Support Petes fight against incurable brain cancer
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Hi, my name is Chloe wife to Pete.
We have been together since we were teenagers, happily married for 9 years and have two beautiful daughters, Amelie and Jessica. Life should be perfect....
On 18th May 2019, Pete was taken in to hospital after suffering with headaches and nausea for a number of weeks. He had seen the GP and gone to A&E previously but was misdiagnosed as having migraines. On this day however my brother (a doctor) heard about what had been happening and after asking a few simple questions told me to take Pete to A&E immediately, he didn’t elaborate why but he knew. All of a sudden it felt very serious and I knew we needed to push for an answer this time.
In A&E a junior doctor pleaded their case for Pete to be scanned, although Pete passed all neurological tests she too saw the warning signs like my brother did and fought to have Pete scanned.
Then from that day on our lives as we knew it changed forever, we were told Pete had a brain tumour and likely a cancerous one. Our daughter Amelie was only 7 months old but she still managed to make us smile through the tears.
Fast forward through the years and a lot has happened:
- 8th June 2019 - Pete had a biopsy and we were given a diagnosis of Anaplastic Astrocytoma grade 2.
- 1st Nov 2019 - After a long wait and multiple cancellations Pete had an awake craniotomy to remove as much of the tumour as possible diagnosis was in fact Anaplastic Astrocytoma grade 3.
- Dec-Jan 2019/2020 - Pete completed 33 rounds of grueling whole brain radiotherapy.
- March 2020 - Chemo put on hold in light of COVID.
- May 2020 - We were told the tumour had progressed and therefore the chemotherapy needed to start immediately.
- April 2021 - Pete completed 12 rounds of chemotherapy - Throughout lockdowns which was extremely difficult with a toddler and little support available from extended family due to covid restrictions.
It took Pete a long time to recover from the side effects of treatment, physically and mentally, struggling to return to some sort of normality with this dark cloud hanging over us. He was getting there, though, slowly.
Much to our surprise we found out we were expecting another baby and after a nervous 9 months and lots of tests (to make sure baby was ok) in April 2022 just two days before Pete's birthday our beautiful miracle Jessica was born, she brought so much joy to our family after a very dark time and helped heal our hearts somewhat, completing our family.
Pete even got back to work and was enjoying providing for his family and having some independence again. We always knew there was no cure for Pete’s cancer but we always remained hopeful he would be one of the longer survival stories.
Pete started experiencing regular seizure activity and in August 2023 after a routine scan, we were informed the tumour had started growing again. Pete had his second craniotomy on 14th September 2023. The surgery went well but 4 weeks later Pete did suffer some complications, it was absolutely terrifying seeing how quickly things can change and there were times I felt I had already lost my Pete.
Pete lost 3 stone and became very weak due to muscle wastage from being bed bound, he was unable to sit up for longer than a few minutes at a time let alone stand or walk. After 4 long weeks he was finally discharged from hospital and we are now working with physiotherapists to build his strength up, being acutely aware that he still needed more treatment to try and stop the tumour growing further. However, on 20th November 2023 we then received the devastating news that the tumour had evolved and become more aggressive, it was now unmethylated meaning it is likely to be resistant to chemotherapy - Pete's only choice of treatment left on NHS.
Pete is 36 years old, he has a wife and two daughters who need him. I cannot accept that there is nothing more that can be done if chemotherapy does not work. He has been looked after by two wonderful NHS consultants; his oncologist and his neurosurgeon and we will always be forever grateful to them for their compassion and care throughout and although they have tried everything they can to treat Pete their hands are now tied if chemotherapy doesn’t work. There’s a possibility of further surgery however what’s left of the tumour now is not accessible safely. His very skilled surgeon has removed over 90% of the tumours each time. The first one was the size of a satsuma the second much smaller as it was caught quickly during routine scans.
What is Anaplastic Astrocytoma?:
Anaplastic means the cells divide rapidly and don’t look like normal cells in structure or function.
They are:
- fast growing
- often referred to as malignant or cancerous
- often come back following treatment (known as a recurrence) in a more advanced form.
They’re more common in adults between the ages of 30 and 70 and are more common in males.
About 27% of people diagnosed with a high grade astrocytoma live for five years or more.
Petes oncologist gave us names of two private doctors who offer alternative treatments for brain tumours, one of them being Hyperthermia Therapy and it sounds like Pete is a suitable candidate. This treatment is available in Germany and after visiting many times with his team and seeing promising results this particular doctor bought a machine and is currently the only person licensed in the UK to do it. This doctor is passionate to make a change seeing the devastating impact this diagnosis has on patients and their families. Confirming he has seen no change in treatment options for brain tumour patients or their prognosis in the 30 years he has practising.
The treatment we have been told will cost £6,000 for the first month and £3,000 a month thereafter. Therefore we are desperately trying to raise £36,000 to fund the first year of treatment. This is a treatment however that can continue for many years providing it continues to work so this is an expense we are likely to have every year.
Asking for help or handouts really does not sit well with us we have always been responsible with money and fiercely independent however this treatment is not possible without extra help.
We will be forever grateful for any donation you could spare to get Pete the treatment that could potentially extend his life allowing us to make more memories together as a family. We thought if this could reach 1,000 people and each of those were able to donate £36 we would hit our target and be able to fund a year of treatment - a big ask I know especially during these times but we have to try ♥️
We are so lucky to have such an amazing support system in our friends and family and we will never forget the love and support you have given us throughout the last 4 years. This doesn’t just affect me, Pete and the girls it affects all those closest to us too.
Here are some articles about the treatment we are trying to get Pete on to:
https://oncotherm.com/sites/oncotherm/files/2018-10/Modulated_electro_hyperthermia_%28mEHT%29_in_integrative_cancer_treatment.pdf
September 2019 - Our sweet Amelie knew when things were tough
Daddy is home after a month in hospital!
We managed to go on a family holiday, little did we know two months later we would be told the cancer was back.
After his second craniotomy September 2023
During Pete's month long stay in hospital Oct/Nov 2023
Amelie came to visit Daddy in hospital on her birthday, during lucid moments Pete said he couldn’t miss her birthday so we tried to make it happen but sadly he was just too ill to see her that day. She was so brave and completely understood not once complaining.
Organizer
Chloe Bates
Organizer
England