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.
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
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.
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
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.
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: email@example.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.
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'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!'
'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.