We have set up this fund, to recognise the achievements of everyone who has raised money for this amazing Charity in support of Josh”
Katherine, Rob, Josh & Sam
Towards the end of 2020 my son Josh, who was 19 at the time, started complaining of pain near the ankle of his right leg, it was in the same area that he broke his leg in 2015 so to start with we thought it was that causing him some issues.
In December 2020 he visited the GP, he was sent for an Xray which stated he had a non-ossifying fibroma (NOF), after a couple of months we were still waiting for an NHS Orthopaedic appointment so Josh’s grandparents paid for him to go privately and he had an MRI scan which also reported a NOF.
From there we were referred to Royal National Orthopaedic Hospital Stanmore, and it was here Josh was diagnosed with Osteosarcoma on 31st March 2021. The tumour was close to the ankle of his right leg, his consultant, Mr Perera told us he wanted to cure Josh and the only way to do this was to remove his leg below the knee.
Josh took all this news in his stride (for want of a better phrase) while we, his family, Mum (me) Rob (Dad) and Sam (brother) felt lost and broken hearted, it was Josh who gave us the strength to move forward.
On 6th April 2021 we had our first appointment with Dr Windsor at the Macmillan Centre (UCLH) in London, where they showed us the treatment plan which would take 30 weeks, and Josh's first Chemotherapy started 15th April 2021.
From April 2021 – June 2021 he underwent 10 weeks of chemotherapy and then on the 30th June 2021 he had his surgery, sending us a selfie that evening letting us know he was back on the ward!
He then faced another 5 months of Chemotherapy and 48 rounds of immunotherapy, before immunotherapy and on top of the medication he was taking for the chemotherapy, he had 3 P's and an O - Paracetamol, Piriton, Pethidine and Ondansetron, it was like a mantra we all knew on the ward. When he had the immunotherapy and Chemotherapy together it made him very unwell – sick, shaking, fever – so he was also prescribed Levomepromazine, this would knock him out for nearly 24 hours, I had to keep waking him up to drink and eat.
We spent a lot of time at the Cotton Rooms in Tottenham Court Road, (a hotel owned by UCLH for patients to stay in rather than on the ward). Thankfully there were only two episodes where josh had to stay overnight in hospital, and he had the same pic line from the start of his treatment till the end which is quite unusual.
The Staff at UCLH are beyond amazing, supportive, kind though when we bumped into them in the street without their masks, we often didn't recognise them! On the ward is Tom, who works for Teenage Cancer Trust, he is great with the patients and gives advise where he can but also arranges pizzas, cake decorating and fun stuff for the ward. We had visits from the "At Home Team" from Basildon Hospital once a week, to take blood, carry out PCR tests and check his general well-being they were also very kind people who we got to know well.
In between treatments to help take his mind off his situation and keep occupied he decided to make bird boxes out of old pallets. He made in excess of 40 of these and gifted most to family and friends and even one for Sir Trevor Brooking!
During this whole journey Josh’s mindset has blown everyone away, it’s been a true testament to his strength and character, he has shown immense courage but has also helped and supported other young patients he’s met along the way. His determination, humour and resilience has pulled us and everyone around him along. During the time we spent at the Macmillan Centre we made friends with 3 other families all with boys going through treatment for Osteosarcoma aged between 14 and 21 who all underwent different surgeries. We have a “We’re Stronger Together” WhatsApp group and I would say we really are, and they have supported me a lot through the months, and I hope that they feel I have supported them too.
His friends were an amazing support, picking him up and taking him wherever he wanted to go, to the pub, to parties and Sam along with their West Ham family took him to as many games as they could.
In October 2021 he got his first prosthetic leg and whilst he did really well walking with it, it was not really until after his Chemo finished that he started to wear it every day, and since January he has really taken his life back, he passed a driving assessment so he is able to drive an un-adapted car (although we are still waiting for his car to arrive!), he has been on holidays to Tenerife with us, to Lyon to watch the mighty Hammers and Marbella with his friends.
He has returned to his job as a trainee site manager with Willmott Dixon, who were an amazing support throughout his journey, and is just sorting out his return to Uni studying Construction Management having taken a year out.
All four of us couldn't have got through without the love and support from our family and friends, the endless dinners that were delivered to our door, the hugs, video calls, dog walks, and also amazing support from our work.
Reflecting on the last year we realise how the advice we were given by a dear friend to take one day at a time, and just deal with what each day brings was the only way we got through it all. Once you are out of the Cancer bubble and “normal” life returns, that’s when it hits you as a family, it’s when you sit and reflect on all you have just come through. I don’t think anyone can appreciate what life has been like or will be like for Josh except those who have also been on this roller coaster. With Covid and then Cancer he has missed out on a key time in his life ages 19-21, when you are finding your way in life as a young adult.
From the outside I can see that it looks like he is now back to, “normal” and is getting on with life, and he absolutely is but it comes with its on-going constant daily challenges, nothing he can’t overcome but none the less challenges. He does say when he is struggling to get the help he needs “I’d like them to live one day in my shoes see how they get on”, and as his family it makes us realise how hard life is for him sometimes. Josh is doing so well with his prosthetic leg, but we have also had times where he just can’t wear it or it’s a struggle to wear, we’ve had several 8.30am “drop in” appointments at the prosthetic centre, they are amazing, always find the time to see him and make sure it is better for him before he leaves.
Josh is one year cancer free (following surgery) and we are now in the realms of scanxiety, having bi monthly chest x-rays and check-ups, so when we hear the words “x-ray is all clear” we can breathe again for a few weeks. Josh is on the NHS waiting list for counselling, we really hope it starts soon, as we think he needs to talk through his journey with someone other than his family. I have started guided meditation, Pilates and I am having counselling all of which are helping me come to terms with everything that’s happened.
This is something I read often to help me get up and get on with my day – “And some days life is just hard. And some days are just rough. And some days you just gotta cry before you move forward. And all of that is ok.” So my best advise after “ONE DAY AT A TIME” is “ITS OK TO NOT BE OK”, give yourself time as a family to heal, it won’t happen overnight, you will have good days and bad days.
Katherine, Rob, Josh & Sam
So far a team of 27 took part in the Jurrassic Coast Challenge in May 2021; we had a Charity Football Match in June 2021; Josh's Aunty Terri walked 100 miles in August 2021; his cousin Rachel walked 100km with her dog Belle in November 2021; Rob completed the Ride 100 in May 2022 and there are some upcoming events too.
Setting up this fund will make it easier for people wanting to raise money going forward; and to raise awareness of Bone Cancer and support BCRT in all the work they do.
You can make a donation or pay in funds raised by cheque, payable to Bone Cancer Research Trust, to:
Bone Cancer Research Trust, 10 Feast Field, Horsforth, Leeds, LS18 4TJ.
Please ensure you make it clear that the donation is for Josh's Journey so that your donation is allocated to the correct fund.
100% of donations to Josh's Journey will go towards our vital work.