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. 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  *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 “> Mummy Times Two Linkys from the heart

World Mental Health Day 

World Mental Health Day 

Today is World Mental Health Day and, although it feels there is a ‘day’ for just about everything now and Twitter is always trending with one or another, I think this is a really important one to talk about.  

We are all aware we are suppose to be taking care of our bodies.   We take time to go to the dentist, opticians, chiropodist, yet if we are stressed, feeling down or unable to cope we just soldier on.

I am researching children and teen mental health and well being for a post I am writing with The Childrens Society. I had never realised how many people suffer with mental health problems. I started to think about friends, family and people I know who have or could be suffering from mental health issues.

I thought back to a school friend who battled with his sexuality and felt so down that he tried to take his own life. I thought of a friend whos dad was so depressed he felt he had no way out, leaving my friend fatherless. I thought of a good friend of mine who suffered badly with PTS as a result of his time served in The Falklands. I thought of my nan and how I watched her deteriorate from Alzheimer’s. I thought of bloggers I know who suffer with such bad anxiety that they find it a near impossible to leave their house.

It was while thinking about different forms of mental health, from post traumatic stress to post natel depression, dementia to bi-polar to stress, depression and anxiety, that I realised I was overlooking my own experiences with mental health problems, albeit not as serious or obvious as some.

I think it would suprise alot of people to know I suffer with anxiety.

I know what you are thinking…. Thats no suprise with sic children.  But it started way before the kids came along.

It first started at Primary school.

I started  suffering with terrible shortness of breath. I always found it really hard to explain to my mum and dad, but it was like I was breathing in, but no air was getting into my lungs. Once it started, it felt like it would get worse and worse. It could last anywhere from a few minutes to days. I would have to sit outside the headmasters office with a brown paper bag and practice slow, deep breathing into it.

Mum took me to the doctor and I was tested for asthma but all the tests came back normal.

I never really talked about it again for years, I would just try to get through it by trying to take my mind off it.  Sometimes that worked and sometimes I would end up in a panic and crying. Then, towards the end of primary school I developed a twitch. My nose would screw quickly like Samantha  from bewitched…..only I wasnt casting a spell!

We put it down to my fringe being too long and tickling my nose, so I grew it out. But the twitch didnt go, so we put it down to habbit as a result of the twitch from my fringe.  It sounds crazy now but It never occured to me that it could be anything more.

So, here I was, going through my teens, suffering with shortness of breath and a nervous twitch (as we called it)…. I was a right sort 😉

The shortness of breath was never constant.  I could go months without suffering from it, then, out of the blue it would hit me. I would go into a panic and have practice my ‘mind over matter’ technique.

Things finally got to a point in 2009 when I went back to the doctors, desperate for help.

I was staying in France with the Mikey, Harri and Charlie (who was about 10 months).

Mike had gone to portugal with some friends and was going to fly from Faro to France to meet up with us.

The whole time I was in France on my own my shortness of breath was unbearable.  I couldnt concentrate on anything and I felt like I was in a constant state of panic.

As a young mum (25) all sorts of things went through my head. Maybe I have lung cancer….. What if its my heart…..

Once Mike arrived at the cottage to spend the rest of the holiday together the shortness of breath dissapeared and I felt ‘normal’ again. He would wind me up (and still does) that I just cant bare to be apart from him – trust me, thats not true!

With the fear it might return as badly as it had in France I booked an appointment with my Doctor.

I sat and explained everything to him.  I told him all about the asthma tests when I was a kid to the horrible feelings in France.

He said with no uncertainty ‘You are suffering with stress and anxiety’

I laughed it off and explained to him that I was not stressed! In fact, I was completely laid back and never got stressed, thats what I was known for! Laid back, easy going Kate- always smiling and never stressed.

Apparently I was the perfect candidate for anxiety.  He told me that because I am never outwardly stressed, my body deals with it in different ways. In my case, through shortness of breath, my rabbit-like twitch and small panic attacks.

