Saturday, 13 December 2014

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

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


Friday, 14 November 2014

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 

Wednesday, 12 November 2014

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. 

 

Tuesday, 28 October 2014

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!

Wednesday, 8 October 2014

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  




Wednesday, 3 September 2014

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! 


Monday, 21 July 2014

21st July 2014

Life keeps moving and we do with it, but it is very hard at times. Following our holiday to Southwold as Callum would say we had a holiday after a holiday! We went for a long weekend with friends to centre parcs. We chose to go to Sherwood Forest this time, where we have never been and where we thought there wouldn't be reminders of our past centre parcs holidays round every corner. We had a fab weekend and Callum had friends to play with too. We went with the same friends whom were with us when we managed to get Harry to the Whinfell one for 1 night back in January, when he was paralyzed from the waist down. I am pleased when he was paralyzed that we went to the Whinfell one as the swimming pool was easily accessed by Harry in a wheelchair. We would have struggled to have got him in, in the Sherwood one.  Despite going to a different centre parcs, the thoughts and feelings follow us and at times I felt my eyes sting with tears knowing we are trying to plough on as a 3, but knowing we should have been a 4. 
As said life keeps moving and I am now back at work. Paul has had a restructure at work and has moved location of work as a result. He is also working with different people, some of whom are aware of Harry passing, some aren't and have asked Paul how Harry is and others have no idea of the trials and tribulations that we have faced over the last 2 years, so this mix of knowledge brings its own hurdles to jump. Paul has also commenced a 4 week motorbike course, that if he passes will add an exciting string to his bow and career! 

Therefore, there is much change in our lives and I am very mindful of this in terms of our ability to keep coping and keeping our heads above water. It feels good to be back at work and into a routine. I am in a new team too, so I have a lot to learn and just getting linked into the main systems on the computer seems a feat in itself. I have been out and shadowed a newly qualified worker completing assessments in the local community hospital. I felt it all rush back and I know I have the ability to get the information needed and verbally complete the assessment, but for me it's relearning how to navigate the computer system that is going to be the biggest hurdle, not the people! Due to all the cuts in budgets the administrative staff have been vastly cut, leaving a skeleton staff remaining. Therefore everything is so cumbersome and frustrating to get simple things like ID badges organised. Finding the correct department to go through and then once found, the forms are endless, all because there is the need for a paper trail now, to evidence what everybody is doing and then the evidence proves what is needed resource wise! The times have gone for the ability to just ring someone and get anything actioned. Paperwork has always been there, but I'm not so sure it's actually benefiting the service user group and enhancing the quality of life they have. 

Callum is doing well. I feel the routine we have is good for him and indicates to him that life is moving forward. He starts school on September 8 th. He is growing fast and is turning into a lovely boy. I had a good talk to him a few weeks ago though,  when he was wanting everything under the sun. We had just had a lovely day out in Leeds. We had caught the bus in as Callum had never been on a bus, called in at LGI to drop off some art and craft bits for clinic to use, spent ages in the Lego shop, where Callum bought 3 little Lego figures and a small tub of pick and mix Lego and  finished off with a Mcdonalds' Happy Meal, before heading to granny and grandad's where he had tea. Callum went to bed reeling off his wish list of more lego that he wanted. I felt very sad and at that moment longed for Harry, as he was so very gracious about everything we did, always thanking us for whatever he had or had done. I therefore told Callum how he needed to be pleased with what he had, not always wanting the next big thing. We had quite a chat about it as it seemed quite a constant issue and I told him how Harry was always so pleased with what he had. 
The talk clearly sunk in, as a few days later we were going through Callum's duplo, ready to box in the roof, but he started playing with it and remarked that he could play with it instead of buying new things. He has been very thankful for the things we have done recently. He seems to have changed and calmed down, becoming happier I think and more content. I know we did a huge amount last year, more than most 3-4 year olds do and Callum and Harry had a lot things bought too. It's about reigning it in now and creating a new normal. When I look back to last year I don't know how we managed to pack so much in, day after day at times doing things. I guess when emotion and drive is there to create the happiest memories possible, it goes to show what can be achieved. We made each day count. 

