Lucy Moroney
Heswall, Merseyside, England
December 21st, 2007 - November 9th, 2018.
Lois Fleming

Go fly lovely Lucy through the clouds in the sky,
Through the sun and the rain, to the rainbows so high,
With your kind loving heart, and your sweet natured soul,,
You’ve now been set free from this cruel and cursed toll,
You’ve shown incredible strength and a fierce fun for life,
You’ve ignited our hearts with pineapples arife,
You’ve shared THAT beautiful smile on your beautiful face,
Through the bumps and the hurdles, you’ve shown incredible grace,
Go fly in the sky to the arms of your Mum,
Where you’ll continue to be loved and surrounded by fun.

9th November, 2018

To my baby Lucy:

Lucy, when you were born almost 11 years ago, Mummy and I (mainly Mummy) chose your name, knowing the meaning of it was light. Your light burnt very brightly my darling. 

Having witnessed Mummy and your sister Ruby take their last breaths six years ago, it was traumatic and heart-breaking once again to witness you do the same, even with nearly 16 months advanced warning. But as painful as it was to experience, I wouldn’t have chosen to be anywhere else my gorgeous baby. You were a dream daughter, absolute perfection. You were as good as gold, so caring, beautiful and with the most pure heart. You must have got that from your Mummy. 

You were the best daughter, step daughter to Claire and big sister that Amy and Max could ever hope for. I never heard a bad word said about you and you made me so, so proud to be your Daddy. You never complained at all during your treatment and you amazed me with your strength, bravery and grace. 

You were beautiful inside and out, and I’m going to miss your beaming smile, your amazing sense of humour and your perfect sensitive soul. The world is a much worse place without you in it my baby, and I hope Mummy and Ruby are looking after you now. 

I love you Lucy Lu Lu. And I loved everything about you gorgeous. I’m sorry I couldn’t stop this disease from taking your life, I tried my best baby. I’ll never get over losing you, but I’ll also never get over loving you. If I had the chance to do it all again without being able to change the outcome, starting from when you were born, I wouldn’t hesitate, because you were perfection. I’ll miss you my beautiful princess and miss our special, special bond. 

Sleep tight my angel. I love you lots. Daddy x

Update from Facebook page, 6th November 2018
Nonprofit Organization
Lucy's Pineapple Fund

UPDATE.

We wanted to let you all know that Lucy is struggling and nearing the end of her life journey.

She is still responsive, asking and answering questions by using eye signals and keeping us on our toes! She is constantly surrounded by family and is comfortable.

We do have some news to share with you. While Lucy was in Mexico receiving treatment, you may recall that having missed some school, our bright and beautiful girl put her mind to becoming a published author. 

We are so proud to say that her book 'The Spider and the Whale' is now available to buy, just in time for Christmas!

We intend to become a charity in the near future and work to raise much-needed awareness of DIPG. 'The Spider and the Whale' will make a great stocking filler and by buying Lucy's book, you will be helping us with our goal. It will be Lucy's legacy.

Please, please share this post and spread the word. It would be lovely for her to know that her book has gone on sale and has been a hit!

If you'd like to show your support, please visit our page:

https://www.facebook.com/thespiderandthewhale

Or visit the website directly to buy the book:

https://www.spiderandthewhale.com/

June 5th, 2018
Story from Lucy's Pineapple Fund Facebook page.

Sorry for the lack of updates over the last 6 weeks. 

Lucy has today completed her 30 sessions of radiotherapy at clatterbridge hospital. It's been eventful, so we've not had too many chances to concentrate on updates. 

So, what's been going on:

Lucy was sick quite a bit early on and unfortunately kept vomiting up her nose tube, needing it to be replaced often. She also quickly became very dosile and weak, with lots of 'accidents'. She had to go on high dose steroids early on and got insomnia. She lost quite a bit of weight too. She was more or less paralysed after the first week and couldn't move any of her limbs, or control her neck. She quickly regained some movement in her arms and neck after we started steroids though. Was scary for a while as she was struggling to breathe, so had to go to hospital to get checked out. Fortunately everything looked ok.

