84
84
11

'Team Tony' needs your help.

€7,513 of €10,000 goal

Raised by 92 people in 6 months
I'm Jo and I’ve been lucky enough to meet and spend the last 24 years with the love of my life, my husband Tony, but now we need your help. Tony is 59 years young with an energy and vitality for life that is inspiring, but now that is being threatened, Tony has been diagnosed with cancer in his throat again and this time our treatment options are very limited. We are based on the border of Clare and Galway on Ireland West Coast and we need your help to enable us to get the best possible treatment we can.

27978450_15196689310_r.jpeg
The Back Story

Tony was diagnosed with a large tumour on his vocal chords in February 2014, he underwent aggressive and intensive radiotherapy over 7 weeks combined with chemotherapy.  His response to treatment was amazing, he astounded everyone and for the last 3 1/2 years everything has been fantastic, it made us look at the world differently, re-evaluate life and question what we wanted from it.

27978450_15196691540_r.jpeg
We changed our life completely,  we married after a 21 year engagement, started doing things we had always meant to and started a new business, Celtic Fairy Doors, this business is just starting its 3rd year now and going from strength to strength  finally things were starting to go right for us, that is until now.

27978450_15196692860_r.jpeg
Where we are now

Just before Christmas in 2017 I started to notice changes in Tony's voice and he started to get a sore throat so it was straight back to the hospital for tests. After meeting with his specialist, then undergoing a scope, a biopsy, CT and PET scans we received the devastating news that the cancer is back. This time it has spread and our treatment options are extremely limited, it is inoperable and Tony can't have radiation again as he had the maximum last time. There doesn’t appear to be a curable option available at the moment but I intend to turn over every rock and look in every corner of the globe to find a way to live with this cancer even if we can't cure it. Tony's medical team have been fantastic, but there is only so much they can do, they can only offer Tony chemotherapy which after much research doesn’t appear to be our best option. I certainly wish I had a medical degree as I have been spending most waking moments researching, the only way we are going to beat this is by researching every avenue we can, not accepting limited options, sifting fact from fiction and the determination that the solution is out there we just have to find it.

27978450_15196693780_r.jpeg
Why we need your Help

We are determined that he can fight this and win but we need your help. Unfortunately in the big scale of cancers head and neck cancer is not common enough to get the funding for research the way cancers such as breast, prostate and lung cancers do, this means the treatment options are limited and hard to find. We have found a medical trial in St James Hospital in Dublin that Tony has signed the consent for,  it  give's Tony a 50% chance ( the trial is randomised)  of receiving Immunotherapy which we are fast believing may be our best option. Immunotherapy is not currently licensed in Ireland for head and neck cancers, so the only way of getting it here is through a clinical trial. 

27978450_15196697340_r.jpeg

As the research is limited we also want to get a test called Oncofocus at a cost of €1800 which could potentially be of great benefit to Tony as it enables them to match the unique mutation profile of Tony's tumour to over 680 targeted therapies, in addition and very importantly the test is able to predict if he's likely to respond to immunotherapy.   We also want to have a consultation with Dr David Fennelly at St Vincent's and Blackrock in Dublin who is an expert on targeted therapies and immunotherapy and seek his advice.  This will be costly as will continuous trips to and from Dublin, at least one or two a week for the foreseeable future. It may also be that once we have the test results we may be searching globally for the treatment Tony needs and be looking for help with funding from any and all avenues possible. We are going to try everything in our power to get the immunotherapy treatment, which is not going to be simple, we are researching other trials globally and where these drugs are available.  We have spent the best part of the last 2 months in and out of hospitals and don't see that changing any time soon, which as we are self-employed has meant we have used up all of our financial reserves. Time is ticking by, it is urgent that we get these tests and appointments as soon as possible and that is why we need your help.

27978450_15196698610_r.jpeg
We are going to win this battle with your help.

We are going to win this battle but really need your help to do so, as unfortunately all of this is going to take money and we are asking from the bottom of our hearts that anyone who can will donate, no amount is too small and every cent is appreciated. If you’re not able to donate then please help our campaign by sharing and helping spread the word. We are just asking for the best possible chance to keep Tony living life with his family, where he is the glue that holds everything together. He is the most loving, caring, talented person I have ever met and his love and zest for life is what sustains us all. Our family has already endured more than its fair share of loss and grief so please help #teamtony to win this fight. 

 

Thank you for taking the time to read this and please know that each and every share or donation means more than we can ever express. 

