Please help Sam Brown, Harry's classmate and friend.

https://you.38degrees.org.uk/petitions/nhs-england-s-scorecard-discriminates-against-treating-ultra-rare-diseases

Please click on the link above and sign this petitician and share with your friends to sign too.

I do not normally do this, but Sam's situation is different to many asking the NHS to fund drugs.

Why? Because Sam has been on a trial for 2.5 years and so the benefits to him have have been measured and quantified. The drug has now been licensed, which is testament that it is beneficial to children with Morquio Syndrome. The drug has to go to a panel for funding to be agreed for Sam to continue having the drug. The petition is about getting the score card system changed with regards how new drugs are scored in relation to those affected by rare diseases, child or adult. With the current scoring system it seems unlikely that drugs for those with rare diseases will receive funding. Signing the petition raises the profile of this situation and hopefully will reverse the scoring system, so all diseases needing new drugs to limit the effects, will get a fare crack at being funded. 

Sam is age 6. He has a rare life limiting disease called Morquio Syndrome, which is a type of MPS - a group of ultra-rare genetically inherited diseases that affect children's development in different ways. Neither Katy nor Simon knew they were carriers of the gene that causes the disease, until they started having tests to get to the bottom of Sam's physical development delays, when Sam was a toddler. 

There are only 105 sufferers in the UK. the disease causes progressive physical disability, shortness of stature and significant health problems in adult life often leading to a significant shortening of life expectancy and reduction in quality of life. Sam has been receiving the drug Vimizim (elosulfasealfa) via a clinical trial of treatment at Royal Manchester Children’s Hospital for two and a half years. The drug received licensing approval in the EU in April 2014 – meaning that it is approved as ethical, safe, and that it delivers the proven clinical benefits. A separate decision will be made on the 16th  December as to whether the NHS will be willing to fund the drug in the UK. If it is not funded, Sam’s treatment would stop unless the drug company approved a short extension of treatment on ethical grounds whilst it fought that decision. The drug is a man made enzyme, replacing the one Sam doesn’t have. Its aim is to slow, and in the best case stop the progression of the disease. However pre-existing impacts of the disease cannot be reversed ... meaning that if treatment stopped even for a short time, there would be irreparable consequences. The drug is having a significantly positive impact on Sam – he has grown, his posture and stature is better, and physically his abilities have not deteriorated at all, in fact they have improved. Health wise he has been less prone to chest infections, and his hearing has been normal for two years. Sam not receiving the drug is unthinkable. The consequences are unbearable.

Sam could end up immobile within a few years, which would mean he would need significant services involved with managing his care needs. The drug Vimizim could hold the degenerative effects of the disease for many years, giving Sam an increased quality of life that previously could only be dreamt about. Vimizim gives Sam hope for a brighter future. 

Being part of the trial has been a huge huge commitment, Sam misses a day a week of school and it causes significant family upheaval. If it didn't work and give Sam significant benefits to the quality of his life, the upheaval would not be worth it. 

Thank you for reading this x 

Remembering .........

I have just tried to post this update to Facebook, but it won't let me! It says the content contravenes facebook policies! So here it is, where I can freely post it!

3 years ago today Harry had not one, but 2 ultrasounds on his abdomen at LGI.  2 weeks prior my pleas for an ultrasound had been ignored during a stay at Airedale hospital. He only had an x-ray, which just highlighted constipation!

On this fateful saturday evening I was told on my own (Paul was at home with Callum), in the parents room on ward 51 that Harry had a large tumour sat on his adrenal gland, possible into his kidney too. The tumour stretched right across his abdomen. I heard the words Neuroblastoma cancer for the first time. A lot of the conversation is a blur, but I distinctly remember being told that the treatment plan would involve us having to take time off work and it would last for months (not wrong there!). Wow I thought, money, Callum, our family.....

So we were catapulted into the world of oncology. 

Within 1 week Harry had, had several anaesthetics, scans and one big biopsy, which involved a 9 inch incision. He also started chemotherapy;  had his first blood transfusion; his first NG tube; his first port was inserted during his biopsy, which has been accessed via needles,  so many, many, many times for treatment, blood tests and for the many blood and platelet transfusions that kept him going. 

Our world was turned upside down....

So 2 years ago we were praying that the treatment would be a success and the nightmare would be over, alas not so.

