Fighting for Eva, fighting DIPG

Fighting for Eva, fighting DIPG

Friends of our family were given some news a couple of months ago that ripped their world apart. Their five year old daughter, Eva has been diagnosed with DIPG, a rare form of  cancer. Her brain tumour is inoperable given the lack of research the treatments are limited. image As a mum to a five year old girl myself my heart instantly broke for them all. I can not even begin to imagine how they begin to digest and deal with this but I have been following their story through their Facebook page and they are truly inspiring. Funding and awareness is what this condition desperately needs.  Please take time to read through this blog and share on all your social platforms,Twitter,  emails,  Facebook, Instagram. Share it for a little girl, to help her and her family fight and find a cure for her and all the other children affected by DIPG. This is a piece written by Eva’s daddy ‘What is DIPG like for the parents? All the stuff you might imagine, we are heartbroken, crushed, angry, scared, sometimes despondent, sometimes highly focused. All of these things mashed together fighting for dominance. With all these emotions, I feel I can only show one face to the world, the one where we are highly focused in fighting for Eva’s life. Back in April Eva’s MRI scan revealed she had a tumour, but at that time we had no idea what exactly we were dealing with. A few dark days followed where Eva’s condition detreated to the point she could no longer swallow her food. She lay in bed and watched TV unable to do anything unaided. As a parent, I found this the most difficult stage so far. She was scanned on a Thursday and we couldn’t get transferred from the local hospital to Royal Marsden until the following Monday, because NHS essentially closes down on the weekend. Three long days later Eva was transferred to RMH she travelled with Mum in an ambulance and I drove down to meet our consultant and hear the prognosis. In retrospect, I think I knew on some level the severity of the tumour. It had been written all over the doctor and nurses faces at Margate hospital. Everyone we dealt with was careful not to give us too much information, or hope. The first time I heard the words Diffuse Intrinsic Pontine Glioma (DIPG) was in our consultant’s office at Royal Marsden on Monday 18th April 2016. It took a few days for it to properly sink in, but those words are essentially the worst words you could hope to hear in our position. DIPG is incurable. DIPG is inoperable. DIPG has a survival rate of 0 to 1%. Worse, of those 0 to 1% some cases may have been misdiagnosed. Why? Because DIPG is not routinely biopsied like every other type of tumour. Why? Because thirty odd years ago someone decided an MRI scan was enough to diagnose DIPG, and biopsy was an unnecessary risk. So while every other brain cancer has live samples stored in databanks across the world, and used for decades by researchers to study towards a cure, DIPG was forgotten. That is until a few years ago when French researchers decided to start taking tissue samples from DIPG patents. This has consequently opened up exciting new opportunities for DIPG research. They have finally identified a genetic trend that follows in the majority of tumours, particularly in ‘typical’ cases of the average age group of DIPG patients. That’s great, right? Not quite. DIPG is still far behind other cancer treatments, not only because of the lack of knowledge, but due primarily to the lack of funding. DIPG is ultra-rare, but there are still thirty to forty children diagnosed each year in UK. Over three-hundred children in US. It makes me sad that the public get so aroused by stories about a kid that falls into a Gorilla pen, and God forbid, the zoo keepers shoot the Gorilla. Yes it is sensational, but if the public care so much about the death of a Gorilla, or the safety of Zoos in general, why aren’t they just as passionate about our children dying each year, consistently, from a disease that could potentially be cured? What would happen if forty kids a year were killed by terrorism in UK? I suspect the public would be very aware, and I think the government would try very hard to stop it. DIPG is perhaps not as newsworthy, but the end result is the same. Rather than a quick explosion, DIPG children slowly lose control of their bodies. Their minds completely unaffected, still alive and bright, trapped inside a body that shuts down until they are paralysed inside themselves, until their brain can no longer control breathing. Then they die. And this happens again, and again, and