As most of you Jammers know, we have been supporting a young man called Jordan in his battle against cancer…
He recently received news that he was able to go to the Hallwang Clinic in Germany and receive treatment for his rare Sarcoma cancer. An update from Jordans dad was received on Friday regarding his treatments so far at the Hallwang Clinic in Germany and to tell us that all is well for now…
Day 1 – Thursday 10th :
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 vacination 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 cant 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 accomodation 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 nights 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
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 22500Euros 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 wholebody Hyperthermia process to Jordan in readiness for this treatment to start on Monday, so there are “no suprises” 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 sucessful, 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…