After a period of mood swings, a first for lucy, she then got a lung infection and took a real turn for the worse. The hospital suspected sepsis at one point. However, after IV antibiotics to treat that, she did seem to pick up and we had a very good day one Sunday a fortnight ago. She woke up and asked to play 'build a bear' with her sister Amy. For the first time in ages, we were able to understand her slurred speech. Unfortunately, the improvements didn't last long and she quickly deteriorated again. 

She also lost a lot of hair, which is a bit sad, as she loves her long hair.

So, onto today, she is still weak, cannot move her legs, cannot talk or do much for herself, but she's still bright in spirit. We've had a really nice day to 'celebrate' completing radiotherapy. 

The staff at clatterbridge were great with her and gave her a lovely and incredibly thoughtful pineapple-themed send off. There were pineapple balloons and they even gave her some gifts, one of which is a snazzy pineapple bag, which she absolutely loves. 

They also helped her ring the bell to mark the end of the sessions, and there was a nice round of applause for lucy. With a few tears shed.


Lucy then wanted to go to Gusto in Heswall for lunch where her and her sister Amy made their own pizzas - Amy made a very creative 'pineapple' out of ham and sweetcorn and decorated both of their chefs hats. The Gusto staff were brilliant, as per usual, and really looked after us. They were also very patient and happy to wait about 3 hours for lucy to finish eating! 

So, it's been a tough old time over the last 6 weeks, with less ups than downs, but we're still here fighting and smiling. 

And we're still keeping our hopes and spirits up for whatever the future brings.

Thanks again for all the support and to all the staff at clatterbridge who have been brilliantly positive and understanding throughout. From the reception desk to the doctors, and everyone in between, they're a happy bunch and a credit to the Wirral. And I'm not just saying that because they tolerated our shocking punctuality! 

I'm also posting some photos from today, including a few shots from the last few weeks. 

We hope everyone is doing as well as they can and we'll hopefully do more updates now the daily radiotherapy trips are complete.

DECEMBER (2017) UPDATE:

Lucy has had her 7th IA procedure and we’re pleased to report that she had another good MRI. 

On her previous MRI there was a small lesion in the mid brain. That lesion has grown but the shape of the pons, where the highly aggressive DIPG tumour is, is getting better and less bulky. The mid brain lesion is believed to be a cyst and is the cause of Lucy's eye coordination problems. The doctors aren't too concerned about that at the moment and hopefully it will soon go away on its own and her eyes aren't permanently damaged. 

As well as the improvement in the shape of the pons, there isn't a lot of evident/visible cancer activity now, which is good news. We'll need to do a PET scan on our next trip to assess what's going on. There are so many ups and downs on this journey, and there's still a long road ahead of us, but it feels like we're on top of the tumour at the moment and couldn't be in that position without the fantastic support from everyone behind us. Thank you, from the bottom of our hearts!

December 21st was Lucy’s 10th birthday! Following her treatment, Lucy arrived back safely in the UK and recovered so well that she was able to enjoy a party to celebrate!

Lucy’s spending the afternoon with her cousins, enjoying some party food, balloons and games. Nothing better than a proper party!

...and there could only be one kind of cake for this occasion... 🍰 🎂 


NOVEMBER (2017) UPDATE:

As many of you will know, Lucy is now in Mexico receiving treatment for an inoperable and terminal DIPG brain tumour. We've been absolutely blown away with all the support we've received to get us on this treatment programme and again, we can't thank you enough.

Lucy caught a cold straight after her fourth procedure, so took a week or so to recover. As soon as she was feeling better, the family went to the local park and Lucy managed to hang from a bar for 10 seconds. Having struggled to use a knife and fork to feed herself when she left the UK for Mexico, this is a big improvement and she was really pleased with herself. Great to see her confidence and strength returning.


