Hospice Care Week – Lennon’s Hospice Journey.

Nikki Lancaster - 9 Oct 17

I had very little knowledge of Hospices before Lennon was referred to Keech children’s hospice in 2009. There are no children’s hospice’s in Hertfordshire – The County of Opportunity. Children with a life limiting diagnosis living in Herts are referred to Keech Hospice Care. The children’s hospice at Keech covers Milton Keynes, Bedfordshire and Hertfordshire.

Lennon was 2 and Isla was 18 months old when we first visited Keech Hospice. I honestly did not know what to expect.
However, what I did know was that we needed the occasional overnight break from caring for an extremely medically complex child.

Lennon had spent the majority of his first 2 years in hospital – mainly in ICU and respiratory wise he was very unstable. He was oxygen dependant, had frequent apneas and needed resuscitation. Aswell as his 24 hour jejunostomy feed and hourly gastrric fluid replacements. It was a heavy responsibility at times, and we were never able to process and come to terms with the fact our baby boy was so extremely poorly.

I don’t remember too much about our first visit to Keech. We got lost on the way there and almost ended up in Coventry (quite typical of us!).

Keech Hospice sits at the end of a long lane. As you drive up, the hospice isn’t visible until you reach the end – the hedges clear to reveal the building.
I wondered if it was intentionally that way…..

We parked up and I noticed the sun shining brightly onto the building – I observed this many times over the years.

Isla fell in love with the giant bear and rocking horse and Lennon was memorised by the illuminative sensory room.

They had a comfy living room area, and a large dining room with a magnificent table where everyone ate meals together – regardless of whether you not you were able to feed orally. I loved this. I was always unsettled by the way Lennon was left out of mealtimes because he was unable to eat.

They had a outside area with equipment and toys, plenty of arts and crafts, a music room, and a hydrotherapy pool. The pool became one of Lennon’s favourite places over the years.

They also had 5 homely bedrooms, each with adjoining bathrooms and a nurses station. All fully accessible.

The staff were all so happy, calm and kind, and I felt safe knowing that when I left him for his first stay Lennon would be looked after by enthusiastic, fully qualified staff who were capable of carrying out the complex care routine that Lennon needed in order to survive. I also knew that he would have fun and be happy there.

The biggest memory that I took away from that first visit was that Keech Children’s Hospice was not a sad place where children go to die. It was a bright, happy place, with family values where children can enjoy life, and forget about their troubles. A hospice full of life.

It was about living, not dying. It was about making the most of the time you had.

Quality not Quantity.

Over the years Lennon stayed overnight at Keech many times, and the staff got to know him and his overactive personality. He loved to run around in his walking frame, seeking to banging his head on anything hard that he could find, and sat thoughtfully flicking through his Wickes catalogues (which progressed to Argos in the months before he died).
He loved the new garden especially the pond, he was there when Love Your Garden finished the project and even featured in the BBC programme.

He would always come home armed with plenty of artwork to adorn my walls. That very same artwork is still adorning my walls.
Lennon loved to paint, and eat paint. You could always tell what colour he used as it would drain out into his gastric bag!

Lennon also made a point of guiding the staff down to the swimming pool every time he stayed – it was his way of communicating that he wanted to go swimming. He would stand at the window and watch people swim whilst laughing and frantically flapping his arms.

Lennon loved to swim at Keech. Once his Hickman line, then PICC lines were removed and replaced with a Port a Cath, we took advantage of the family swimming sessions that Keech Hospice offered. Because Lennon has a problem with temperature control and his blood sugars, he was only allowed to swim in a hydrotherapy pool with a heated changing room. Luckily Keech had exactly that! It was also a plus that they had a changing room with hoist tracking and a bed so that we could change Lennon’s many dressings and dry him safely after his swim.

Keech Hospice quickly became a stable, integral part of all our lives.

I took part in a fundraising campaign on behalf of Keech and went up to Capital Fm to help cycle the distance from Lands End to John O Groats.

Ian ran the 2017 Virgin London Marathon for Keech.

The kids took part in a 5k Superhero run.

Over the years we raised almost £10k for Keech Hospice. To thank them for taking care of us.

We always knew it was unlikely that Lennon would live to be an adult and over the years we speculated about the end of Lennon’s life – how, when, where. I always wanted the end to be at Lennon’s happy place, Keech Hospice – Where he would be loved and cared for right up until the moment he took his last breath.

I wanted him to be known – I didn’t want Lennon to be just another patient. A statistic.
It was important to me that the people caring for Lennon, and us, at the very end, were a part of Lennon’s eventful journey. I wanted them to of heard his deep belly laugh and his quirky quacking noises, to of seen his captivating smile and his frantic arm flapping, and to of experienced his thirst for life and proving people wrong.

In the end, we couldn’t get Lennon to Keech. He was too unstable, and I wasn’t prepared to loose him on the roadside in an ambulance.

My final wish for our precious little soldier to take his final breath at one of his favourite places had disappeared in the blink of an eye.

It wasn’t to be.

But, the staff at Keech Hospice and Addenbrookes moved mountains and Lennon arrived at his happy place just 12 hours after dying.
The staff there loved, and cared for him in the days and weeks after he died. Just like they would of loved and cared for him in his final hours. They washed him and dressed him in his page boy outfit. They talked to him and smoothed his baby soft hair.
Lennon favourite belongs carefully placed on top of his coffin.

We were able to go to Keech and visit him. In the first days I sat with him, held his hand and spoke to him. I laid my head on his chest and sobbed.I had to make a decision to stop going in there before I became too attached.
We then sat in a adjoining room – I needed to be close to him.

The staff looked after Ian and I, the girls, and our families. They served us meals, made us endless cups of tea, and shared their memories of Lennon.
They kept the girls occupied and gave us the right words to help Lennon’s sisters understand what had happened to their beloved older brother.

They mothered me and I needed them to. I felt like a lost child.

On the morning of Lennon’s funeral we drove up the long lane to Keech, just Ian and I. I thought back to the first time we ever drove up the lane and I wondered again if the hospice being hidden behind hedges at the end of the lane was significant…….

Nikki Lancaster

Mummy to 3. Lennon, Isla and Florence. Campaigning to Save NHS Nascot Lawn children's respite and change perceptions on children's end of life care.

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