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One year on

*All posts about Felix were written with express permission from his mother*

A smidgen over a year ago I wrote this post about my lovely friend Jayne and her equally lovely family, her son Felix and his treatment for Acute Lymphoblastic Leukemia. I went on to shave my long hair off and raise £1200 for CLIC Sargent. And I have you lot to thank for it, because it certainly didn’t all come out of my pocket.

So, how’s about an update? Jayne has been doing a 100 day countdown and we’re down to 3! Each day has had a photo, and I’ve got a few to show you. Over the last week or so Felix has been having some finals.

First, his final IV dose of Chemo:

last IV chemo

Then all at once, his final lumbar puncture, spinal Chemo, and the removal of his portacath.

port out

Here’s the port:

port

This allowed IV access for treatment and to take bloods without having to put a new cannula in every time. Understandably he was VERY happy to have it out! And I can’t think of anyone more deserving of this big bunch of balloons!

portoutop Here is Felix’s medicine shelf on Sunday. As of friday, it will be almost completely empty. Hey, everyone needs calpol.shelf

Thank you so much to everyone who donated or otherwise helped me on my tiny insignificant endeavor last June to help wonderful children like Felix to receive help in the future from CLIC Sargent.

One last one, of Rudy and Felix. just over 3 years, and he’s almost done. He’s been so amazing and brave, I’m proud of you little dude, Nothing can stop you!

rudy felix

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The Big Buzz!

It’s going to be a picture heavy post guys, but let’s face it, that’s why you’re here this time!

So from start to finish, here we go!

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From the top we have:

My hair about a month ago, and after my friend Jannine (with help from her mum and her 7 year-old Millie) braided it for me since I am absolutely no good at doing my own hair.

In the hot seat at Studio D in Ossett with Emma laughing nervously, and the first few cuts.

The last plaits and the back before the clippers came out! And then the rest are clipper progress shots.

What happened was I went in, and waited for my appointment looking like that (having also walked through a small part of the town too), and then it started. We had a nice chat about how much I’d raised and one of the customers in the back room for washing (and the girl who was about to wash her hair) came in to watch for a bit! There were lots of “I can’t believe you’re not nervous!” and “you’re so brave!” and then the scissors. A dozen or so snips and it was all off!

Then we went to a number one buzz as Emma didn’t want to scratch me with raw blades on the clippers. Once that was done, she said “it doesn’t quite look shaved shaved though does it?” so we went for raw blades after all. She said it was quite liberating actually as they never get to just chop a long do off, much less shave it. I was handed another £40 in cash which was incredibly generous, and then they wouldn’t let me pay for the cut either.

It feels funny! It almost feels as though I’ve got a very tight ponytail, so much so that I reached up earlier to run my hand down the tail, only to discover it was gone. This was WHILE I was writing about the chop on instagram! It’s also very rough and almost like velcro when putting a t-shirt on, but I’m sure it’ll be fine in a few days. There’s an element of sensory overload too, like my brain has ignored my scalp nerves for so long because they had nothing to say, and now they’re shouting “We’re naked!” and I can feel every millimetre, it’s very weird.

The boys reacted fine, including Henry, though he had a rather concerned look on his face at first. The big boys just spent about ten minutes saying “You look like a boy!” and cackling with laughter. Thanks boys.

I’ve had a huge amount of support from friends on facebook and so many donations, I’m blown away. The current total is…..

£1090!!

Thank you so much to everyone who donated, there are friends, relatives, friends and relatives of friends, and people I don’t know at all on the list and I am so grateful. On  Monday I’ll be sorting out posting the hair off to The Little Princess Trust too. I’m so pleased, and it’s not really me who’s done it, it’s all of you! so thank you, thank you, thank you! That amount is such an achievement, thank you for getting me there!

And just one more picture, the fantastic little boy who inspired me enough to get it done.

felix

Keep on kicking cancer’s butt Felix xxx

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GoBaldForFelix – Before and FAQ

So, We’ve got about 3 weeks to go until the Big Buzz! Time for the before info. First and foremost, if you’ve not yet read Felix’s story, you can find it here, and my justgiving page here.

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This is how long my hair is now, probably the longest I’ve ever had it. It’s pretty much in its natural state, I’ve never used permanent hair dye but it’s got a slight memory of red in it. Since telling people about the shave, I’ve had a fair amount of questions, so we might as well stick them up here, so here we go…

Q: You’re joking. No You’re not!
A: This one was obviously more common before the just giving page went up 😉 No really, it’s happening! Similarly I’ve had a couple of “you’ve still got your hair?” comments when seeing people. Three weeks baby!