The last procedure went well and the doctors confirmed there was even further tumour reduction. Lucy is clearly responding to the treatment here and we're so thankful for the support of everyone who is helping to make this possible.

Lucy will be continuing with this treatment for as long as it helps her and so we need to do everything we can to keep her on the programme. So please keep sharing this Crowdfunding page - get on Twitter, LinkedIn, Instagram, email all your contacts, tell everyone you know about it. JustGiving has been our main source of fundraising, so it's really important to us to keep this active.


October 2017 update

OCTOBER UPDATE:

The treatment in Mexico has been going well with Lucy in good spirits. This photo was taken of Lucy in a UK hospital about a week after diagnosis after her biopsy. Compared with a photo of Lucy taken in a Mexico hospital more recently, you can see she's in much better shape and a LOT happier.

There are no guarantees with the treatment Lucy is currently receiving in Mexico, as it's early days into their programme and ultimately DIPG has a zero percent survival rate, so we don't know if the long term prognosis will be any different for us. We'll only find out when we get there! We're obviously living in positivity and hope though. 

What we can say is that the aggressive, multi-modal and fairly non-invasive treatment plan is the most hopeful DIPG treatment in the world and the children who are currently there with Lucy are being given the best chance, with side effects that are acceptable in the circumstances. The side-effects of the standard treatment prescribed in the rest of the world are completely unacceptable - DIPG kids suffer too much.

So as well as the crowdfunding, we asking for another huge favour, mainly from UK friends, but everyone can play their part. We need 100,000 signatures on a petition to the UK government to fund DIPG research to help find a cure, as there isn't one at the moment and the research funding is beyond a joke, so a cure isn't on the horizon and hasn't been for 60 years.

As well as this, we also need to urgently give the children who are diagnosed with this terminal disease access to multi-modal aggressive treatment plans similar to the treatment Lucy is receiving in Mexico. There's no reason why this can't be provided in the UK. Terminally ill kids shouldn't have to be uprooted from family, friends and the community in order to save or prolong their life. The UK should be leading the way rather than providing 'care' which hasn't changed the outlook for patients in 60 years or more and has an unacceptable quality of life. Let's start giving DIPG children and affected families some hope, better treatment, and get the UK leading the way on this!

We don't want to make memories in the short time the children are supposed to have left before they die, we want to keep them alive!

So please, please, please can everybody make sure they sign the petition, and share it with their friends? And if you could also actively try to encourage people to sign the petition until we've hit the 100,000 signatures, it would mean the world.

Thank you so much! And thanks again for all the support.

A nine-year-old grieving for her dead mum and baby sister is battling terminal cancer in Mexico after the NHS refused to fund her treatment. Schoolgirl Lucy Moroney has travelled to Monterrey, Nuevo León, to undergo a an intra-arterial chemotherapy trial after a £3,000 crowdfunding appeal.

The non- NHS procedure sees chemotherapy drugs injected directly into the tumour while minimising exposure to healthy tissue.

But Lucy, her dad Joe and sister Amy, seven, have already suffered a double tragedy when in 2012 her mum Nicola, 33, died suddenly from an undiagnosed heart condition while watching TV.

Nicola's third daughter Ruby was born three months early by emergency cesarean but died in distraught Joe's arms 14 hours later.

At the time, Lucy was just four and her sister Amy was almost two.

Nicola was pregnant with their little sister, Ruby, who was born at 24 weeks by Caesarean section while doctors fought to resuscitate her mum but lived for just 14 hours.

Lucy’s aunt Paula Newman, from Tarporley, said she had been inundated with e-mails and offers of help.

She said: “We set the target as £300,000 because we heard from other families that that’s what you can expect to be paying for a round of treatment.

“Never in a million years did I think we would raise nearly £50,000 in just over a weekend.

“It’s life or death and we have to do something. Never in a million years would I have thought this would be possible in just a few days. I’m so grateful to everyone

“The support is helping the whole family get through it and it’s making us smile.”

