*******UPDATE JULY 2018********

Hi everyone,

I am so sorry for not posting any updates recently but have been trying to process the latest news from my medical team at Kings. It has come as such a shock and I have been struggling to get my head around what this news means for me and my little boy, now and in the future.

I was unexpectedly called back to King’s Hospital a few weeks ago. They have reviewed my case and there are conflicting opinions between the oncology team and neurosurgery team with the current thinking that I don’t have the Proton Beam Therapy at this time as they want to monitor me very closely and take further advice.

This is because I am apparently the only person that they have seen with this exact set of symptoms/anatomy and they don’t actually know how to treat it or how it will develop. A lead neurosurgeon is taking my case to an international convention in America in August for discussion with other leading specialists in the field to gather more information on any other known cases and gather opinion on possible treatment options.

They have no idea how any form of radiation would react with the hole in my skull and due to the position of the hole and its proximity to my brain stem and optic nerves etc. the risks are unknown.

They have decided at this time to monitor me closely and offer me pain management until they can agree on a treatment plan and decide if Proton Beam therapy is still an option.

As you can imagine this has been a lot to take on and it has been an emotional few weeks for me and my family, on one hand the possibility of not having the invasive radiation treatment is a relief but on the other hand, finding a way to deal with this new uncertainty has taken it’s toll on my emotional wellbeing.

I wanted to write to update you all and to thank each and every one of you for all of your kindness and overwhelming generosity with helping me to raise this money.

I won't know until after the conference in August what they will propose for treatment.

It is clear that mine and Isaac's future will continue to be uncertain regardless of the decision around my treatment so for now I will wait to hear from the specialists and update you all as soon as I know what’s happening.

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My name is Sarah and I have the most amazing, beautiful son. His name is Isaac and he is my entire world. I had always wanted a child but sadly circumstances in my life did not work out that way, so 3 yrs ago I decided I was strong enough to do this alone and with the wonders of IVF, in November 2015 my dream came true.

I held him in my arms and vowed there and then that I would always be there for him, love him, support him, help him and guide him through this journey we call life. From that moment on, I was no longer a “me“, WE were an “us”, a team for life.

I never for one second would have believed that less than 2yrs later I would be facing the prospect of having to break my vow - “that I’d always be there for him”.

The first 18 months of his life were the happiest days, watching him grow and develop his cheeky personality made me, for the first time in my life truly happy. We were an indestructible team and we spent all of our time together, we enjoyed normal family life, drives to the seaside, paddles in the sea, walks around parks and trips to the farm, as Isaac adores all animals, tractors and diggers. My life, for the first time seemed to be getting better and for once I was truly at peace and happy.

Then, just over a year ago I started developing severe headaches, vomiting, vertigo and blurred vision. This went on for several months until another symptom developed, I started to leak a clear fluid out of my right nostril. Over the next few months this increased to a few drips every now and then, to pouring out of my nose whenever I moved. By this point I was pretty much bedbound due to debilitating headaches and vomiting.

After months of tests and consultations, doctor’s finally discovered I was leaking brain fluid, better known as a CSF (cerebrospinal fluid) Leak. An MRI scan and a CT scan had revealed there was a “mass” in my brain. This “mass”, as they called it, had eaten into the base of my skull, which had caused the lining of my brain to be pulled down into the hole and tear, creating the leak.

In March, just before my 40th birthday, I had the surgery to repair the CSF leak and while they were in there they took a biopsy of the “mass”. But 24 hours after surgery, I developed meningitis which prolonged my hospital stay and my separation from Isaac, who is just too young to understand what is happening.

Having never left Isaac for more than a few hours, we were apart for 3 weeks. This was extremely difficult for me and even more so for Isaac, he became withdrawn, anxious, wouldn‘t eat and it has also affected his sleep. He has developed a high level of separation anxiety and I know in his little mind he worries that if he leaves my side again I will disappear.

Once I was discharged, I believed we were over the worst and I could begin to gain strength and live my life again with Isaac.

But a few weeks ago I was called back to Kings College Hospital in London to what I naively thought was a follow-up appointment. It was there where I was met by an Oncologist who broke the news to me that I have a very rare type of brain tumour and even rarer type of bone cancer, affecting less than 1 in a milllion people each year and without specialist knowledge this could have easily been missed.

This type of cancer is called a Chordoma - mine is a clival chordoma and the oncologist told me that I have actually had it since birth. The chordoma has eaten into the base of my skull and is situated near my brain stem, optic nerves and many other vital areas. It is not curable but can hopefully be “managed” or at the very least “put to sleep” for a while with radiation therapy.

Due to the location of the chordoma (tumour) it’s not possible to be surgically removed due to the associated risks. My consultant hopes that a revolutionary type of radiotherapy, called Proton Beam Therapy is the answer. At present there is nowhere in the UK that can help me, so I need to go to either Switzerland or the USA for almost 3 months, where I will have this treatment every (week)day for approx. 8 weeks.

Without this treatment, I will have to face the very real prospect I may never see my son grow up.

Mercifully the NHS has said they will fund flights and accommodation for me and my mum, who will be my carer during treatment. But this is where I need to swallow my pride and ask for help. I NEVER ever imagined I would find myself in the position.

❤️💙Thank you for taking the time to read my story💙❤️

If you feel you can help with any donation, no matter how much, Isaac and I would be so very grateful.

Here is a clickable link to the chordoma foundation website.

Chordoma Foundation