Jake’s Fibrolamellar Fight – behind the scenes.

Jake
(Last Updated On: July 28, 2014)

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While I’m catching 5 minutes peace and quiet, I thought I would write a little update to Jake’s story.
Things have been massively hectic here for the last 5 weeks.  Its crazy how things can change in such a short amount of time.

Jake had to go for his CT scan and was really worried while he waited for the results.  As you can imagine, waiting to be told the cancer is still there or returned elsewhere in the body is quite a scary thought.  Jake received the fantastic news, from his specialist cancer nurse, that the scan was all clear!  Great news.  Jake can now breathe a sigh of relief and concentrate on his recovery until the next scan in 3 months time.  Although we’ve been told that the scan is all clear, it does not mean that Jake is Cancer Free.  It just means that the microscopic cancer cells have not formed into another malignant tumour yet.  Jake now has to concentrate on building his strength back up in preparation for the next fight.  He is determined he will not let this cancer beat him!

While Jake has been recovering, I have been trying to connect researchers, specialists and families both abroad and in the UK to unite in the fight agaianst Fibrolamellar.   It is proving to be a bit of an uphill struggle. After speaking with Cancer Research UK, The International Rare Cancer Initiative and Professor Tim Meyer, it was suggested that a Fibrolamellar Patient Advocate Service be set up for the patients and families who receive a Fibrolamellar diagnosis. I have just started to work on this.  Hopefully this can be up and running within the next few months.  Our aim is to provide up to date information and support to families affected by Fibrolamellar.

Organising the fun day is also taking a lot of my time.  It is taking place on Saturday August 23rd at Torquay Academy between 10am and 4pm.  Everyone is welcome. We as a family, have to say thank you to everyone who has contributed so far. None of this would have been possible without the generosity and goodwill of local businesses and the community.  We are overwhelmed by the support shown to us already, it is absolutely fabulous! Please come along and have a good time, find out a little more about Jake’s type of Cancer and help us in the fight.

We have three main objectives from the money we hope to raise.  Firstly, we need to fundraise to get Jake to the US to see a Fibrolamellar Specialist and also the Researchers from Rockefeller University.  They are preparing clinical trials in an effort to find an effective treatment plan and possible cure.   Secondly, we need to create the Fibrolamellar Patient Advocate Service.  And finally, we need to raise the profile of this particularly nasty cancer.  The medical profession in the UK do not consider Fibrolamellar a priority when it comes to research because it is so rare.  After all, it only affects 1 in 5 million people.

There are still lots to do in final preparations for the fun day.  We still require some equipment for use on the day. We are looking for a tombola drum for our raffle, some high visibility vests for our Marshalls to use and 10 walkie talkie’s we could borrow just for the day. We also need at least 5 dustbins for around the site (the old fashioned style with a lid). If you can help us out by providing these, we would be extremely grateful.  Please email: info@fibrolamellar if you are able to help.  Thank you so much.

Teresa. xx

You can read more about Jake’s story and diagnosis here: https://wearesouthdevon.com/jakes-fibrolamellar-fight/

Click here for more details about Jake’s event: https://wearesouthdevon.com/event/jake-stafford-rare-cancer-charity-fun-day/

And here for Jakes website: http://fibrolamellar.co.uk/

Lots of people are raising money for Jake – Check out Fit for Life and Liam Bennellick’s Sponsored cycle

Keep up to date about what’s happening around South Devon, join us on facebook.

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            Team account for We Are South Devon.