HopeForLouise Cancer treatment in USA

Louise’s Story – Living with Brain Cancer & COVID-19

In December of 2019 my childhood sweetheart from Padgate High School and wife of 27 years, Louise Hulme, had complained of suffering severe headaches. For someone aged 46 who goes to the gym 5 days a week and who I would have described as extremely fit, this was very unusual and so we booked a doctors appointment straight away. With the signs and symptoms given it was suggested she was suffering from migraines and pain killers were prescribed.

On January 2nd 2020 whilst shopping in the new year sales with her mum & sister, Louise had an episode where she felt the onset of a severe headache and was confused as to her whereabouts. Louise’s mother, Mary, took her straight to Warrington Hospital. After some tests and great care from the doctors and nurses, Louise was diagnosed the day after on January 3rd of having a brain tumour.

Through some magnificent service from the NHS, Louise was operated on less than 3 weeks later at the Walton Centre where a resection was performed with 90% of the tumour removed. Oncology followed at Clatterbridge hospital in Liverpool and on 29th January it was confirmed the tumour was a stage 4 Glioblastoma otherwise known as stage 4 brain cancer, ironically the day of my late dads birthday. We were given the news that although a successful operation, life expectancy was typically 12-14 months. Louise’s age and fitness were positives but not guarantees that this would be longer. Louise had lost partial sight in one eye as a result of the tumour, 

Radiation and Chemotherapy treatments have been ever present throughout 2020 and in January 2021 we were given the hardest of news that the tumour had grown in size. Surgery options in UK were now exhausted.

During the last 12 months, where most people who are told they have a small life expectancy would have lived life to their maximum and maybe ticked off bucket list dreams, Louise has been house bound for the majority of time due to COVID-19. Even when not in lockdown international travel was advised against. But every cloud has a silver lining, as we used this time to research, research and research some more, during which, we came across the Ivy Brain Tumour Centre in Phoenix, Arizona.

At the Ivy Brain Tumour they are conducting trail blazing Phase 0 trials in trying to find a cure. In short they are matching drug combinations to individuals tumours asking two questions –

1. Did the drug penetrate the tumour
2. Did the drug have the desired effect

After reading about a number of experimental trials they are conducting I reached out to them and told of Louise’s story. Over a number of months we exchanged phone calls, emails and all of Louise’s medical notes including a sample of the tumour that was removed.

I cannot find the words to express my HOPE when I received the news that Louise was a perfect candidate for one of the trials. The Pamiparab trial has only been tested on 12 patients so far but all have shown good tumour penetration. In some of their early trials the results have shown an extended life expectancy of up to 7 years. I am not naïve enough to think that this automatically gives us another 7 years together as every individual will react in a different way. But what it does do is buy us time, something that Louise has precious little of. Our daughter is due to get married on August 6th 2022, again ironically this is the anniversary of my dad passing away from Alzheimer’s, it’s as though he’s looking down on us.

The cost of the surgery is $162,000 before flights, transport and accommodation. It would require us being in Phoenix for 9 weeks.

Whilst it is an unbelievable cost and amount, with a little love from family, friends, others touched by cancer around the world and any generosity from donations we HOPE that we can get over this hurdle and be on a plane to the States very soon. I ask myself, what price is the value of hope?

I HOPE that we are able to raise the funds required. I HOPE that the trial is effective and gives my wife an extended life expectancy. I HOPE that she is around to watch our daughter get married and to see our son turn 21. I HOPE that during time another trial or cure is found to rid the world of this horrible disease.

Which is why I write this, in the HOPE that you may in some way be able to donate and help get Louise to Arizona for this innovative trial.

Time is a very precious commodity. It is something that Louise does not have a lot of to live and it is something that I do not have a lot of to raise the much needed funding.

Kev, a loving yet desperate husband.

#hopeforlouise #givehope

Organiser and beneficiary

Kevin Hulme 
Warrington, UK
Kevin Hulme 
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