Trek for Sophia
Donation protected
Hello,
My name is Jordan Main-Thorpe and I'm going to be doing approx 10-12 day trek from Bournemouth, Dorset to Newcastle starting 15th September to try and raise some funds for this little warrior's treatment.
Please have a read through the story below, any help in the way of donations would be greatly appreciated.
Back in August 2020 - after a family camping trip and some lovely memories made, Sophia began to complain of a headache, but not making too much of a fuss, as usual, bless her! We thought originally it could be due to her falling from her bunk bed onto dad in the middle of the night, just after England’s World Cup final game, earlier on in the trip.
However, she did not complain at the time of night and went back off to sleep with no problems. Sophia seemed satisfied with some paracetamol as the days rolled by, followed by countless treats. Saturday rolled around, and Dad went out shopping early as Sophia did not feel well enough to tag along. Upon return, it was clear something was wrong. Sophia was on all fours on the sofa and completely out of it. Non-responsive and limp. The feeling was complete and utter DREAD!
We immediately rushed down Durham hospital in and out of traffic, what resembled a movie chase scene.
Arriving at the hospital, Sophia was about to go through three days of hell. Having been originally treated for Meningitis, the docs finally caved and did order an MRI.
Our worlds changed forever when we were told that there seemed to be an aggressive tumour (just smaller than a golf ball) in Sophia’s cerebellum - and that she did not know how Sophia was even semi-cognisant. It needed attention immediately and every hour was critical.
Sophia was then rushed North to the Royal Victoria in Newcastle, where we were taken into a room in the A&E ward, and after one hour, we were met by the entire team; the surgeon, anaesthetist, staff nurse, registrar etc. She was due in for surgery at 10.00am. Mum and Dad were told the risks and figures were popping out of the Doctors mouths just like air bubbles. There is a 15% chance of this, 25% chance of this, 35% chance of this, and even 10% chance of the ‘worst’.
This was the toughest day/s of our lives. The cliche stands where we would have traded places in a nano-second, ten times over!
Up until the operation, Sophia was behind in her speech, and we now know why this was.
She went on to do very well and was out and home safe within a week. She had a follow-up surgery booked in for a Portacath to be fitted for her upcoming Proton Beam therapy. So Sophia endured another operation 2 weeks later to have this fitted, so that blood and anaesthetic could be drawn/administered less intrusively over the coming weeks and months.
We got the OK for treatment to begin in Manchester and quickly changed to Germany. We had a few days notice to get ready - and off we popped for an adventure for the next 9-10 weeks. We did supplement a lot also, which we believe helped curb a lot of the inflammation caused by the radiation. Sophia was sick most mornings and had many bouts of ‘jelly legs’. But she always found the inner strength to keep up with the other ‘funny talking’ boys and girls at the park. Sophia’s words:).
Into 2021 Sophia has had her quarterly scans; however, the one in September was her first one awake (without anaesthetic and significant wait times on the ward). We got the ‘All Clear’ the following week. However, a month later, we received a call from the Consultant, entirely out of the blue, to say a ‘spot’ had been noticed on her spine (Lumbar area).
They requested a repeat scan, so eventually, in Mid-Nov, she did the repeat scan (asleep this time) - a complete brain & spine MRI.
The following week we were sat down and told it was back and looked aggressive, and as it was back this quick, ‘it was only a matter of time’. It was stated that they could offer Radiotherapy (conventional, NOT Proton Beam this time as it’s only offered once on the NHS) and surgery. All of which carry big risks due to the location of the lesion on the spine. The main worry is losing the ability to walk, amongst other things. But that was not a cure; it was simply to buy ’some time’.
The chances of all this are in the high hundreds of thousands to 1 and could be into the millions. Considering the type of cancer, locations of each and them presenting within a 12-15 months of one another.
It was later that weekend that we made the deal to go this alone. We see how Sophia is day to day (up's and down's of course, due to previous surgery & radiation) and just how much she is enjoying life right now. She's dancing (with the odd few falls and slips, but gets up each time and cracks on), doing art with Mum, riding her scooter and new bike (from Santa) and generally chasing the ducks around Chester Le Street Park.
We sat and thought, can we seriously take her into hospital knowing the risks and something she may never actually recover from!!?? We may never get our girl to the point of this state of health ever again. Added that the doctors admitted there could well be a chance she may not ever come back out of hospital. Not to mention mum was also 8 months pregnant at this point in time (End Nov 2021). Also, the new baby was showing growth issues, so mum was being scanned weekly at the hospital and was told the baby would encounter issues at birth, so a c-section needed to be planned. Nothing like the home birth we had planned, with Sophia in tow!!
We already researched War & Peace 5 times over the previous year regarding cancers, Ependymoma’s (which is what Sophia had in her brain - Ependymoma II (Posterior Fossa). This bugger likes to resurface and when it does, it usually spreads and wins... Well sorry, it ain't winning this battle.
