Saturday, 13 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!
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
gregmulholland.o rg/en/article/ 2014/976140/ mulholland-famil ies-secure-meet ing-with-depart ment-for-health -and-drug-compa nies-to-get-tre atment-for-140- children-with-u ltra-rare-condi tions
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!!
Thank you all, you're amazing xx
Thank you all, you're amazing xx