Archie Lee

Update - June 2024

Hi all, I am Archie’s Mum, Gemma. I thought I would give an update on Archie. We are now 10 months in, Archie had another operation in March this year as his tumour had started to grow back, it was a success as we have had his latest MRI results back and they are clear and no new sign of any regrowth. Which is fantastic news. Since August 2023 we have spent a total of 21 weeks in hospital, which has been hard at times, especially for my other son Alfie who moves in with my parents. For this reason, and Archie’s numerous appointments for Oncology, Orthopaedic, Neurology and Physio to name a few, I have been unable to return to work. I have been asked a few times if this page is still running, so I thought I would post an update. I am eternally grateful for all the support I have received through this page, it has helped immensely with the cost of fuel, Archie’s toiletries (As he now incontinent) and to be able to purchase items that Archie specifically needs that aren’t funded. Archie is now in a wheelchair and has partial paralysis of the lower limbs, he can crawl but unable to stand or walk unaided. Obviously this was all a huge shock at the time but we are slowly getting used to our new normal and learning how to co-ordinate life with a disabled child. He is back at nursery part time and is adapting to life in a wheelchair. If you’ve made it this far, Thank you for reading, if you want to follow his journey I post updates on a Facebook page called Archie’s Fight.

Hello all, my name is Simon. I’m trying to raise some money to help my sister and my nephew. They’ve had a terrible year. He’s been in so much pain, not being able to sleep properly complaining of stomach pains and struggling with going to the toilet. My sister has been pushing and pushing trying to get something sorted and finally he got an MRI scan on Thursday. They got a call with the results on Friday saying they must get to Bristol Children’s Hospital as soon as possible, little Archie had a massive tumour on his spine and he needs to see the specialist. Obviously being in Bristol she doesn’t have anything. All of our family are spread out from Cornwall to Exeter and in Basingstoke. I though setting up this page may help her out somewhat as she will be in Bristol for the next 3 weeks at least, unable to work. It might lessen an already traumatic time for her.

This is her Facebook update from yesterday to give you more of an idea of what they are going through…..

“On Friday, my whole world came crashing down. We were on our way to my sisters for the weekend. Alfie and Archie were so excited to visit Peppa Pig World with family when I received a phone call with results from Archie’s MRI scan the previous day. We were to divert immediately to Bristol Children’s Hospital as they had found a tumour on his spine which he needs an operation for, on Monday. After speaking to the neurosurgeon there is a long way to recovery with some potentially huge complications. I would like to thank all of my wonderful family for all their support. Please can you pray my boy will get through this. I am going to be living at Bristol Children’s hospital for the foreseeable. Alfie has been brilliant and so understanding. Archie has been so resilient and taken it all in his stride, meeting lots of Drs and Nurses, having medication pumped in to his arm 4 times a day to get him strong for the operation.

I’m not posting this for sympathy I am posting this to say you know your child better than anyone so if you think your child is unwell, please keep pushing. This has taken a year for them to find after various tests and numerous appointments and they believe his tumour has been growing for a year or more. I knew back in August last year my little boy wasn’t right but wasn’t listened to. The Paediatric Consultant at Derriford and The staff here have been amazing and supportive so

update from 6/9/23

***Firstly I would like to say I am completely overwhelmed with everyone’s kindness. I don’t think there are enough words to show my gratitude.

Archie’s operation went ahead as planned and he was away from me for 18 hours in total, they think they have managed to remove the whole tumour but will repeat an MRI in 6-8 weeks to confirm. It has come back as benign which is fantastic news but he still has a very very long way to recovery. His legs aren’t working so he having very intensive physio therapy and he is unable to empty his bladder so has a catheter fitted currently. Drs have said it will be months until we’re anywhere near ready to come home and when we do come home it is likely he will be in a wheelchair, whether or not that will be permanently, we don’t know. They have also mentioned us going to Stoke Mandeville hospital which is near Oxford and even further away from home and our wonderful family and friends. But the spinal rehabilitation centre there is one of the best in the world. I have made a Facebook page called ‘Archie’s Fight’ where I post updates on there if you would like to follow his journey. Thank you again from the bottom of my heart. Xx