The need to strengthen choices in Children’s Palliative Care. 

On Sunday I sat listening to BBC5Live Investigate with tears trickling down my cheeks. I felt the pain of Hayley and Charlotte describing their lives because I have walked a similar journey.

You cannot begin to imagine that journey if you have never walked in those shoes. Trust me. Since Lennon has died I now know what a ‘typical’ life is. What it is like to get through a day on 8 hours sleep, not have to make life or death decisions on no sleep, to not feel like you are solely responsible for keeping your child alive every second of every day.

Preparation for bath time.
Lennon’s medical cupboard.

The responsibilities of living with a child who requires medical care 24/7 are immense and the weight you carry is beyond heavy. It’s unimaginable.

Lennon had always required a high level of care at home – so much so that neither Ian or could work. Our care package was always good (not brilliant) and generally we managed ok. We were lucky enough to receive 36 nights a year respite at Nascot Lawn – an NHS nurse led respite provision and that made all the difference to how we coped. We knew that we had one weekend every month when we could catch up on sleep, spend time with Isla and Florence and prepare ourselves for the month ahead.

In the last few months of Lennon’s life everything changed. We spent a long period of time in hospital and when Lennon was discharged his needs increased to a point where we felt like we were drowning. Our care package was increased but that only touched the sides.

Lennon helping to carry his notes to an outpatients appointment. (Said notes ended up all over the lift floor seconds after this photo was taken!)
Lennon recovering after his ileostomy surgery.

We couldn’t cope and that broke my heart. All I wanted was to be able to care for my child and look after him myself, but I needed constant help to be able to do that.

And then a bombshell was dropped onto us. We were told that Nascot Lawn was closing due to a decision made by Herts Valley CCG to withdraw funding to the service.

Isla and Florence helping to drop Lennon for his last ever stay at Nascot Lawn the weekend before he died.

We instantly knew that there was no way we would be able to cope without our weekend off every month, and that frightened me. My fight the Save Nascot began.

I spent the last 6 weeks of Lennon’s life campaigning alongside other parents against this awful decision whilst still providing him with the 24/7 care he needed.

I resent that hugely. I look back and wish it hadn’t of been that way. I hate that I look back on last weeks of my beloved sons and remember the overwhelming fear that I had at that time.

Lennon playing with Mummy and Daddy after being interviewed for BBC Radio 4.

And that’s why the Together for Short Lives report End of Life Care: Strengthening Choice means so much to me.

For families like mine, high quality children’s palliative care is essential. Without it, we just couldn’t have survived. We need the government to fulfil its commitment and help children and families make the most of every minute.

When you have a life limited child you should not be fighting for help. You should be spending quality time with your children making memories – you never know how long you will have them for.

Meeting Buzz and Woody at Hollywood Studios, Florida.

Good palliative care and short breaks for life limited children should not be a postcode lottery, families should not have to rely solely on charities to enable them to survive and they should certainly not be begging for what they need.

I could not fault the care Lennon received from our local Children’s Hospice Keech, especially after he died. They were always on the end of the phone and they looked after Lennon at short notice whenever we had a major crisis’. But they are under huge pressures – Keech need to raise over £6 million every year to enable them to care for their patients and families.

Lennon and Isla enjoying the gardens at Keech Hospice.

We were one of the lucky ones. Most families like ours do not have out of hours support or access to regular short breaks.

The Together for Short Lives inquiry found that 46% of Clinical Commissioning Groups aren’t implementing the Governments end of life care commitment   and have no plans to do so.

Our government must take urgent steps to ensure the support that children with life-limiting conditions need is delivered so that other parents can look back on their child’s final weeks and see happiness, not resentment.

Daddy’s favorite photo of his beloved Son x

Find out more about the Together for Short Lives APPG enquiry report:

And you can listen to BBC5Live Investigates programme featuring Hayley and Charlotte here:

But maybe grab some tissues first ….

The days after

It’s been a really tough week.

Flowers and cards arrive everyday. Wedding invite replies arrive (we have postponed our wedding) the phone keeps ringing, and life carries on around me.
It’s unbelievably tough to go from doing everything for someone to them suddenly not being there.
The house is so empty, and there is nothing to do. I get up, move from my bed to the sofa or I lie in Lennon’s bed. Thank god for Lennon being at Keech, Ian and the girls.

On Tuesday we returned to Addenbrookes to collect Lennon’s death certificate. Because Lennon arrived at Addenbrookes, went to theatre and died all within 12 hours, his death had to be reviewed by a coroner. This meant that it was going to be quicker and less hassle for us to register his death in Cambridgeshire. It was difficult to go back. The only times we had ever been to Addenbrookes was when Lennon was in PICU. Plus we had last left there only a few hours after Lennon had died.
As expected, the causes of Lennon’s death were septic shock, bowel necrosis and Volvulus.
Holding your child’s death certificate in your hands is a surreal feeling. To be honest though, every minute since we left home on that Tuesday night has been surreal. Almost like a dream, like I’m watching myself.

