Freddie’s mum, Nicole, has shared her son’s story of strength and resilience.
It all 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 would be 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 pain did seem to settle down a bit, it never disappeared completely and normally came back after something a typical 6-year-old does - a bit of rough and tumble play, making it easy to put the pain down to this.
A couple of months later, he started to complain of jaw pain, and neither ours, nor our GPs minds linked the two together. Initially the jaw pain also came and went 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, Temporomandibular disorder 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.
The dentist did a full X-ray of the jaw area and found nothing, but he did notice a slight swelling to his temple, expressed his concern, and told us to go to Oxford Hospital A&E to see a facial specialist immediately. We waited for hours but the specialist 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...
A biopsy was done, the tumour near his temple was causing pain and even in the wait for the biopsy results it started moving his eyeball forward, which was just terrifying.
Whilst we were waiting for the results, it was decided to start chemotherapy around November 22nd, presuming it was Ewing sarcoma, as they had enough results back to make that assumption and he was in so much pain. Just as we went to sign the papers, they got the last result back to confirm it was definitely Ewing sarcoma.
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 where we would now be living and trying to understand.
At this point cancer was present in his skull, chest wall and spine with small metastatic nodules in the lungs. They never pinpointed where it started, the tumour in his chest wall did not present with a lump as it was growing inwards, and although it caused discomfort and was misdiagnosed by our GP, it did not need to be treated as urgently as the tumour in his temple.
The first time someone told me to go to hospital rather than just send me home with antibiotics or painkillers was the very slight swelling to the temple, which was picked up by a dentist. By that point we had tried the GP and been misdiagnosed a couple of times.
Freddie’s treatment was a very aggressive chemotherapy regime every two weeks from November, spanning nearly 8 months. Stepping into 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.
He would spend 2 nights a fortnight hooked up to chemotherapy, then the following fortnight would be 5 nights of chemotherapy, 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 a high temperature between every chemotherapy stint, resulting in him being in hospital for another 2 nights at least on most cycles. We have lost count of how many nights we have spent in hospital.
Towards the end of chemotherapy, he had 6 weeks of radiotherapy everyday (weekends off) with visits taking 3 hours or so out of his day between travelling and treatment. The last cycle of chemotherapy 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 angel delight mixed with double cream and other fatty bad stuff with the tip of a baby spoon which took hours! He had 5 blood platelets and 1 blood transfusions in less than 2 weeks, which by this time seemed all too normal.
We were so pleased when he finished chemotherapy, the strain on his little body was heartbreaking to watch.
We would nurse him better after each cycle and finally get a brief glimpse of our old happy, hyper, crazy Freddie, and then he would have to go back into 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 chemotherapy fixed his pains quite quickly from around cycle 2 and we started seeing less pain from the tumour sites. He even dealt with the flu on top of all this!
24th July 2020 was Freddie’s last radiotherapy treatment; he finished his chemotherapy in the middle of the radiotherapy sessions. After chemotherapy, countless blood transfusions, platelet transfusions, blood boosting injections (which we had to learn to give at home almost every day between treatment), radiotherapy and the side effects between each cycle, we began to see the light at the end of the tunnel and our Freddie was returning to us more and more each day.
Freddie is a typical little eight-year-old boy now. The only things that are still lingering with him are dry eyes, so he has eyedrops and gel to keep them moisturised. He’s had many eye tests and he is still being monitored. He aches from doing sports, and I still find his general muscle resilience isn’t as good as perhaps another typical eight-year-old.
He has scans every three months which have been dropped from MRI and CT to just MRI and chest X-ray, which is a big step as the two scans were never on the same day and he had basically two lots of hell to go through with cannulas, staying still in machines and radiation to his little body; we also therefore had twice the amount of scanxiety, having to pretty much go through it twice in three months.
There are still many things we don’t really know, like what the effects of some of the treatment will be in the future, but at the moment the complaints that he has are so minor considering everything he went through, and we are thrilled to have him so happy, healthy and back to his usual self again.
Freddie 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.
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.
Freddie’s family have set up a Special Fund with the Bone Cancer Research Trust called Freddie’s Future. Their aim is to raise money for the development of new and better treatments, so that children like Freddie have a better chance of surviving Ewing sarcoma. Find out more below.