The family is devastated to announce the sad news that Jordan passed away on Monday 4 April 2016.

In the final month of his life Jordan was cared for by the dedicated doctors and nurses at The Royal Marsden Hospital in Sutton.

Jordan was an exceptional individual that touched everybody he came into contact with. He fought a brave battle but in the end he was tired and could fight no more.

His absence will leave a huge void in our lives that can never be filled, but he will live in our hearts forever.

"Something of the person you love will always remain in our heart something of his dreams, something of his hope, something of his life, And all of his love"

The family would like to thank all the family and friends who contributed so generously towards Jordan's fund raising in the past months. Your contributions and kind words are very much appreciated.

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To everyone who has donated - thank you so much.  I thought you might like to know how things are going with Jordan now he is in Germany.

I am happy to report that everything is going well and according to plan with Jordan's treatment here at the Hallwang.

Day 1 - Thursday 10th December

We arrived from Stuttgart airport after an hour and a bit long drive at around midday so we decided to go straight to the clinic to start treatment.

The people at the Hallwang were as expected very welcoming as they made us feel at home right from the off.

We started by seeing Dr Muehe who was able to put our minds at ease with her relaxed bedside manner, following the consultation with her she ordered treatment to start, straight away.   Treatment consisted of two infusions, liver detox and Vitamin C followed by the Multiplex
Peptide Immuno vaccination which includes an Adjuvant. This is against
the tumour antigen - Survivin.    The antigen was detected as a strong marker during the recent (TAA) Tumour Associated Antigen Testing.    Treatment finished at around 17h30, which felt like a very long day especially for Jordan bearing in mind that we had to be up at 3.30am
to catch our flight.

After treatment our hosts Charlie and Elizabeth Kruger collected us from the clinic to take us to our new home for the next 5 days. They are a retired couple and are the loveliest people you can ever wish to meet. 
You can’t help but feel the real reason why they are making their home available for people like us for almost no financial gain is because it gives them great joy to give back to society. Clearly they are a very blessed couple to be in such a fortunate position to help others.

Thanks to people like Charlie and Elizabeth and everybody at the Hallwang we will certainly miss home just a little bit less over the next 5 days.   We found the accommodation at very close proximity to the clinic barely 500 meters away, and at 40 Euros a day to sleep four people comfortably with all the amenities what is there not to like? What a find!   

Fortunately the doctors decided that Jordan was well enough to stay with us instead of the clinic, this saved an additional 3780 EUR.    The extra money will certainly be welcome and as it can go towards our next treatment here at the Hallwang which we expect to be early in the New Year.

At the close of day one I am filled with mixed emotions, on the one hand I am relieved that Jordan has finally started the treatment he so deserves but I am also very much aware that we have a mountain to climb to get the funding sorted before the next round of treatment.

But as I prepare for a good night’s rest after a long day I reflect on how fortunate we really are to have such a great bunch of people working together and that's when I realise it will all be alright in the end. Long may the Good Force be with us.

Day 2 - Friday 11th December

Day 2 and we are back at the clinic at around 10h30 to continue with treatment, it is more of the same, liver detox followed by  the vitamin C infusion followed by the multiplex peptide vaccination. There is a long delay between the vitamin C and the vaccination as we wait for the blood results to get back before they can proceed. The white blood cells have to be at the right level before our Oncology nurse Specialist  Maike will make the decision to proceed. I sense that we are in good hands but then I always thought that through my previous dealings with her, always comforting in times like this.

The Multiplex peptide vaccination is by far the most expensive of the treatments here at a total of 22,500Euros for just 5 treatments over the course of the next 6 days.   Across the room from us there is a young man all the way from Australia with his dad receiving treatment. He has an even rarer type of Sarcoma than Jordan and the disease has spread. My heart goes out to this young man as I overheard him joking with his dad later today over lunch.   The nurses demonstrated the whole body Hyperthermia process to Jordan in readiness for this treatment to start on Monday, so there are "no surprises" as Doctor Muehe explained.

I can tell that the treatment is having an effect on Jordan, it is not his best day so far, he seems tired and irritable today, but I find myself thinking wouldn't you be after 10 gruelling months?

Treatment finished earlier today and we decided to drive to a nearby town called Freudendorf where there is a Christmas fare on. It did the trick and all of a sudden the needles and medicines are forgotten the 18 year old has come to life laughing and joking with his older brother Max and all is well again, at least for today.

Over the course of the next 4 days we have Photopheresis and Ozone Therapy including Hyperthermia treatments planned

The Next Generation Sequencing testing III on the tumour tissue started last Monday and is well underway with results expected early in the New Year. Gene typing is a long protracted process with a tremendous amount of stored data the equivalent of 90 000 down loaded songs I am told.

Provided strong markers are found, this will enable doctors to identify a Molecular targeted therapy. In the meantime we wait and hope that the testing is successful, this is yet another hurdle on our way but as always we remain cautiously optimistic.

Everything is falling in place and the last few weeks of hard work is finally starting to make sense, life is almost good again...

May the good work continue.

Jordan’s 8 month Journey with Cancer

We are raising money for 18 year old Jordan Lotter, who very recently received the difficult diagnosis that his cancer has returned and we have run out of options for treatment in the UK. 

Jordan's diagnosis is Malignant Peripheral Nerve Sheath grade 3 which is a particularly aggressive form of the disease.

Thankfully, we have found the Hallwang Oncology Clinic in Germany who has given us hope. The doctors at the clinic employ various methods for treating this rare type of cancer and they have already designed a personal treatment plan unique to Jordan. Once started the treatment is due to take place over the course of four months. However, treatment is costly and time is of the essence so we need to raise £65,000 urgently in order to start treatment soon.

None of us ever dreamed we'd find ourselves in this difficult situation as it always seems to happen to the next person and never ourselves or members of our own family. Jordan is a wonderfully kind and caring young person, always ready with a smile and some witty banter no matter what life throws at him.

He always places others before himself, so please help us to help him by donating to his cause.

All donations are gratefully received however big or small.
All funding will be managed by the Yes To Life Organisation

We are delighted to have the support of cancer treatment
campaigner and patient advocate, Kate Spall, founder of the Pamela Nortcott Fund. If you wish to help Jordan and need any further details about his case please contact her on Twitter @campaignkate

The Pamela Northcott Fund | pamelanorthcottfund.org.uk E. kate@pamelanorthcottfund.org.uk

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