Supporting Families though Head and Neck Cancer

Understanding Cancer through the Eyes of a Child

The incidence of head and neck cancer is steadily rising in the younger age groups (under 50 years). As a direct consequence, more parents of young children are being diagnosed with this cancer. Talking to a child about a parent’s, grandparent’s, sibling’s or other loved one’s cancer and how it will affect the family is never easy, but it is necessary.

So, how do you tell your children you’ve got cancer?

Esnes Parsons is the daughter of Mouth Cancer Foundation Ambassador, Rachel Parsons, who was diagnosed with buccal mucosa, a cancer of the lining of the cheeks in 2008 when Esnes was 7 years old. Esnes is now 20 but here is her story from her 7 year old self…

Esnes’ Story

Esnes’ Story

testimonial Seeing my Mum go through mouth cancer was difficult to see, sitting there and watching cancer slowly destroy a person is hard enough but watching it happen to a family member is even more terrifying. The worst part about it knowing that you can’t take the pain away, switch places but instead having to look them dead in the eye, tell them everything is going to be okay and let the medication and recovery take its toll. To sit there and see how everything they have ever lived for is slowly crumbling down right in front of their eyes. To go to sleep knowing you were going to wake up the next morning and yet others couldn’t be so sure. Something that is taken as granted by others was now my Mum’s biggest fear. Having to look in her saddened and worried eyes and say goodnight was extremely difficult for a seven-year-old like me. Here is our story.

Esnes’ Story

As I was waving goodbye to my Mum, I felt hopeful for the day ahead of us, like I almost knew everything was going to be okay. However as anyone would I still had those ‘what if’s’ cemented into my brain. I made time pass quickly as I occupied myself with a few arts and crafts to stop my thoughts turning a hundred times over in my small head. Aged 7 I didn’t really understand all the fuss; so, I tiptoed down the stairs and lowered my small frame onto the third step up. The phone rang and my stomach churned as I knew Dad was expecting an ‘important phone call’. I thought it would just be something to do with work. It never crossed my mind that this was the last day I was going to be an ordinary seven-year-old girl without a care in the world. I placed my ear carefully against the door and listened until I heard a sigh of relief.

I sprinted into the lounge dodging all the obstacles around me, Dad was fine, I was alright and everything just seemed like normal so I went back to my spot on the stairs.

Hours passed and I woke up from an unexpected nap on the stairs to the persistent ring of the landline phone. Then it stopped- I assumed someone had answered as I didn’t hear the happy bubbly voicemail Mum and Dad had recorded before. Instead, my ears were met with a very dark, sinister and worried voice from my Dad. I raced into the lounge after I heard the beep of the landline phone to find my father doubled over with his head in his hands, unable to fight back the tears. The man I had always seen as such a strong brave figure in my life, the man who always told me everything was going to be okay. But this time he couldn’t be so sure. I knew what it was. He didn’t have to say anything. Is Mum going to be, okay? I sobbed. His reply “yes mummy is going to be just fine, don’t worry” he pulled me in close.

I later learnt that the only questions that Mum had was “Am I going to die?” She was met with the response “We can’t tell you yet” I never in my short life expected Mum to ever have cancer.

My big brother Jake, 11, joined us sat on the sofa carrying Rylan aged 1. He put his arm around me and Dad as we all began to cry. Laigan, 3, was too young to understand and Cavan, 5, cried because he saw that Jake dad and I were crying, Cavan was like that.

Mum came home upset but strong. She walked through the front door with such an immense amount of pride, regardless of how scared and worried she was. Mum understood the situation well and how a little ulcer in her mouth could lead to the dreaded word. Cancer. All of us crowded round her as she scooped us all up in her arms and protected us all from the worry and fear with nothing but a hug. She told us how the special doctors were going to make her poorly mouth so much better.

The day came where we had to say goodbye to Mum while she went into hospital for her operation. Mum had never spent time away from us and vice versa. It was so hard. Dad explained to us that the operation would take 9 hours. I was made aware by family that it wasn’t going to be an easy recovery journey for Mum and that it would take a while. I was told by my granny that my Mum may not sound the same after and that her face would be quite swollen and she may look a little different. I didn’t care, just as long as my Mum was safe and healthy.

It was hard at the age of 7. When all I wanted to do was tell her how my day was at school and for her to help with my homework. Instead, I was having to wait until she woke up. Everything was exhausting. Cancer doesn’t just affect the patient; it affects everyone around them also. I was amazed that some how I missed Mum shouting at me to tidy my room or to do my homework. It’s the little things that you miss and you don’t realize until you can’t have them anymore.

The other kids at school didn’t really understand why I would want to get home so fast so I could help care for my Mum. Brush her hair and put it into two French plaits just like she used to do for me. The roles were reversed. I would lay in bed with Mum for hours just making every second count because tomorrow wasn’t promised. No one understood why when I would hear the word cancer, I would get emotional. No one understood how much I wanted to just turn back time and go over them days where we would have petty arguments and take it all back. Go back to the days where Mum was healthy and confident. I needed my Mum.