I left his office feeling relieved but also confused.

I was relieved that i wasnt dying! But confused as to how I didn’t know myself that I had been suffering with anxiety all these years.

As time has gone on it has become more obvious to me. I can almost predict when the episode will start. Flights and holidays…..a month or so before I will start feeling jittery. My breathing gets deeper as my shortness of breath kicks in and Mike and friends will comment on my twitch getting worse. My close friends will even ask me whats on my mind as they will know from my twitch how high my anxiety is. Sometimes my twitch gets so bad it gives me a headache as my whole face contorts.

Big events, weddings, parties and nights out will start me off. My dad was very poorly a couple of years ago and that sent my anxiety to a whole new level.

The last two months have been a challange aswell.  Mike has been working away and we have been trying to choose a high school for the boys. In fact, writing this has made me very aware at how anxious I am feeling right now.

There is no cure or immidiate fix that I know of and I count my blessings that my anxiety is not as debilitating as some people. I have learned how to cope in my own way.  I still practice mind over matter, a little like meditation and sometimes i will try to busy myself with something else. If it is really bad I will run a bath with a few drops of lavender and ylang-ylang oil and soak for a while…. that usually calms me down a bit. Sometimes nothing works and I just have to ride it out.

So, mental health can come in all sorts of forms and you never know who might be suffering.  That is why tolerance and understanding is a great quality to practice. Mental health problems are certainly not something we can control or just ‘get over’.

Everyone who knows me will probably be suprised that I suffer with this,  It is not something I tend to talk openly about, maybe I should. I certainly do not feel crazy or ill, but I have learned to try and listen to my body and when it tells me to chill out I try to do just that.

And luckily Mike has always found my twitch cute thank god!

Thanks for reading guys…..that was as good as a therapy session!

I would love to hear your experiences with mental health and anything you can suggest to keep anxiety at bay.

Please share awareness for World Mental Health Day

Love ya

Kate

Xxxx

World Mental Health Day 

World Mental Health Day 

Today is World Mental Health Day and, although it feels there is a ‘day’ for just about everything now and Twitter is always trending with one or another, I think this is a really important one to talk about.  

We are all aware we are suppose to be taking care of our bodies.   We take time to go to the dentist, opticians, chiropodist, yet if we are stressed, feeling down or unable to cope we just soldier on.

I am researching children and teen mental health and well being for a post I am writing with The Childrens Society. I had never realised how many people suffer with mental health problems. I started to think about friends, family and people I know who have or could be suffering from mental health issues.

I thought back to a school friend who battled with his sexuality and felt so down that he tried to take his own life. I thought of a friend whos dad was so depressed he felt he had no way out, leaving my friend fatherless. I thought of a good friend of mine who suffered badly with PTS as a result of his time served in The Falklands. I thought of my nan and how I watched her deteriorate from Alzheimer’s. I thought of bloggers I know who suffer with such bad anxiety that they find it a near impossible to leave their house.

It was while thinking about different forms of mental health, from post traumatic stress to post natel depression, dementia to bi-polar to stress, depression and anxiety, that I realised I was overlooking my own experiences with mental health problems, albeit not as serious or obvious as some.

I think it would suprise alot of people to know I suffer with anxiety.

I know what you are thinking…. Thats no suprise with sic children.  But it started way before the kids came along.

It first started at Primary school.

I started  suffering with terrible shortness of breath. I always found it really hard to explain to my mum and dad, but it was like I was breathing in, but no air was getting into my lungs. Once it started, it felt like it would get worse and worse. It could last anywhere from a few minutes to days. I would have to sit outside the headmasters office with a brown paper bag and practice slow, deep breathing into it.

Mum took me to the doctor and I was tested for asthma but all the tests came back normal.

