Support 4 Henry

Progress

In 2014 Henry was diagnosed with a malignant Grade 4 Glioblastoma Terminal brain tumour. It is inoperable and he was given 14 months to live.

About why we are fundraising

We thank each and every one of you as without your fundraising Henry would not be in the position he is today alive and still with us, as in October 2014 we were given every parent’s worst nightmare that Henry was given 14 months to live, I can’t even explain to you how we felt that day given that news, I know my stomach was in my mouth for a long time, and we went around in a daze for some time trying to take everything in until we decided we had to do something, we paid to see consultant after consultant and as all doors were being closed in our face we and close family started to research everything to give Henry a chance.

Our fundraising will continue as we will not stop, and will continue the search for treatments for Henry’s tumour, to stop it reforming and keep him alive.


henry-beach
Henry Searle

Updates

03/03/2021

Henry was diagnosed in 2014 with an inoperable Glioblastoma multiform terminal brain tumour, we were told he had 14 months to live, our world fell apart that day, and from that day to date, as a family we have researched this dreadful disease, we have searched every website, every country searching for treatments for the deadliest of tumours.

Henry’s lifestyle changed that day with a continuous diet, supplements, alternative treatments and non-registered therapy’s and treatments. It has cost hundreds of thousands to keep him alive.  All the family and friends from all around the UK, and abroad have supported his treatments financially and fundraising taking place all over, as you will see from his Website set up back in 2015 by his cousin Stephen and monitored by a family friend Martin, without these treatment’s and strict regime we know Henry would not be here today.

We were told in September that the options were running out for Henry as all treatments were becoming resistant as this is the danger of this type of tumour. Henry was offered a 3rd line chemotherapy with a 10% chance of success. In January Henry suffered a major seizure and after scan and MRI we were informed that Henry had disease progression and his tumour had increased considerably also surrounded by oedema, cysts and swelling.

His consultant informed us of a Drug Called BEVACIZUMAB (Avastin) he said it had had some good results however, it was not covered on the NHS and each infusion was on average £3000, 3 infusions in a cycle, we are not sure how many cycles Henry will need or if the treatment will work. One cycle is approximately a month at a cost £10,140.00 a cycle.

This drug is a targeted therapy and targets a protein called vascular endothelial growth factor (VEGF) that help cancer cells grow a new blood supply. Its aim is to reduce the supply of oxygen and nutrients so that the tumour shrinks and stops growing. We are also looking into another treatment should his tumour shrink enough to try another treatment that is approximately £30,000 euros. When we were given the shocking news we estimated at the time 40K but we are not sure how much we will need this year.


GLIOBLASTOMA IS A TERMINAL DIAGNOSIS, PATIENTS TREATED WITH SURGERY, CHEMOTHERAPY, RADIOTHERAPY HAVE A MEDIUM SURVIVAL OF APPROXIMATELY 12 MONTHS, FEWER THAN 25% SURVIVE 2 YEARS, 10% SURVIVE 5 YEARS. HENRY HAS REACHED 6 YEARS, THROUGH THROWING EVERY TREATMENT AT THIS DREADFUL MULTIFORMING DISEASE.


The local CANCARE charity have supported Henry, we would not have got through this without their support and financial help, when we were turned down by all MAJOR UK CHARITIES, we felt helpless. Natasha Norman is my main contact to Cancare she is on the end of message, phone or email at any time. I don’t think people realise that it is very difficult to get money from the larger charities and the process is so long. I don’t want people to stop donating to them at all, but I do not think the local people of Swanage realise what a fantastic job our own silent charity does for our community.  I say they are silent as you only hear of them when you need them, and we have certainly needed them along with my next door neighbour and many other people I know. See more about Cancare

The local town have pulled together to support Henry since his diagnosis, the theatre the schools, locals and business’s holding fundraising events, businesses donating prizes,  they have all paid for so many of Henry’s treatments it’s unbelievable the support behind us.

If you can share the GOFUNDME site my niece Margarette Corben set up to raise the money for Henry’s treatments, AND DONATE ANY SMALL AMOUNT we would be most grateful, we do not know how much in total the Drug prescribed that is not covered on the NHS.

Vicki Searle – Mother to Henry.


