Wednesday 9th January 2019
I leave work unexpectedly as I receive a phone call asking if we can into clinic today to review Fergus’s latest MRI scan results.
When I return home in a state of shock, I draft the following email, which I will send in the morning.
Updating the girls is heartbreak itself. There are no words.
Hello Team,
I hope you are all well this morning.
I’m sorry to tell you that I had some bad news yesterday about Fergus’s brain tumour.
In October, following his surgery, the diagnosis was given as a Grade 2 Diffuse Astrocytoma.
However, the latest scan is showing that the tumour is growing & is behaving like a Grade 3 Anaplastic Astrocytoma.
The difference is very significant in terms of the prognosis & how long Fergus is likely to live.
Grade 2 Astrocytomas grow slowly. Eventually they do transform to higher grade, but this can take many years (5-15 typically).
Grade 3 Astrocytomas are aggressive, invasive tumours. They become, in time, grade 4 Astrocytomas which get a special name all of their own – Glioblastoma, known as the ‘big bad wolf’ in the brain tumour world. This is not good news.
We don’t know for sure yet what’s going on, but the experts are suggesting that the initial diagnosis may have been incorrect & they are concerned.
The preferred route is to go back in & remove the area of the tumour that looks high grade on the scans. Then it can be examined & a definitive answer can be given about the grade of the tumour tissue. However, we first need to establish if this is possible without affecting Fergus’s quality of life.
A scan next week (most likely Thursday) will reveal which functions are likely to be affected, if any, by removal of this area. Then we can make a decision as to if surgery is viable. We hope that it is as this is the best course of action.
Fergus has been provisionally booked in for his second craniotomy (brain surgery to remove as much tumour as possible) for 21st January.
If surgery is not viable, he will need to have radiotherapy to try to slow down the growth of the tumour.
I’ve attached what I think is the best info leaflet if you would like to read any more on the subject.
I’m sharing all of this because I think it will be helpful for me if the people around me understand what is going on in my world. I am happy for you to forward this to anyone at all – it’s not a secret & actually the more people know, the better equipped they will be to support me when I’m in work.
For today, I am just going to focus on spending some time with Fergus. I can’t make any plans or predictions about if I’ll be working or not working & when. I love my job & want to be back in work, but the news is too raw for me to be able to focus on work right now.
Triplets, Travels & Now A Tumour 