At the beginning of December 2021, Stanley was diagnosed with posterior Fossa group A Anaplastic Ependymoma. His journey had begun back in the September, with regular headaches sometimes accompanied with tummy ache. He was due an eye test and was prescribed glasses and deemed long sighted.
The headaches continued and Stanley’s symptoms worsened: severe headache and vomiting upon waking up, then severe tiredness, headaches and vomiting upon standing throughout the day, dizzy spells, wobbly on his feet and too poorly for school. The doctor diagnosed migraines and prescribed pizotifen as a preventative for migraines. The same pattern continued, back to GP (over the phone AGAIN) it’s just migraines double the dose and referred to paediatric team, again no change. We begged the GP to SEE our son and the videos I had of his absences and symptoms. Again nothing, but confirmed he had an appointment on 27/1/2022!!!!

On 8/12/21 both myself and husband agreed to take Stanley to A&E. The staff there were absolutely amazing and Listened, Looked, Assessed and watched the most precious, important video I have ever taken in my life. I had previously recorded him during an ‘episode’ as he would hold his head and scream out in pain as he was sick.

As soon as the consultant looked at Stanley’s migraine diary and the video, she ordered a CT scan and had him in the scanner within an hour, then a repeat with dye. I was called to a room and told they had found a tumour and most concerning a large amount of fluid on Stanley’s brain.

Stanley was blue-lighted to Great Ormond Street Hospital. The consultant was waiting, ready to talk about surgery to drain fluid off of his brain by inserting an EVD (external ventricular drain) and then a second operation the day after, which took 13 hours, to try to remove as much of the tumour as safe to do so, but they were not able to remove all of it.
Stanley had lost the hearing on his left side, had an NG feeding tube as he was at risk of aspirating (fluid and food going to lungs due to swallow nerves being affected) intense physio as he was weak on left side and unable to hold his head, he spent 3 days in HDU then was able to go into a side room with hourly monitoring, intense physio and input from dieticians and speech and language therapist.
There he would learn how to sit up, hold his head, walk, talk, write etc. On 15/12/21 we were told every parent’s worst nightmare, he had cancer, a rare (complicated) type, it was a grade lll Anaplastic Ependymoma.
When he came home on Christmas Eve he was still learning to do all these things and was still unable to swallow, eat and drink, his voice has never been the same and I long to hear ‘Stanley’ again (sometimes watching videos of him from the past is too heartbreaking 😢) we were told prior to surgery that he wouldn’t be the same again and there was a chance he never would be.

Following on from this he had MRI scans and then had his double lumen Hickman line inserted on 6/1/22 followed by chemo for 3 months, then 6 ½ weeks of Proton Beam (Mon to Fri) where we stayed away from home in order for him to receive the treatment he needed. This finished in May (19th).
On June 20th we were told a new tumour (metastatic growth) had been found on his spine 😢 heartbreaking for us all and that chances of cure were now low. He was taken off the trial, but treatment would continue.

Then chemo started again on 4th July, this time he would have a fourth chemo drug added (Cisplatin he was already on Vincristine etopiside and cyclophosphamide all of which come with their own problems) then in August we were told that there was another new growth in his brain 😢 we were just longing for good positive news, we did have good news as well though which was that the other two tumours he has were stable with no sign of growing, the consultant said she felt positive that the Cisplatin would control what was there and repeat MRI in October.

The plan forward IF all goes well and positive is more surgery on his spine followed by focal, cranial spinal radiotherapy and most likely more chemo. We should have been ringing that bell in the October, but that moment seems bleak.

Chemo finished on October 27th 2022 and Stanley had some time to recover. He fell very unwell during this time with a cold, he was grey in colour and his body was struggling.
By the end of November he had managed to get through the worst, so we had a couple of Christmas days out.

Christmas day was full of smiles and presents and he could actually eat Christmas dinner!
The fun was soon over in January 2023 when MRIs showed the spinal tumour had grown. No chemo and straight to surgery on 15th February 2023, 8 hours later we got our boy back and he spent 24 hrs in HDU, then on to his own room to continue recovery, he was such a brave boy and hardly had any pain relief.
It was then agreed he would have 6 weeks of Cranio spinal radiotherapy (whole brain and spine) with booster doses to

At this point we were made very aware that Stanley was terminal and the team were gravely concerned that their options were running out for treatment and they felt he can’t be cured. Absolutely devastating for all of us.
He had the Craniospinal Radiotherapy in April and.we finished on 2nd May 2023.
Stanley was monitored with MRI scans, in his first follow up scan late June they found another tumour in his brain. The national board decided they wanted another scan in August to determine whether it’s post radiotherapy changes OR a new growth. Stanley also wanted to just enjoy a summer as the previous summer was spent on chemotherapy.
He had his August scan and it showed there was a new tumour but it was stable. Stanley asked for more time as a family and we agreed to do the next scan in October as I was anxious to wait 3 months. Sadly October’s scan showed his tumour had more than doubled. We discussed a trial, an Ommaya reservoir (a device fitted into the brain so chemo can be delivered directly to his brain) and surgery..... We opted for surgery to remove the tumour (which has to be done for the best result) and the Ommaya Reservoir, although the trial shows strong evidence to treat 1q gain (chromosomal change in Stanley’s cancer, 1q gain indicates an aggressive type of cancer which is almost impossible to cure).

We all agreed on November 6th 2023 that his surgery would take place in January 2024 to remove the brain tumour and fit the Ommaya Reservoir, he would recover and start chemotherapy (Topotecan via Ommaya Reservoir and Etoposide orally)
Stanley and his sister were so pleased we could enjoy a proper Christmas period, make plans, attend events etc as Stanley is so well physically and we were all so excited to have some real Christmas quality time.
On 13th November that changed. They decided that now as his tumour is growing fast (as his does due to 1q gain) it is far too risky to wait and delay treatment (a group decison on the national board of highly trained and knowledgeable consultants) They wanted to do surgery late November/early December. They said he will be able to still enjoy Christmas? So we agreed to discuss with the surgeon, we needed to know risks, side effects, process etc to ensure if we went ahead in early December 2023 he would be home and recovered enough to actually enjoy Christmas and play.
We had that appointment on 20th November and agreed to early December at the latest. The side effects/long term affects could include balance problems, right sided weakness and changes in speech. There are others but risks are lower. Now we are just awaiting a date for surgery to go ahead.
Stanley was absolutely crushed that another Christmas is tainted by cancer, as well as his third birthday in a row. He will be 9 on 1st March and he will be on chemo then... So that’s his 7th, 8th and 9th birthday on treatment or recovering from surgery.

His Mum said, “His childhood has been stolen from him, his innocence, his dignity and quite possibly his future. I’m sorry he has had to endure all this, I’m sorry he got dealt the hand in life he did, I’m sorry I cannot take it all away... As his parents and big sister we are so pained to see him go through it all. But he is the strongest and most resilient little boy I know and I am so so proud.”