So here goes:
My name is Sarah (Holt), married to my childhood sweetheart of 28 years! Steve. We both share 2 incredible children, Ava our daughter and Jenson the baby of our family.
When Ava was 8mths old I was unexpectedly diagnosed with a brain tumour in my cerebellum, following some unusual symptoms. I had a 9+ hour op followed by a gruelling recovery that included learning to walk again and building up some strength.
Our son was born 4 years later in 2013 and as a result I missed my annual MRI. Once Jenson had arrived safety the all important MRI was ordered, and never in our wildest dreams did we think we would be presented with the news ‘we’re so sorry but you have another brain tumour’.
My amazing Neurologist sent for some genetic tests in 2015 which confirmed I have VHL. Further tests carried out on my family members showed that I was the first within the family (De Novo).
From here both Ava and Jenson were tested and in 2016 we were devastated to find they both have VHL.
In 2019 Ava aged 10 at the time presented with some hearing loss. She was immediately scanned and sadly we learned that our girl had a brain tumour, this was right as Covid hit the world and almost everything stopped. In Aug 2020 Ava underwent her surgery which was a huge success 🙌🏼. However, she is now deaf in her right ear. This has never stopped Ava in excelling in everything she does, she’s incredibly brave and has adapted so well.
Over the following years, Ava, Jenson, and myself have undergone the relentless scans and the horrendous wait for those all important results. Sometimes the waiting is the worst part.
In March 2023 I underwent a partial nephrectomy (L) for kidney cancer, and later that same year we were yet again hit with the devastating news that Ava had 3 more brain tumours in her brain stem. Just 6mths later, summer of 2024, we found that I had Kidney cancer for the second time and in Nov 2024 I underwent An almost radical nephrectomy (R), with the worst recovery ever. However, as a team we have battled though one day at a time and continue to be supported by the best family and friends we could ever wish for.
As things are ever evolving with VHL it is vital that VHL warriors are looked after by the best teams, and we have certainly felt incredibly lucky to have the best group of oncologists, surgeons, nurses, and our walking angel our GP Dr Grant.
We have been hit with some horrendous times over the years and sadly this has continued into 2025 where Jenson has now been diagnosed with manifestations of VHL. We also all have tumours in our eyes, and this week I have been informed that I have another brain tumour in addition to finding out I have several tumours in my pancreas.
VHL is no joke that’s for sure, and I guess you never really know how healthy you are until you no longer have your health.
As always we will battle through one day at a time, one tumour at a time.
