each night for him and I am so thankful he is doing well! Praise God!! I will tell her tomorrow about his miraculous healing! All our love from Middouri, Tina and Adianna

  • By Sandy

    Praise the Lord for the Miracle of Gavin being NED. Praying for the school experience and getting back to his childhood. Praying that he will be especially blessed for all that he had been through. Praying for you and all the emotions that you have been through on his journey.

  • By John James

    Mr. & Mrs. Pierson,

    I received your Caring Bridge somehow. I feel helpless and emotional. How can I help you and your family in anyway?

  • By Peg Feiler

    Praying for your family and especially Gavin. Keep trusting God and He will be there for you all the time!

  • By Patrick D. Payet

    Thank you for sharing your story. My prayer for Gavin, is that God will continue and bring to accomplishment of what HE, has started Gavin’s and your life. We serve a God of miracle.

  • By Sharon Penner

    Dear Nicole, my heart goes out to you and Gavin! God bless you all! We had a special needs child –she was a little angel – the sweetest smile — the Lord promoted her when she was only 6 1/2 years old – so she is waiting (in her new body) for us someday… How I wish we had known what we have now…. but it was not meant to be for Sherry. I am just curious if you have heard of Redox Signaling? and also stem cell nutrition? two amazing breakthroughs in science. All safe and do not interfere with the treatments.

  • By Michelle Ness

    My prayers are with all of you. Learning about Caring Bridge from a friend I lost last September has really opened my eyes that there is such caring people who are willing to help or volunteer for such a beautiful cause. My prayers will continue, God bless. Sincerly, Michelle

  • By Dana Ricketts

    Thank you for sharing your family’s and especially Gavin’s story. What a God given miracle! I applaud you in uplifting your family and so many others. I also will “ditto” the other comment do not lose sight of your other children as it is easy to do. I know you would not intentionally “it just happens”. I have also learned you have to find the strength and time to spend with each one of your children by themselves even if it is once a month to make them feel special. You and your family are special and i pray for Gavin’s ongoing process and his treatments.

  • By Shari Gentry

    Thank you so much for sharing your story of Gavin and your family… My son too has a brain tumor – has had radiation and 3 surgeries… He was diagnosed at 9 yrs old and in 3rd grade. He is a Senior in High School now and am so thankful that God has allowed us to have this time with him and hopefully more years to come… He also struggles because of the “after” radiation treatment.. While reading your story, tears fell with Joy.. because like you said “Gavin is here”! You have inspired me and I’m sure a lot of other families…Prayers to Gavin and your beautiful family… :)

  • By terry christopherson

    praying for gavin !!

  • By Shirley Meeker

    Dear Nicole:
    My name is Shirley Meeker, I am a retired school nurse, I care for a child name Brian. who also had a brain tumor. Hopefully, you have a school nurse at your son’s school who can be a source of knowledge and support for you and can go to your son’s teachers and explain all the issues he might face and when he needs to have sorest time and how you can provide that time when it is not instructional time. Always attend his ARD time, to remind the teachers what are going to be challenges and how you can be a helper through all these deficits he might experience. I always think of Brian and his parents and his two siblings. I will keep Gavin and your family in my prayers .

  • By Catherine

    I can totally feel & understand how a mother like Nicole feels like during that difficult journey. My son was 5 when he was diagnosed with brain cancer. Just like every parent, we fought so hard to struggle and I am thankful he is healthy again & is entering grade 3 now. School is a constant struggle together with fatigue. And i have to constantly remind myself to be patience with him and not to compare him with his peers or sibling. And more importantly, he is here with us is simply a miracle and i am very thankful for that.

  • By Shirley Tate

    My heart and prayers are with Gavin and your family. So happy for his success so far. I know he will continue to do well with all the support he has behind him.
    God Bless You, Gavin and your family. Take care.

  • By mary McCue

    Blessings to you all,I was diagnosed in December of 2010,i know all about the hospital visits & all that & how tiring it is & I am 44,so I can only imagine what its like for Gavin being so young,i wish you all well

  • By beth

    You are such a wonderful writer, and I hope you know how many lives you are touching just through your openness and honesty. Wishing you all health and happiness and joy! Team Gavin!

  • By Chuck Fried

    I had never dreamed- rather never imagined the intricate phases and neuances(sp?) of recovery from cranial tumor surgery in a person still in the formative stages of their life developement and physical growth. Thank you for making me aware, and God bless all of you in Gavin’s continued progress.

  • By Nancy regimbal

    God bless Gavin and his family. I hope he has a wonderful school year. My granddaughter Ashley is starting kindergarden. She is in remission from leukemia and just spent 5 months in the hospital after a tumor on her right kidney was discovered. She developed tumors on her spine which were successfully removed. She had complications but she is okay now.

  • By Doris Stegall

    Gavin, you and your family will be in my prayers. Hang in there big guy, you are going to beat this stupid cancer. God is good, lean on him. Love and prayers.

  • By Nancy Flohr

    Nicole,
    I am a grandmother of three healthy grandchildren. After reading your story I feel so very blessed. I wish you your family and especially Gavin the very best during your journey.

    g

  • By Peg Feiler

    Praise God for miracles!

  • By Carol Hubert

    This was a wonderful an touching story. It made me sop and think about how very lucky I was when my tumor “hit”.
    I thought back to how lonely i felt and how much the books that Connie sent me helped get through everything else. I also know just how lucky I have been, especially when I have a small relapse (luckily, this has not happened in a very long time). I know how to control my thoughts and take my medicine (that I mistakenly missed) but I also know how truly blessed I am with my loving and caring friends. I never would have gotten through it all without them and I didn’t really know how to tell them how much they meant to me. So I guess this is my way of saying to all of them how much I truly appreciate all that they did (and continue to do) when I have a small relapse due to over-excitement–like at my retirement party. Luckily, i did not have any reaction until I got home and realized that I had not taken my pills–at all–that day. So when Eileen and I were sitting down to talk and Debbie called to see if she and Ed could come and see Eileen and me, I agreed. Luckily, when I saw all my pills in the pill container, i took the ones I really needed and welcomed them to my house and just sat quietly and listened to them talk. By the time they left, I was feeling much better–but Eileen told me the next day that she figured something was wrong because I had been so quiet. Of course, by then, I was back to my “old” self. So, Rosemary, even though this board is supposed to be for all your friends to write you encouraging words, it has also served as my way to say thank you to all of you who cared enough for me to be very patient and treat me like a regular person even though for a small
    time, i wasn’t. I also want to apologize to Rosemary for sort of “taking over” this spot to tell my story to those whom i love. An I also want to say a huge THANK YOU for everything you did then and continue to do now. My apologies
    to Rosemary for using this as my own confessional: I have wanted to say this to everybody who helped me in whatever way they could and let them know how very much it meant to me–and still does.

  • By Tammy

    Thank you for sharing yours and Gavin’s story, Nicole. It will encourage many families, especially your last sentence. We need to remember to look at our glass half full rather than half empty, particularly in the difficult times of our life. What we learn in these difficult seasons of our life can help the next one if we are willing to share the positive comes, if we are willing to look for it. My prayer is Gavin really becomes a champion of what victory over cancer looks like to those whose path he crosses, showing that every hurtle, large or small, he crosses over matters and may be just what someone else needs to keep going, be they the patient or the caregiver.

  • By Jerri Colette

    Nicole, thank you for sharing your story. Please know that I think that you and your family are awesome. My prayers are with you daily and continue to pray for health and strength for you all.