Christmas photos

 

Post Christmas visit to Harry's tree

January 2015

So we got through Christmas. We headed to Whitby from the Sunday before Christmas until Boxing Day. We had booked it a while back, when we realised we just couldn't face spending Christmas at home without Harry. It was a coping strategy and one which worked. We all love the seaside and especially the East Coast. We do actually have quite a few memories of times with Harry in whitby, from taking him as a baby, to when he was 3 and we holidayed at Sandsend, to taking him during treatment. The first day out we had post the beginning of treatment was in January 2012, we were so shuffed that Harry had eaten his fish and chips, though the moment lasted seconds before Harry threw it all back up including his NG tube! Perhaps it was an initiation test into the world of cancer and our first lesson in learning how to carry on, enjoy the day and get used to deviated trips to 

LGI!

We all had our own thoughts about Harry over Christmas. Callum could remember building sand castles on the beach with Harry and talked about him too, which was lovely to hear, but painful too, as it enhanced our miss of him. I felt close to Harry in Whitby and I am sure he was swirling above us smiling. I had thought we would have some sought of ceremony to acknowledge Harry, but this wasn't needed as we acknowledged him constantly. The weather was kind to us and Callum just loved going on the beach everyday. Getting out for a Christmas Day walk at Sandsend was refreshing and lovely too. The change of scenery was definitely good for us. 

On our return Paul then commenced a set of 6 shifts. I saw other members of the family with Callum, then headed to Derby for New Year's Eve. Since paul was working nights I took the opportunity to visit Kate and her little girl Eva. Callum gets on well with Eva, being of similar age and he really enjoyed having company. My aim was to return home New Year's Day, until I slipped backwards on the ice and fell back on my head. This was a frightening experience and all I could think of was that I was going to have a brain haemorrhage or in time I will develop a brain tumour! Well, when the inevitable has happened ie childhood cancer, the unlikely does happen. I was also acutely aware that though I miss Harry and want to see him again, actually I feel he is in a good place now and my journey on earth needs to continue as Callum needs me more! I was checked out at A and E, seen pretty quickly due to the nature of the injury and returned to Kate's for another night. So new year started with a bang! 

January is a strange month, one where dark mornings and nights continue, the hype of Christmas over and spring seems long awaited.

For us though, January symbolises something new, the month Harry's cancer grew silently, paralysed him from the waist down and really was the beginning of the end. Tonight, one year ago, I thought we had months still ahead of us as a family of 4, but 72 hours later Harry was in trouble, he'd lost the feeling in his legs. 

Grief has it's twists and turns, just as I feel upbeat, I am suddenly struck down by pangs of heart ache. We take baby steps and try and get through each day. I know the next few months are not going to be easy as we relive Harry's last few weeks with us. I miss Harry more than ever at the moment, the true realisation that he has gone forever, yes he lives on in our hearts, but never being able to cuddle or kiss him again is truly sad. I also remember the battle to keep on top of Harry's pain those very last weeks and how Harry couldn't tolerate being cuddled. He always reminded us so very frequently how much he loved us. 

Callum is an inspiration and he makes me smile. He is learning to live with his grief too and can become angry and upset at times, right out of the blue. He so very much treasures Becky and Bumbi - Harry's toy dogs, in fact they are going to get married and we have to make them outfits! 

I am also beginning to realise how much Harry meant to his friends. They still very much miss him. For some of Harry's friends who had know him since birth, he was a constant. These children have had to face loss and bereavement at such a young age, one where emotions are mixed and misunderstood. They have also had to learn that humans can die at any age and this fact has for some unsettled them and meant they have become aware of their own mortality at an age where playing should be the main agenda. 

I have also become aware how much harry's death has impacted on our friends too. I realise that there is a sadness amongst many of us. I don't know what to do about this or how to move on at times. The journey of grief is a steep learning curve. We are still climbing that massive mountain to recovery. At present it feels like we are stumbling, slipping and sliding in the mud, at times we manage to get a grip and take giant leaps forwards and other days, the rain sets in and the mud thickens and we slide down a few feet. I realise it is still early days and we need to be kind to ourselves. 

I have therefore entered myself along with 10 other mum's into the major series challenge on March 15 th. It is a 5 km assault course run by the army! March 15 th is Mother's Day and what better way to ensure I don't end up in an emotional heap missing Harry, but to honour his memory, by completing this challenge in aid of Candlelighters and Martin House! I may end up in a physically exhausted muddy heap by the end, but I am told it is exhilarating! Watch this space to find out more! We are also getting organised for Harry's ball on Aoril 25 th. Tickets are £40 each and the event is being held at The Craiglands Hotel. We are collecting money in thick and fast, so get your names down if you want to attend. 

Professional. Photos

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