Weʼre raising £300,000 to help towards costs of alternative DIPG treatments for Lucy
- Wirral, United Kingdom
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This is Lucy.
Lucy is my ten year-old niece and the daughter of my sister, Nicola.
Six 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.
Nicola and Lucy in September 2011
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.
Lucy and Amy
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 usually affects children and the cruel nature and location of the tumour means that DIPG children gradually lose control of their bodily functions, but they remain fully aware.
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 and helping other children gain the best medical treatment possible.
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: firstname.lastname@example.org.
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.
Lucy was very pleased to see her sister, Amy, when she came to visit!
A lot can happen in 12 months.
A year ago we were a happy family, just about to celebrate an exciting new arrival. Baby Max was born on the 16th July 2017, after a fairly traumatic labour, and I walked straight off the labour ward onto the paediatric assessment unit to get Lucy checked out for what seemed like very minor symptoms at the time. Little did I know the hell we were about to face - Lucy's diagnosis of DIPG.
It was the day after Max was born that we had the MRI which confirmed the diagnosis, and it seems apt now that we had another MRI today, exactly 12 months since diagnosis, and the day after Max's first birthday.
All week I've had an uneasy feeling - scanxiety. Lucy has not been great recently. She can't walk, talk, or really even move her limbs at the moment. She drools, is at risk of choking, and she's more or less a prisoner inside her own body and needs assistance to do everything. Yet she's still fully alert and is the same person on the inside. I'm amazed at how positive she is in the circumstances.
Another reason for feeling off this week is that I don't have great memories of this time last year. What should have been a happy time for the family was actually one of the worst times of our lives. So it's a little ironic that today's scan brought some positive news. A direct contrast to the scan this time last year.
The radiotherapy seems to be having an effect and the initial feedback on the scan was positive. We still don't know for sure why Lucy has been deteriorating recently, but it could be that it's down to fatigue linked to side effects from radiotherapy and she'll pick up again soon. Let's hope that's the case and that the scans continue to improve over the coming months.
In any case, we'll take this positive news and celebrate it for the time being.
Lucy and Family, July 2018
And Lucy has really enjoyed celebrating Max's first birthday too. It wasn't a foregone conclusion she would see that day when she was diagnosed, so we thank everyone for helping us get to this milestone.
Baby Max on his First Birthday
And we hope the next 12 months brings some positivity for you all.
Lucy has now completed her 30 sessions of radiotherapy at Clatterbridge hospital. It's certainly been eventful...
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 docile 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 she 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 three hours for lucy to finish eating!
So, it's been a tough old time over the last six 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!
We hope everyone is doing as well as they can and we'll hopefully do more updates now the daily radiotherapy trips are complete.
Lucy with her snazzy gift!
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... 🍰 🎂
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.
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.
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Leave a message of support
Jul 17, 2018
Jul 17, 2018
Jul 8, 2018
I hope the treatment is going well.
Jun 29, 2018
Jun 27, 2018
Proceeds from International Pineapple Day for Lucy
Jun 10, 2018
My own 3 year old great niece was diagnosed with DIPG just 2 weeks ago. The most heartbroken I’ve ever been. Sending you positive thoughts from Chicago, IL.
Jun 9, 2018
On behalf of the newlyweds, Mr & Mrs Lewis ♥️🎉🥂xxx
About the fundraiser
Wirral, United Kingdom
My name is Paula and I'm Lucy's 'Auntie P'! Our family is from the Wirral, which is where Lucy and her family live. If you'd like to contact me personally, you can use this email address: email@example.com
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