Lucy & Amy

Paula said the family’s “already broken hearts” from Nicola and Ruby’s deaths were “shattered into a million pieces” when Lucy was diagnosed.

The cruel nature of the tumour, which only affects children, means sufferers gradually lose control of their bodily functions.

She said: “Our family is doing everything possible, amid the whirlwind of disbelief we find ourselves in, to find alternative therapies and options that may work either outside or alongside the NHS.

“It’s our only hope of helping Lucy and if we have hope, we can keep going.”

Lucy is currently at home and on Saturday was able to enjoy a family meal at Pizza Express in Heswall – which she said was “definitely better than the hospital food ”.

By Sunday night the appeal to help her had raised £43,000 – with more money to come from a series of fundraising events.

Lucy’s school, Gayton Primary, is planning a fun day and supporters will pack bags at Tesco in Heswall from Wednesday to Sunday this week.

Ambience Hair and Beauty in Hoylake is also donating cash from a full day’s hairdressing.

Other fundraisers include a raffle and auction and Paula said they hoped to organise a 10k run, with a fun run for children.

The appeal has been named Lucy’s Pineapple Fund because of her love for the fruit.

Paula said: “We are open to suggestions and advice from anyone who has dealt with DIPG - we don’t have time on our hands to become experts.

“With the tumour being grade 4, we don’t have time on our side, so we need to raise as much as we can as quickly as we can.”

For more information or to donate visit https://www.justgiving.com/crowdfunding/lucy-pineapple

Lucy with dad Joe and sister seven-year-old Amy
13,246 signatures today, 26th September
This story from Paula Newman, Lucy's auntie.

This is Lucy.

Lucy is my nine year-old niece and the daughter of my sister, Nicola.

Five-and-a-half years ago, on 24th January 2012, my sister Nicola (Lucy's mum) tragically died from sudden cardiac arrest at the age of 33, due to undiagnosed Dilated Cardiomyopathy (a heart condition).

Lucy was only four years old at the time and her sister, Amy, was almost two.

Nicola was also pregnant with their little sister, Ruby, who was born by c-section at 24 weeks gestation, during Nicola's attempted resuscitation. Ruby lived for 14 hours but died in her daddy's arms on Tuesday 25th January 2012.

Lucy and Amy

Since the tragedy of losing Nic and Ruby, Lucy and Amy have had their lives rebuilt around them by their loving Dad, dedicated 'Nannie' (my mum) and the rest of the family.

On Monday 17th July 2017, our already broken hearts were shattered into a million pieces when Lucy was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a terminal, inoperable and (so far) untreatable malignant brain tumour. We have since found out that the tumour is a Grade 4, meaning Lucy is expected to have only months to live.

Currently, treatment is limited to radiotherapy (of which there are several delivery methods) and chemotherapy on the NHS at Alder Hey and other hospitals in the UK. There has been very little research into DIPG and therefore, comparatively little is known about this type of cancer. We know it only affects children and the cruel nature and location of the tumour means that DIPG children gradually lose control of their bodily functions.

Our family is doing everything possible, amid the whirlwind of disbelief we find ourselves in, to find alternative therapies and options that may work either outside or alongside the NHS. It's our only hope of helping Lucy and if we have hope, we can keep going.


Below is a list of areas we are currently researching:

- Intra-arterial chemotherapy treatment under Dr. Alberto Siller and Dr. Alberto Garcia in Monterrey, Mexico

- Convection-Enhanced Delivery (CED) - a way to overcome the blood brain barrier by implanting four very fine tubes, or catheters, surgically into the tumour to deliver chemotherapy drugs directly at an effective concentration - under Dr. Zacharoulis at The Harley Street Clinic, London, or Dr. Mark Souweidane at The Weill Cornell Brain and Spine Center, New York

- BET domain inhibitors - a possible therapy in DIPG under Dr. Rishi Lulla whom will be pushing into clinic a recent science discovery by Professor Ali Shilatifard, Northwestern University Feinberg School of Medicine

- Clinical trials of the drug DFMO at Sydney Children’s Hospital, Randwick under Dr. David Ziegler - Children’s Cancer Institute, Australia

- Anti-tumoral effect mediated by non-psychotropic cannabinoid receptors and other cannabinoid receptors researched by Dr. Cristina Sánchez, PhD in Madrid, Spain

Lucy was very pleased to see her sister, Amy, when she came to visit!