1 year ago, we prayed that Harry would make one more Christmas and have quality of life to enjoy it. Our wish was granted!

This year, we are nursing fractured hearts. Working our way through the mist of grief. Grief is a form of disability, but it is masked, not easily visible to most and unrecognised. A broken heart is what we have. Like having a disability we have good and bad days, we smile,; we laugh; we cry. Each and every day we think of Harry and have numerous private gulping moments. As time passes we get better at putting a mask on. 

The lesson is to learn to fight, carry on and not let cancer consume or define us. 

Life is for living, none of us knows when our journey will end. 

So to mark the first anniversary of Harry's passing, we will be having Harry's ball at The Craiglands Hotel on 25 th April 2015, in aid of Nuzzlet's farm and Candlelighters. The theme will be pirates, a theme very close to Harry's heart. Tickets have now been printed and are available.  Inbox me for more information or how to pay. Cheques should be made payable to Harry's Ball. Excited.com! 

Remember:

Live, love, laugh,

because Harry did! X

The picture below of Harry was taken in September 2012, post radiotherapy. He was slipping through our fingers right before our eyes, constantly vomiting from the effects of the radiotherapy on his abdomen. I pleaded yet again for him to be admitted. Eventually at the end of August he was readmitted and commenced on TPN (total parental feed via his port). Fortunately he began to regain strength, but not before one of his lines in his port became infected! The trials and tribulations to just try and seek survival. The amount of machines and fluids that Harry is attached to speaks volumes! The path of childhood cancer is a long and winding one and effects not only the patient and their family, but a community too. 

 

The listening project radio 4

Tomorrow Wednesday oct 29 th Janey Webb and I will be featured in The Listening project on radio 4 at 10.55 am.

We did an hour long talk a few months back about Harry and the feature will be an edited version! 

The hour long talk will be archived in the national library!

No idea how the edited version will come across, but proud to make a contribution!

http://bbc.co.uk/listeningproject

Harry's birthday.

8 th October 6 months on.

Today marks 6 months of living without Harry. The truth is that it doesn't get any easier to live without him. There are days when it seems very hard to continue to function and the tears of sadness are harder to push back behind the mask and other days whereby I can function and get on with life and the tasks that lay ahead. 

I last wrote on here at the beginning of September just before Callum started school. On his first day I took photos of Callum in his school uniform and as you can see I got the closest I could to having both my boys in school uniform together, by Callum holding his brother's picture whilst I snapped him! Callum felt very proud to do this too. I took Callum into the main school entrance to hand some forms in and immediately found Harry staring at me! The book that Harry's teacher made up, which had Harry's photo on the front, was propped up on the far wall, facing me! It felt that Harry was still a part of the school. Seeing the photograph made me feel very emotional, but I held it together for Callum! It was a beautiful sunny day and some of us mum's met for lunch after and managed to enjoy the rays, before pick up time. 

Then on Friday 12 th September it was Harry's 7 th birthday. It was a very hard day. Tears were not far away at all. Paul and I went for a walk whilst Callum was at school and we talked about how Harry brightened up our lives and how excited we were when he was born and of course of our great MISS of him. We wanted to mark Harry's birthday as a positive and so when we collected Callum after school we went and bought a helium balloon and walked up to Harry's tree, where we sat on the bench up there and looked out at the stunning view. Callum let the balloon off into the sky and we watched with tears of sadness as it floated high up, until it was a tiny dot in the sky. It has always been a tradition in our house that each of the boys got a small present on the other's birthday, so up on the chevin we gave Callum a small present to open, it was 'mayday' the fire engine from the film 'fire and rescue'. Callum was excited and pleased to receive this. We then headed down and met Granny and Grandad up at our house for fish and chips. I'd made buns in the morning and put a candle in one for Callum to blow out. He wanted to sing Happy Birthday, which he mainly did on his own as we all had huge lumps in our throats as it just wasn't right that Harry wasn't physically with us. I felt it was very important for Callum to understand that it was Harry's birthday and that he is still very much a part of our lives. We bumped into Callum and Harry's nursery owner on the Sunday and Callum was gushing away to Anna how Harry had, had a birthday on Friday and that he was 7 now, but up in heaven. He told her how we had let a ballon off and had fish and chips for tea. Callum was proud, not sad about it all. Children are wonderful in their approach, so fresh and vibrant! 

