Erivedge…The Update….

I started out writing a diary of my journey, but after a week I really didn’t have much to tell, and decided that what I did have to tell would be better said in a post for you, when I first month was over.

If you are unfamiliar with my journey you can read more in the Too Erivedge or Not Post.

Erivedge or Vismodgib is a strong drug that alters the way in which cells divide, slowing down the growth or curing Basal Cell Carcinoma (until you stop taking the medication.)

After much consideration and consultation I decided to go ahead with the medication and tackle whatever side effects it may bring.

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UPDATED “The Big Chop”

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****UPDATE on “The Big Chop”****

The last time I spoke to you all about Libby’s fundraising mission we had yet to get off the mark.

What a difference a week makes. In that week she has gained £158.00 in sponsorship, not only reaching her initial target of £100 but smashing it. I can’t thank those of you that have donated enough for your generosity.

With every donation that comes in she gets a little bit more excited about what she is going to do and it is a joy to watch her enjoying raising money for such an amazing cause.

“Mummy, I really I am going to make a difference”

She keeps telling me that she would like to raise £300 because “that is even more money and lots”.

For anyone who does not have a clue what I am taking about, please have a read on for the full story on “The Big Chop”.

In the coming weeks I will be hold a fundraising event, more details of that to follow with some big thank you’s alongside it.

I have also managed to set up a TEXTgiving reference so that people that are having issues with or prefer not too do it online can sponsor/donate.

Simply TEXT: LIBB64 followed by £1, £2, £3, £4, £5 or £10 to 70070, texts are charged at normal rate and the donation amount will be deducted from you bill.

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“The Big Chop” post has been in the making for a few weeks but up until now, I hadn’t managed to get it too a point where I was happy with it and I didn’t want to give you half a story.

Earlier in the year Caitlin raised money for and her hair cut for The Little Princess Trust. Libby was very inspired by this and decided that she would like to do the same, but later in the year.

When Libby said she would like to do the same as her sister I was so touched that she wanted to help other children, she knew where the hair was going and that it was going to make wigs for Children with no hair.

“Mum, you had no hair and it grew back, so if I have mine cut short then it will grow back, so I won’t miss it”

Time ticked on and I promised we would have a look in to doing it before Christmas.

I assumed we would be raising money for The Little Princess Trust but following a conversation with Libby a few weeks ago she had something different in mind.

Having Gorlins Syndrome, Cancer is a word that is used all too often in our house and it is inevitable that the kids want to know more. Libby knows about our condition but asked to be told more about the other Cancers.

I am not one for mincing my words and if the children ask me a question I will answer it as honestly as I can, with as much detail obviously ensuring I am appropriate.

We explained to Libby that Cancer can affect anyone, that there are so many different types, some worse than others and that there are so many different types of treatment, some can be very horrible and sometimes despite all of the Doctors and Nurses efforts the medicine just doesn’t work.

She went away content that we had answered her questions and about an hour later reappeared from her colouring in book.

“Maaaamm”

“Yes Libby”

“You know when we do the haircut for the Princess Trust, can I not raise money for them? Please can I raise money for Boys and Girls near our house that have Cancer, please?”

Of course that wasn’t a problem and so we started looking for charities that she wanted to help.

After a couple of hours of looking and reading she had managed to narrow the Charities down to two. The plan was to raise money for both, however we have decided that Libby will raise money for The Toma Fund, and if I am lucky enough to get the opportunity to do the event I am aiming for next year, then I will raise money for the other.

The Toma fund was close to the heart of my late Cousin, Mark Bulman. Since losing him 6 years ago my Uncle and Aunt have raised money for the charity and for me, was a natural choice. However the choice wasn’t mine.

Here is a little bit about Libby’s chosen charity, taken from their website…..

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The Toma Fund

The Toma Fund is dedicated to the memory of Jordan David Thompson and Sophie Ela Atay, who were cousins that tragically died from childhood cancers. Jordan was 15 when he lost his battle with Leukaemia in September 2007 and Sophie was just 2 when she died of Neuroblastoma in March 2010.

The fund began when Jordan was ill and he wanted to do something to help other’s like himself who were going through treatment at Newcastle’s RVI. Through Jordan’s efforts and later those of his family and friends, the Toma Fund raised over £400k towards the support and build of a dedicated unit in the RVI, Newcastle.

The Toma Fund is an independent charity and it is dedicated to helping children, teenagers, young adults (between the ages of 0-24years) and their families, who are going through treatment for childhood cancers in the North East and Cumbria.