again. During our first meeting, our consultant explained in black and white what it meant to have DIPG. He was very careful not to offer us hope. Radiotherapy is the standard treatment. It’s palliative, and gives maybe an extra three months. In our case, it transformed Eva from a shell of her old self, back into the girl we remembered. We are a few weeks on from radiotherapy now, and still a week away from her second MRI scan and we have our daughter back. Our consultant explained that most cases will relapse a few months after radiotherapy. So what now? Well, most people like to reassure me that “miracles do happen,” or ”focus on the survival rate.” Fantastic advice, which I respond to in the following way. You take off on a flight, sitting to your right is your wife, to your left your three children eagerly anticipating their holiday. The aeroplane reaches cruising altitude at 30,000 feet and you hear an urgent beep from the tannoy. The captain’s voice washes over the cabin, “Ladies and Gentlemen, I’m afraid we have a technical problem. The engines have failed and there’s a 99% to 100% chance we will crash into the Atlantic ocean. Sorry for the inconvenience.” I’d like to ask the “miracles do happen” people, and the “focus of the survival rate” people, if in the above situation they would sit back and watch a film content they were in that 0% to 1% bracket, or would they ponder their impending doom? Yes, miracles do happen, I’m sure, but people need to understand that in this kind of situation you need to mentally prepare yourself for the terrible, unthinkable, heart-breaking, yet most likely outcome. Even if it makes for an awkward conversation, as a parent I simply don’t have the luxury of wishful thinking. In addition to our RMH appointments, my wife and I reached out for a second opinion. Not because we don’t have faith in our consultant, but because we have no medical training and therefore need to hear multiple expert opinions and compare against each other. And whether we want to believe it or not, medical research is still a business, and business is inevitably surrounded by ego, politics, and IP protection / publication races. So where does this leave us? We are left with few options. As DIPG parents it is up to us to research available options. To fight to get our child into the right treatment or trial. It’s up to us to raise funds to pay for these treatments, or to use to fund research that might just be the breakthrough Eva needs. As DIPG parents, we are in the unique position that our consultants can’t direct us to a “proven” treatment. We are left to navigate the minefield of social media and sift through the opinions (often dressed up as facts) of untrained parents and advocates of certain treatments. The hard fact is that no treatment or trail is currently offering proven benefits over any other. Some treatments are better promoted than others for sure, some fall completely under the radar. What way do we turn? After considerable debate, we decided to ask for a referral for CED treatment in Bristol. This was due to the fact it’s only a couple of hours drive from us, and there is anecdotal evidence that some children are responding well to treatment. After the mandatory losing of the referral (something that’s happened on every single referral we’ve had since GP diagnosis – chasing referrals is part and parcel of the job), we finally heard back from Bristol and they are over capacity. Unfortunately, this brings us back to my earlier point. DIPG is massively underfunded, so even if your child is incredibly unlucky and has this ultra-rare children’s disease, the chances are you will not get her into your treatment/trial of choice. Fucked up, right? Welcome to our world.’ Please spread the word,  sign the petition and donate whatever you can. Cancer isn’t picky, it chooses at random,  do this for Eva and for all the children that DIPG is attacking, and all the children it might pick next. https://petition.parliament.uk/petitions/131556 https://gofundme.com/eva-sangels https://m.facebook.com/groups/105266339893351?tsid=0.27571345839086847&source=typeahead image *Since this was written little Eva passed away just before Easter. Instead of celebrating her sixth birthday with cake and a party, Evas parents were visiting her grave. Since writing this I have discovered how many children are cursed by this awful disease. 17th May is #DIPG go gold and grey… Please wear gold and grey to help raise awareness of this awful cancer that is stealing our children. REMEMBERING EVA, RIP ANGEL Mummy Times Two “> Mummy Times Two Linkys from the heart