The Whartons School's parent association have bought a small wooden play pirate ship for the playground with a plaque 'Harry's Galleon' attached and this was opened by Callum snipping the paper chains that his classmates had made. Just prior to this, the school had, had a short school assembly, whereby a shield that we have bought called 'the Harry Buckley Award for Creativity' was introduced. We were able to attend this assembly, which focused on Harry's love of all things crafty and it was lovely to hear the children talk about their key memories of Harry making things. The award will be presented each term to a child whom has been the most creative. Creativity was discussed and how this can be in many mediums, such as dance, music, crafts, paints, models, poetry etc! The school will be divided up into 3 age groups, each age group will be given a term whereby a child can win the award and have their name engraved on the shield. It feels a positive way of keeping Harry's memory alive, which I feel will help the other children as well as Callum. 

So the weeks have drifted by and we find ourselves in October. The weather has turned and my sandals have finally been swapped for winter boots. 

I found out at the weekend that a girl of similar age to Harry, has been admitted to LGI. I read the entry on Facebook in huge disbelief that she had cancer for the second time. I clearly remember her coming onto ward 31 with her parents when she was first diagnosed with a Wilm's tumour, we shared a bay for a few days, before we went home and they were left to embark on that hugely strange introduction to the world of oncology. Well, it seems it is not a relapse of Wilm's, but a new cancer has emerged, probably a Lymphoma. Having been cancer free for over a year, the nightmare begins again, the tests, the anaesthetics, the biopsy, the cannula, the frequent blood tests, the port being re-inserted, the tears, the signing of consent forms, THE UNKNOWN. 

Callum and I visited Ruby and her mum at lgi on Sunday. They live in Hull, which complicates things further, but Leeds is the nearest oncology specialist centre. We took art and crafty things for Ruby and a microwave meal for mum. 

Prior to going I asked Callum if he would come with me and he had no hesitation in saying yes. I showed him a picture of Ruby in bed at lgi and he immediately spotted the toy minion she had and so he wanted to add a packet of haribo minions to the bag! A while after our conversation, whilst Callum had breakfast he said that he didn't want to go to the hospital. It was very clear that Callum was thinking about Harry. He drew a picture on the competition page of his Peter Rabbit comic of Harry's face, with a tube coming out of his nose, which was attached to his feed bag. Not the average picture drawn by a 4 year old! I had to cut the picture out and send it off, I did add what the picture was about! 

Then Callum said that he wanted to go to the hospice and see Harry again. This began unfolding a conversation I hadn't expected! I had to remind Callum that he saw Harry's body being transferred by daddy into the red coffin and that he was no longer at the hospice. This then led us to discuss where Harry's body was. We never actually told Callum that Harry was cremated and what this meant. I had felt at the time that it had been enough for Callum to have seen his dead brother, at home, in the hospice and going into the coffin. We talked to Callum about the funeral - 'celebration of Harry's life' and the fact that Harry was in the coffin and how we left the coffin at the crematorium, but we never went into detail about what a cremation was. So Sunday, led to a discussion about cremation. I found it useful that we haven't scattered Harry's ashes and could therefore let Callum hold the cardboard tube that keeps them safe! We have a log burner, so he knows how logs turn to ash, so I described how Harry's body was burnt and the tube held the ashes of Harry's body. Of course Callum  wanted to see the ash, but not wanting to open the tube up properly, but knowing it's not entirely sealed at the bottom, by handling it, a few grains of ash came out! This satisfied Callum's curiosity anyway! We don't plan on scattering Harry's ashes anytime soon and perhaps this is a good thing. We will know when the time is right and perhaps this will be when Callum is older and properly understands the process and can help more meaningfully with the ceremony.

Having had these unexpected conversations, we made our way to lgi! Callum was keen to get all the craft materials out and very quickly glue and glitter was the order of the moment! I'd forgotten how glitter gets everywhere, but one of the few positives of hospital is the fact the cleaning is done by others! Ruby had a cannula in her hand and whilst there the nurses tried to extract blood, which seemed a long and difficult process. Being the visitor this time and not the parent it struck me what our children have endured to try and conquer cancer. Amongst oncology friends and in the hospital there is a tendency to 'normalise' it all. The fact your child got through a part of treatment without entering intensive care, seems to minimise what they went through. The amount of needles; fasting; transfusions; chemicals; machines; tests;  prodding and poking day and night;  the adverse side effects; the vomiting;the temperatures; the infections; the tears; the worry; the inability to confidently say it will be alright. None of this can be normalised - EVER! Yet it is a must to try and achieve survival. It also struck me how as a parent, we have to hold it together, keep the screaming inside, whilst being the bystander to it all, because you have to in front of your child. The trouble is, when entering the world of oncology for the second time, the naivety has gone. You know too much already. You already have an awareness of the precarious path ahead.

