For Pete's Sake - A Matter of Life and Death

For: Peter Wright
Kingston upon Thames, England, United Kingdom
Organizer: Jackie Henry
For Pete's Sake - A Matter of Life and Death (Peter Wright)
of £60,000 goal
29% Complete
Raised by 246 donors
This fundraiser is closed. Thank you for your support!

The Story

Nothing can prepare any one of us for the words “YOU WILL DIE!” You can try to imagine how they might feel, but the reality is, well unimaginable. There are three things you might need to know. One, that the process of shock is utterly relentless. Two, that at times, the grief and the strength required to simply get through the day, both as the patient and the carers, drives you to a place that will test your endurance, commitment and hope. And three, that for our family and for Peter especially, we are more proud of this past two years than of any other period in our lives. It has changed us, that much is certain - getting to this point and across the line of no return has brought us closer, given us renewed family strength and unity and allowed us to value life in a whole new light. That, in itself is a gift.

We’ve learned a lot and we are grateful for that. How to remain (relatively) calm, deflect fray and respond with dignity and optimism. To be hopeful and balanced in light of it all. Keep going. Be positive. Learn something new. None of us know when we might need to call on our strength of character and judgment, you just hope it’s there when you need it! Humour has kept us going at times but it’s just as well we didn’t hear this at the beginning;

“It’s going to get a whole lot worse, before it gets worse!”

Anyway, it just got worse. So it’s at times like this, that being anything less than honest and direct is of no use at all! We need your help if you can spare it!

Last week Pete began a new course of critical treatment. Without it he will die, and he is not ready to die. Are we ever ready? Perhaps when we’ve wrung out every last bit of living, and that’s not yet.

Peter’s tumour is now so aggressive that in actual fact, two weeks ago, had we not sought a second opinion, he was given just a few short weeks to live.

The specialist we saw subsequently, told us that the only option was for Pete to begin a revolutionary combination treatment plan which includes the chemo drug Lomustine, Valganciclovir, an anti viral along with a fortnightly infusion of Avastin, a licensed drug for some cancers but not currently used for GBM. This works to destroy the blood supply to the tumour and is of course, the expensive bit! But a week in and Pete’s recovery is evident already. It gives us hope, and the most precious gift of all - time.

But to date, our private medical insurance has refused to contribute anything towards the treatment citing “not a known treatment” as their reason. It is not a known treatment because people do not normally survive long enough to try the alternative! As a result, whilst we fight the case with them we are funding the treatment ourselves. Put bluntly, their decision, which was made without the facts, slammed the door in the face of Pete’s treatment. We are fortunate enough to be able to fund a round ourselves. That might not be an option for most people...

So we need your help if you can spare it. We will fight Simply Health and bring a campaign forward that will raise awareness of the issue and their attitude. At the same time, we will continue to raise awareness for brain cancer and funds too if we can. Certainly any funds we raise will be given back to charity should Simply Health review their decision to pay.

So this isn’t just Peter’s life now, it’s his legacy too. Without innovation and things that don’t make sense, we don’t move forward. That applies to everything. The opportunity is always found in the void - the unexplained and the seemingly hopeless.

We are staring at that void! So if you can help us it would mean more than words could ever adequately express. Your help means Peter can fight harder and we can spread the word wider so hopefully one less person will hear those words. “...I am afraid you will die”.

Thank you so very much.

Peter, Jackie and our family.

Fundraiser Updates

Posted on June 14, 2016

Posted on June 14, 2016

Dear All,
Yesterdays scan results with my consultant, Paul Mulholland revealed what we already knew.
That is, in spite of the extensive treatments I have undergone over the past nine months, the cancer in my brain is still growing. It has become increasingly evident as I am losing functionality on the right side including my sight and mobility.

So what are we to do? That was the question on all our minds in the consulting room. 

Well, the truth of the matter is that all has been done; every stone unturned, every path taken and with the help of yourselves and technology we have literally travelled the world and back for treatments which have slowed down the pace of the tumour as it pursues its relentless course.

However, these treatments have all given me additional important time with my family.

There is no more to be done: So we will simply live, we will enjoy and we will make even more memories. We will just love each other and treasure the moments that we have left to share. Thank you for walking with us…

Pete, Jackie and Pat, Bess, Jordan and Conor

Posted on April 4, 2016

Posted on April 4, 2016

I can only describe the last two weeks as some of the most tumultuous days I have had in the 21/2 years since I was diagnosed with glioblastoma.

It began on Monday 21st March with confirmation of the tumour regrowth at UCLH with Dr Paul Mulholland.

He concluded we had to act fast and secure a new cancer killing treatment within the fortnight.

Problem was, he didn’t have anything to offer really. All lines in the NHS have been long exhausted. The only remotely viable option was a private treatment, which had the potential of being extremely toxic to me as well as the tumour. The price tag of 120k was the most toxic part of all!!!!

In sheer desperation we did consider this as the ONLY way forward, particularly as the tumour is impacting my sight so much now.

However, after 2nd and 3rd opinions and good guidance I returned back to the German clinic to continue dendritic cell vaccines along with lower doses of these immunotherapy drugs.

This means the funds required have reduced by half.

With the generous loans and gifts we have received I am almost there which ensures I can also continue with the avastin drug to keep the swelling in my brain to a minimum whilst the drugs take effect. Two more visits in April then May and then an MRI scan in mid June.

Meanwhile on Tuesday 22nd March we met with Dr Clovis Fonseca from Brazil for a consultation and a prescription for perillyl alcohol infusions.

“No quick fix” but this treatment, which I will start this week daily at home will work alongside my immunotherapy treatment disrupting the cancer cells and encouraging them to die.

There are no miracle cures but I search for and try new innovations so I can prolong my time and quality of life, share my life with Jackie and see all my children continue in their lives.

So thank you for supporting me in this endeavour. We as a family are so appreciative of all the kindness, love and care we have received over these uncertain 30 months. I’m holding out for more…

Posted on March 23, 2016

Posted on March 23, 2016

Wow, thank you to everyone so far who has helped us fund this next stage in the treatment. This is such a difficult time and even if the wonderful NHS had the funds and means to pay it would still be the hardest moment of my life. The astronomical expense of life saving cancer treatment is really at the heart of this story. It makes the journey so much harder and depleting of my vital energy reserves which I need to fight this and enjoy each day. Each contribution takes me one step further to a good treatment that will extend and perhaps even preserve my life for some time to come. I have so much to live for and I simply will not just give up. 
All our love to you and a Happy Easter too  
Pete, Jackie and our tribe

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