By distributing the funds raised The Toma Fund aims to support families who are experiencing financial difficulties caused by caring for and supporting their child through cancer treatment. They also aim to provide equipment for children and young people going through cancer treatment and provide opportunities for children, young people and their families who are going through cancer treatment to have experiences that provide memories for the future

On the 28th of November 2016, Libby will be getting “The Big Chop” courtesy of Toni and Guy. They have very kindly offered to do the chop and style her up after.

Today I have set up her fundraising page. If you would like to sponsor Libby please follow this link:

https://www.justgiving.com/fundraising/Caroline-themarylousaga

At the beginning of November we will be doing a Bonus Ball raffle. I am currently sourcing prizes for this so will confirm all the details sooner rather than later.

Words can not describe how proud we are of our princess. She is one brave, generous and loving little lady with a heart of gold.

In advance, we would like to say a massive thank you, we will keep you updated on what is happening with pictures and posts not only on The MaryLou Saga but on Social Media too.

For now……Mwah x

Libby and Caroline

xxxxxx

Update x

Its been a long old week, well maybe a little longer than a week…..

I didn’t want to bore you with my treatment waffle. (For all I find a lot of comfort in what I type, there is only so much of my rational and irrational thinking that is worth reading, I save that for annoying Mark with).

I simply have not had much focus on anything else other than the take it or leave thoughts that were flowing through my mind.

What have we been up to sine my girly shopping day last week?

Well this happened……..

update update1

Not the most interesting of things, agreed, but we have been promising ourselves new living room flooring for as long as I can remember. There has been some serious long term saving going on for it and finally it is down.

What else…..?

Well I have booked up to go to Edinburgh Zoo while we are on holiday later in the year.

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Not the first time we have been but its the first time all the kids will have been and it will be nice to have them at an age where they all remember going.

They are all very excited about the Monkeys. Lions and Penguins ……oooh and of course the Panda’s.

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Then is the point we hit ….”Mam. I’m bored” GRRRRRRRRR

We have had a group discussion of what the kids would like to do and they have told me games (got loads of them), craft things (working on that one), Reading (Amazing idea) and a Baking Day.

With a little help from me Libby has discovered paper back “Proper” reading books.

We came across the My Little Pony books the other day and bought her ……… It took her 2 days to finish it but 16 chapters and she is done and desperate to read some more. So, while out today I invested in …….for her.

update3

Seeing her reading has really got my interest for reading up again. I love a good book, but it has to tickle me. I loved reading just like the kids when I was at school but when I left the interest just fell. I love a good book, its finding the right one.

That leaves me with the mission of finding me something good to read, some good series for Libby to pick up on and something that is age appropriate for Regan. (Next post)

A Baking day is on the cards for the week after next.

(If you have any suggestions of books, baking ideas and/or cheap/free things to do then please feel free to comment)

update4

Then of course we had hospital on Tuesday.

If you haven’t read my previous post, Too Erivedge or Not??? , then have a quick read. ( I will let you catch up 🙂 )

Right, well I had my questions ready and these are the answers I got…

  • What are the most common side effects within the patients that are already taking it in their care?

    I asked this question and was told that most patients with side effects will get a degree of muscle spasms, hair loss and appetite issues. Mark asked how many patients they currently had who were experiencing no side effects what so ever. To this she replied, we do have patients who have no side effects, in fact there are a few.

  • How many patients have stopped taking it because of the side effects? (Bearing in mind the words used by CR UK are “You keep taking the treatment until it stops working or the side effects become too great.”

    Quite a few, but then those that persevere find that the side effects become less extreme over time.

  • Is it going to interfere with me starting college and working? (I have less concern about work than college as I work from home and have an amazing employer)

    I am likely to suffer fatigue, but if I structure and routine my days then this can be managed

  • Will it have a knock on effect in every part of my life?

    Until I start taking them there is no way of knowing, each patient is different, only time will tell.

  • If/When I stop taking it, will it mean I am more prone to cancer than I was before taking it?

    It is specifically aimed at BCC growth, and there is no evidence to suggest that this is the case.

  • Will it mean that my growths increase in growth speed?

    There is no evidence to suggest that this would happen.

The other question I had was, “Can I start when the kids are back at school?”, I am very thankful that the answer was “yes”.

The paperwork was signed, the vampires stole some blood and I return at the beginning of September to collect the drugs.

I can’t say I am 100% convinced by the whole thing but then I fear any new treatment or procedure. Then I guess that is only natural, fear is a good sign, means I am human, well at least that is what I am told.

xxxxx