 

01/03/2021

Thank you to all who have donated so far on the Go fund me campaign, we are so grateful and amazed by everyone’s generosity, without it we wouldn’t be close to our target!
Over the past week there have been a number of fundraisers including a raffle a bonus ball prize, quiz night and a live streamed music by Twisted Roots!! Thank you to all the organisers and for everyone who got involved ❤
Henry has had his second infusion and will be having the bloods taken for his Dendritic Cell Immune Therapy, this Wednesday.
Don’t forget this Saturday 6th March 10am-2pm Bliss will be doing Cake and hot drinks with 100% of the proceeds going to Henry, so thank you Sally and Lou for organising this amazing event. ❤
Thank you for all the messages of support.
We are so close to our target so keep sharing and donating

tREATMENT


17/02/2021
Thanks to everyone’s continued support and donations on the Go fund me fundraiser Henrys second infusion treatment has been booked and paid for!!! He is due to have it on the 26th February and aiming to have blood collection for the second half of his treatment on the 1st March!!

Henry
 
Docs
 
cost
 

04/02/2021
THANK YOU ♥️
Its been a very strange and awful year, through the first lock down we were still travelling every week to The Royal Marsden in London. Henry was on trial but unfortunately it failed, so he was taken off it. They then tried chemotherapy and it also was unsuccessful.

His tumour has grown considerably and he had a major seizure last week. Paramedics were called as he was unresponsive for 3 hours, this then prompted immediate MRI and CT SCANS by top London specialist and surgeons. We have been told that it is still inoperable and they cannot drain the growing cysts because as soon as they do, they refill and there are no other treatments available on the NHS. They told us about a drug that is not registered on the NHS but has had good responses recorded, we’ve been told to try everything as he is running out of options. Unfortunately the cost of this drug is not covered on the NHS and we have to pay £3000 per infusion.

We are extremely grateful to The Royal Marsden in London who will administer each infusion, as the cost if done privately runs into hundreds of thousands of pounds! The infusion treatment will help to shrink the tumour and oedema which is causing Henry’s cognitive problems he will then be eligible for the immunotherapy which costs £30,000.

Past updates

January 2015 – We as a family are overwhelmed by everyone’s prayers, support and generosity. If this alone could be a medicine for Henry, he would be cured.
We had thought we had exhausted all our efforts for treatment here in the UK, however we were so grateful from a lead given to us, that a group of Oncologists and Scientists in Harley Street London in February 2015, now they have Henry on a clinical trial, the combination of drugs are to keep the tumours at bay, this is the first bit of hope we have had in a long time and their thoughts are that this combined with a treatment abroad, that this will have a positive effect on Henry’s tumour and cancer. We live in hope.

2015 – To Date Henry visits the Chinese Guardian Herbs and acupuncture in Poole (Dolphin Centre). Henry first went to Mary over a year ago with Tinnitus after his diagnosis, after 3 months of treatment Henry no longer has Tinnitus. Mary treats Henry during Chemotherapy to remove toxins from his body to help his immune system; Henry has been on an herbal mixture for over a year with very good results, for his liver function, hay fever, promoting hair regrowth and general wellbeing. We cannot thank her enough for her support and believe that her treatments have got Henry through heavy periods of chemotherapy and helped him to remain fit and well.

Henry had treatment in India (Cytotron RFQMR) in May 2015, where he underwent 28 days, every day of a non-invasive treatment a safe tissue engineering technology, which uses non-ionising radiofrequencies to induce apoptosis (programmed cell death tissue in the tumour) As a result in just 28 days there had been a reduction in Henry’s tumours and the activity of the tumour.
Henry returned to India in October 2015 for another 28 day cycle of treatment, the results were once again good for this stage of GBM with further reduction in the lesion and he has no disease progression and is classed as stable.

 

Henry in India
Henry with doctors in India

 


Henry had a scan at Poole hospital in January 2016 and all is still stable no disease progression however no further reduction. We have now transferred to Southampton from Poole to work with a team who will consider Henrys treatments outside the NHS, which is something his consultant was not prepared to do in Poole.

In February 2016 we have met Henry’s new consultant and the meeting was very positive and informative and feel he is on board and with us in our fight to save Henry. It is the first time that we have had confirmation in writing from the NHS recognising that Henry’s tumours have reduced and that the activity (cancer) in the tumour and the mass effect compared to his original diagnosis is reduced and that he is in a stable position. This is something we have been fighting for and we are pleased with their recognition and confirmation. His tumour has been downgraded from a 4 to a 3.


Henry went to India on the 4th May 2016 and has just returned on the 13th June, completing another cycle of treatment. The tumour is stable and Henry is fit and well and healthy, he has no symptoms relating to the tumour which is very positive at this stage in GBM.

We went to Care Oncology Harley Street London on Friday 15th July 2016. The team there are using
Henry’s results with a group of Consultants at Leeds NHS who are looking to treat patients as the results for GBM have not been good.