We have been told that a piece could have branched off from the operation or through the proton beam therapy itself and made its way down the spinal column and then nestled right at the bottom, below the Lumbar & Sacral vertebrae. Another Doc says it could be something different and more aggressive, as it's now began to spread. It will begin to cause issues with her ability to walk and maybe go to the toilet. also tremendous back pain.
The possibility of this makes us want to vomit violently, combined with the continuous adrenaline rush when we spare any real thought to it. Regardless of this, we have not told Sophia anything.
We believe she is too young and any added stresses will begin to wear away at Sophia's immune system.
We want to keep up therapies/protocols expertly set out, whilst keeping the lady smiling throughout. And of course, any new treatment/protocol we have not yet explored... We are convinced there are others out there!
As mentioned above, we researched extensively what to do for the best. To regain total physical and mental optimisation for Sophia.
Mum and Dad have made it their SOLE mission to see Sophia through her childhood and one day to perhaps meet her Prince Charming - who she wants to meet now, but Dad is not very keen!
Sophia has also been attending Bio-Resonance therapy fortnightly in York. We know this helps purely because Sophia was sick every SINGLE morning for most of the second half of the Proton Beam Therapy and EVERY DAY since Germany right up until the end of April, which is when we had our first appointment.
After her first session (and we cannot stress this enough and are not exaggerating in any way whatsoever), Sophia was not sick for another day. She said she felt ‘a little’ sick on a morning but would have some breakfast and then be fine. Then nothing; it was a minor miracle.
As we know cancer to be a mitochondrial issue within the cell. The Resonance she receives are Schumann waves, and other specific, set programs that help the electrons around her cells spin correctly and not in reverse like many of us (who are not ‘harmonised’) will experience.
This is the equivalent of walking barefoot daily for many hours.
It’s not an exact science, but it’s the best analogy we can give right now! We just know it works for Sophia, as the difference in her BEFORE & AFTER is nothing short of remarkable. We continue to research more on this.
So ongoing, our plan after hundreds, hundreds and many more hundreds of hours of planning in and around the new arrival, is the following:
1.) High Dose Vitamin C (Intravenously, monthly - ongoing)
2.) Weekly Bio-Resonance at the Centre in York.
3.) Dendritic Cell Therapy in Spain, Holland or UK after Spring 2022. We were researching this whilst @ the apartment in Germany, when Sophia was in for her daily sessions. We know this is NOT the Holy Grail by any means with 'alternate' therapies. However, it is something we will need Sophia's immune system to be optimal for, if we choose this. It can vary from tumour to tumour, so we continue to assess the data for now and then decide later in 2022.
One last thing, an infrared sauna on the cards, one that mum can sit in with Sophia. This will only be for a minimal amount of time, just 4-5 minutes 3x weekly, on the Doctors instructions.
There are other things, but we are in the early stages of research.
I hope this goes some way in explaining our situation.
I have attached a video for those of you who want to hear dad ramble on for 5-10 minutes. It's a summary of all we have done, so far, some extra bits and what we plan for in the future.
We want to thank everybody who can contribute to Sophia’s destiny in any small way possible. It all helps, every single penny!!!
This is the plan we have set out. The total amount we are looking to raise covers a lot (not the whole amount by any stretch) over the coming 2-3 years. We believe we get Sophia through this period, and we give her the best possible chance. However, we have to keep up with the protocols and be consistent, whilst maintaining as 'normal' life as possible.
There isn't any doubt about it, we will NOT ever give up on our little lady, and every ounce of our knowledge, research and determination will be the contributing factor to Sophia's long term success and we KNOW this! Nothing else is an option. It's scary as hell, but it's going to be one heck of a journey getting to where we want to be.
God Bless every one of you for taking the time - and even if you can't donate, please pass your POSITIVE thoughts and prayers our way. It ALL HELPS!
We do not want any negativity in Sophia's world, she has her days, of course, but overall it's positivity ALL.THE.WAY!:-)
A final note on Sophia's logic:
After finding a spider in the downstairs loo some weeks ago, daddy was forced (by Mum) to throw it outside in the garden. Daddy closed the door, and back inside was greeted with a monumental breakdown because ‘the spider will not now be able to find his family and he might freeze to death outside’. Sophia was at the window melting down and demanding I go out and find the spider to bring him back inside for the night so he can find them, just so long as he doesn’t go in the toilet, where she sits, lol.
This happens a lot, with all insects, ladybirds & spiders in particular. The girl is beyond sentient and a genuine soul. I’m so proud to call her my daughter as she has made a woman out of Mum and hopefully a decent bloke out of Dad. The thought of living in this world without this nut case by our side is not an option - it’s just not!
All our Love...
Mum, Dad, Sophia and new baby Dilly x
P.S. We are totally open to anyone who wishes to offer advice, well being updates or ask in more detail about her diagnosis.
Fundraising team: Fundraising team (2)
Jordan Main-Thorpe
Organizer
England
Mel Brown
Team member