“We first met Chris & Ursula when we were at Kings College Hospital London this is where Maisie was first diagnosed at the beginning of January 2021 during the second wave of COVID-19. Chris, Ursula and the whole team at Children with Cancer Fund (CWCF) have been honestly ‘earths angels’ ever since.
It all started when Maisie started having pains in her neck just after Christmas 2020. We had just presumed she had slept on it ‘funny’ (as sometimes we do), but a few weeks passed, & things got dramatically worse. At the time it was difficult to be seen in person at your GP (or anywhere really due to covid) but in the end we took Maisie to the Conquest Hospital and was told it was a “trapped nerve” so we returned home.
Things didn’t get any better… Actually they got dramatically worse! On the 30th January Maisie lost all sensation in her left side, she couldn’t even pick up a glass off the table. My husband, James, had to physically help her get out of bed or sit in a chair because of her being in so much pain. It was awful! We rushed her to A&E. They eventually decided to do an MRI scan and with that our worst fears were confirmed… Maisie had a huge mass in her neck that was pushing so hard on her spinal cord that they immediately put her in a neck brace and blue lighted us as an emergency to Kings College Hospital, Lion Ward, where we stayed for the next eight weeks.
After some time and a biopsy, Maisie was diagnosed with Osteoblastoma (a benign bone tumour) and in March 2021 she underwent a 15-hour surgery to remove the tumour. It was HELL! Maisie recovered amazingly and was back up walking the halls of the ward within 48 hours and back to her cheeky ‘fun loving’ self. The surgeons at Kings deemed the surgery a ‘great success’ and we were relieved to go back to normal life after the scariest event of our lives.
That only lasted for 6 months until her next review MRI…
The MRI showed that the tumour was back, and this time it was bigger and again pushing so hard on her spinal cord that we were told she was at huge risk of the tumour paralysing her completely!! The consultants said that the tumour appeared ‘different’ which meant yet another biopsy and genome testing was to be done on the tumour to see what we were dealing with this time. In this time, we were moved to the Royal Orthopaedic National Hospital – Stanmore. Because of the huge danger to the spinal cord, we needed to be within 20 minutes of a surgical theatre if Maisie were to lose anymore sensation. We stayed in Stanmore for nine weeks and became ‘regulars’ on the ward. Again, we were unable to have visitors or see my boys and husband due to covid restrictions. We were 3.5 hours away from home and at times felt very isolated and alone. The results eventually came back, and I honestly thought we had escaped from this hell we had lived in but then it got even worse when they told us that Maisie had a tumour they had NEVER seen the DNA of before. They decided to treat it as Osteosarcoma (aggressive primary bone cancer) as most of the markers were the same and that is when our world truly fell apart!!! We were absolutely devastated. We never would have dreamed that it would be cancer and its the same renowning phrase I’ve heard from all the parents I’ve met on this journey “this couldn’t be happening to us?!”
In December 2021, they decided to move us (AGAIN) to University College London Hospital (UCLH) to treat Maisie with eight months of chemotherapy. It was the hardest thing we have ever encountered. Extremely tough for Maisie and us as family to watch her go through. All whilst feeling so helpless. We had already been apart as a family for a nearly a year at this point and the finishing line seemed non existant. Chemotherapy was EXTREMELY hard, Maisie was very ill for a lot of it and it broke our hearts. Maisie remained as positive as she could, making friends wherever she went. She brought such light and such a happy vibe to the oncology ward she was on, and everyone there just fell in love with her (I mean, its pretty hard not to!!!!).
Maisie lost her hair, eyelashes, eyebrows and herself, at times, during the grueling treatment. I distinctly remember her turning to me in hospital and saying “I’ve lost all my girl” when talking about loosing all her hair to treatment. CWCF were there throughout, checking-in seeing how we were getting on and if there was anything they could do. Even just the chats alone really helped. This stopped us feeling so isolated, and talking to someone who just ‘got it’ helped beyond measure at that time.
After the 8 months of chemotherapy, Maisie endured a HUGE surgery at Stanmore in August 2022. It was planned as an 18 hour surgery (so an EXTREMELY long day for us as parents), but after 15 hours they called us to say that they had to pause due to Maisie’s body not coping very well. The surgeons went on to explain that removing the tumour was ‘like chiseling away at incredibly hard rock’, so Maisie was kept under sedation in ICU overnight, and they started again the next day. The surgery ended up being over 2.5 days before they woke her up. Maisie was her usual resistant and beautiful self, and made a miraculous recovery after 72 hours. Standing by the side of her bed only 4 hours after surgery. Sitting in her wheelchair after 24 hours and walking the halls of Stanmore just shortly after. Maisie will stop at nothing to live like ‘a normal girl’ again.
After recovering from surgery, it was radiotherapy time which meant back to UCLH, where it was decided that Maisie would need 6.5 weeks of treatment (33 sessions daily Monday – Friday). This meant that myself (mum) and Maisie had to stay away from home again Monday to Friday near the hospital in London so that we could attend the daily appointments. It also meant that Maisie could be closely monitored throughout and could have any treatment needed alongside the radiotherapy. We all found this incredibly tough as we had already spent the majority of the last two years without each other (my 2 boys at home finding it particularly rough). All of this happening whilst my husband held down a job, the boys, the house and everything down here as well as, myself, trying to hold down my own business as well as all the hospital appointments and care for Maisie. It caused even more chaos in our already very uncertain world.
Maisie (luckily) breezed through the radiotherapy with little to no side effects and even though Maisie will still have two parts of the tumour in her neck indefinitely (as they are inoperable), it means we will be making sure to keep these stable and monitoring them going forward for (possibly) the rest of her life.
Maisie rang the bell on the oncology ward at UCLH on 25th November 2022 as her treatment is all complete!!!
Maisie is truly THE most amazing, positive, kind, beautiful and intelligent young woman. She has been through so much and she has never let her diagnosis stop her. She attends many events through CWCF and enjoys meeting people who also ‘get it’ and this, as well as everything else that CWCF do, was paramount to her mental health and general well-being whilst undergoing treatment. CWCF really do know how to make the darkest days of childhood cancer a little bit brighter!!!
THANK YOU to Chris, Ursula and all the team at CWCF – I really couldn’t tell you how much you have all done for us, and what it means to our entire family!!! Your support has so many times meant that myself, Maisie and our family don’t feel alone in this journey, and that means the world when you are thrust into the unknown. We couldn’t have made it through these last two years without you and I will forever be grateful to have met you all.
I genuinely feel that our lives would very different right about now if we had not had the support and love from you all whilst undergoing every parents worst fear. We will never forget EVER what you’ve all done for us. THANK YOU!!!”
Claire and James (Maisie’s Parents)