Completing my bucket list
Donation protected
Hello, I'm Katie and I am 28, a daughter, a wife and a mummy to our beautiful 7 year old daughter. Life couldn't be better!
My story begins in October 2014 where I had a tonic clonic seizure at work and I was lucky a work colleague was there when it happened. I was rushed into hospital because it was my first seizure and also the back of my head was so swollen from my head banging during the seizure.
I had CT scans, blood tests and ECG scans and doctors couldn't find anything wrong that day, so it was stress that caused the seizure. I then had a MRI appointment the following week, where neurologists found a abnormality, they couldn't say for definite what it was until further testing and scans were done.
March 2015, I was diagnosed with a benign brain tumour but it was not safe to do a biopsy at that stage, so the doctors advised me to do the "wait and watch" scheme but I had 3 monthly MRI's to see how things were doing, as the tumour was stable the doctors decided to do yearly MRI's.
My yearly MRI arrived and the radiologists and neurologists were sad to say the tumour had grown and insisted they do a biopsy as the area is safe to proceed. I agreed because I wanted to know what name and grade it was. Being a young mum, life flashed before my eyes.
November 2016 I had a biopsy and has left me with left sided weakness in my arm and left hand, constant pain in my left side, focal partial seizures, anxiety and a tad of depression (from the seizures). It was a hard pill to swallow listening to the doctors of my diagnosis. My diagnosis: Grade 2 diffuse astrocytoma right frontoparietal region IDH1 mutant. After some research IDH1 was the best outcome as that is responsive to radiotherapy, therefore, I had 6 weeks of radiotherapy which was completed in March 2017.
I had an MRI February 2019 and things were stable. Around May/June time, my seizures increased generalised, partial and in my sleep. I had several cluster seizures near enough every weekend so I knew something was wrong. My MRI in November 2019 showed the tumour has filled the biopsy space and spread itself, so chemotherapy had to start.
My chemotherapy started in January 2020 and I quit in July 2020 after 4 rounds out of 6 rounds. The chemotherapy was very harsh and had new symptoms everyday that even the strongest pain medication couldn't help. In May 2020, I had another MRI and thankfully the tumour shrunk. My most recent MRI showed a bit of shrinkage but radio logically it is a Grade 3. Unfortunately the prognosis is 18 months - a couple of years.
After talking to my husband, I have made a bucket list on what we can complete as a family and to make memories for our little girl. Our bucket list includes days out to Theme Parks, view the beautiful Northern Lights in Iceland, Route 66 in Scotland. Just to name a few. Anything that is raised/left over when I am gone, would go towards our mortgage and/or funeral costs.
Thank you for your time in reading my story.
Every trip we make, I will update on here.
With love,
The Warner Family x
My story begins in October 2014 where I had a tonic clonic seizure at work and I was lucky a work colleague was there when it happened. I was rushed into hospital because it was my first seizure and also the back of my head was so swollen from my head banging during the seizure.
I had CT scans, blood tests and ECG scans and doctors couldn't find anything wrong that day, so it was stress that caused the seizure. I then had a MRI appointment the following week, where neurologists found a abnormality, they couldn't say for definite what it was until further testing and scans were done.
March 2015, I was diagnosed with a benign brain tumour but it was not safe to do a biopsy at that stage, so the doctors advised me to do the "wait and watch" scheme but I had 3 monthly MRI's to see how things were doing, as the tumour was stable the doctors decided to do yearly MRI's.
My yearly MRI arrived and the radiologists and neurologists were sad to say the tumour had grown and insisted they do a biopsy as the area is safe to proceed. I agreed because I wanted to know what name and grade it was. Being a young mum, life flashed before my eyes.
November 2016 I had a biopsy and has left me with left sided weakness in my arm and left hand, constant pain in my left side, focal partial seizures, anxiety and a tad of depression (from the seizures). It was a hard pill to swallow listening to the doctors of my diagnosis. My diagnosis: Grade 2 diffuse astrocytoma right frontoparietal region IDH1 mutant. After some research IDH1 was the best outcome as that is responsive to radiotherapy, therefore, I had 6 weeks of radiotherapy which was completed in March 2017.
I had an MRI February 2019 and things were stable. Around May/June time, my seizures increased generalised, partial and in my sleep. I had several cluster seizures near enough every weekend so I knew something was wrong. My MRI in November 2019 showed the tumour has filled the biopsy space and spread itself, so chemotherapy had to start.
My chemotherapy started in January 2020 and I quit in July 2020 after 4 rounds out of 6 rounds. The chemotherapy was very harsh and had new symptoms everyday that even the strongest pain medication couldn't help. In May 2020, I had another MRI and thankfully the tumour shrunk. My most recent MRI showed a bit of shrinkage but radio logically it is a Grade 3. Unfortunately the prognosis is 18 months - a couple of years.
After talking to my husband, I have made a bucket list on what we can complete as a family and to make memories for our little girl. Our bucket list includes days out to Theme Parks, view the beautiful Northern Lights in Iceland, Route 66 in Scotland. Just to name a few. Anything that is raised/left over when I am gone, would go towards our mortgage and/or funeral costs.
Thank you for your time in reading my story.
Every trip we make, I will update on here.
With love,
The Warner Family x
Organizer
Katie Warner
Organizer