Things finally got back to as normal as they were ever going to be again. I soon realized that I always had my Mum it just wasn’t the life I knew and I soon adapted to it. It’s now been 13 years later and since that day I have never taken the little things for granted. I am so proud to call her my Mum and she will forever be the strongest person in my life. testimonial

Esnes Parsons 20

How to talk to kids about a cancer diagnosis

Professional motivational speaker, story teller and Mouth Cancer Foundation Ambassador, Eva Grayzel, lives in America and was faced with this very scenario with her own stage 4 tongue cancer diagnosis at the age of 33.

“I couldn’t find any books to explain cancer in an easy-to-understand way, and address feelings children may experience,” said Eva Grayzel, mother to two young children during treatment for stage IV oral cancer.

So, she authored two books:
https://www.evagrayzel.com/mc-plays-hide-seek to minimize fear and promote dialogue around cancer. Available from https://www.amazon.com/M-C-Plays-Hide-Seek-Grayzel/dp/1645431436/ Or, listen/watch the author read the book here https://youtu.be/Wzm4_x9UDu8

Now an expert on how to start ‘the cancer talk,’ Eva published several blog posts on the subject:
the cancer talkEmotions
the cancer talkWhy Tell
the cancer talkActing Out
the cancer talkFind Gratitude

Children talk about Eva’s book, M.C. Plays Hide & Seek:
Dani, 7 years old – https://youtu.be/sPd_7YQOpfo
Sisters 8 years and 10 years old – https://youtu.be/k70s3h9JfJM
Giselle, 8 years old – https://youtu.be/6WvDRr5Ne9E

For Further Information
macmillan
cancerresearchuk
cancerresearchuk
cancer care

Children diagnosed with Head and Neck Cancers

Mouth, head and neck cancers are extremely rare in children and adolescents. More than 90% of tumours and tumour-like lesions in the oral cavity are benign.

Nevertheless, finding out that your child, (no matter how old they are), has cancer can be devastating. There are a whole range of emotions you go through as described by our Peoples’ Ambassador, Pat Jones, whose beloved daughter Clare passed away from tongue cancer in 2007.

Clare’s Story

Clare’s Story

“As parents we could never have expected or prepared ourselves to be sitting next to our 19-year-old daughter Clare and her being told she has Mouth Cancer. In that moment all our lives changed forever. We then had to tell Clare’s brothers Simon and Kevin, the devastating news. A tsunami of emotions then swept through the wider family and friends. All our lives took on a rollercoaster ride of appointments, treatments and emotion. Everyone took on a role. Clare’s Dad took us to all the various appointment on time. Whichever hospital or clinic, in whatever town or city we had to be, her Dad got us there. I was by Clare’s side constantly asking questions supporting her through all her various treatments and always there to listen and to be a shoulder to cry on. Simon and Kevin gave support to whoever needed it most at the time and always tried to bring some humour into Clare’s life. Her friends visited and talked about everything or anything but cancer. Through it all Clare was so brave and strong and because she was it helped us to be”.

Clare’s Story

Not long before Clare was diagnosed with cancer, she was a bridesmaid at Kevin’s wedding. Kevin says “I was so proud to have Clare and Simon by mine and my wife Jo’s side on one of the biggest days of my life. One of my favourite photos in my home, which I see every day, is of us all together on that day”.

Just 12months later Simon got married and Clare was again a bridesmaid but so much had happened in those twelve months and we all thought Clare had come through everything. Simon says “It was such an emotional moment when Clare stood up in front of the whole congregation and read out a poem about love. Not afraid to show her battle scars it showed us all what a remarkable young lady she was”.

Clare’s Story

Clare had been given a good prognosis for the future and she was determined to turn life’s events around and help bring awareness of mouth cancer to as many people as possible. But Clare was one of the unlucky ones her cancer having been diagnosed late and the cancer returned.

What got us through everything and continues to do so every day is love and support, always being there for each other. Today we continue to tell Clare’s nieces and nephews all about her. We keep her memory alive but miss her every day.

What would my advice be to anyone unfortunate to find themselves in a similar position?

Try to take one day, one appointment, and one treatment at a time. Try not to waste time or energy on being angry or asking “Why us” Many people young and old have, and will continue to have cancer and it effects all those loved ones around them. If anyone is having a bad day don’t be afraid to cry take a moment then dust yourself off and go again. Stay close and stay strong together!”

Clare was a student at Loughborough University when she was first diagnosed in February 2003. She had an operation to remove the right side of her tongue, reconstruction with a flap from her right forearm and a neck dissection. Clare joined the Mouth Cancer Foundation initially to find out how others coped. In Clare’s words “I would like to discuss my feelings with people who have experienced the same operation as myself”.

In June 2005 Clare graduated from Loughborough with a first in Information Management and Business Studies and got a job at the Swansea NHS Trust. Within 12 months Clare had secondary bone cancer and bravely went through the treatments offered. It was a difficult time for her and she was very, very scared. She finished her chemotherapy and was looking forward to a better 2007. Unfortunately, the MRI scans showed no change in the size of her cancer, which eventually spread to her brain and Clare passed away peacefully with her family by her side.

Further Information:
younglivesvscancer
cancerresearchuk
cancerresearchuk
childrenwithcancer
https://www.teenagecancertrust.org/

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