We would also like to find a nutritionist for Lucy to advise on a suitable diet - there is some research that diet-induced ketosis causes changes to brain homeostasis that have potential for the treatment of malignant gliomas. We have also read about a metabolic diet which may help.

In addition, we've been in contact with acupuncturist and author, Dan Keown, who has recommended treatment via the Du and Yang Qioa Mai channels.

The above treatments do come at a cost, for example, the treatment in Mexico is estimated to cost at least £300,000 and even initial consultations can cost hundreds of pounds, so we would like to try and raise some funds to help towards this.

Any excess funds raised will go towards research into DIPG.

Nicola and Lucy in September 2011

Releasing balloons for Mummy's birthday


If you can't help by donating to 'Lucy's Pineapple Fund' (Lucy LOVES pineapples!), then any research you can do into these (and potentially other alternative therapies) would be fantastic. We are open to suggestions and advice from anyone who has dealt with DIPG - we don't have time on our hands to become experts. I'm sure you'll understand that we want to do absolutely everything we can for Lucy.

With the tumour being grade 4, we don't have time on our side, so we need to raise as much as we can as quickly as we can. Any fundraising ideas you have, please let me know.

If you would like to contact Lucy's Pineapple Fund, please use: lucyspineapplefund@gmail.com.

Please note, although my three children and Lucy and Amy are aware that Lucy's poorly, I know kids are known to be quite open/vocal. So if you know us, we'd like to ask for your discretion and care when it comes to talking to your children. For them, we are trying to focus on giving them as much of a happy summer holiday as we can.

THANK YOU.

UPDATE:

As many of you will know, Lucy is now in Mexico receiving treatment for an inoperable and terminal DIPG brain tumour. We've been absolutely blown away with all the support we've received to get us on this treatment programme and again, we can't thank you enough.

Lucy will be continuing with this treatment for as long as it helps her and so we need to do everything we can to keep her on the programme. So please keep sharing the Crowdfunding page - get on Twitter, LinkedIn, Instagram, email all your contacts, tell everyone you know about it. JustGiving has been our main source of fundraising, so it's really important to us to keep this active.

The treatment in Mexico has been going well (we're currently two procedures in) with Lucy in good spirits. This photo was taken of Lucy in a UK hospital about a week after diagnosis (about 6/7 weeks ago) after her biopsy. Compared with a photo of Lucy taken in a Mexico hospital more recently, you can see she's in much better shape and a LOT happier.
There are no guarantees with the treatment Lucy is currently receiving in Mexico, as it's early days into their programme and ultimately DIPG has a zero percent survival rate, so we don't know if the long term prognosis will be any different for us. We'll only find out when we get there! We're obviously living in positivity and hope though. But what we can say is that the aggressive, multi-modal and fairly non-invasive treatment plan is the most hopeful DIPG treatment in the world and the children who are currently there with Lucy are being given the best chance, with side effects that are acceptable in the circumstances. The side effects of the standard treatment prescribed in the rest of the world are completely unacceptable - DIPG kids suffer too much.
There are no guarantees with the treatment Lucy is currently receiving in Mexico, as it's early days into their programme and ultimately DIPG has a zero percent survival rate, so we don't know if the long term prognosis will be any different for us. We'll only find out when we get there! We're obviously living in positivity and hope though. But what we can say is that the aggressive, multi-modal and fairly non-invasive treatment plan is the most hopeful DIPG treatment in the world and the children who are currently there with Lucy are being given the best chance, with side effects that are acceptable in the circumstances. The side effects of the standard treatment prescribed in the rest of the world are completely unacceptable - DIPG kids suffer too much.
So as well as the crowdfunding, we asking for another huge favour, mainly from UK friends, but everyone can play their part. We need 100,000 signatures on a petition to the UK government to fund DIPG research to help find a cure, as there isn't one at the moment and the research funding is beyond a joke, so a cure isn't on the horizon and hasn't been for 60 years.
As well as this, we also need to urgently give the children who are diagnosed with this terminal disease access to multi-modal aggressive treatment plans similar to the treatment Lucy is receiving in Mexico. There's no reason why this can't be provided in the UK. Terminally ill kids shouldn't have to be uprooted from family, friends and the community in order to save or prolong their life. The UK should be leading the way rather than providing 'care' which hasn't changed the outlook for patients in 60 years or more and has an unacceptable quality of life. Let's start giving DIPG children and affected families some hope, better treatment, and get the UK leading the way on this!