I never really talked about it again for years, I would just try to get through it by trying to take my mind off it.  Sometimes that worked and sometimes I would end up in a panic and crying. Then, towards the end of primary school I developed a twitch. My nose would screw quickly like Samantha  from bewitched…..only I wasnt casting a spell!

We put it down to my fringe being too long and tickling my nose, so I grew it out. But the twitch didnt go, so we put it down to habbit as a result of the twitch from my fringe.  It sounds crazy now but It never occured to me that it could be anything more.

So, here I was, going through my teens, suffering with shortness of breath and a nervous twitch (as we called it)…. I was a right sort 😉

The shortness of breath was never constant.  I could go months without suffering from it, then, out of the blue it would hit me. I would go into a panic and have practice my ‘mind over matter’ technique.

Things finally got to a point in 2009 when I went back to the doctors, desperate for help.

I was staying in France with the Mikey, Harri and Charlie (who was about 10 months).

Mike had gone to portugal with some friends and was going to fly from Faro to France to meet up with us.

The whole time I was in France on my own my shortness of breath was unbearable.  I couldnt concentrate on anything and I felt like I was in a constant state of panic.

As a young mum (25) all sorts of things went through my head. Maybe I have lung cancer….. What if its my heart…..

Once Mike arrived at the cottage to spend the rest of the holiday together the shortness of breath dissapeared and I felt ‘normal’ again. He would wind me up (and still does) that I just cant bare to be apart from him – trust me, thats not true!

With the fear it might return as badly as it had in France I booked an appointment with my Doctor.

I sat and explained everything to him.  I told him all about the asthma tests when I was a kid to the horrible feelings in France.

He said with no uncertainty ‘You are suffering with stress and anxiety’

I laughed it off and explained to him that I was not stressed! In fact, I was completely laid back and never got stressed, thats what I was known for! Laid back, easy going Kate- always smiling and never stressed.

Apparently I was the perfect candidate for anxiety.  He told me that because I am never outwardly stressed, my body deals with it in different ways. In my case, through shortness of breath, my rabbit-like twitch and small panic attacks.

I left his office feeling relieved but also confused.

I was relieved that i wasnt dying! But confused as to how I didn’t know myself that I had been suffering with anxiety all these years.

As time has gone on it has become more obvious to me. I can almost predict when the episode will start. Flights and holidays…..a month or so before I will start feeling jittery. My breathing gets deeper as my shortness of breath kicks in and Mike and friends will comment on my twitch getting worse. My close friends will even ask me whats on my mind as they will know from my twitch how high my anxiety is. Sometimes my twitch gets so bad it gives me a headache as my whole face contorts.

Big events, weddings, parties and nights out will start me off. My dad was very poorly a couple of years ago and that sent my anxiety to a whole new level.

The last two months have been a challange aswell.  Mike has been working away and we have been trying to choose a high school for the boys. In fact, writing this has made me very aware at how anxious I am feeling right now.

There is no cure or immidiate fix that I know of and I count my blessings that my anxiety is not as debilitating as some people. I have learned how to cope in my own way.  I still practice mind over matter, a little like meditation and sometimes i will try to busy myself with something else. If it is really bad I will run a bath with a few drops of lavender and ylang-ylang oil and soak for a while…. that usually calms me down a bit. Sometimes nothing works and I just have to ride it out.

So, mental health can come in all sorts of forms and you never know who might be suffering.  That is why tolerance and understanding is a great quality to practice. Mental health problems are certainly not something we can control or just ‘get over’.

Everyone who knows me will probably be suprised that I suffer with this,  It is not something I tend to talk openly about, maybe I should. I certainly do not feel crazy or ill, but I have learned to try and listen to my body and when it tells me to chill out I try to do just that.

And luckily Mike has always found my twitch cute thank god!

Thanks for reading guys…..that was as good as a therapy session!

I would love to hear your experiences with mental health and anything you can suggest to keep anxiety at bay.

Please share awareness for World Mental Health Day

Love ya

Kate

Xxxx

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