Archie's Army - Fighting Brainstem Tumour (ETMR)

A Christmas Angel

Archie Vaughan, age 3, made his presence known when he was born on Christmas Day 2017, making his arrival into the world memorable for everyone concerned! He is the youngest of 3 children and will always be the baby of the family. Archie’s Mummy and Daddy, Hayley and Craig definitely have their hands full with Lily (10), Harry (6), Archie and Bella the Beagle who eats everything in sight and does not like been told no! Archie on the other hand is such an easy-going 3 year old – the most gorgeous, cheeky, confident and independent little toddler and manages to charm everyone who meets him with his personality and smile. He’s so clever and chunky, never been poorly and always eats his fruit and vegetables - he’s their perfect Christmas Angel.


Worst Fears Confirmed

Hayley and Craig were concerned when Archie started with a slight head tilt at the beginning of June 2021. By Saturday 12th June he was noticeably wobbly on his feet and his head tilt was getting worse, so after speaking to 111 they ended up in Pinderfields General Hospital to have him checked over. The hospital were amazing and quickly arranged CT and MRI scans to see what was going on in little Archie’s head – the results were devastating and confirmed their worst fears – Monday 14th June 2021 their lives changed forever - Archie has a brain tumour.

Archie was transferred to Leeds General Infirmary (LGI) where specialists could investigate further, however due to Covid only one parent was allowed to stay at the hospital so Craig returned home to look after Lily, Harry and Bella the Beagle. Over the course of the next few days Archie had further tests, a more detailed MRI and a biopsy taken, however because of the location of the tumour Hayley was told his options would be limited. As biopsy results take 7-10 days to process it was a waiting game, so Hayley and Craig took their brave little boy home on Thursday 17th June and waited for a phone call.


3 years and 6 months old

Friday 25th June 2021, Archie's three and a half year birthday and the Vaughan’s are back at LGI for his test results. Archie’s brain tumour is high grade and in an unfavorable position therefore surgery or chemotherapy to beat the aggressive cancer is not going to be an option, however radiotherapy could be tried which would hopefully make Archie feel a little better and give the family some more short time with him. Palliative care is the only way forward.

How do you even start to absorb that prognosis and look at your child knowing they won’t be here for much longer? Hayley and Craig’s hearts were breaking, but they needed to remain strong for all three of their children (and Bella the Beagle). In the meantime the hospital had sent off the results to Great Ormond Street Hospital (GOSH) for a second opinion.

The three of them returned home to spend time as a family with the sole focus of having as much fun as possible and making some amazing memories. Family and friends were told the devastating news and weekend breaks were brought forward and they started coming to terms with the inevitable.

“You could have everything in the world, and when something like this happens you would give it all up for your child”


'Mummy, I want to be proper again’

Archie’s balance started deteriorating and he has now more or less lost the use of his right hand. The right hand side of his face is showing some facial weakness and his little smile is starting to fade. He gets frustrated as he can’t do the things he used to do and although he wants to run around as normal, the symptoms of his tumour are making that impossible. He woke up one morning and told his Mummy ‘I just want to be proper again, I don’t like been wobbly’. When Hayley and Craig are asked how they are managing to get up every day and stay so strong knowing the Archie’s time is limited, they reply “we are living the nightmare but you just have to deal with it”. They have taken guidance from their Macmillan Nurse and Archie’s siblings are still unaware of what the future holds until the additional results come back from Great Ormond Street Hospital.


Renewed Hope

Thursday 1st July 2021 and Hayley and Craig find themselves back at the LGI meeting with the Neurosurgeon as the results are back from GOSH. The tumour type has been identified as an Embryonal Tumor with Multilayered Rosettes (ETMR) on Archie’s brain stem – a relatively rare but typically deadly type of brain tumour that occurs mostly in infants. Surgery to remove the tumour is not advisable because of the location of the growth, however miraculously chemotherapy is now an option to try and reduce the ETMR and give Archie a chance of surgery further down the line. Chemotherapy will need to be on the extreme side due to the aggressive nature of the tumour, and there are no guarantees it will work and that it will lead to surgery as there is little evidence to support positive outcomes of children with brain stem ETMRs.