With love & humble gratitude 

Jo & Tony
  https://m.soundcloud.com/clarefm/jo-white-and-sallyann-marron-on-tony-perrys-story
+ Read More
It is with the greatest heartbreak that I need to tell you that yesterday afternoon we lost Tony, suddenly and unexpectedly, he passed at home in my arms, for him it was quick and painless and at least now he is not suffering.
I lost the complete love of my life and reason being yesterday, my heart has simply been ripped from my chest, he was the driving force of us, I was just the mouth piece. It was Tony who was the strong one, the sensitive one, the caring one, it was Tony that rubbed off my sharp edges, and made me almost human. He had a total zest for life and positivity that was enough for both of us, he was the most special of people and I am honoured to have been privileged to share the last 24 years of my life with him.
Tony leaves behind a host of broken hearted people, namely his children who he loved so totally and was so so proud of, Tracey, Gary, Kellyann, Darren, Christopher and Emily and his amazing grandchildren Lillysue, Lola, Sofia, Xander, & Theo. It is with huge regret that he will miss out on meeting Darren’s child next month.

I wish to thank you all for your support, help and Love.
+ Read More
Unfortunately we have been dealt yet another poor hand. Tony's scan this week did not have good results. The primary tumour is continuing to grow which is certainly not what we wanted to see. Now we have to make some decisions, from all of our options we think our best bet is to come off the trial and get as much radiation as they can give, this would only be a pallative dose as he can't have enough to cure it due to the amount he received last time. The plan is that this would shrink the tumour, then we could petition to restart the trial, it's a gamble but waiting another 6 weeks to see if the immunotherapy starts to work we feel would be a far bigger risk. There is some proof that radiotherapy given with immunotherapy can actually increase it working, it's a strange anomaly.

We did get our oncofocus report this week that this fundraising helped pay for, and it indicates that Tony's chances of the Immunotherapy working are good. So we are hopeful that this is just a hiccup on this long journey.

Tony is continuing with his other treatments, the lympedema treatments 2 or 3 times weekly , we are looking into getting to vitamin c infusions and a few other things to build up his immune system as much as possible in the hope of a return to the Immunotherapy.
In the meantime thank you all for your wonderful support, we would be in a much worse situation without your help.
+ Read More
Tony has completed the first cycle of his experimental treatment on the Clinical trial in St James Hospital in Dublin, he has been receiving a potentially game changing Immunotherapy combination of Nivolumab & Ipilimumab. He completed this cycle on Monday and received a CT scan, we had been warned that with this treatment the tumour can flare up before it sort of implodes.
The scan results are in and are very positive showing a slight increase in the main tumour but decreases in others. This is a great sign for the first cycle of treatment and means that Tony will continue on this treatment path currently.
We have also discovered that most of the pain and symptoms Tony is suffering is coming not from the cancer but from something called lymphedema, which is actually a late onset side effect of his radiotherapy last time and triggered by the cancer being in the lymph nodes this time. This has been causing swelling to the head and neck and causing a lot of pain. However thanks to your donations we have been able to start him on a course of treatment with a MDL specialist. He attended his first appointment today and feels well after it.
Thank you for all your donations and help, this would not have been possible without the support you have all offered, the constant trips to Dublin, specialist appointments and treatments are financially draining and we simply would not be able to do it without your continued support.
+ Read More
It's hard to believe it's almost 2 weeks since Tony's first treatment, he seems to have suffered no real side effects from the nivolumab and ipilimumab so fingers crossed that tomorrow he can receive the second dose of Nivolumab. Our second surgical opinion is also tomprrow, whilst we really don't expect anything to come from it you never know what each new doctor may know. So whilst he is in treatment we are still looking, searching and hopeful of finding other options. Thank you to everyone for your support it is enabling us to continue searching for the best possible treatment to this evil disease.
+ Read More
Read a Previous Update

€7,513 of €10,000 goal

Raised by 92 people in 6 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
€100
Anonymous
3 months ago
EW
€10
Emma Wright
4 months ago
HL
€20
Helen Lake
4 months ago
RH
€600
Ramona Hayes
4 months ago (Offline Donation)
MM
€100
Michael McMahon
5 months ago (Offline Donation)
AA
€500
Anonymous Anonymous
5 months ago (Offline Donation)
CW
€100
Caroline Whelan
5 months ago
AA
€100
Anonymous Anonymous
5 months ago (Offline Donation)
EL
€10
Emma Larsen-Williams
6 months ago
€20
Anonymous
6 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a €5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.