Alfie’s Wish
Last November our Alfie was diagnosed with a rare brain tumour called ependymoma, at the young age of 7 I thought this was something that would never happen to our little man! It genuinely turned our lives upside down!
Over the last 10 months Alfie has been through the most unimaginable things, but throughout he has been an absolute superhero and has fought the biggest fight!
We pulled together to get through day by day and keep him going! Alfie has never once whinged or moaned about anything he has been put through, or questioned why this has happened to him (like we have so many times) he has just got on with it! I once asked him what he wanted when he was finished his treatment he said, his hair to grow back blonde and curly!! he also asked if he could go to Disney with the family and swim with dolphins.
People have often asked how they can help, usually the response is “aww that’s so kind but it’s ok”, but now we’re almost at the end of Alfie’s treatment and given his rare tumour and the risk of it’s return we need your help more than ever! We are trying to raise the funds to get Alfie his wish as soon as possible! So if you can help at all, even just a little bit, I know it would make a massive difference in this little boys life!
Read more below to understand Alfie’s journey and everything he’s fought through since November.
Alfie started with vomiting every morning in September 2020 , after several phone calls to the gp and anti sickness medicines, he was referred to a paediatrician who diagnosed Alfie with anxiety. We battled on and the vomiting got worse where Alfie couldn’t transition from one room to another without vomiting and meal times became a massive fear for Alfie due to the vomiting. We continued to call the GP which became daily until 9 weeks into the vomiting we were referred to our local hospital for bloods. On visiting we were seen by a nurse who had seen us previously and she asked that Alfie was seen by a GP , which was refused. Alfie deteriorated massively in the following 24 hours to which we took him to accident and emergency who carried out a neurological examination. The following day Alfie was admitted to james cook hospital for investigation , around 3.15pm Alfie collapsed and became unresponsive for what seemed a lifetime. When Alfie came round he was taken for an MRI scan. After an 1hr40mins scan we went back up to the ward.
About 45 mins later a doctor , accompanied by a sonographer and a nurse came and asked mum to join them in the parents room , it was then the news was broken that they had discovered that Alfie had a tumour on the back of his brain which was a substantial size causing blockages and they had arranged for alfie to be transferred straight to the Great north children’s hospital via emergency ambulance and an oncologist would be waiting and had already looked at Alfie’s scan.
Alfie was transferred very quickly in an ambulance up to newcastle into the accident and emergency department, were the oncologist and neurosurgeons were waiting.
Alfie was to undergo emergency surgery to remove the tumour from his brain.
The following morning Alfie was taken down to surgery for a procedure called a craniotomy , this involved opening the back of Alfie’s skull to remove the tumour .
Alfie underwent 10.5 hours of surgery before recovering with mum and Nannie sue by his side .
Alfie then spent 36hours in paediatric intensive care unit , with a brain drain and lots of sedation to keep him comfortable . Alfie was monitored very closely by the kindest nurses before being transferred back down to the children’s neurological ward.
Alfie was cared for by the best team of nurses who he made the bestest of friends with , and even achieved the nickname of kick off Kev!
Alfie was given lots of steroids and pain relief following his surgery. The neurosurgeon came to inform mum and Nannie that the surgery had been a success and he was confident that he’d managed to remove all of the tumour which had been sent off to the laboratory for a diagnosis.
It was a long 5 days before the oncologist had a meeting with mum and Nannie to disclose the devastating news that Alfie’s tumour was a fast growing cancerous tumour known as an ependymoma.
Alfie would need both radiotherapy and chemotherapy to treat the cancer. Alfie’s tumour would need to be treated with Proton beam radiation and that would be offered in Essen, Germany or Manchester.
Alfie was discharged from hospital home 16 days after his operation to await news of where his treatment was to take place from the proton beam panel.
As a family we received the news that Alfie had been accepted for proton beam treatment but would have to go to Germany and this meant Christmas without his brothers.
However this quickly changed due to Covid restrictions which meant Alfie’s oncologist consultant had to appeal for a place at Manchester.
After having christmas the weekend before to make sure Alfie didn’t miss Christmas with his brothers , Alfie’s consultant rang to say Alfie had a place in Manchester to undergo the proton beam radiotherapy.
Alfie started planning on the 3rd January and was super brave doing all the planning scans and practise runs awake. It was on the planning scan that they discovered more tumour so Alfie went back to newcastle to undergo yet another brain surgery -craniotomy . Alfie spent another 24 hrs in paediatric intensive care post operation before returning to the ward for another lengthy hospital stay.
When recovered Alfie returned to Manchester and it was decided for anaesthetic to be used for Alfie to undergo the 33 treatments of proton beam radiotherapy which began early March after recovery from his operation.
Alfie was super brave and even managed to put himself to sleep, pushing in the anaesthetic to send him off to sleep for his treatment .
At treatment 31 Alfie became unwell very quickly and was taken into the Manchester children’s hospital for treatment of an infection in his Hickman line , mum and dad took turns between hospital and the hotel with siblings.
Alfie finished his proton beam radiotherapy on the 13th April 2021.
On the 7th May Alfie began his 16 weeks of chemotherapy.
Alfie took everything in his stride and smashed his first round before becoming unwell around 15 days later where he was admitted to hospital with an infection in his Hickman line and lots of sickness/ diahorea and tiredness … Alfie spent 16 days as an impatient before he was able to come home to see his brothers. Covid restrictions meant Alfie wasn’t allowed visitors.
Alfie then had his next round which he again took everything in his stride and smashed it , usually dictating to the nurses how and what they could and couldn’t do to him.
During chemo, Alfie found it hard to get around in the early days due to his hips/knees/ankles and needed to use his racing red wheelchair which again he took to like a duck to water.
Alfie began to lose his hair something he’d talked about from beginning radiotherapy . Again he amazed everyone around him and didn’t bat an eyelid just carried on being his usually cheeky self.
Alfie had another couple of lengthy hospital stays but inbetween treatments managed to have some fun with his brothers and get over to see grandparents and family.
Alfie lost a substantial amount of weight from starting and during the chemotherapy treatment meaning he was fitted with a nasal gastric tube to feed him, Alfie found this very distressing and even more so that due to his sickness from the chemotherapy has had to have 14 fitted so far.
Alfie had a septic shower seizure when beginning his fourth round of chemo due to another line infection and was taken down to have the line removed on the emergency list .
Alfie then had to endure yet another anaesthetic to have a new double Hickman line fitted to finish his chemotherapy. Again Alfie just smiled and continued to soldier on.
Alfie has had an MRI scan which is clear during treatment, although a test known as a genome testing on Alfie’s tumour found an abnormal chromosome which can indicate the tumour is more likely to recur.
Alfie is due to finish chemotherapy this month and has done nothing but ask when his line can be removed so he can go to Disney and swim with dolphins …. Something he’s talked about from diagnosis , ‘When I’m better I’m going to Disney ‘ he makes sure he lets everyone and anyone know.