Benign Tumours Are Not Harmless, Innocent Or Fine

Back in May my non verbal ten year old son went for a routine MRI scan because he has a genetic condition called Neurofibromatosis Type 1 (NF1). What happened next changed my entire family. A few weeks later I had a phone call from my son’s neurologist to say they had found a brain tumour and after discussions with a neurosurgeon and oncologist he had major brain surgery a few weeks later. My son was admitted to hospital and underwent a six hour craniotomy operation for a brain tumour biopsy. He had a long recovery.

Results came back that his tumour was ‘benign’ so I looked up the word and breathed a huge sigh of relief. According to the dictionary that meant his tumour was ‘harmless, innocent, superficial and innocuous’. Fantastic!

Except it wasn’t.

As his surgeon later explained it actually doesn’t matter wether a tumour is benign or cancerous as, especially in the brain, they are just as dangerous and cause major effects.

My son may need chemotherapy at some point. He may need further surgery. His tumour caused him to be epileptic, vomit, have visual difficulties, lose balance, be very lethargic, and be very unwell.

Benign isn’t fine and never will be.

We need to rethink urgently what benign means.

Having a benign tumour isn’t fine for Joe who has had two years of chemotherapy and is now almost blind.

Having a benign tumour isn’t fine for Tayen who is now on her fourth round of chemotherapy, epileptic, and is completely blind just to name a few of her very complex needs.

Having a benign tumour isn’t fine for Evia who is also blind and has had two years of chemotherapy.

Having a benign tumour isn’t fine for Logan whose tumours in his neck, throat, heat and arms are so aggressive surgery is no longer an option leaving him with lung disease, epilepsy, learning difficulties, scoliosis and hypotonia.

Having a benign tumour isn’t fine for Ella who has endured major surgery on her spine.

Having a benign tumour isn’t fine for Ronnie who has had chemotherapy and now has vision loss.

Having a benign tumour isn’t fine for Isobel who has a tumour in her head mouth and cheek and is blind in one eye and facially disfigured.

Having a benign tumour isn’t fine for Harley who has had two operations, 7 general anaesthetics, 5 MRI’s and chemotherapy.

Having a benign tumour isn’t fine for Jon-Paul who is in chronic pain daily with a tumour on his ankle.

Having a benign tumour isn’t fine for Heather who has had her leg amputated below the knee die to a tumour.

Having a benign tumour isn’t fine for Ruby who has endured surgery and 18 months of chemotherapy for a brain tumour.

Having a benign. Tumour isn’t fine for Dan who has had chemotherapy, sepsis and has vision and hearing loss.

Having a benign tumour isn’t fine for Harvey who needed brain surgery.

Having a benign tumour isn’t fine for Kiki who has had chemotherapy for a brain tumour.

Having a benign tumour isn’t fine for Kearyn who has vision loss.

Having a benign tumour isn’t fine for Teagan who also has had chemotherapy as vision loss.

Having a benign tumour isn’t fine for Elayna who is having brain surgery next month.

Having a benign tumour isn’t fine for Shay who has had two brain tumour surgeries so far.

And finally having a benign tumour isn’t fine for Evie who has operations to remove her tumours resulting in a facial nerve being severed and loss of hearing.

Are any of these cases ‘harmless, innocent, superficial and innocuous’? Is that how you would describe what my families and all these other families have been through and continue to go through?

Tumours related to NF1 May be benign but that doesn’t mean we can ignore them. Benign tumours cause pain, damage, deformities, disabilities and can kill.

For the sake of my son and all the thousands of other families living with benign tumours, wether NF1 related or not please can we redefine what benign means and stops giving the impression that benign tumours are ‘fine’.

They are absolutely NOT fine.

Please support the Childhood Tumour Trust campaign using the hastag #BenignIsNotFine

For more information please see http://www.childhoodtumourtrust.org.uk

Thank you.

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To Everyone Who Helped My Son Through Brain Surgery

Rarely in life is the picture small. One simple stone thrown into a still pond creates a ripple that lasts long after the impact. So it has been with my ten years old’s recent brain surgery. This is a thank you to everyone who has been part of that ripple with one little amazing boy at the centre.

To the neurologist who saw my son for the first time after his previous neurologist retired and who immediately referred him for a routine MRI when he noticed it was later than originally planned: thank you for your diligence and quick referral. Without that my son would be suffering right now and no-one would know why. You were the person who threw that pebble and you did it with such attention to detail and care.