We visited the Funeral Directors to arrange Lennon’s funeral. We decided on a plain white casket for Lennon and cremation. The service will be held at a crematorium and we will celebrate Lennon’s life afterwards – share stories and send balloons to the sky.
We also discussed with the girls what they would like to put inside the casket with Lennon for his final journey and Isla has decided that she would like to keep Lennon’s precious ‘cuddles cat’ to look after for him.

We have been in and out of Keech all week to spend time with Lennon. I find this comforting – I’m happier when I’m close to him.
We had asked if they could take some professional black and white photos of Lennon in his page boy outfit with his favourite toys.
They are beautiful pictures, Lennon looks so smart and peaceful. They also took some shots without his face in, with the thought that we could add them to our wedding album when we finally get married and he could still be a part of our wedding album.
The girls at Keech also took hand and foot moulds and fingerprint moulds. They have made hand and foot prints on canvas, and even made canvases that we can add the girls hand and feet prints onto, alongside Lennon’s.
I want as many memories as possible. I don’t want to forget a single little thing about my little soldier – that is now my biggest fear. Forgetting.

Our beloved community nurse came round for the last time. This was hard for me. The people that came into our home and our lives to help us, became my friends. The time and energy I put into caring for Lennon meant that I rarely saw my friends, therefore nurses, doctors and carers became my friends.
Nic had been a part of our lives since Lennon was a baby, she had seen the girls grow up. She had witnessed Lennon’s changes and improvements over the years. I loved sharing Lennon’s achievements with her, and I felt her pride in him.
She had become a pro at taking blood from a fast moving target – She had narrowly avoided pricking herself when accessing Lennon’s port in the last few weeks!
She had helped get us to Florida and heavily contributed to a hefty medical file that travelled everywhere with Lennon. She taught me CPR and how to take blood, helped with bowel washouts, and filled my bin up with medical waste!
But above all, she listened to me and my worries, calmed me down when I panicked, and talked me round when I sobbed down the phone.
She knew Lennon so well, and she knew that the Lennon on paper was not the ‘real life’ Lennon.
She spent almost 3 hours with us, talking over that day and the last 10 years. I didn’t want her leave.

Nic – we wouldn’t of got through this without your support, we wouldn’t of had all those years of no hospital stays without you. I can never thank you enough, and I will never forget what you have done for us all.

On Thursday afternoon Lennon’s casket arrived at Keech.
I broke down as soon as we walked into the room. My baby boy in a white coffin. It seems so much more ‘real’ now. The words inscribed on the lid made me sob. The way the girls have placed his toys and Mickey blanket on top and the love that has gone into making the room look so special is touching.
Ian and I sat with him and noticed how long his coffin was. He had grown so much taller in the last few months.

I feel so numb. The pain in my chest is still there, and the sorrow and sadness feels deeper every day.
I look forward to bedtime as I know for that one second when I wake, its like all this never happened and Lennon is still here.
Getting through every day feels like a battle, and when the day has ended, it is just another day without Lennon. He has left such a huge gapping hole in our lives, that I can never envisage being even partly filled.
I miss his baby soft skin, his thick hair with the coarse patch at the back, his clicking and quacking. I even miss the bruises on my legs, which have already faded to nothing.
I sit and watch videos and look through photos, in the effort to keep him alive in my head. And I wonder how will life carry on without Lennon??

Previous blog post – Tributes to Lennon


Tuesday 1st August 2017, Lennon, Isla and Florence spent their first day at CHIPS summer playscheme. The girls there were amazing and happy to have Lennon there after his newly formed ileostomy.
He had a lovely day, playing with his sisters, walking around in his walking frame and playing at the sink and in the sensory room.
He came home and watched his favourite yo gabba gabba on the television whilst holding my hand and slapping my arm.

In the evening, Sian our continuing care nurse arrived. We bathed Lennon, did a full bag and dressings change. Lennon loved his baths – he often crawled or lead us to the bath. He was also known to climb into the bath when it was empty and lie in it! He loved to just stand at the taps and put his hands and face under the running water.
Lennon always was a true water baby.

The Reverend came to talk to Ian and I about our wedding, and Lennon played on his floor mat happily with his ocean drum and Argos catalogue until bedtime at 8.30pm.
Isla and I got into bed with him and he was so happy. Massive smiles and real belly laughing. It was so lovely, and in hindsight we realised he was saying goodbye to Isla – the sister he was totalled besotted with.

