well hello, and thanks for clicking on my blog today, it's gonna be a tough read, but hopefully by the end we will be in a good place, and will feel stronger, and more positive about our own lives, and we will have changed some energy within ourselves from being potential to kinetic.
this week has been a rollercoaster of a week for me personally, with some really exciting things happening at bigmoose including continued support with people donating warm stuff for our 'grab your coat' campaign, doing a couple of interviews spreading the word about what we're up to, getting our branding sorted for our triathlon for disabled children, our supertri for super kids, see what you think, hopefully you like it?
tonight (friday 21st) i am joining my old ice hockey goalie pal sean ward to go to his children's school to tell them about our event, and hopefully recruit some participants, and everybody i tell about this event seems really keen to help, so i'm hoping we will encourage lots of people to attend to watch as well as take part.
also this week we have had a few people telling us they want to get closer to bigmoose and get involved in a bigger way, so we are looking to start doing some strategic stuff to get them onboard and expand bigmoose at a faster rate, which should be great, so hopefully the fruits of their efforts will show up in this blog in the not too distant future, and if you feel the same, and want to take a more visible role, just drop us a line at firstname.lastname@example.org
i am writing this blog, and keep thinking about what i am about to write, and almost don't want to, but i know i need to, to hopefully get a positive outcome from telling this story.
earlier this year we held a fundraising abseil from the top of newport transporter bridge (177ft), as many of you will know if you've been following for some time, or you may have taken part, and if you did congrats and thanks.
the abseil went really well, with everybody who turned up to take part completing the job, which considering how nervous some 'danglers' as we called them were, was confirmation that we had the best rope team in the business taking care of peoples fears.
as the event unfolded, i was introduced to mr and mrs clarke, and their four lovely children, one of whom i was informed by mum donna was currently having treatment on the teenage cancer trust ward in cardiff, that we were raising funds for.
emily was a petite 16 year old, and donna told me that this was the first time that she had ventured out since she had lost her hair completely since having treatment for her cancer, but that she had wanted to support her two friends who, also aged 16 were abseiling and raising funds themselves for the teenage cancer trust ward where emily was being treated.
i immediately thought how brave emily was, and over the last eight months this characteristic has repeatedly shone through in emily in all she does.
em's school chums pulled on their safety helmets and walked the steps of the beautiful steel structure till they towered over us on the bright sunny spring afternoon.
as they descended and confirmed sir isaac newton's theory, we all cheered and shouted encouragement, team clarke more vocal than most.
i admired the love that was apparent between the friends, and as they hugged it out post abseil, and realised that emily was obviously a very popular young lady.
after the abseil i kept in touch with donna, and met her for a coffee at the heath hospital where emily was being treated, and whilst she was upstairs being given chemotherapy, we chatted about their family's ordeal.
in november 2013 emily visited her doctor due to some stomach pain, and specifically two lumps, which resulted in a diagnosis of a far less serious nature than the inevitable result, and she was prescribed laxatives.
these obviously didn't work, and donna decided the length of time to wait for a scan was not acceptable, and her maternal instincts kicked in, and she opted to get a private scan on emily.
unfortunately the two weeks worth of scans emily had to endure at the royal gwent hospital resulted in her parents being told the news that no parent should ever have to hear, 'your child has cancer', specifically non hodgkin (burkitts) lymphoma.
the clarke family were then told that they should go home and enjoy christmas, as there wasn't any hope of any cure, and as i type this i find it very difficult to even comprehend now their family's thoughts at being given this information, i just cannot put myself in that place.
some days passed, and from nowhere unexpectedly donna received a call from the hospital saying that they had some news that they may be able to treat emily, but such was the urgency to get things started they told donna to bring emily into hospital immediately.
donna agreed to just pick up her other children from school, to which the hospital insisted she leave then, or they would send an ambulance to collect her.
emily started chemotherapy immediately, and over the next four months she had a chest drain on christmas day, four courses of chemo, eight doses of monoclonal antibody therapy, nine lumbar punches, a feeding tube, and a whole load of side effects, which saw her spend ten out of fifteen weeks in hospital.
finally on the 30th march she was discharged from hospital after her last chemo, and after having a scan on 16th april she was told the great news that she was in remission, and officially cancer free on april 17th of this year.
unfortunately, the story hasn't gone as we had all dreamed, and on november 13th, just over a week ago, emily relapsed, and her cancer has returned.
she has immediately gone back into treatment, which as well as chemotherapy will this time involve a bone marrow transplant.
this week on my facebook and twitter pages i have appealed for people to register as a potential donor, and the response has been absolutely amazing, with almost fifty people sending messages that they had registered, and people sharing it to over eleven thousand people, but we really need to ramp this up, as many of you would have seen the recent huge appeal by team margot who was in a similar position, and unfortunately lost her battle, but hopefully with someone out there's help, maybe you or me, emily can win her battle with cancer.
as i type this through watery eyes, i ask you to please help emily by registering and telling everybody in your world about her fight, and the more we all share her story, the more people will register, and the more we up the chances of finding a donor, and as a parent i really ask you to help, this is how you can change emily and her family's world today.
if you are aged 16-30 register here http://www.anthonynolan.org/
or if you are 18-55 sign up here http://www.deletebloodcancer.org.uk/en
i saw donna today as she headed up to the teenage cancer ward, as she called into my house to drop some warm clothes to give to the homeless, a more selfless family you couldn't wish to meet, and as i asked her if she was comfortable with me telling emily's story, she replied 'whatever it takes' and her eyes told me exactly what she meant.
so in conclusion, we as humans have the chance to help save another young humans life, and what my dear friends and readers of this blog could be more worthwhile, and when you have spent that five minutes registering, i assure you it will be the best thing you do today
thank you for reading to the end of this blog, and i hope we can report positive news over the coming weeks, and with your help i'm sure we will.
until next week, i'll be seeing ya,