This is a start into moving forward and attempt to raise awareness under the NHS. We were pleased with our consultation, and Henry’s tumour remains stable and show signs of dead cells and reduced activity which is progress leading towards a
benign tumour, which we hope and pray will be the results as you can live with a benign tumour. We still have a long way to go but new trial drugs are coming out which Henry will have shortly and his next visit to India will be January 2017.

Henry continues under the Care Oncology Team to date.
On 4th August 2016 Henry had his MRI scan in Poole, his consultant called me on the 8th with the fantastic news that Henry’s tumour is still stable no activity and no change. This really is a big thing when discussing a Glioblastoma Tumour. On September 15th we visited Southampton and the consultant and team are pleased by Henry’s results.

Henry had his scan on 12th December 2016, it is always a fraught stomach churning time, and we were so pleased to receive Henry’s report to state that his tumour is still stable, with no disease progression and the activity of the tumour still classed as inactive. Henry is symptom free and happy and healthy. I can’t tell you how over the moon we were to receive this information and we will have a happy Christmas.

On the 19th January 2017  Henry left for India to start his 28 day cycle with my sister in law Priscilla. Henry was determined to eat well and gain weight after coming down with sickness bug at Christmas and lost alot of weight. He returned fit, healthy gaining a stone in weight and had been to the gym to build up his muscle. His MRI scan was very pleasing still the stability of the tumour and a further reduction in the size.

Henry returned home on 1st March, it was a very long time for us without him. Henry has seen his Consultant on the 16th of January who has confirmed the MRI scan showing further reduction and the stability of the activity. Henry’s latest scan in June 2017 shows stability with no further nodules and the enhancement stable.

We are now awaiting the scan date for December 2017 which is always a worrying time; we are planning treatment in India in the early months of 2018 depending on the scan results, and the tedious planning for medical Visas etc.

Henry had his scan on the 12th December 2017 and we were overjoyed to receive the report that stated stability of the tumour, no enhancement and no oedema. A stable tumour once again, is great for his type of tumour.

We thank each and every one of you as without your fundraising Henry would not be in the position he is today alive and still with us, as in October 2014 we were given every parent’s worst nightmare that Henry was given 14 months to live, I can’t even explain to you how we felt that day given that news, I know my stomach was in my mouth for a long time, and we went around in a daze for some time trying to take everything in until we decided we had to do something, we paid to see consultant after consultant and as all doors were being closed in our face we and close family started to research everything to give Henry a chance.

Our fundraising will continue as we will not stop, and will continue the search for treatments for Henry’s tumour, to stop it reforming and keep him alive.
Henry and Jonathan left for India treatment plan on Easter Monday 2nd April . Priscilla will swap over with Jonathan on the 16th April 2018 for the remainder of Henry’s treatment, they will return on 10th May 2018. Update to follow after scans and treatment.

All monies raised to date have been used for treatments, consultations, alternative therapies, dietary supplements, treatments abroad, immune boosting drugs and therapies, Care Oncology drugs and consultations, scans and legal advice and fees. Please continue to pray for us and send us any leads or any cancer treatments that may help.

Please send them to www.support4henry.co.uk
If you can think of any fundraising events you could do, cake sales, raffles, tombola’s, jumblesales, sponsored walks etc. then please contact the website anything would be gratefully appreciated, all the little amounts mount up.
Thank You. With love from all the family Vicki, Jonathan, Henry, Charlotte & Oliver Searle xxxxx

Pray for us and pray that you never have to deal with this awful disease that takes so many of our loved ones.

Cancare team

Cancare

The local CANCARE charity have supported Henry, we would not have got through this without their support and financial help, when we were turned down by all MAJOR UK CHARITIES, we felt helpless.

They offer support to cancer patients, their families and carers at any stage following diagnosis.

See more about Cancare

How we use donations

All treatments have been funded by family & friends and local businesses fundraising and generous donations. Below are costs for treatments outside the NHS.

Total expenditure to date from 2014 – 2018 is £74,254.13  

Indian treatments

Last updated 2018

Jan 2015 - £ 10,924.97
Oct 2015 - £10,190.00
May 2016 - £9,889.00
Jan 2017 - £9,156.00
Apr 2018 - £7,777.00
Total costs indian treatments - £47,936.97
Miscellaneous Costs

Last updated 2018

Travel costs for treatments - £495.00
Dietary and Detox -£3,806.48
Postage Costs - £413.06
Medical costs - £ 7,167.98
Treatments and Supplements - £9,655.53
Legal fees for power of Attorney - £540.00
Fundraising costs for Events - £4,239.11
Total Misc costs to date - £26,317.16
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