Desmoid Tumour Research Foundation ...

On Sunday 23^rd Oct 2011 come rain or shine

A Fun Run~ Running for Answers.

Will take place in Fairmount Park Philadelphia PA

Organised by Desmoid Tumour Research Foundation: In aid of Fibromatosis Desmoid Tumours...  

In 2009 my family received terrible news... When you’re told your child has a tumour, you instinctively take it that the tumour is cancerous and your world begins to fall apart...  We were referred to a specialist hospital over a 100miles away and after a consultation, a thorough examination and a rather difficult biopsy we waited for what seemed like forever.

The verdict was in... ~ Benign ~ I almost passed out with the joy of pure relief... Fibromatosis ~ a name was thrown down the telephone,  but I was too busy laughing and hugging my beautiful girl and thanking god and the consultant ~ it’s going to be ok I told her, it’s going to be ok...
How wrong I was... 2011 after one extremely invasive operation and god knows how many trips backwards and forwards to the specialist hospital... my girl decided after a final consultation and the distressing news, she was going to lose her arm ~ she quite rightly wanted a 2^nd opinion.

I won’t go on or into details, except to say she’s been referred to ‘Christies Cancer hospital’ (despite it not being a Cancer) the hospital advised it would be treated like a cancer and a treatment plan has been put into place... I delicately share this very personal experience with you, because my beautiful girl is now fighting something we all call the Beast... The tumour is an aggressive ‘Fibromatosis Desmoid Tumour’ a rare tumour, that is hell bent on staying. It clones itself in an attempt to protect her from an injury she received in 2009... Resulting in scar tissue which has gone out of control and DNA’s become involved... Throughout this nightmare journey, she’s been brave, strong and dignified and because of her own research, she came into contact with a page on facebook called http://www.facebook.com/#!/groups/desmoidtumorRF/  On the day she found this group I’ll never forget the relief in her voice as she said, “Mum I’ve found others with my condition”... I wont discuss statistics, but just to say, this is a rare tumour... I’m not a professional or a person with medical knowledge, I’m a really scared mum who half the time feels completely lost, due to the past few years of groping around in the dark, frantically trying at times to make it better for my girl...

However along the way I have learned the Dr’s, consultants and Specialists etc. have different viewpoints, but they all seem to agree on one thing, unfortunately it’s a lifelong condition and something no one seems to know very much about... The Fibromatosis Desmoid Tumour group gain strength and support from one another, we all keep in contact, helping one another in as many ways as we can... but we desperately need your help, support and a positive connection, which, is one of the reasons why I and others communicate incessantly through Twitter & facebook to get the message out, to raise awareness as well as fundraise for research, a much needed cure and as many treatments as necessary...  A ‘Fun Run’ called ‘Running for Answers ‘ has been organised by Desmoid Tumour Research Foundation which is based in America.

Anyone can go to the link (below) quickly and easily, donate as little or as much as you like... As well as this being a personal account it also asks graciously, if you could help ~ I more than anyone knows the state of some finances in households right across the globe, but if you can't donate please dont worry, instead, help spread awareness so that this condition gets the recognition and support that it rightly deserves... We regularly tweet about it on Twitter.... @Fibromatosis & @angeljane01

Here’s the link if you wish to DONATE... http://www.active.com/donate/rfa2011/itcanhappen2u2  every single donation goes directly to (Desmoid Tumour Research Foundation)
I pray hard that someone, somewhere will one day be able to help us get-rid of this awful condition and loved ones will be saved from aches, pain, discomfort and the uncertainty they face each and every day...

Obviously we would like to collect more but The goal: $1000 ~ To date we are 61% towards that goal... Can you please help?

If you’d like to know more: http://www.dtrf.org/dtrf_thefoundation.htm

Angel and the gang Thank you :)

At last I see the light...

I can hardly believe it’s been March since I last wrote anything... My life seems to have been taken up with so many things, some wonderful, some not so wonderful, but the biggest issue within all of that has been ‘TIME’...

Not having enough time to deal with life in general has been the biggest problem... I’ve opened a business, been blessed with a beautiful granddaughter, supported my family, planned our wedding and worked two full-time jobs. To be honest, there have been times when I thought... please god, send more hours ~ simply because, there’s just so much to do. Now, here we are!

Securely in June 2011 ~ I feel the pressure is off ... You all know I love to write, it’s a passion. For me it burns, heals and magically relieves and releases immeasurable thoughts with substantial ideas. Its thoughts which help me to focus on the here and now and very importantly, the future!

I’m right in saying that I’m an open individual but maybe, not as open as some of you may think... There are many things I’d like to talk about but, many things I won’t... For now at least, I’ll simply say, I’ve missed sharing words with you, expressing chosen sentiments within sentences and as my title above suggests... ‘I see bright light at the end of my tunnel’ I’m sure the message was ~ that for a while, I was needed elsewhere! The one thing I know for sure is that right now my job is far from over, but, I will juggle as I’ve done all my life to be where I must be and I purposefully know, I’ll stay true to all, especially myself.

During the past 2 years within the silence of my mind... I have begged, prayed, screamed, whispered, played, slept, cried, ached and leaned heavily on my thoughts. So, although not everything will be shared in this unpredictable future, I will somehow endeavour to portray my essence on the wings of my words. Anyway, who said I have to make perfect sense, Ha, I suspect in the past I have absolutely not! ;-)

It’s worth saying that I’m deeply thankful for any opportunity to share and care... I know with each and every beautiful and not so beautiful day, I will always try very hard to retain the humour, life and characteristic positivity which I so deeply want to represent in my world, especially when sharing it with you.

Angel gently shakes her wings, watching as tiny wisp like feathers drift off to where they need to go...

No. 39 is going...

No. 39 has always been a lovely house, a beautiful home. For those of you who know me, you’ll understand completely when I share this information... No.39 has also been a healing house... its therapeutic qualities were evident to me before I even moved in. This special house previously belonged to a very dear friend of mine... The first time I entered it I knew unequivocally it was going to be mine!

Well at long last No.39 is for sale... I realise there is still some way to go before the next part of the journey of dreams can be accomplished. Even so it wasn’t until the estate agent called to photograph different rooms as well as the garden that my heart went ping... followed by my brain going slightly numb. I know the end to one journey is within our sight. I also warmly feel a strong sense of mixed emotions as I quickly witness the last 7 years flash before me.

The estate agent babbles on, making all the right noises about this will sell the house, that will sell the house and you’re large garden should help considerably. His words echo before they bounce away from me. My visions continue... good and bad times travel in the form of pictures throughout my mind... I see different people and other times.

I note the experience feels surreal because while I'm able to silently encounter the good, the bad, and the brilliant... I also become aware that like me, my gorgeous man stands quietly, watching proceedings. I wonder if he feels the same... are his thoughts and memories crashing by, making him excited for our future. I make a mental note to ask how he's feeling later.

As I sign the contract, I get confirmation that quite possibly this life may never be the same!