We don't want to make memories in the short time the children are supposed to have left before they die, we want to keep them alive!

So please, please, please can everybody make sure they sign the petition, and share it with their friends (see higher up this page for link)? And if you could also actively try to encourage people to sign the petition until we've hit the 100,000 signatures, it would mean the world.

Thank you so much! And thanks again for all the support.

From Mail Online - 9th October 2017

A pioneering cancer trial has amazed doctors after a terminally-ill British schoolgirl's brain tumour has started disappearing.

Lucy Moroney, nine, is in Monteray, Mexico, for a revolutionary chemotherapy trial that involves injecting drugs via the artery directly into the tumour, in a treatment that is not yet available in Europe.

Just a few months ago, Lucy from the Wirral, was told she had an inoperable child brain tumour, known as diffuse intrinsic pontine glioma. 

Unable to swallow or walk, on August 21 Lucy flew thousands of miles for one last attempt to save her short life. 

After just three rounds of therapy, doctors have told Lucy's family the area around her tumour almost 'looks normal'.

Lucy's diagnosis is the third tragedy her family have had to endure, after the sudden loss of her six months pregnant mother aged just 33 in 2012, as well as the baby passing away just hours later.


Lucy, Joe and Amy

Lucy's aunt Paula Newman, 37, wrote on Facebook: 'Lucy has just woken after her third intra-arterial procedure, combined with her second immunotherapy treatment.

'She was very grumpy when she woke up!

'She needn't have been grumpy as her MRI results from today were great!! Big shrinkage in the tumour according to the doctors.

'We're very happy to have a positive result. They said a lot of the area where the tumour is now looks normal!' 

Lucy's Tumour

'It is the worst type of tumour a child can get' 

Lucy's father, 39, said: 'Lucy's diagnosis came as a massive shock.

'I didn't really understand at first when they told me it was inoperable that that meant it was totally untreatable.

'The prognosis is really grim. With radiotherapy to prolong her life, it is nine months and without it, it's less.

'But radiotherapy has such bad side effects that it doesn't prolong any quality of life.

He said: 'I am determined to stay positive and so is Lucy.

'She doesn't know how bad the prognosis is but she knows she has a brain tumour.

'We are fighters and are going to explore every other option out there to find a cure.'

Lucy, Joe, and her sister Amy, seven, have already suffered a family tragedy when the girls' mother Nicola, 33, died from an undiagnosed heart condition while watching television in 2012.

As Nicola was pregnant at the time, the couple's third daughter Ruby was born three months early by emergency caesarean section but died in her father's arms hours later. 

Joe said: 'I couldn't fight for Nicola - I am going to fight as hard as I can for Lucy.

'Lucy is so much like her mum, she is always smiling.

'It is the worst type of tumour a child can get. It will affect her sight, her breathing, her movement.

'But even now with her symptoms getting worse, she keeps smiling and she is so positive.'

Three years after the trauma of losing Nicola, Joe met his girlfriend Claire Evans, 29, who gave birth to their son Max just before Lucy's diagnosis.