At 9pm we went into Lennon’s bed and he had disconnected his milk from his jejunostomy tube. This wasn’t an unusual occurance. We had to wash and change him and change his bed sheets which inevitably woke him up. Lennon hated being woken up (just like his mummy!)
At 10.15pm we checked on Lennon, he was not happy and we thought he was still grumpy from being woken up. After 20 minutes he began seizing. We gave him rescue meds, which had no effect so we rang for an ambulance. We were blue lighted into Lister resus with a full crash team waiting for us.

They managed to stop the seizures with some IV Lorazepam but Lennon remained unconscious.
He quickly deteriorated overnight until 9am Wednesday morning when our amazing team at Lister made the decision to crash call and put Lennon on full life support. CATS arrived and quickly intubated Lennon. Not long after being intubated, his heart stopped beating and the doctors performed CPR for 2 minutes. Lennon stopped breathing many times in the early years. More times than I can remember. But his heart had never stopped beating before then.

We left Lister and made our way to PICU Addenbrookes on full life support and maxed out on blood pressure meds. His kidney had completed failed and they suspected that Lennon had a mechanical bowel obstruction.

We arrived at Addenbrookes and as soon as Lennon was stable and they had switched over all the machines they took him down to CT. The scan showed his bowel was twisted and compromised but they couldn’t tell how much had died. We all made the decision for him to go to theatre, despite not knowing if he would survive surgery as he was on maximum support with nowhere to go – we had to give him that one last chance.
They opened him up and took his bowel and stomach out. The surgeons said there was way too much bowel that had died and they were surprised that he was still alive and fighting after what they saw. They stitched him up and kept him alive whilst Ian and I tried to prepare to say goodbye to our precious boy.

We desperately wanted to get Lennon to our Children’s Hospice, Keech. The girls at Keech, absolutely adore Lennon and I always hoped that the end would be there or at home and not in intensive care. The doctors kept telling us that he wasn’t stable enough to travel and we would risk losing him on the journey. A risk neither of us was willing to take.

At 2.30am on Thursday morning the blood pressure meds weren’t enough and they were pumping him with more and fluid just to keep him alive. So at 3am we made the decision not to prolong the inevitable any longer. Lennon had gone, I think he left us before we left Lister. The intensive care consultant who has been with us the whole time since we arrived (even scrubbing up and going into theatre with Lennon) took the breathing tube out and Lennon passed away instantly. Peaceful and dignified.

We got to spend the next 3 hours saying our goodbyes. It wasn’t long enough. But all the time in the world wouldn’t of been enough. I lay on the bed next to him placed his arms around me and held him tight. All the time trying to put my warmth back into his little body.

We were in a side room and the whole experience was very peaceful and calm.
We had 2 nurses with us. 1 who had looked after Lennon when he was a baby on Bluebell Ward, Lister. And the other who had done a nursing placement at Lennon’s school. It was fate and we will be eternally grateful that he had people who knew his journey caring for him in his last hours. They took out all his lines, cut locks of his hair and made hand and foot prints.

He was moved to his beloved Keech Hospice that afternoon. And will hopefully remain there until his funeral.

The girls there are going down to the Meadow suite all the time and taking really good care of him. Spending time with him and talking to him. They dressed him in his page boy outfit – he looked so smart and my heart shattered again knowing that he will no longer walk me down the aisle when we get married.

We are lucky that Lennon spent time at Keech over the last 8 years and had built up relationships with everyone there and 2 of our continuing care nurses who looked after Lennon at home now work there.
It feels so comforting to be there, close to Lennon – like a great big hug. The Keech girls are also taking care of us, making sure we eat and drink, helping us with funeral plans and making sure we are as involved as we want to be.

Words cannot begin to describe the pain we are feeling, it hurts to breathe. Every morning I wake up for the first second, I forget that Lennon isn’t here anymore and then it hits me like a bus. It feels like I’m loosing him all over again.
The thought of spending the rest of ours lives without Lennon seems unbelievable. He was such a huge part of our family and for the last 10 and half years my whole life has revolved around Lennon. I gave up everything for my little soldier – my career, going out with friends, money, holidays. And I don’t regret that at all. I would live the last 10 years over and over again if I could.

We are so incredibly proud of our little soldier. The odds were always stacked so highly against him right from the minute he was born, yet with every single step of his journey he fought so hard to stay alive. Some times were more difficult for him, but he always bounced back. He was like a cat with 9 lives!

We will treasure every single second of the last 10 and half years and all the amazing memories we were able to make with Lennon in our lives.

Life will never be the same, the light in our life has gone out.

“If there’s ever a tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we are apart.. I’ll always be with you.”
Winnie the Pooh.

Previous blog post – For my son, and his friends