Raising vital funds for life saving research into Ewing sarcoma.
Our 6 year old son Freddie is the eldest of our 3 children. He is such a happy, kind and relaxed big brother to his two little brothers, he is an absolute joy to be around. He’s our little friend.
Freddie unfortunately was diagnosed with a rare childhood cancer in November 2019. It’s called Ewing’s sarcoma which was metastatic (in more than one place). It’s an aggressive cancer that creates tumours in the bone and soft tissue that can spread to anywhere in the body, very quickly. We’d never heard of it (or sarcomas really for that matter) before he was diagnosed. Our world crumbled around us as they told us the news and we stepped into this frightening new world that we would now be living and trying to understand it all. Stepping in to the ward for the first time seeing children with no hair, tubes everywhere with tall beeping stands at their side, it hits you like a train...this is really happening.
It started when Freddie complained of chest pain. We assumed it was a pulled muscle from a very active weekend but it kept niggling and we felt it best to get him checked. The GP suggested it was likely to be muscle related and to try Ibuprofen for a week. Funnily enough the pains seemed to settle down a bit, they never disappeared completely and normally came around after something a typical 6 year old does - a bit of rough and tumble play, making it easy to put down as that triggering it. A couple of months later, he started to complain of jaw pain, neither our minds nor our GP’s mind linked the two together. The jaw pain also came and went initially but it didn’t ease off, it got worse, especially at night time and kept him up every night. The agony worsened so much that after 3 misdiagnoses at the GP surgery (ear infection with antibiotics, TMJ and teething) a lot of pain, blood tests, many sleepless nights where he was inconsolable, antibiotics and above all-precious time, we finally had some progress. It was from a Locum Dentist we visited after not knowing what else to do one weekend when he was still in pain as the next bit of the GPs advice was still not working. He noticed a slight swelling to his temple, expressed his concern and told us to get to the Oxford A&E to seek a facial specialist immediately. We waited for hours but the facial doctor couldn’t see us that day, we were anxious but still never suspected anything like what was to come. We came back the next day and after some scans and having been seen by various doctors, they still didn’t have a full diagnosis but simply said, “we don’t know what it is yet but I can’t sugar coat this for you, it’s not good”. That moment and the main diagnosis brings back so much dread, sick, panic, fear. In my head it’s obviously bad, but it wouldn’t be cancer, it couldn’t be...
Freddie has just finished treatment which was a very aggressive chemotherapy regime every two weeks since November, spanning nearly 8 months. He would spend 2 nights a fortnight hooked up to chemo, then the following fortnight would be 5 nights of chemo, meaning in a 28 day period he was in hospital overnight for 7 nights a week. On top of that (especially at the beginning of treatment) he had temperatures between every chemo stint, resulting in him being in for another 2 nights at least on most cycles. We have lost count of how many nights we have spent in hospital.
We are so pleased he has finished chemo, the strain on his little body is heartbreaking to watch. We nurse him better after each cycle and finally get a brief glimpse of our old happy, hyper, crazy Freddie, and then he has to go back in to hospital for the next round to be put through it again, on loop for 8 months. The beginning was so tough, his face was so swollen that his eye was protruding, he was in so much pain with his jaw and a shadow of his old self, but thank goodness the chemo fixed his pains quite quickly from around cycle 2 and we started seeing a glimmer of our boy, he even dealt with the flu on top of all this!
Toward the end of chemo he then had 6 weeks of radiotherapy everyday (weekends off) with visits taking 3 hours or so out of his day from travelling and treatment. The last cycle of chemo alongside radiotherapy resulted in him being in hospital for another six nights with mucositis, a temperature and swelling from radiotherapy. He could barely talk or eat because of the pain and nearly had to have a feeding tube. We managed to fight it off by feeding him (with the tip of a baby spoon, took hours to feed!) of angel delight mixed with double cream and other fatty bad stuff! He had 5 blood platelet transfusions and 1 blood transfusion in less than 2 weeks as well, which by this time seemed all too normal.
Fast forward 8 months of chemo, countless blood transfusions, platelet transfusions, blood boosting injections (which we had to learn to give at home almost everyday between treatment), radiotherapy and the side effects between each cycle, we can see the light at the end of the tunnel and our Freddie returning to us more and more each day.
We remain as positive and optimistic as we can with the wait for our first scan on the horizon to see if treatment was successful. The statistics for this cancer aren’t great, especially if it returns, but we are forever hopeful his little body can keep it away and he can lead the life of a normal child as much as possible.
Supporting Freddie's Future
Life is scary if we dare to look past one day at a time - the lack of treatment options, Ewing’s infamous reputation for high chance of recurrence, the lack of funding and research to find these treatments and the lack of awareness out there, resulting in many misdiagnoses which costs precious time. We feel sick if we think how much better his chances would be if it was caught on that initial GP visit. We want to raise money for the development of more treatment, immunotherapy, and allow children like Freddie to have a chance at fighting this awful disease. The Bone Cancer Research Trust have some promising projects, they’ve been so supportive and are trying to make this happen but we could do with your help to help them do this, and that is why we have set up this special fund, Freddie's Future. Help us help children like Freddie by funding the amazing work The Bone Cancer Research Trust put into helping beat Ewing’s.
Join the Freddie's Future Facebook Group to follow Freddie's progress and find out more about how to get involved!
We thank you and appreciate your time to read Freddie's Story
Nicole, William, Freddie, Albert and Stanley
Text BCRT FREDDIE to 70800 to donate £5
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Get in touch if you would like to create your own special fund.