Support for Ben with Ewings Sarcoma
Firstly, we just wanted to thank all our family, friends and neighbours who have offered us such kindness and support since Ben’s cancer diagnosis; it has been hugely comforting to know we are not on our own.
Many of you have asked if there is anything you can do such as fundraising etc. but until now, apart from the travel costs for our many journeys to Manchester, Oswestry and the Wirral, we had no real idea of what was involved.
As Ben is now nearing the end of his pre-op chemotherapy and discussions are now turning towards surgery and referral to the Limb Centre we thought it would be a good time to share with you his diagnosis, prognosis and how you might perhaps help get Ben back to something of a normal life. Eirlys, Neil & Family
Travelling home from hockey one day Ben felt a lump whilst rubbing behind his knee. Several weeks later the lump turned to pain which prompted him to make an appointment with his doctor, and a common Bakers cyst was diagnosed.
Satisfied with the diagnosis after Googling his symptoms, he then waited 7 months for an appointment with the Orthopaedics team at Glan Clwyd. During this time, he continued to play hockey every week, going the whole season unbeaten! To our horror, we were then told at the hospital that the small lump at the back of his knee was actually a tumour and we were immediately referred to the specialist Agnus Hunt hospital, which most of you will know as Gobowen in Oswestry.
2 days later, after numerous scans, we were informed that Ben had a 14cm tumour. A biopsy later confirmed this to be a rare bone cancer called Ewing’s Sarcoma, affecting less than 30 teenagers and young adults in the UK each year. From the outset we were told the prognosis was not good as the tumour had wrapped itself around his crucial arteries and that to save his life, and give him the best chance possible, there was no alternative but to amputate his leg. At the youthful age of 21, Ben has struggled to come to terms with this emotionally and psychologically.
Treatment so far
Ben has just completed his 5th cycle of chemotherapy with 1 more to go before surgery. He has lost his hair, his eyebrows and most of his eyelashes; his skin is pale and sallow and he has very little energy; a stark contrast to the good looking young man who had an appetite for life.
The side effects of this hard core chemotherapy are significant with Ben suffering fatigue, nausea and vomiting.
Sadly, there is no hope for Ben to keep his right leg and it will be removed half way up the thigh shortly after his 6th cycle of chemotherapy is complete. The operation will take place at the specialist bone hospital at Gobowen, Oswestry where he will spend 2 weeks in recovery and physiotherapy. This will then be followed by another 8 cycles of chemotherapy at The Christie in Manchester, plus radiotherapy to consolidate his treatment. We can’t praise these two hospitals enough!
Post-operatively Ben will require significant mobility rehabilitation and an intensive physiotherapy plan and is likely to have significantly impaired mobility for the rest of his life.
Thankfully prosthetics are improving all the time but whilst lots of innovation and development has been seen in replacement limbs for the Armed Forces, the same level of functionality and prosthetics are not available to civilians on the NHS.
The option of funding the replacement leg through the private system is prohibitively expensive at £75k, especially as it must be replaced every 3 to 5 years.
However, a microprocessor controlled leg using an internal computer and sensors, and benefitting from a knee and ankle joint (known as a ‘C’ leg), is fortunately now a possibility on the NHS but only after a 12 month wait; the NHS is prescriptive in its treatment and there aren’t any shortcuts unfortunately. However, Ben will have to demonstrate commitment and motivation to using a much heavier, mechanical leg first before being considered for this digital leg which costs the NHS more than £35k.
A blade, allowing the wearer to run and jump and overcoming some of the deficiencies in other prosthetics, is not available on the NHS and part funding NHS treatment is not allowed. However, as the blades are not available on the NHS we can then source one privately at a cost of around £50k but we will wait to see how much functionality he gets from his new ‘C’ leg first.
Whilst this news has been shocking and difficult for us all to come to terms with, the combination of chemotherapy and amputation is aimed at cure. In the words of his surgeon at our initial consultation, “1st we save Ben, 2nd we save the leg”. Sadly the latter isn’t an option but if we still have Ben, then we’re extremely grateful.
We’ve been through all the emotions, the anger and frustration but now we’re moving forward. Ben is still Ben, enjoying online gaming with his mates when he’s recovered from the effects of chemotherapy, and will hopefully get to finish university next year. He has youth and determination on his side and we don’t doubt for one minute that he will master walking again quickly and take back control of his life as soon as it is physically possible.
Our focus now is on securing the best replacement leg possible to get Ben back to an active life, to hopefully return to competitive hockey and importantly continue with his studies at university, as well as financing any other costs that would help improve his situation.
Cancer is expensive, especially with travel and accommodation for treatment away from home. Disability too is expensive: car conversions to a left foot drive; driving lessons for an adapted car and adaptions to the home are just some of the many costs we will face in the coming years.
Prosthetics technology is advancing all the time so who knows what could be available in the future that could improve the quality of Ben’s day to day life.
So this is where you might come in:
If you are looking to raise money for a good cause please would you consider Ben, or at least in part.
You can make a donation, however small on his ‘Just Giving’ page: https://www.justgiving.com/crowdfunding/ben-rawson
Katie would like to make her own contribution by baking cakes in the coming weeks. If you’d like to place an order please email us at: email@example.com. Suggested dates are the 27th October and 10th November if you’re interested. She is offering brownies or a lemon drizzle loaf at £3.50 each.
For those of you who know Ben personally you will know what a fun loving person he is and a joy to be around. I’m sure you will agree he is a very worthy cause.
Thank you for taking the time to read this. It is a sad story but just shows how fragile life can be. Make the most of today whilst you can!
With love & best wishes, Eirlys, Neil & family