Q: WHY?!
A: Because of Felix, obviously, but also because of the bravery of his mum Jayne. It usually then extends to…

Q: But why shave your head?!
A: I get it, it’s a little weird. You don’t see many women with shaved heads, and even then very few of them are white. I actually did see one a few weeks ago, and she looked great! It gave me a little hope 😉 Mostly, I’m shaving my head because it’s visible. I’m sure if I trained and tried, I could run a 5k or something, but I hate running, and once it’s done it’s sort of done. This way it lasts a little longer. The other reason is that I’ve got long hair, long enough to make a decent wig. I’ve wanted for years to donate it (The hair is going to The Little Princess Trust), but never had enough ‘spare’ to just cut off. A secondary benefit is that Henry has become a hair puller and it’ll be a nice break!

Q: Why now?
A: well, it takes a while to grow it this long. As for why June, we’ve just had a family holiday that I still had hair for, and any pictures from Ethan’s and Henry’s birthdays will have hair. For some reason that felt important, and I settled on June 14th.

Q: Aren’t you scared?
A: Not really, not of being bald anyway. I’m pretty sure it’ll grow back quickly enough that I won’t even have time to get used to it. I’m a little bit nervous that it’ll look weird. I’m pretty nervous that the children, particularly Henry, won’t react well. I’m mostly excited to get it done though, it’s a nightmare to wash and brush and dry on a rushed morning!

Q (sort of): You’re so brave!
A: Not really! It’s just my hair. I’m not particularly girly, I’m not attached to it, and most importantly, I am choosing this. There’s no choice for those who lose hair through treatment, and mine will all go at once, and begin to grow back immediately, without any admissions to hospital or sickness. Plus I get to feel good about it!

Annnd that’s pretty much it. I’m open to new questions if you have them though!

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A family weekend

IMG_3543This weekend my niece Annabella was blessed. This is kind of like a christening but without the water, The baby is given her name (a formality, it’s not like you can’t name the baby before then!) and a personal blessing, usually from their father. It’s a special event for Mormons, in the same way that a christening would be. We got to see my family too and Jess’ best friend Cathy who I haven’t seen since Jess and Jonny’s wedding as she went off on a mission to Portugal and just got back, it was great to see her as she’s fab and fits in with us joking about and stuff. It was lovely, we had a nice lunch of soup and a ton of dessert, and just some nice quiet family time.

Then on Monday We went with Mum and Dad to Amners Farm, which is a working farm that they open at weekends in the spring for lambing season. The boys LOVED it. Puppies and chicks and lambs and ponies, sheep shearing, a trailer ride and a miniature train. Pics ahoy!

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Sam was ecstatic at all the fluffy things and the train. He nearly spontaneously combusted when he held both the puppy and the chick, but was very nervous about the pony, until it started moving. Ethan was the opposite, couldn’t wait to get on the pony, but was nervous about having the puppy on his lap. He was also less than impressed when a chick did a (thankfully solid) poop on his hand. Speaking of the puppy, they are both even more convinced that we need one now, even in spite of Ethan’s nervousness. To be fair, it was the cutest sleepiest little thing. They were for sale too, luckily we have the old “we can’t have pets in our house” excuse for now. Which is probably a good thing because they were SO cute, it was dangerous. While there we just missed that lamb above being born, but I did get to see it wobbling about trying to stand up, which was adorably funny. Henry was a grumpy guts most of the day as he missed his nap, but then had a bit of a sleep. The farm is fantastic, and not too expensive. We paid £20 for a family ticket, and £1 each for the pony ride and train ride, everything else is included. They have stalls there too with crafts and art, and a nice area you can sit for picnics. There was food for sale too, but I didn’t check it out as we’d brought snacks. My only problem with it is that it’s in Reading!

We later had a yummy barbeque and then faced the trek home, which wasn’t too awful thankfully.

The Big Buzz is fast approaching, and the total keeps growing! I’m so excited, and just a teeny bit nervous 🙂 I’ll try to do a ‘Before’ post next, with some of the questions I’ve been asked, so if you’ve got one, let me know!

http://www.justgiving.com/GoBaldForFelix

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For Felix

Today’s post is a bit of a long one, but please stick with it to the end, firstly because it’s a serious one, and secondly because there’s a (possibly unexpected) bit at the bottom that needs attention. Let’s crack on!

This is Rudy, Felix, and Casper the dog. They are the children (and pet!) of my friend Jayne and her husband Russell.

Two years ago, Felix (in the batman shirt) was diagnosed with Acute Lymphoblastic Leukaemia (ALL). He was 3 years old. I can’t even begin to imagine the sheer terror and pain that Jayne felt when she heard the news.