To the MRI clinic receptionist who called me with the date for that MRI: You had no idea you would be calling me several times again a few months later and we would recognise each other’s voices. Thank you for your professionalism and your cheery demeanour. I know we will be talking again soon, sooner in fact than anyone thought.

To the nurses who looked after my son on the day ward and have done five times now as he has become a regular in that day surgery. Thank you for always booking him a single room 3 because experience has taught us he won’t go anywhere else and doing all his checks as quickly and unobtrusively as possible. You take the time to understand him and allow me freedom to support him the way that works best without interfering. You make what is a long and difficult day more manageable for both him and me.

To the anaesthetist who I know like a friend: thank you for always putting my heart at rest and listening to my concerns. I alway know I am putting my baby in safe hands. Thank you for your reassurance time and time again. I was hoping we wouldn’t see each other for a while but when we meet again soon I will once again leave you with my sleeping child and trust you to keep him safe. You have proved your worth and continue to do so.

To the radiographers who have looked at my sons scans so many times and who have spotted first a tumour on his optic nerve, then other signs of concern and who quickly alerted medical staff to the mass on his right frontal lobe. Thank you for your attention to detail. Your diligence and thoroughness are what have made the difference between surgeons removing active brain cells and dead ones in my sons complex brain. You are partly responsible for his great recovery and quality of life.

To the oncologist, neurosurgeon, neurologist and radiologists who have met and discussed my son’s case numerous times: I know he has caused division and discussion but thank you to every single one of you for caring enough to want to help and investing your time and energy in seeking answers.

Thank you again to the neurologist left to make that call to me to say what had been found on my sons scan. I can only imagine the turmoil that call caused to have to phone an anxious mum at tea time and tell her surgeons she had never met wanted to do brain surgery on her non verbal autistic son because they had found ‘something” in his brain they didn’t like. You made that call with such compassion, such concern, yet such clarity that you left me feeling my son would be looked after and all would be well even though I was in shock. Thank you for going above and beyond and calling back the next night just to check on me. I will never forget your kindness.

Thank you to the neurosurgeon and oncologist for finding time in your busy schedule to meet with me and answer every question I had and letting me see scans for myself . Your care and straightforward talking made me feel secure and at peace knowing you had a plan and experience on your side.

To the staff in the day ward who coped with my distressed child when for the first time his anaesthetic failed and he woke in the MRI machine, thank you for your quick thinking and for making sure my son recovered from the trauma.

To the staff in the neurological ward who found themselves admitting a child with complex needs who spent the entire day pacing the ward while his mum read out the numbers in every door: thank you for your endless patience, adapting to my son’s ways and coming in to work the TV endless times a day to keep him settled. You made his stay bearable and tolerable against all odds and I know you will do it all over again in a few months when we are back to repeat it.

To the surgeon who worked on my son’s brain for six hours tirelessly unsure what you were going to see yet determined to find enough of that ‘something’ to biopsy and get answers. The scar you left has astounded many with how incredibly clean, well sutured and neat it is. You took great lengths to make sure you got everything you needed whilst carefully replacing the layers of my baby’s brain and skull. You then took more time to talk to me and show me what you had done and then met again with me weeks later to discuss the results. I could see your frustration when the results came back different to expected but your tangible relief in sharing it wasn’t cancerous made me realise how much you care about what you do. When you broke the news of the likely need for more surgery you did so with tenderness and care knowing this wasn’t something I wanted to hear.

To everyone who has messaged, prayed, supported me and my family, send cards, bought gifts for my children and hugged me as I cried: thank you. I could never have gone through this alone.

My son has been incredible. His resilience and determination has astounded me and I have faith he will get through this again when it all needs repeated to remove the tumour/lesion as best as they can in a few months time.

When you are part of the ripple in someone’s life it can be hard to see that your role, your part, is of any significance at all but everyone makes a difference. From the person making the phone call to the hand holder, to the person pushing the bed to theatre to the most qualified professional of all, we should never underestimate the role we have in helping someone else be the best person they can be.

Thank you to everyone who helped my son through his brain surgery and who will do it all again this summer. Without you all my son would not be loving life and loving me the way he does.

You had a role in saving a life. Be proud of yourself and know you are appreciated greatly.

Thank you,

From an emotional mum.