As I wish Harry was still with us I am simultaneously glad his pain has ended. Callum seems so happy and calm these days, something I feel wouldn't have been achieved if we were still fighting to keep Harry alive and juggle his care needs with Callum's.  I feel proud that we let Harry have as much dignity and quality of life as possible. He was able to be a part of so many peoples' lives and I know people are doing fundraising activities in his memory, which gives us a warm glow. 

So tonight Harry,  6 months ago, you flew away and you gained your angel wings. Your pain ended and you became free to whirl around the skies creating new adventures. We love you to the stars and back and a zillion times around the world -Always and Forever xxxxx  

Callum's first day at school! 8.9.14

September 3rd

It's a good few weeks since I last wrote anything. I don't want this blogg to become a boring run down of our activities and will write as I feel fit to do so.

So why write anything today. This is because I feel we are entering a new phase. One which brings, joy, excitement and sadness. That is Callum going to school. He said goodbye to nursery last Friday, which I found emotional. Esscroft nursery has been apart of our lives for almost 4 years, Harry started Attending in October 2010. I cannot recommend this nursey highly enough, it has provided Callum with the best start possible in life. Esscroft is like a little magical kingdom, with so many varied activities for the children, space, home cooked food and a family atmosphere. The price is highly competitive too! I dropped Callum off for the last time on Friday, armed with sweets for the children to share and gifts for staff to show a token of our appreciation. I found myself welling up as one of the staff members gave me a hug. The nursery have supported Callum and us through one of the toughest life changing events imaginable. Harry loved the nursery too. There is even a plaque dedicated to Harry there. It was made to mark Harry's end of treatment and the start of the rest of his life. The plaque is a piece of stone with a tractor carved into it and the words "it's all good, Harry" unfortunately only weeks following Harry's unveiling ceremony, we heard the words relapsed disease and suddenly Harry's life had a sentence on it. As you can see, one chapter closes with Callum leaving Esscroft and another is about to open, when he starts school on Monday 8th.

Summer is drawing to a close too, though officially not until September 21 st when Autumn begins. We had a fab start to summer, with hot weather and holidays, but August has been mixed. Partly due to Paul and I working, but also intermittent weather has put a downer on plans at times. I have to admit that when the sun shines it lifts our mood, but when it feels like winter in Summer as it has done at times, I feel sad. Getting out and about and keeping busy and creating new memories keeps us from dwelling on our loss of Harry. I love getting out and about. We have taken Callum out cycling again. We enjoyed the Spofforth-Wetherby cycle path on the old railway line. The park at Spofforth is well worth a visit too. We have also been out on the chevin a few times and visited Harry's tree. I have taken Callum to Burnsall with friends a couple of times too and we've had the best old fashioned fun, paddling in the river, having water fights and picnics! We have also visited the amazing Nuzzlets farm again, the one we are still selling Harry's book to raise funds for. It provides that personal experience, for children to get up close to the animals, which most farms don't provide, perhaps a quick pet with a guinea pig, but at Nuzzlets children get close to goats, sheep (there is one named after our Harry!) turkey's, various types of chickens, rabbits of varying sizes and some with the most velvety coats, guinea pigs and rescued kittens. There are donkeys and horses too. For disabled children, whereby access to farms can be difficult, fighting through the crowds next to the pens can be cumbersome, Nuzzlet's provides such a therapeutic, calm atmosphere, whereby each child gets to spend quality time with the animals. As said before, Nuzzlet's not only has children visit the farm, but Mary who runs it, will take the animals to special schools and Martin House Hospice, widening the audience and access to these lovely animals. 

So far, you must think this current blogg is an advertisement of Esscroft nursery and Nuzzlet's farm! 

Back to Callum starting school. 

