Neil Featherstone
Cycling Route 66 for Sophie
Fundraising for St George's Hospital Charity
Story
PLEASE SCROLL DOWN FOR AN UPDATE!....
We can all agree that 2020 has been a shocker, right? A real nightmare!!...
So please spare a few minutes to read the following - take a moment to think about this situation and please kindly support our wonderful NHS in order that they may be able to continue to support US, the families affected by life-threatening situations, all whilst dealing with this COVID nightmare we are all contending with.
My niece, Sophie, age 15, had been complaining (like a normal teenager does) about a sore leg/pulled hamstring type of pain, so her parents monitored it for a few days, but when not getting better they took her to their osteopath.
The osteopath was concerned it could be a potential blood clot, so sent them straight over to their local A&E for assessment. A few tests and several scans later the diagnosis was an infected haematoma.
Upon admittance to A&E, the doctors found she was very anaemic, (low blood count), determined to get to the root cause of this, when she was admitted to the ward, more tests, scans and consultations across many specialists over several days were carried out to ascertain what was going on, but sadly at the end of October, when all the tests were complete, the underlying issue impacting Sophie was confirmed as Leukaemia.
During the week and a half on the ward, in a battle to fight the infection, they started her on a spectrum of antibiotics in addition to a variety of pain medications to do something for the immense discomfort she had in the back of her thigh.
After a week and a half and an operation to remove 250ml of infection from her leg, Sophie showed signs of 'Stephen Johnsons Syndrome' aka 'SJS' (Please do not look this up anywhere near lunchtime). This is a rare, severe and life threatening reaction to a medication, suspected to have been one of the antibiotics used to fight the original infection.
Her body blistered like burns and was so bad that she had to be constantly medicated and at times kept sedated and on a ventilator. The complications continued with her spending several weeks on dialysis as many of her organs were struggling to cope with all that was going on.
Now for the good news…the original infection and operation is well on the way to being completely healed, everyone is pleased with that progress. Her skin was being treated in the same was as a major burn incident, this meant that Sophie had to be covered with strong steroid and barrier creams to help the healing but protect her from infection. During this time difficult time, where we were getting regular updates on her critical condition, it was hard to also think that she also had the Leukaemia to contend with. Whilst she was unable to start on traditional chemotherapy, the oncologists started her on some very strong steroid drugs, also an effective initial step to fight the cancer and buy her some time to get over these complications before embarking on the next.
My niece is now doing so much better, her skin (apart from some patches which will take a lot longer to heal) is nearly completely better, her kidneys, pancreas and liver are almost working normally and the steroid treatment to fight the leukaemia have done an amazing job and she is in partial remission, meaning that she can continue with more traditional chemotherapy with much more confidence and good news on the horizon.
The long-term fight she is still facing will be a fraction easier but she still has a long road ahead of her, and one that will continue to require the HUGE amounts of support, not just medically, but also emotionally.
I am going to enter “The Route 66 Virtual Fitness Challenge” Thats 3,669kms!
I’d love to finish the event with an epic ride, but due to Covid this is un-plannable right now, so I’m planning on just racking up the miles for now and seeing where I get to!
If you can spare any amount to donate to this cause, I can honestly say that this hospital has been nothing short of amazing! Every member of staff in the Paediatric Intensive Care Unit (PICU) and Pickney Ward at St Georges have been amazing.
I feel guilty when I ride, that I can just get up and ride when I want to... So, I want to raise as much money as possible for them and help them support many more families like mine in their hour, day, month or year’s of need.
Follow my progress on:
Instagram - https://www.instagram.com/nellisfeatherhead/
Follow my hashtag #CycleForSophie
Strava - https://www.strava.com/athletes/16768036
Facebook - https://www.facebook.com/NellisFeatherhead/
Thank you.
17th FEB UPDATE: 2021 is here and we’re still in lockdown and the kilometers keep climbing on my challenge to cycle the length of Route 66. As you may know, the morning routine of a virtual cycle is to raise funds for St Georges Hospital who have been amazing in my niece’s treatment and recovery since October 2020. Support for me on this journey has been incredible, I have cycled nearly half way and thanks to everyone’s generosity I have raised twice the amount of money I set out to collect at the start, thank you everyone who have kindly given to St Georges so far.
I thought it would be fitting, given where I am with this challenge, to provide you all with an update with how Sophie is getting on and I am pleased to report that things are going well.
In the middle of January she was moved from St Georges to The Royal Marsden, Teenage Cancer Trust Unit, Sutton, to continue with her recovery. Sophie’s overall skin and organs are fully recovered from the Stephen Johnson Syndrome and other associated complications. The stubborn wounds on her legs are still taking time to heal, this is expected but the specialist nurses are constantly trying different things to speed the healing up.
Sophie still has a fungal infection hanging around in her body and is on a variety of different anti-fungal drugs to combat this. More scans due in the middle of March will give a better picture of this side of her condition. The Leukaemia treatment is going well, she has started back on some of the chemotherapy and thankfully is showing good signs of continuing to fight back the disease.
The best news of all is that she has been well enough to have the odd night at home with her mum and dad, this is perhaps the best medicine of all, when she is at home she sleeps better, eats better and moves about much more. While all NHS staff from the start have been simply the best, nothing can beat being at home. Paul, Emma and Sophie hope that very soon she will be discharged from The Royal Marsden to become a daily outpatient, this will be another positive step in the right direction.
Thank you everyone for your support, kind words and contributions for St Georges, while Sophie is no longer a full time patient there, she has on-going follow-up appointments to ensure she is well on the mend.
UPDATE 21st FEB: SOPHIE HAS BEEN DISCHARGED!! Daily trips to hospital still required but its such great news that she can spend more time at HOME with BOTH her Parents!!!