Sophia's Healing Journey!

So Where Do We Start With This Absolute Warrior?

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.

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 RVI 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’.

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 time.

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. Only that she hasxspme baddies inside her and they're very naughty and can make you really, really poorly.

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.

P.P.S. Some photos of Sophia through her journey:

Cannot bring myself to post any from immediately after the operation as its upsetting to even look at them, never mind post. We will post positive updates and snaps of the little rascal going through the various therapies; coming back stronger, thriving every day and enjoying life - that is now our main GOAL!

Finally home after her long hospital stay, with her best mate, Doo!

Morning of the Op. Mum reciting a prayer!

Finally out of the bed and ready to face the outside world, albeit for just 10 minutes or so.

Our angel having schumann therapy, helping battle the inflammation on the lumbar region!  I adore this Pic Xxx

Same as above, but dealing with the brain, as to where we found the first naughty lump!

UPDATE Xmas 2023!

Sophia has been experiencing a lot of pain. From flourishing in the summer amd absolutely back to her best. Smashing ballet and climbing! Then a tarting back swimming and wanting to take up gymnastics. However, a dew days before sophias ballet exam (genuinely top of her class and that is not an exaggeration) both Sophia and her friend were top two) she decided to climb into mums cabinet get out the full spectrum cbd and plough it to herself and her lil sister . This was not a dew drops but several vials.

LONG story short both girls ended up in hospital. Sophia in Durham and little sis in the RVI.

They were tested for all sorts. Sophia came around pretty quick, but delilah took another 24 hours or so. After 2 nights and 3 days stay, the top results came back and confirmed cannabis in the girls system. Bear in mind that this bottle is a few drops 2-3 × per day for adults. With the bottle being 'full spectrum' it means it has trace amounts of thc, as it's 'Whole Plant'. This helps mums migraines. All within legal UK limits. Just to note. However, over a third of a bottle, will sort of put you over the legal limit. Suffice to say. Sophia later explained she wanted to be a Nurse and 'look after' her lil sis, Delilah. Keep her 'healthy'. Mum had a migraine on this day amd grandpa was up from Wales, visiting. Dad was making lunch amd getting delilahs bottle ready for nap time while both girls were 'playing' in sophias room. So back to the hospital and once the results came back positive for thc, without ANY questions asked, both mum & dad were swiftly arrested, simultaneously in each hospital. Late on a Friday night. June 30th. Mum was with Sophia and dad with delilah in the RVI. We were told a social worker was coming to thr hospital to speak with us. This was before we knew the test results. Both girls at this point were fine and were just waiting to come home. Both were fine Friday morning (they were admitted Wed afternoon) but they wanted yo keep them in for observation. Fair enough on delilahs part, but Sophia was fine from the Thursday morning.

Instead of the social worker attending the hospital. We were taken in amd questioned. We had to leave the kids at the hospital and was kept in for 21 hours. We had our home raided by police, all supplements seized and locks changed. That's not the worst part. We then were NOT able to be with our girls, ALONE. Then social services and Foster Care came to the house (that we just gained access back to) and gave parental responsibility to grandma. Which was overseen by them. We could not stay the night in the home, either. We had to be monitored with the children. This went on for most of July. Pending investigation.

Then just at the start of summer holidays, the 'investigation' was over. Both mum and dad had to be drug tested amd further tests were done on the kids. It was officially over end of July. Allowed back home. Oh, but it took another 6 weeks to get all our supplements back. Much of which were ruined as it was not stored correctly. Ie Not refrigerated or kept under fluorescent light etc

It more than took its toll on Sophia. Not only did she miss out on her ballet exam on the Saturday morning (as mum and dad were being questioned), but she suffered night terrors and PTSD as she was left in dirham hospital until grandma picked her up a little later. Can you imagine how she felt???????????

Also, delilah was left behind by Dad and Auntie Lisa could not pick her up until 6pm the following evening!! That was 20 hours. Pretty much the whole time we were held in Durham jail for. Reason being, was that she had to be kept there until police finished searching the home. We still have no full explanation on this. We were told by the solicitor, just be thankful you got any of your possessions back. BTW they also kept our phones along with all the supplements and two of our debit cards inside the phone case cover.

We weren't allowed these back either, as they needed to be searched in case mum or dad (or maybe both) were 'dodgy dealers'.

The be brutal, Sophia never got back to the regime that she was on from the start of 2023. She began to not want the specific lin hew we would make for her and not want certain supplements either. Everything became difficult. The 'flow' was damaged. The energy in the house was HEAVY and took many, many weeks to return to some kind of normality. Until mid-sept where we headed to Cornwall and Sophia came alive. Full of it once more:)

She forgot all about what had gone on back home and that ZEST (which is what I bloody adore about her) was BACK!

After a week we arrived home. We also got a newfoundland puppy - Frankie. Sophia loves him and we have explained that Doo (her first doggy love) had to head on to rainbow Bridge. Again, that was a huge loss for her.

So add that to the summer saga, it was a lot to take on board for Sophia- who's already sensitive as it is.

Francie has filled a hole, but being back home brought back the summer memories. Francie is also a puppy (and a rather large one) so had been causing some chaos on the home, as much as the girls love him. The last part of the drama is that we had confirmed that uostsirscin our home was a spectacular amount of Mold. Aspergillus to be exact. We knew that Ochratoxin A was a problem as we had the tox (urine) tests done in Nov 2022. Also mycophenolic acid. This was due to the washing machine. That we eventually got rid of. So we were assured now that the old leaks, from when we moved in the end of 2019 were patched up and washing machine on the scrapheap, all was now well. However. Something did not sit right. Wr had further testing done and more mold was confirmed upstairs. But we did not know what type. Now we know. A score above 15 on each of the mold tests indicates you need to move out and remediate. Two were ND'S (NONE DETECTED) 1 was 18, then another was 33 and the last one was.... wait for it.... OVER 340!!!!! Long and short of it is, that this could be the root cause of it ALL.

So, no matter what we have been doing, if she has been going to sleep in a mouldy environment, there is nothing anyone can do, except get her out of there. We got out within 24 hours. We are renting somewhere, close by.

All the blooming things we have been doing could well have been very ineffective if it were to be the case of Mold toxicity.

A lot of pain this holiday period and its stopped her from really enjoying the time, as she was absolutely loving the build-up and of course looking forward to today's birthday for little sister. Little sis gets scared when Sophia gets bouts of pain.

Hoping more than cever is present. I do not know what it is, but it's present nonetheless!!!

We want to get a hydrogen machine for Sophia. Saturate that blood and dispose of this bloody mold

Then we want the rife/scalar. Both if there have done so much for her in the past.

God bless you all. Xx

Daddy Shaw

Ps More updates coming end of January.