What a week

What A Week

What a draining and eventful week.  Not only for me, but the whole country! Britain voted to leave the EU! Who saw that coming? Ironically, the remainers are accusing the leavers of dividing Britain. Although,  it is this attitude that I believe is making a divide. Don’t get me wrong, I am as nervous as everyone but the backlash has disappointed me slightly. Ever the optimist, I would have liked to think that now is time to come together and make our children’s futures as great as we can. Anyway,  enough of politics,  I’m sick of it! After spending Friday night celebrating a friends hen do I spent all day yesterday on the sofa. I haven’t had a hangover like that since I was 21! image What was I thinking!?  Surely the fifth sambuca shot should have been enough!  I have no business behaving like that now,  I’m a mum of five!….  F#@k it, it’s because I’m a mum of five I behave like that! image Saturday night I watched Anthony Joshua defended his title without breaking a sweat and Adele had me in tears watching her at Glastonbury. George is teething badly at the moment.   Our house has a constant moan in the background,  poor little mite! Calpol has been stocked up and the powder that looks like cocaine wraps. image To finish the weekend we have spent a lovely day at the school fete. Reminding me of everything I love about British tradition, spending a overcast summer afternoon with family and friends,  drinking pimms and playing Tombola!

What a week

What a draining and eventful week.  Not only for me, but the whole country!
Britain voted to leave the EU! Who saw that coming?
Ironically, the remainers are accusing the leavers of dividing Britain. Although,  it is this attitude that I believe is making a divide.
Don’t get me wrong, I am as nervous as everyone but the backlash has disappointed me slightly.
Ever the optimist, I would have liked to think that now is time to come together and make our children’s futures as great as we can. 
Anyway,  enough of politics,  I’m sick of it!
After spending Friday night celebrating a friends hen do I spent all day yesterday on the sofa.
I haven’t had a hangover like that since I was 21!
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What was I thinking!?  Surely the fifth sambuca shot should have been enough!  I have no business behaving like that now,  I’m a mum of five!….  F#@k it, it’s because I’m a mum of five I behave like that!
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Saturday night I watched Anthony Joshua defended his title without breaking a sweat and Adele had me in tears watching her at Glastonbury.
George is teething badly at the moment.   Our house has a constant moan in the background,  poor little mite!
Calpol has been stocked up and the powder that looks like cocaine wraps.
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To finish the weekend we have spent a lovely day at the school fete.
Reminding me of everything I love about British tradition, spending a overcast summer afternoon with family and friends,  drinking pimms and playing Tombola!

Shopping for a large family

Shopping for a large family

I think the key to shopping for a large family is bulk and planning! I tend to split my shopping into various trips. I pay a yearly membership to Costco so that I can buy alot of our shop in bulk. I buy toilet rolls, washing powder, fabric conditionor, cleaning products, nappies and baby wipes. I also buy things like ketchup, seasonings, tea bags, coffee and rice. Costco also have really nice meat, their pork belly in particular and I find it hard to resist their caremilsed onion sausages! On average my shop at Costco comes to £80-£100 and that would last me at least 6 weeks. The problem with costco is that they always have loads of other stuff that I want to buy but shouldn’t.  You know, the sort of stuff that makes Mike sweat when I start browsing,  pillows, candles, coffee machines, throws (you can never have enough throws),  books and home decorations. You can guarentee that regardless of how quickly Mike wants to get around and tries to steer me away from anything that is not on my list, if there is a bar b que, tool set or ‘boys toy’ on offer it will add an extra hour to our trip! I find taking a list always helps me stick to what I really need and also means I don’t come away forgetting any essentials. Once I left without nappies and loo roll but instead had two paddling pools and a football goal! Next stop is Aldi where  I stock up on all our cupboard essentials like crisps, biscuits, cereals, squash, tins and pasta etc. I also buy their prosecco, wines,  cheeses and ham. This leaves my regular ‘pop in’ to Co-op or sainsburys for milk,  bread, fruit and veg much less of a burden. I can preach this, but I really need to stick to it myself. As much as I know I should do it and on an organised month I am religious, I also have months where I spend £200 more than I need to because I leave it all to the last minute and run into sainsburys, hungry and with no plan of action! There are also weeks/months where I can get my a#?e to the supermarket which is when sainsburys delivery gets used. Speaking of the continence of delivery, I am really tempted to try one of these fruit and veg delivery services where they deliver you a box once a week….does anyone have this?  What are your thoughts? I have mentioned in previous blogs I tend to cook alot of big pot dishes such as Curries, pasta, shepherds pies, lasagne, chilli, stews, they all work out cheaper than buying ready prepered food for us as a big family.