We have just had our last long weekend away in a while as school will put a dampner on trips away, but that is growing up! When I say we, Callum and I went away as daddy had to work. We were spoilt in July with paul having weekends off due to being on a 4 week bike course, which incidentally he passed. We are now back to Paul's new shift pattern, which means he works 3 weekends then gets 2 off. Not a family friendly shift pattern, but for now it's as it is. Callum and I stopped at my friend Kate's house on the way to my sisters's whom lives near London. Kate has a daughter of similar age to Callum. They are like 2 peas in a pod! We had tea at the local pub, whereby Eva and Callum enjoyed the play area and with them entertained, we mummies just had to partake in a glass or 2 of vino. Just before we left the DJ was setting up for the evenings entertainment. Callum requested the DJ played Bruce Springstein - Born in the USA, which was one of Harry's favourites. Callum crazily played his air guitar and I joined him with a little jig! (Oh and maybe some air guitar too, but shhhhhh!). 

Before we left on Sunday to head to my sister's, Eva introduced Callum to the disney movie 'Frozen' that seems to have captured the hearts of all little people and many not so little for months. Callum until Sunday had refused to watch the movie, insisting it was for girls. Well, the movie well and truly wove it's magic into Callum as he is now obsessed and slightly starry eyed and in luuuurrrve with the main character Queen Elsa! He now has tattoes (fake ones of course) of the characters on his arms, legs and tummy and is desparate for his own copy too! 

We arrived at my sisters for a late lunch. Cousin Olivia is 2 years and 4 months and is really stringing her words together. She was excited to see Callum and is at that cute stage. We went to a farm on the Monday, typically sunny the day before and I add the day after for our long drive home, but yes you guessed it, drizzly and cold on the Monday! 

There was an indoor play area and Callum went confidently off playing on his own, with Olivia joining him later. He wanted her to go where he did, but she was just too little for some of the older bits. It was funny hearing Callum describe Olivia as 'a handful' and that she should go back and see her mummy, whilst he played on the older bits. Callum loved the JCB ride along tractors and dumper trucks and could have spent all day riding them on the 'road' marked out. Olivia, though prefering the swings, sand pit and little carousel ride! Both loved feeding the animals. 

So we returned home on Tuesday, I'm back to work Wednesday and daddy is in charge! Childcare is shared this week, giving Callum a break from nursery, some days out and time with Granny and Grandad on Friday, then Grandma and Grandad on Saturday! 

This week I have seen lots of pictures of children in their school uniform on Facebook, some new starters and some returning and entering their new year. I am sure I will add a picture of Callum  in his uniform next week, but what has suddenly hit me hard, is the fact that Callum's picture next Monday will be incomplete. Harry will not be in it, standing beside him in his uniform too. Harry and Callum talked lots of being at school together. Heartbreaking for us knowing that it was unlikely to be and now a reality. I miss that boy so very, very much and with events such as Callum starting school, that MISS is currently ten fold. Harry would have been in year 2 and still in the same playground as Callum. I am pleased that through Harry, Callum is familiar with the school environment and he will have many familiar faces to watch out for. In fact in his year there are quite a few siblings from Harry's year and so I know the mum's already, which is a relief as they know all about Harry. 

I find it hard meeting new people, especially those who don't know about Harry. Somehow, at present he crops up in conversation frequently. Such as when talking about buying uniform, well no I haven't bought any uniform as we have plenty of Harry's which fits Callum and he is so pleased to be wearing it. I have even left Harry's name labels in the clothes! We know a few people with babies and when talking with friends, I talk about what Harry and Callum were like as babies. 

I won't deny that I had Harry. The day he was born, our lives became brighter. It is Harry's birthday on Friday 12 th September. He would have been 7. This adds to our huge MISS at present. 

I am glad that I have the routine of work, 3 days a week and I know Paul is glad he is back at work. It gives us a focus and something for us to get our teeth into. Without work I think I would be in a heap somewhere. Callum also keeps us going. His huge smile, sense of humour and the compassion he has, which is well beyond his 4 years, melts our hearts!  

Next week is a big week. I will have tears in my eyes on Monday, not so much at Callum's new chapter in life, I think that it is exciting for him and he is so ready for the new challenges that school will present, but tears for our loss of Harry. Probably more tears on Friday, which incidentally I have booked off work as paul has, whereby we will also celebrate Harry's birth, as he truly was and is a bright star!