I am aware of a couple of children having ongoing treatment since relapse and yes I question the path of treatment Harry had. Should we have pushed for more treatment? I know that Harry was so very poorly at times during the initial treatment protocol and from the subsequent radiotherapy he had. In my heart of hearts, knowing the beast that Neuroblastoma is, I think we made the most of our time with Harry and have the many, many memories that will stay with us for life. Since there is no protocol post relapse and each and every child is so different in how they present post relapse, both in terms of coping with treatment, blood counts and where the disease is, I cannot compare Harry to others, but I wouldn't be normal if I didn't question at times the choices we made. 
I attended a palliative care conference recently, which was led by Martin House. I attended as the parent perspective. I felt my social care background aided me though in understanding the terminology and backdrop of the care services. It was a good day and I really felt I could contribute along side the doctors and nurses present. Palliative care is definitely a specialist area I will remain interested in. I know one area touched upon during the conference was when is enough, enough in terms of treating a dying child. I am interested in this area, because I am mindful at times as to whose benefit is the child being treated for? Is it for the child's continued quality of life or is it for the parent, whom can't bare to let go of the child? We live in a society whereby infant mortality is very low and so we find it very difficult to accept the death of a child. I sometimes wonder though if the courts should be involved more in making ethical decisions about how much treatment is enough. Of course this would be a costly process, but so are the treatments, machines and equipment used. 
Throughout Harry's cancer journey I was always mindful of him as a little person. We followed the initial protocol and entered Harry into the computer system for the trials on offer, thinking we had to give it our all to get rid of the beast. When he had relapsed disease confirmed, he was so well. I knew he was dying, but whilst his body was well enough to do the activities he had missed out on for the previous 18 months, I felt I needed to let him be, with his blood counts being so low still, I knew any treatment we pushed for would have had the risk of making him very poorly. We chose life, grasped it and packed in the fun. Perhaps Harry would have lived longer if he had, had more treatment, but equally the treatment could have killed him. Treatment in terms of more chemo may have thwarted any quality of life he did enjoy. Who knows! I do know that I always took my lead from Harry and he was very against hospitals, further needles and even losing his hair again. I do think children's wishes need to be heard, I know they don't have the capacity to make the ultimate decisions, but they have a voice too and this should be listened to in terms of their thoughts about continued treatment. I think children themselves know when enough is enough and of course the point this is reached will vary from individual to individual. 
I suppose ultimately I know we did right by Harry, but God  dam it, I wish it didn't heart so much living every day without him on earth with us. We miss you so much Harry, your smile, your humour, your graciousness, your unconditional love, even as we had to consent to all those needles, potions, radiotherapy and tests. You knew we loved you too. 
I was in the bank today and Callum started talking to this older lady the other side of the room to me. He had Harry's beloved Becky the stuffed dog with him and the lady asked him about his dog and if he had, had it a long time. Callum told the lady that it was his brother's and the lady commented that, that was nice that the dog had been passed down to him from his brother. I was listening intently to see what Callum would then say and he told the lady that the dog had belonged to his brother, Harry whom had died age 6! I asked Callum later if he missed Harry and he said that he didn't. He said that we have all the photos to look at of him and how like I told him he could play with his friend Fin when he wanted to! I feel sad that Callum didn't say he missed him, but equally I wouldn't want him grieving every day like we do. When aged 4, life is still all about them and when I think about it, Callum's quality of life over the last 3 months has rocketed for him. He spent hours watching the iPad or DVDs whilst we looked after Harry in his final weeks. We have taken Callum out loads, walking, running, cycling, on holiday, he has just started swimming lessons and he competed in a cycling tournament last Friday evening. Callum is blossoming with his new found freedom to do all the activities he loves, he is able to channel his energy into positive things, relieving him of some of the anger and frustrations he has previously felt. 
We have so much change going on in our lives right now, at a time when stability would have been preferred, but life is just not like that. 
I am such a planner, that will never change! Just to prove this I have already been thinking about how to mark Harry's first anniversary of not being here with us and have decided in conjunction with my friends that we should have another ball! Harry's ball! The date is 25 th April and the location is The Craiglands again in Ilkley. So, save the date and details will follow in the autumn! 



Wednesday, 18 June 2014

Southwold!

Whitby!

Book of Harry, pictures of Harry at school and comments from year 1!



