On 1st February 2015, Alfie Butler (our son) was diagnosed with a Level 3 Ependymoma malignant brain tumour, he was just 8 months old. As a family we went from normal life one day with Alfie having an ear infection into a world that no parent wants to live in, a life 'where your baby has cancer'.
Alfie was rushed into intensive care at Southampton General hospital on 1st February 2015 as shortly after we arrived he had a CT scan and we were told the devastating news he had a life threatening brain tumour.
He had surgery on 3rd February 2015 to remove all of his tumour, this was the most amazing news considering what we had been prepared for, but this wasn't the only hurdle to overcome. During surgery Alfie's nerves were heavily impacted and as a consequence his eyesight, right hand side of his body and his swallow were affected. He also had numerous chest infections for weeks, issues with pressure in his brain, stitches redone multiple times and eventually had further surgery to put a VP shunt in his head to drain the fluid and prevent pressure. The shunt itself had several revisions and when it eventually starting working, we started to see Alfie improve little by little.
A month after surgery Alfie started his chemotherapy treatment which consisted of treatment every 2 weeks for a year. This would then be followed by some form of radiotherapy or proton beam therapy.
Alfie was very sick on the chemo which wasn't helped by the fact that he couldn't cough, gag, or swallow for a long time and so part of his care was to be suctioned all day to manage his airway/secretions along with many other respiratory issues that included having regular oxygen.
Alfie spent his 1st birthday in hospital having chemo (May 2015).
After living at the hospital with Alfie & Macdonald House as a family for 5 months solid, we were finally allowed to take our baby home in between chemo treatment every other week.
Alfie began to get stronger gradually and despite being told by a consultant early on he would never smile again Alfie started to prove everyone wrong and he smiled 21 days after his initial surgery. After this he has continued to smile everyday regardless of what is thrown at him.
All seemed to be going well as he was getting so strong and looked great, he had even learnt to say mummy and crawl again 7 months post surgery and we were convinced he was winning the fight!
Unfortunately in October 2015 on his next routine MRI this showed the tumour had come back quickly and aggressively and chemotherapy was stopped immediately and discussions of palitive care took place.
This was heart breaking news as we had spent the last 10 months rebuilding him back up so the thought of going through it all again seemed hard to deal with.
Alfie had further debulking surgery on 20th November 2015 and they managed to achieve Gross Total Resection (GTR), remove it fully.
However this was not the end. As chemo didn't work the first time the only option to destroy the underlying cancer cells was for Proton Beam therapy in the USA (a form of radiotherapy which stops at cancer cells so is less damaging for a child his age and location of the tumor).
We flew out to Jacksonville, Florida USA December 2014 - February 2016 for 9 weeks for Proton treatment as this is currently not available in the UK. During this time Alfie had 30 rounds of Proton beam under a general anesthetic everyday.
In May 2016 Alfie got the amazing news of having his first clear MRI scan with Gross Total Resection (GTR) and he is continuing to do well.
Alfie will now have an MRI's every 3 months for the foreseeable future as his type of brain tumour has a high risk of returning.
Since having proton treatment Alfie is now deaf in his right ear and he has an ongoing problem with his right eye which restricts his vision. He has a set of wheels to help him walk and is now increasing his speech Sounds.
Since Alfie was diagnosed not a day has gone by where we have left his side, this obviously has had an impact on us as a family, emotionally, dynamically and also financially due to extended long periods of absence from work.
As yet we don't know what Alfie will require long term any donations are going towards buying anything Alfie needs to progress his development and for his future needs.
We would like to thank you for your support, should you wish to follow Alfie's story, go via Facebook: https://www.facebook.com/supportingalfie/
Thank you for supporting Alfie
Charlotte & James (Alfie's Mummy and Daddy), Harry & Alfie xx