In January 2012, Jayne spotted a bruisy rash on Felix’s legs, and trusted her gut and got him checked over straight away. It was a Sunday, and so it was an out of hours service. The doctor was on the ball, and sent them for blood tests the next morning, despite Felix seeming well. On Monday afternoon they got the diagnosis. By Monday evening they were in Bristol Children’s Hospital, ready to start chemotherapy.

Jayne was told that the Leukemia had been caught very early, thanks in part to the doctor who didn’t shoo away a worried mother with a child who looked fine, and in part due to her own knowledge and tenacity. I’m sure had she come up against an unwilling doctor, she would have pushed! thankfully she didn’t have to.

In the course of the next year, Felix had:

11 General anaesthetics
3 Bone marrow aspirations
11 Doses of chemotherapy straight into his spine
3 Doses of chemotherapy into the muscle in his leg
49 Doses of IV chemotherapy
205 Doses of oral chemotherapy

Among countless other things.  At the very beginning, Felix lost his hair. I remember Jayne telling us that she would make people look at his eyelashes, because she knew they would go. When he went to Rudy’s 6th birthday party a few months later, it was all gone.felix2But it was also on it’s way back. By the beginning of June, Felix had full thick eyelashes again. seriously, they would make a model jealous! He was also growing hair again, in fact by June he had a soft blond fuzz, that was clearly visible! He would lose it again with more treatment, and on his 4th birthday in the Autumn he was bald again. But what grew after that was thick, gorgeous, curly hair, which would eventually look like this in April 2013.felix4

Now, The big C is a really sad thing to talk about, of course it is. But. Felix is such a bright cheeky little guy. The photos that Jayne would share with us rarely showed a sad Felix, and we were more likely to see this:

felix3A three year old boy, just being three. Oh, this is a hospital corridor? I’ll just take my scooter down this fantastic flat surface. And if you really want the image of a child in a hospital bed, let it be this one.felix3What I love about this is that you could take away the hospital, and they’d just be brothers, sitting together, watching a movie. I mean, if you have to be very unwell, a big brother to look after you has got to be a must! Felix is a fantastic kid, and Rudy is a lovely brother.

Felix is now 5. It’s been over 2 years of treatment and he is now in the long-term phase and will be until April 2015. This still includes a huge amount of medication and one week in every four he has to take steroids. Jayne has had to write letters to the parents of his class at school to ask them to pay extra attention to illnesses – particularly chickenpox, measles, and shingles – and not send in sick children. The care they have to take is staggering, to count as exposed to an illness Felix only has to spend something like 30 minutes in a room with an ill child, not even actual contact. Anytime Felix gets a temperature, there’s a very high likelihood that he’ll have to go into hospital. Saying that it’s stressful is an understatement.

During his treatment, CLIC Sargent have helped him and his family, and countless others. They offer emotional, practical, financial, and clinical support. They also help with short holiday breaks and have ‘home from home’ services – 8 houses around the country within 10 minutes walk of the hospital, and they have designated CLIC nurses in those hospitals. I asked Jayne what CLIC meant to her, seeing as she obviously knows what they do better than I do, and here’s what she said:

“Felix was diagnosed with Acute Lymphoblastic Leukaemia in January 2012 at the age of 3 years and 3 months. We were all devastated and our lives were changed in an instant. CLIC Sargent were – and continue to be on a daily basis – an amazing support. We were transferred to a hospital two hours away from our home and were given free use of a beautiful Home from Home for the whole three weeks we were there. Now he is having treatment closer to home we have four wonderful CLIC nurses who offer excellent care and advice and even come to our home to do blood tests to save us a 40 mile round trip to hospital. There is a CLIC social worker who has helped massively with the associated financial implications of the diagnosis – Felix needs treatment until April 2015 and so I am unable to work anymore. CLIC Sargent truly is a fantastic charity and we are keen to support them in any way we can so that they can continue to help families during the worst time in their lives.”

So, with all of that, I thought, what can I do? And I landed on hair. It’s possibly the most obvious outwardly sign of chemotherapy. For a few years now I’ve wanted to donate my hair for wigs, but I could never get it long enough without layers, and now I finally do. But I’ve decided, it’s time to go big or go home, and I’m already at home. So, In around 10 weeks (mid june) I’ll be shaving my head for CLIC Sargent. I have this Just Giving page for any and all donations, which will be very gratefully received. There will be photos, oh yes. Before, after and in progress. My initial goal is to raise £200, So let’s get to it! Thank you 🙂

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