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Charlie's Story

Charlie and his family visited the Lodge from April 10th.

"Charlie was always an energetic and sporty boy who loved playing football at a high level. He was physically fit, had stamina and read the game well.
When he started getting migraines and needing more sleep in aug 2021, Mum took him to Doctor who recommended beta blockers which did seem to help ease the headaches but was not a long lasting solution. Charlie also had his eyes tested, diet monitored and amount of x box / phone time to make sure these were not a factor. The Doctor just seemed happy to leave him on them !

Then a few months late in October, Charlie’s knees and hips started aching so once again the Doctor was visited and soon we had an appointment with hospital Orthotics and Orthopaedic teams One factor noticed was Charlie’s left leg was slightly shorter than the right (10mm) so a shoe insert was given and told to be worn for 6 months. The right leg was hurting slightly more so we asked for mri scans of both legs at Xmas - to our dismay, only the right leg was scanned!!

We got through Xmas and Charlie went back to school and beginning of feb, started complaining of bad knee pain in his left leg now. No results had come back to the Doctor of the right knee scan so I made a call to the hospital - all clear. I then demanded an urgent scan of the left knee but was told nothing was wrong and it was just growth and too much exercise and sport. So we cut the sport out for a month to no avail and the pain increased and there was knee cap swelling - 8/10 pain and extreme tiredness.

Charlie went to a physio who claimed both legs were the same length and to remove the shoe insert. Also telling him to keep playing football so the next day Charlie did go to football and ended up with an injury in the left leg!!!!

By this stage mum’s intuition suggested something more serious so she I took Charlie to the Doctor again and also rang the Orthopaedic doctors secretary and demanded a left knee MRI ASAP!!!

Sunday 22 April was the MRI date !!

In the meantime for the next 6 weeks Charlie got nose bleeds, was in extreme pain 9/10 pain and he was unable to do any pain and a limp was obvious too when he was walking.

The MRI results came back the next day and the worst was confirmed - there was definitely a serious issue with Charlie’s left knee cap bone marrow and it all indicated Leukemia or bone cancer.

Within a week, Charlie had had a biopsy and blood tests and high grade osteosarcoma was diagnosed.

Everything happened so quickly and we were finding out the extent of the treatment - 6 weeks of MAP chemo treatments at UCLH before major limb salvage surgery to remove part of the femur bone and kneecap and then another 12 chemo weeks after the surgery at Stanmore.

Charlie had to be in a wheelchair for over 6 months which was awful to see considering how athletic he was. No weight bearing at all allowed!!

After surgery 23 august 2022, charlie acted with tremendous strength and determination and even stopped taking the pain medication days before advised!!! Charlie got out of stanmore on day 10 of the operation and did as much physio as he could beat whilst once again restarting the brutal MAP chemo process.

Charlie really suffered with all the horrible side effects from mucositis - blistered lips, mouth and throat were some of the worst the medics had seen so he got given extra strong medication to try and help. It was really all about trial and error along the 9 months of chemo and Charlie astounded us all with his resilience to the physio and continuing to push himself to eat even when his mouth was all blistered to try and avoid being hospitalised.

Charlie was able to walk minus crutches by mid November and proved to everybody how determined he was. Then it was getting through the last rough 3 months of chemo.

Charlie finally finished chemo on 18 feb and had the pic line taken out. Once again, the boy bravely sat watching the nurse remove the line and wanting to take it home for his memory box.

Charlie still has weekly Mifamurtide immunotherapy at UCLH until mid June 2023. He also needs 3 monthly scans in his leg and chest going forward.

Charlie is now living his best life once again. He enjoys riding his bike, playing table tennis, walking up the fields with the dogs and weekly swimming. He is now preparing to go back to school after Easter on a part time basis.

We thank the Ben Saunders foundation so so much for the privilege to have a well deserved break in Ben’s Retreat this week and cannot wait to explore the Cotswold xx"

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