Reception Friendship troubles

Nothing prepares you for the heartache when your five year old daughter cries herself to sleep because she doesn’t want to go to school.
Why doesn’t she want to go to school?  because her friends don’t want to play with her anymore.
Libby is still massively emotional and tired from our holiday so I wrongly dismissed her feelings when she first told me.
‘play with someone else’ ‘you will be friends again tomorrow’ ‘stay away from them’
When she cried all evening and on the way to school the next morning I realised there really was something wrong.
I mentioned it to the teacher when I dropped her off.
I told the teacher that I don’t doubt it is little more than girls being girls.  The problem is, Libby has four brothers, and boys just don’t play like that.
She has never been told ‘I don’t want to be your friend’ or ‘you cant play with us’ and she doesn’t really know how to deal with it.
Her teacher was fantastic, not playing up to her to much, but reassuring her that she will help.
I know she will be fine, the girls are her friends and remembering back to when I was in primary school, girls are always falling out.
Especally as when I pick her up she skips over to me with a beaming smile, telling me what a great day she has had.
I just hope tomorrows school drop off will be better. No matter how much I tell myself she will be fine, when your baby clings to you and begs you not to leave her its hard to shake off that gut wrenching, sick feeling all day.
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When you nearly kill your husband

When You Nearly Kill Your Husband

How about when you are peacefully sleeping and your husband wakes you up asking for his phone. You tell him you don’t have it, but he insists before you fell asleep you put it on charge next to you. Even though you have absolutely no recollection of this you bolt up and start looking for the phone……. Nowhere to be found! He is absolutely certain, after you ask numerous times, he brought it upstairs and gave it to you So you check everywhere, strip the bed, take the duvet out of the cover incase the phone has some how maneuvered itself down the bed,  in-between the buttons and into the sheet. No sign of it. You get on your knees and check under every corner of the bed while he lifts it. Meanwhile the light is now full on,  risking waking the baby. You check drawers,  windowsills,  down the toilet,  in the bath…. Even though twenty minutes ago you were catching your zzzz’s. While hubby stomps around the room insisting its gone,  you try to rationalise unless a pixie has come in and taken it, it would have to be in the room. You then sit up on your phone and work out how these Tracker things work on your phone so you can locate it in the 220 square foot room you are sitting in! but neither of you can remember the f@cking email address. You finally take the search that step further and decide to go downstairs to re -trace his steps. imagine your suprise when you hit the bottom step and see the phone sitting on the sideboard in the hallway. WHAT A PR!CK The next bit? You prepare your rant and outburst at him for being that stupid. When you walk in the room,  show him the phone,  and before you can get your words he bellows…. ‘Oh my God.. You just took that down there!!!!  You found it here and took it down there ‘ What you want to say is ‘ you f@cking dick, you woke me up,  had me looking everywhere, nearly woke the baby up and then have the gaul to not apologise, you are a total walking W@nker!!!!!!!’ But you just hand it to him,  tell him politely to f@ck off, Get into bed and leave him with the thought that he is a complete ignoramus! Then write a blog about it! Ps…..He apologised in the end 😂😂😂

