Supporting Research into Paediatric DIPG

Bobo's Story

Robert Andrew Munro, fondly known as Bobo, was born on 3rd April 2004 in Inverness to Jenny and Mark.
baby bobo
Bobo was a content boy

Bobo grew up with his dad, mum and wee sister Iby in the Highlands of Scotland. He also has an older sister, Naomi. Over the years we proudly watched Bobo grow into a loving, caring young lad. He was intelligent, funny and totally original. He was a joy to have.

Bobo & Iby
Bobo & Iby

On the 22nd October 2006 Bobo's little sister Iby was born.

bobo iby super hero's
Our Superheroes

Bobo was a wonderful big brother and we will forever treasure the many happy memories.

bobo motocross
Bobo scrambling around the garden on his Honda

Bobo was a typical boy who loved bikes and cars. He was particularly pleased when he got his first motocross, aged 3 years old.

bobo driving
Driving big sister's car

He would also seize any opportunity to get behind a wheel (private track).

bobo football skills
Bobo's football themed birthday party

He loved football, whether playing Fifa on his playstation or honing his skills out on the field.

Bobo Football Carrbridge
A fresh Saturday morning in the Highlands

From a young age Bobo was committed to soccer sevens and his school football team.

bobo pipes
Bobo playing the bagpipes

We were very pleased when Bobo came home from school one day with a chanter. He was naturally talented and soon progressed onto the goose.

In September 2015 Bobo played his bagpipes at his Uncle and Aunties wedding. Little did we know this would be the last time we would hear his wonderful playing.

Not long after our family occasion he started having difficulty pursing his lips while playing the bagpipes. We also noticed a slight facial palsy. After an emergency appointment to our doctor we were referred to Raigmore Hospital, Inverness, for an MRI who then referred us to the Royal Hospital for Children, Glasgow. Bobo underwent his first biopsy.

bobo 1st biopsy
1st biopsy, Queen Elizabeth hospital, Glasgow

On the 13 November our then 11 year old son was diagnosed with a deadly brain tumour, Diffuse Intrinsic Pontine Glioma (DIPG).

Our world had been completely turned upside down. DIPG has no cure and the treatment offered was radiotherapy and a course of chemotherapy. We spent many, many hours researching possible alternative treatments and consulting with our Oncologists for any lead which could help our son.

 

Radiotherapy Beatson
1st round of radiotherapy, Beatson Cancer Centre, Glasgow

Bobo was steadfast throughout his treatment. He underwent two brainstem biopsies, two rounds of radiotherapy, an alternative trial of Sirolimus and a mixture of other medication such as steroids. He did not complain and dealt with each of his treatments courageously. Even through the difficult times he got through them with devilment and humour.

Bobo, whilst on a trial of Sirolimus, a first in Scotland, had a good year from diagnosis to November 2016. Even though he couldn’t play his pipes, this didn’t stop him playing music. He started to teach himself the piano and over a short time he became an accomplished player. He had fun with his dad on their motocrosses and enjoyed baking with his mum. He was fortunate to be able buy a couple of new bikes, thanks to the generosity of family, friends and community. He found it extremely amusing being allowed to do an engine rebuild in the kitchen, adding a new exhaust and lots of new parts on the condition the bike was out of the house before Christmas - 2am Xmas morning to be exact! Sadly he only got a couple of shots of his new bike as his balance and walking started to deteriorate.

2nd biopsy
2nd biopsy

In November 2016 Bobo went through a second biopsy at Great Ormond Street hospital.

great ormond st
Leaving Great Ormond Street hospital, London after operation

One of the few times he got upset was the thought of a second biopsy. However, in the knowledge tissue could be vital for research which could not only benefit him but also other children, he decided to go ahead. This was the measure of our incredible boy.

2nd round of radiotherapy
Last day of 2nd round of radiotherapy with June at the Edinburgh cancer centre

Three days later we travelled to Edinburgh for a second round of radiotherapy, also the first child in Scotland to have this treatment.

February 2017, we had the consultation no parents should go through. No markers were found from either biopsy for targeted treatment. We had run out of options, there was nothing else they could offer our son other than palliative care.

13th birthday
Motocross helmet chocolate cake

On the 3 April 2017 Bobo turned 13, a milestone birthday. He couldn’t speak at this point, lost his ability to move, he couldn’t have a piece of his birthday cake because of swallowing issues.

Bobo was being robbed of all the things he loved to do, he could no longer play the piano, PlayStation or ride his bikes. Progression of the tumour was brutal and over the last few months Bobo lost all his abilities and needed 24 hour care. How dreadfully painful and agonising for any parent to watch, how utterly devastating for Bobo.

On the 15 June 2017 Bobo tragically passed away. He fought with outstanding courage to the very end. We are so proud of our son and how he dealt with his illness, how inspiring he was throughout. He was only 13 years, 2 months and 12 days old.

You bring your children into the world wishing them a bright and happy future. Sadly for some, this is not the case.

Diffuse Intrinsic Pontine Gliomas (DIPG). The deadliest form of paediatric brain cancer, prognosis 6-9 months.

We had never heard of DIPG before

A tumour in the pons of the brain which controls sleep, breathing, swallowing, bladder control, hearing, taste, eye movement, facial expressions, facial sensation and balance. The deadliest form of paediatric brain cancer, prognosis 6-9 months.

We wished we had never heard of DIPG

We share our harrowing story of this cruel, unremitting disease in part because of the thoughtfulness and strength Bobo demonstrated to all - his personal fight should never be forgotten! In the 21st century no child and their families should endure the pain and heartache we are going through. Sadly Bobo cannot play football any more, he cannot ride his bikes, play the piano or wind up his sisters. We no longer hear his laughter, his wise cracks, his bagpipe playing, we no longer see his smile and the mischievous glint in his eye. He meant the world to us.. x ?

We continue this fight against DIPG in his memory through the Robert Andrew Munro - RAM Foundation.

beads of courage
'Bobo the Brave'
Beads of Courage representing each milestone

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