December 2014

I can't believe that we have somehow managed to keep tumbling forwards to December. Such a strange month with parallels of sadness and happiness in different amounts each and every day. Sadness for not having Harry, missing his beautiful smile and the sound of his laughter. Sadness for only having memories to look back on, savour and cherish. Sadness that another year looms, a year where we get further away from the time we held Harry's hand, felt his warm body, nursed him and let him ago into a world where he could be pain free. A year where I have known other little ones die and know their families embark in that journey of grief too. A year where I know children are still battling for 'normality' post treatment, a year where I have witnessed children relapse and also be diagnosed with new cancers. 

We started this year with Harry doing really well. I had concerns about the levels of buprenorphine that he was on to manage his pain and the side effects this had on him. I was battling to secure a meeting with our consultant and the consultant from Martin House to review Harry, seeing as no one had reviewed him since he was seen in the fracture clinic in November. We felt in the dark with regards managing his drugs, but felt that Harry could have lasted months. I also secured a meeting with school mid Jan and discussed how extra support could be provided for Harry, as the drugs clouded his memory significantly. New learning was very hard for him. What I had no idea about was whilst we were preparing for our centre parcs break, which happily seemed possible, a tumour was growing rapidly on Harry's spine. Cancer grows silently. On Saturday 18 th January I had 2 giddy boys in the swimming pool. I remember being exasperated with them for playing about in the changing rooms afterwards, because we had a tight schedule to get them both to birthday parties at separate locations. Each enjoyed the parties and then we headed over to Grandma and Grandad's house. We stopped at some friends on the way. Harry was not himself at our friend's house, complaining of pain, so I gave him extra oral pain relief once at Paul's parents house. I remember the pain relief made Harry 'happy' and he wanted to hug the TV as there were animals on it. He had an unsettled night. However he awoke the next day in a good mood, but seemed unsteady on his feet, I thought he was messing around. However, when he was trialling out a larger bike in the afternoon, it was evident he couldn't ride the bike due to poor balance. Only a few hours later, Harry had no feeling from his waist down. I realised this when I sat him on the dining room chair and only by luck I reacted quickly to stop him falling forwards and hitting his head on the table, he had no sitting balance. We made phone calls and decided to take him to LGI on the Monday, yes the day we were due to go to centre parcs. The worst day for cancer to take over our lives again. Harry had a mantra all day in lgi and it was 'I want to go to centre parcs!'

I had been organised the night before and had packed mine and Harry's things together and Paul and Callum's things together. I knew Harry would end up being in hospital overnight. Paul came to lgi on Monday and once a plan had been established for an MRI scan we decided that Paul should head to centre parcs with Callum and meet our friends as planned. Having had an MRI and consequently radiotherapy to shrink the tumour, Harry and I made it to join the others at centre parcs for 1 night. Probably one of the biggest achievements of my life. The show went on. We delivered Harry's wish to be there, not as we planned, but we got there and in the swimming pool, capping Harry's catheter creatively as proper swimming attachments had not arrived  in time. 

The tumour was the beginning of the very end. For a couple of weeks anything seemed possible as Harry very quickly adapted to using his friend's wheelchair, but Harry didn't just have a physical disability, such as a spinal injury, but cancer, incurable cancer. Thus right before our eyes we saw the cancer take hold. Blood and platelet transfusions couldn't hold Harry's blood counts high enough for long and then he got an infection in his line. He had several grade 5 pressure sores, his appetite was zero and his pain was hard to control. The last 2 weeks were unbearable, we wished everyday of those last 2 weeks for Harry's pain to end, the hardest thing a mother could ever concede, but the kindest thing for Harry. 

So as you all know Harry slipped away at about 7.40 pm on the 8 th April with myself and Julie White at his side, whilst daddy cuddled Callum downstairs. 

So fast forward to December. We have put decorations up, cried over seeing decorations that Harry so lovingly decorated over the last 2 years, cried over seeing the decorations we bought in Lapland, the memories of that wonderful day touch our hearts warmly. Cried over the Santa sack that has Harry's  name on it being empty this Christmas. I also have shed tears over deciding which photos to choose from our professional photo shoot which myself, my sister, Olivia and Callum did, because these photos do not have Harry and symbolise another giant leap forward.

Whilst we shed tears, we smile too. Callum brings such a large light into our lives. He is a star in his nativity play and he is a STAR. He has grown up so very much since starting school. He LOVES arts and crafts and can start a project and be as manic about it as Harry was. I never saw that happening! Callum talks lots about Harry. He saw the film 'Father Christmas' today and talked about Harry as he saw Father Christmas travel through the skies on his sleigh. We struggle to comprehend heaven, the after life, what it is, how we look. To Callum he thinks we can go and visit Harry in a rocket or his idea today was to send a telephone up to him via a balloon so we can talk to him. If only! Callum talks fondly of Harry, which I treasure. Callum has just started wearing Harry's last pair of trainers. The trainers were bought in January this year. I remember the day distinctly that we bought them, Harry was in his wheelchair. Harry's trainers were getting on the small side, I was aware of the fact that he couldn't feel his toes and didn't want him getting pressure sores, so we got him new larger trainers, with the hope that the radiotherapy would work and he would soon walk in them. Now Callum is able to take those trainers on new adventures, to run far and wide and carry on the meaning of life! 

Update on the KeepSamSmiling Campaign

Sam Brown age 6 has Morquio Syndrome. He was Harry's class mate.

The update is that following the threat of legal action, opposing the scorecard for funding new drugs for rare diseases, it has been scrapped. great, but in the meantime there is no system in place to grant funding for new drugs for rare diseases. Currently the drug company are continuing to fund Vimizim for Sam, which he has infused weekly to keep his life limiting disease stable, but how long the funding will continue is unknown. The Government need to act fast to have a system in place, which can grant funding for the drug Vimizim and ensure Sam doesn't have a gap in treatment. Any gap will mean the disease is set free again to progress, any progression is irreversible. To ensure that Sam has the possibility of a future into adulthood and one where he can be as active physically as possible, the government need to act fast and say yes to funding Vimizim. 

The #KeepSamSmiling campaign has gained momentum and Sam's parents have been to London this week for a meeting with MPs re highlighting how urgent decisions need to be made. They have another meeting next week in London with The department of health. Fingers crossed a difference can be made. 

Words from Sam's mum Katy:

We've secured a meeting next week with the Dept of Health, NHS England and the drug companies with the aim of achieving an interim solution for children and adults to receive Vimizim until a new process is established by NHS England. An important first step but still no commitment, for the short term or the long term. Please keep sharing and liking - we really need your help to keep raising awareness and get this issue firmly on the national agenda xx

http://gregmulholland.org/en/article/2014/976140/mulholland-families-secure-meeting-with-department-for-health-and-drug-companies-to-get-treatment-for-140-children-with-ultra-rare-conditions

Mulholland & families secure meeting with Department for Health and drug companies to get...

Following yesterday's meeting between health minister George Freeman MP and families and campaigners led...

How you can HELP from Katy Brown: 

Quite a few people have been asking me what they can do to help. So - now I have something!! Please could everyone send an email to David Cameron using the following simple form .... Mentioning Morquio (Sam's condition), Vimizim (the drug) and Keep Sam Smiling. It is critical he knows how many people are fighting for Sam and other Morquio sufferers to continue (or in some cases start) to receive life changing treatment, funded by the NHS right now!!


https://email.number10.gov.uk/

Thank you all, you're amazing xx

Contact the Prime Minister - Great Britain and Northern Ireland

Please use the form below to email the Prime Minister's Office. All emails are read and we will do our...

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