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Lewis Mighty's Story

This is the story of an amazing family called the Mighty's and their precious son Lewis, who sadly passed away in May 2012 from an agressive childhood cancer called Neuroblastoma. Lewis touched the hearts of thousands and since Lewis" death his family are working hard to raise awareness of Neuroblastoma and raise funds for the Oncology ward at Queens Medical Centre in Nottingham, where Lewis spent so much time.

Hello my name is Jaime and I want to share with you my experience of losing a child, thank you for reading.

In November 2004 I gave birth to my third child,a little boy (I use little loosely as he was 9lb 8oz!) callelewis mightyd Lewis. I already had a son and a daughter and Lewy was our little surprise 6 yrs down the line. He was a strapping healthy boy who was very mischievous and full of beans. I enjoyed things more the third time round...I was older and more relaxed. Lewis went on to start nursery at the local school aged 3 and he was very confident with a mass of auburn ringlets.

After a few months I began to see a difference in Lewy,first he became much quieter than usual and seemed to become slightly withdrawn. Also he began to loose his appetite and lost some weight. He also became quite constipated and also reluctant to walk. We became a regular at our local GP surgery and various infections,viruses and emotional problems were suspected. After numerous courses of antibiotics it became clear Lew was getting weaker. He had constant tummy ache and looked very pale.

Eventually we managed to get an X-ray performed as the drs were convinced lew had severe constipation. The X-ray confirmed this and a high dose laxative course began. As I returned home that night the heavy gloomy feeling in the pit of my tummy would not shift. I still was unconvinced it was something as simple as constipation. My instinct must have been right as by 9am the next morning I received a rather frantic call from the local hospital asking us to return immediately. When I arrived we were ushered into a side room where blood and urine samples were taken. A professor was around and everything was very somber. A few hours later we were informed Lewis had a suspected malignancy and needed to go to QMC in Nottingham to be seen by an Oncologist (I didn't at this point even know what one was).

Next morning we arrived onto a ward where the first thing I noticed was none of the children had any hair! They had tubes up their noses and had machines connected all around them! I was terrified I couldn't walk or breath and I was sure we were in the wrong beautiful auburn headed boy dresses in his beloved Liverpool FC kit clutching his Nintendo Ds didn't belong here.

We were introduced to Dr Martin Hewitt....who unknown to us would become a huge part of our lives over the next 3 and a half years. He was gentle and kind and instantly made us feel at ease....I still say now he has the magical ability to make the most dire of situations seem like fun?.

After a few days of tests,scans,meetings and results we were delivered the devastating blow that Lewis had Neuroblastoma,not only that but he had Stage 4 High Risk...the most notorious deadly type. Prognosis and outcomes were thrown around and a treatment plan put in place. Lewis had a Hickman line surgically inserted into his chest so that his body could cope with the vast amount of medicines that would become everyday life to us.

Amazingly Lewis coped very very well with the chemotherapy that was relentlessly pumped into him every 7 days. He learnt to cope and we got a routine in place to conquer all the side effects as best we could.

lewis mightyRestaging tests showed an initial response so we ploughed on with the rest of the plan. Lewis was enrolled onto a trial and was given a stronger dosage of chemo which was hoped to clear his heavily infected bone marrow. It worked so we ploughed on with surgery.....7 and a half hours of major abdominal surgery went ahead. Much to our disappointment it was a failure...only 20% of the tumour was removed,the rest was to risky. I remember my despair that day pure fear and despair the feeling is one of the most intense feelings you can describe. It literally rips your heart down out your body and the panic stops you breathing.

Despite the set back Lew bounced back extremely fast as usual and got his strength back in no time. He was next due a stem cell transplant which was hoped would blast all the NB cells away. This was gonna be tough and involved destroying all Lews bone marrow off with very high dose chemotherapy drugs.....before replacing his lovely clean stem cells free of cancer. We spent 7 days connected to a drip ( I say we because as a parent you do literally go through it). Lews surprised the docs again by remaining strangely well! He managed a good week at home before his blood counts crashed and was admitted to QMC.

Sadly the exterior of lewy was worlds away from the interior of Lewy. Scans confirmed there was no change in disease they suspected his NB had become resilient to chemotherapy. Our last stab was offered down in London which involved a fairly new type of internal radiotherapy with chemotherapy agents attached. Only downside (apart from it all) was it involved Lewis being in a lead lined room alone for a week or more. But he did it and built up quite a fan club down UCHL even the lovely Gayle from A Child Of Mine popped by to say hello.

Despite all Lews efforts the treatment left him blood and platlet dependant for a year and a half. Despite this he enrolled back into school and excelled,he joined a local football team and worked so hard was appointed captain. He was strong,fit,funny,cheeky and developed a hilarious attitude to never failed to cause people to warm to him. He had a butterfly mind and wanted to cram as much as possible into each day.

At this point we decided that after 2 years of living as a hospital number we wanted Lewis to experience as much as he could. It's a very hard decision to have to play perhaps the executioner of your child's life. But the one thing I could give him was memories,love,happiness and the chance to be "normal" which was what he craved.

His Hickman lines were removed....I cleared the meds cupboard and we ran for the hills. He was so well and happy I knew we had done the right thing.

mighty family

It lasted almost 2 years...........

In Aprill 2011 lew became poorly just a cough and cold initially.....that lingered. Then his appetite dipped and the dreaded constipation engulfed him again. He opted to lie in bed as oppose to always wanting to kick a ball. I knew it was back.

Things progressed quickly and although lew was admitted into intensive care with double pneumonia.....I knew what lay behind it all.

I watched my hero my heartbeat literally dissolve before my eyes......he was leaving me and I wanted to go too. I needed him and everyday as he worsened my heart beat less. I was helpless. I'm still not sure where I found that inner strength that kicked me hard and stopped me wallowing? I took charge I gathered family....I fetched his beloved doggy Rupert and I played him his Beautiful South cd full blast.

We lost Lewis on the 16th of May....he was in Daddy's arms and was very peaceful.

A piece of me larger than I dare think about left too that day.
Thank you for taking the time to read our story - The Mighty Family x

Further information and links

Since Lewis passed we set up The Lewis Mighty Fund which is now part of The Nottingham Hospital Charity. It supports children and families facing a childhood cancer diagnosis within the Nottingham Hospital Trust. I was so inspired by my brave brave boy I could not/will not let it be in vain. I aim to make other families journeys less comfortable. I cannot give them all the one thing they desperately need which is a cure.....but I can lighten the load in other ways. I truly hope by creating this charity in memory of my son we will make a difference and raise awareness. The way I see it is....if you have knowledge/experience (true life experience,not read from a book) it should be shared.

Follow the Lewis Mighty Fund on Twitter

Follow the Lewis Mighty Fund on Facebook

Donate to the The Lewis Mighty Fund, raising funds for the Children's Oncology ward E38 at QMC in Nottingham

You can also buy Lewis Mighty wristbands HERE with all proceeds going to QMC in Nottingham

Visit the website -
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