The Diagnosis

On the 25th of July 2017, just three weeks before his 12th birthday, Finn was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) a brain tumour that is considered terminal on diagnosis.

Imagine being told that your child has cancer, then in the next sentence being told that there is nothing that can be done to save them.

“Take Finn home with this medication and make some memories”, it was as blunt as that.

For the next twelve months, as a family, our lives became almost unbearable;

I say almost because at the centre of it all was Finn, the quiet, polite little boy that never gave up hope.

The boy that gave us strength when we had none and showed us that love and family are all that you need above everything.

The day we told Finn that he had cancer was the only day that I heard him ask “why?”

It was the only day that he looked scared, and the last time that we heard him cry.

"He never gave up hope"

The Treatment

Finn started radiotherapy treatment soon after, not to treat his cancer but “maybe” to extend his life by a few months.

 

From that first treatment we saw a change in Finn. He suddenly seemed stronger and more determined than I’d ever seen him.

He would say “I can beat this”, our hearts would break at this as we knew that there was only a 1% chance that he would, but his smile would carry us through.

For the next few months, Finn remained relatively good.

The turn in his eye had gotten worse, which blurred his vision, meaning he had to wear glasses with one lens covered.

His breathing became heavy, which would never worry him, but it worried us.

"I can beat this"

The Next Few Months

In February Finn’s health took a turn for the worse, he was rushed to the University Hospital of Wales and we were given the devastating news that Finn would only live for a maximum of two weeks.

We were broken and scared. Our world had fallen apart. It felt like we had nowhere to turn. That night was the worst we had since diagnosis.

 

The following morning after having fluids on a drip as well as steroids, Finn was able to sit up and talk.
That afternoon we were taken by an ambulance to Ty Hafan Children’s Hospice,

Finn painted his hand and put his print on the wall with all the other children’s hands.


With an increase of steroids (which always gave Finn some relief from his symptoms), we were offered ten more days of radiotherapy.

We stayed at Ty Hafan for three weeks during that treatment and eventually we were allowed to go home.
We all were glad we were home.
Amazon were also grateful as Finn kept the delivery drivers in jobs delivering all his parcels.
Finn was happy playing Xbox, watching memes and vines with his brothers and he loved playing board games and watching films, as long as we were all together.

"Our world had fallen apart"

Finn’s Determination

Finn was always determined to do as much as he could despite the difficulties with his mobility. We managed to have days out to the cinema and just for walks. We’d wrap Finn up in blankets and push him around all the places we loved to go. 

Through all the hardship he faced, Finn never lost his sense of humour. He would smile all the time. His incredible strength gave us all strength to go on even though we could see him slowly losing the ability to do everything he could before. 
We were admitted to Ty Hafan again at the beginning of June 2018. Finn had started to deteriorate further. He could no longer use his hands to do the things he loved like building Lego and playing Xbox.
He continued to enjoy the pool at Ty Hafan although he could no longer hold himself up in the water.

We remained at Ty Hafan whilst Finn slowly deteriorated before our eyes. The staff were incredibly supportive of the whole family.


DIPG took everything from Finn, and in the end, he could no longer feed himself or speak.

The worst thing of all was that he had lost the thing that kept us all strong – his ability to smile.

Finn passed away at 15:37 on 20/7/2018, just six days short of a year since diagnosis and four weeks short of his 13th birthday.
His brother, Jack, had asked him if he was okay, Finn managed to nod his head, then closed his eyes and he was gone.


We were all together when he died as we were all together when he lived.
We will remember Finn as the beautiful boy with the big smile and even bigger heart.

Finn's foundation is a registered charity, located in Wales (1181980)

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