Orlando heart break 💔

Orlando heart break 💔

Before you read this, I am not big on politics, this is just my opinion on the latest mass shooting in America. From what I have read recently, a bi-polar, steroid pumping, wife beater who had shown such aggressive homophobic views that his colleagues had been forced to leave the security firm he worked at because they couldnt tolerate him anymore. This man was arrested and questioned twice by police after being linked to various ISIS radicals and was on their ‘watch’ list. Somehow, because of the gun laws,  this lowlife was able to walk into a sporting goods store and buy a assault rifle and hand gun!?!? What the f#ck!!!!!!?? I am proud of our gun laws in this country and the security around them. Mike holds a UK shotgun and fire arms license. To obtain this licence he had to submit an in depth form to the firearms department, where they carried out criminal record checks and checks on his background. Once that was approved the local firearms officer had to visit our home. He analysed Mike, his state of mind,  his relationship with me,  his motives for wanting to own a gun and exactly where it would be kept. Once he had satisfied himself that Mike was responsible enough and low risk he gave him a thorough briefing on what it is to hold a gun license in the UK. He told Mike that along with a gun licence becomes a huge responsibly. If your circumstances change in anyway your licence is revoked immediately . My point is,  it would have been unlikely that the vile scum that destroyed so many lives in Orlando would have ever had a license here or legal access to a gun. Don’t get me wrong,  this doesn’t mean things like this could never hapen here, I’m sure you can illegally get your hands on a gun, but it makes it much harder. The majority of mass shootings in America occur because they have easy access to a gun. The unstable people responsible for these atrocities would be highly unlikely to have ever obtained a licence or a gun in the UK. Im not even going to go into the amount of accidental child shootings! I think British people in general have much more respect and awareness of the dangers of guns. The American attitude seems much more blazey. I certainly don’t think guns should be banned anywhere. I do,  however feel that the US could take our lead when it comes to this. This was a recent BBC News Article on Us shooting statistics. http://www.bbc.co.uk/news/world-us-canada-34996604 America is without a doubt one of my favourite countries in the world, hence why at every opportunity we are back visiting. The week before the Orlando shootings I was in Disneyworld with Mike and the children. It was the 25th Anniversary of GayDays,  one of the largest Gay celebrations in the world. It is estimated at least 50,000 Gay men and women attend. The first Saturday in June they visit Magic Kingdom, Orlando …..the same day as we were there! It was fantastic!  What I loved was the complete normality, love and acceptance of everyone there. image So,  when a complete no mark,  a screwed up, evil c#@t who probably struggled with his own sexuality manages to get his vile hands on an assault rifle and hand gun and opens fire on one of our most colourful and beautiful communities then we must stand together and realise, for every evil,  mental extremist there are far more good, decent,  people full of love, acceptance and understanding in our world. We Stand United My love, prayers and thoughts go out to the men and women and their friends and family involved in the Orlando shootings 💔

Sleepover without the ‘sleep’

Sleepover Without The Sleep

My father in law looked at me totally baffled yesterday as he was trying to work out exactly which children were staying at my house and which werent. Two of my kids had stayed at my friend, Rosies the previous night and she had just turned up to drop them off. In the mean time another friend, Claire was leaving my house. ‘ I’m taking Charlie!’ she shouted ‘ok, leave Caolan with me !’ I yelled back. Rosie then went to leave,  turned to her two girls and told them to be good and she would see them in the morning. I could see my father in law trying to work it out like a tricky maths question.  You know the ones,  if three men got in the boat,  one fell out and they pick up four, how many are left in the boat? ‘so who is here?’ he asked ‘ Mikey,  Harri, Libby, Darcie, Sydney, Callan and George ‘ He looked totally bemused, I’m not sure if it was the casual way we had swapped children like handbags or the fact I had seven children for the night.  😂😂😂 They all made a camp in the living room and went to sleep. …..our at least I thought they had. I woke up to a text from a friend of mine ‘ Mikey on Insta at 1am 😂’ Along with a pic of her INSTAGRAM with Mikey liking her photo at 1am! image When I came downstairs I was greeted by Harrison ‘ mum,  we did it!! We completed the all night challange’ Oh good im so pleased that  after a week, you finally get over the jet lag and then you stay awake ALL Night. They think they are smart….  Let’s see how smart they feel when they realise bedtime has been moved to 6 tonight!  😏 In the meantime,  let’s hope Claire and Rosie are still my friends after they read this 😰