Despite the poor prognosis, this is better than initially thought and Hayley and Craig are prepared to try anything and agree to start the chemotherapy in the hope it works and shrinks the tumour. A date is booked for Archie to have his central line put in and first round of chemo to start on Friday 9th July.

Research, research, research

Now Hayley and Craig know Archie has a ‘brainstem ETMR’ naturally they start to look online to try and learn as much as they can and search for other families who have had experience of this rare tumour. They come across a couple of families who are further along the treatment journey and they make contact and share stories, research and useful contacts. One particular family have already tried the chemotherapy option, and it didn’t actually shrink the tumour – however they came across a Paediatric Neurosurgeon called Conor Mallucci at Alder Hey Children’s Hospital who agreed to try and remove the tumour despite the majority of specialists advising against this course of action. Against the odds in a 10 hour operation Mr Mallucci successful fully removed the brainstem ETMR and the child in question continues on her treatment journey.  She is doing exceptionally well and is hoping to start maintenance chemotherapy for a year (either UK or privately abroad).

I’m sure you can guess what is coming next?

Conor Mallucci

Sunday 4th July 2021 and Hayley and Craig email Conor Mallucci at Alder Hey and him to review Archie’s scans for his opinion. Thursday 8th July 2021, the day before Archie’s chemo is due to start and a meeting is held with Mr Mallucci to hear his thoughts. An hour later and everything has changed yet again. Mr Mallucci does not think the tumour is inoperable and agrees to carry our surgery without any course of chemotherapy beforehand. A date is booked for Thursday 15th July for the operation to take place.

Hayley and Craig remain realistic and know that if surgery is going to be a success it needs to be a total full removal of the tumour and the odds of success are 50/50. Despite these odds, the outlook is much better than ‘palliative care only’ and they are prepared to try whatever it takes to save their Christmas Angel. To put it bluntly they state “it’s try or die”. What have they got to lose?

Fundraising for Post-Operative Treatment

This brings us onto the purpose of the Go Fund Me page. If Archie’s surgery is a success then the next course of treatments he needs to save his life are not guaranteed to be available on the NHS or in the UK. The other families who have got this far on their grueling journeys have had to fight for Proton Beam Therapy (PBT) to obliterate any remaining microscopic cancer cells and for maintenance chemotherapy over 12-18 months to try and prevent a relapse. ETMR’s are just so deadly and sadly so little can be done if Archie does relapse.

The downside is that most survivors we know of have had to go abroad and self-fund to get this much-needed maintenance chemotherapy. This means travelling overseas every month for at least a year issues with Covid, visas, travelling all the time with a poorly toddler, separating the family again, and also the huge cost (still undefined).

Time is of the essence to raise the funds needed to cover Archie’s future life-saving treatment. Any gaps in treatment whilst the family try and get the funds together will mean he is unlikely to beat his fight against cancer as has more chance of a relapse.

We are relying on the kindness and generosity of anyone reading this to donate and help Archie fight! We are so grateful for any fundraising events or donations you can make no matter how big or small.

If Archie if fortunate enough to get what he needs here in the UK and on the NHS then the funds will be donated to brain tumour research, or alternatively gifted to help other families who need to self-fund, in the hope that more children have the chance of beating the odds and getting the treatment they need.

With love and hope,

The Vaughan Family and Bella the Beagle

 

  • Kam Malhi 
    • £10 
    • 5 mos
  • Anonymous 
    • £50 
    • 5 mos
  • Anonymous 
    • £50 
    • 5 mos
  • Tracey Lowe 
    • £10 
    • 5 mos
  • Sophie Stead 
    • £80 
    • 5 mos
See all

Fundraising team: Archie's Army (15)

Katie Davis 
Organizer
Raised £6,785 from 23 donations
Leeds, UK
Katie Davis 
Beneficiary
Craig Vaughan 
Team member
Raised £7,115 from 41 donations
Hayley Vaughan 
Team member
Raised £5,400 from 60 donations
MetCon Leeds 
Team member
Raised £1,495 from 15 donations
Ryan Redmond 
Team member
Raised £1,165 from 48 donations
See all
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