Tanorganic Self Tan

Tanorganic Self Tan

I have tried so many different tanning products but I think I’ve hit the jackpot! After a three week holiday in Florida I came back hardly any darker than when I left. Being a natural redhead I have fair skin and although I do eventual get a little colour it takes ages. Since my mum had a melanoma removed a few years ago I am super paranoid about slapping on sun cream. Also, my tutor at beauty college drilled into us how much damage the sun can do to your skin and how quickly it ages you. For these reasons,  even when I am in the sun I wear a higher factor. The problem is,  like everyone, I feel so much better when I have a bit of colour. I do love a spray tan but I prefer home products so that I can keep my tan looking consistent. The only problem is home tans can be really difficult to apply without looking awful. I trained with Fake Bake for my spray tanning and so far their products have been my favourite, but this beats them hands down. On the plane on the way back from Florida I saw a product advertised in The Duty Free mag. I asked the stewardess about it and she said she uses it and swears by it so I thought I’d take a punt. Tanorganic Self Tan oil image It is a dry oil so it massages straight into your skin and doesnt leave your skin feeling greasy or sticky. It’s completly organic made with some of my favourite oils such as Annatto, Argan,  Beetroot extract, chamomile,  coconut and Aloe Vera aswell s many more. http://www.tanorganic.com/uk/ingredients/ It also contains no parabens and is great for your skin. I applied it two days ago and I am so pleased with the results. It is easy to rub in and It leaves a beautiful,  natural looking tan. Everyone that I have seen has assumed it is my holiday tan (secrets of of the bag now 😛) It has left my skin feeling great and it doesn’t have that fake tan smell. It is sold on Amazon or in Holland and Barrett and costs £24.99. Although, if you are jetting abroad keep an eye out at Duty Free as I paid £20. To read more about Tanorganic click the link below www.tanorganic.com Being a fairly new Blogger and really excited about my new product I didn’t think to take a before picture before I slapped it on. I am going to do a review on a few different tans over the next couple weeks and will include before and after pictures in that, including Tanorganic. image

Jet Lag

Jet Lag

And so it has arrived…. Jet lag day! George has been sleeping on and off all day and this evening I’ve started to check for the 666. It’s like my front door is the gates to Hell. image Libby has been asleep all day and just woken up (11.25pm) and she is now in the most aggravating mood. So far I have been followed around the house half crying,  half winging, nagging at me about the most ridiculous things ‘ I’m not sleeping on my own! ‘ (feet stamping) ‘ where is my candy floss?! ‘ ‘ I’ll get my TV and put it in your room ‘ ‘ you didn’t even get all my friends at school a present from America’ ‘I hate America’ ‘ where is my candy floss!? ‘ ‘ Why did we have to come home!? ‘ ‘I love my house’ ‘I hate my house ‘ ‘ Where is my candy floss?’ ‘Im not sleeping,  ever! ‘ ‘I want your phone ‘ ‘I want dad’s phone ‘ ‘I don’t know know where to sleep,my room is scary ‘ ‘ when am I having a sleepover with my friends?’ ‘ you promised me we could make fairy cakes’ (I didn’t) image ‘I’m so starving, do you even care!? ‘ then continues to say no to everything I offer her….. YOUR NOT HAVING THE FU@KING CANDYFLOSS I’ve just agreed to something either genius or seriously bloody stupid. Seeings as my two youngest are driving me mad,  ive let Libby sleep with George so they can keep eachother amused and aggravate eachother. image Meanwhile, the the older boys have been asleep since 3pm this afternoon.   Will they sleep through? our can I expect them awake in a couple of hours???? It’s not all bad,  I get to look forward to the school run in the morning 😣