18 th June

I thought I'd write an update. I'm not sure what to do with this blogg, but will definitely keep it open and update now and again. It's obviously not about Harry's progress anymore, but about the journey of a grieving family. 
It's 14 weeks since Harry died. Some days it seems a long time ago and other's only yesterday. Grief comes in waves and can catch us off guard at times. Music on the radio, seeing pictures of Harry, particularly the screen savers we still have. Callum talk's about Harry and sometimes this can be unexpected, such as his questions about heaven and wondering if their are toilets in heaven. I explained that when you die you don't need the toilet. Callum thought that this was fab, as it meant more time for playing. He also asked if their were schools In Heaven and he decided that there were.
Callum loves wearing Harry's clothes. Though I am acutely aware that Callum is taller than Harry was at the same age and so Callum won't have many more months of wearing Harry's clothes. That will feel sad, when all Callum's clothes are new and not hand me downs from his much loved brother. 
Callum loves playing with Harry's beloved Lego and is pleased about his new playroom In Harry's room. Since Harry had a bed, which was from the NHS and much of his furniture was moved out to create space to move and handle Harry into bed safely, once he became paralyzed from the waist down, that now all the equipment is gone, it leaves a large bare space.
I never wanted Harry's room to be a shrine to him though, so I am glad that it is bare and Callum can use it as a playroom. I am also pleased that Harry's clothes are not left In Draws and Callum can make use of them. Though I have boxed some particular favourites that just don't feel right to see Callum wear. 

I feel we are doing really well for the point that we are at. We are thinking of the future and beginning to make plans for our new life. We are being kind to ourselves and very much enjoyed some couple time in Whitby recently. Granny and Grandad had Callum to stay for 2 nights, which he very much enjoyed. It was our 11 th wedding anniversary. Having spent our 10 th at diggerland last year, trying to create great memories with Harry, particularly as he had just commenced morphine to combat leg pain and our 9 th was spent in lgi, with Harry very poorly due to the side effects of high dose chemo and our 8 th was spent unpacking boxes as we had just moved house, though I do remember we managed a meal out! As you can see, we were overdue a relaxing anniversary break! We chose Whitby as we both love it, no big journey, wasting time in the car, so more time to play. I had forgotten how many memories we had of Harry in Whitby and In Between the fun and smiles, there were tears of sadness.
I think that is our life now, smiles, happiness, but frequent sad moments where tears sting our eyes.
You see the thing with grief, there is no ryhme or reason or rehabilitation program or protocol for treatment, it has no timescales for the healing process and must not be forgotten how emotionally and physically exhausting this thing called grief is. You can not see it, there are no physical wounds or scars, no bandages to make it better, no cream or lotion will heal it. It will always be there in Some shape or form. I gather that it is about learning how to live with grief and getting used to it, that helps. Time can only make that happen. Again there are no timescales for how long it takes to adjust. Then I am sure once adjusted, again, there will be no ryhme or reason sometimes for a temporary 'relapse'.
People say 'how are you?' and most people don't really want to know, that's life. Sometimes, someone will say 'No, HOW are YOU' and those people are the ones who know you are not really fine and want to know the truth. Some days are actually ok and other's are not. To be honest I would say most days are a roller  coaster of emotions, as said, smiles, happiness and tears of sadness all in one day.

Whilst Paul was working nights one weekend, I drove Callum and I down to my sister's, which is just north of London. We had a lovely weekend. Callum got on well with his cousin Olivia aged 2 now. She is just old enough for them to play together and interact together. Callum, despite declaring that he doesn't like girls, was really sweet with Olivia and looked after her In the soft play area we went to. 
This adventure down to my sisters, was a milestone for me, since I had not driven such a distance all on my own since Callum wAs born.  I used to frequently travel distances, even with Harry, but when Callum was born car journey's turned into a nightmare! Also with my parents moving to Otley 4 years ago, there hasn't been the same need to make long journey's solo! I also guess that when Harry was either on treatment or when he'd relapsed, the unpredictability of his health, meant travelling solo for long distances felt like too great a feat for me to undertake. Since Paul works a lot of weekends, I always used to make a lot of plans for weekends and would travel to meet up with people. I have now taken the first step in knowing I can do the things I used to do, Callum was fab in the car, he was happy as long as 'One Direction' was playing, I hope they get off tour soon and make another album, the tunes were on replay in my sleep! I feel the trip was a milestone in my ability to move on and learn how to live again. 

Since Paul has limited ability to get time off over the summer due to a restructure, new teams and management and my commencement of work in July, he has 2 weeks off work at the mo, whoop, whoop! We have just come back from Southwold, Suffolk, aka Sunnysands from Grandpa in My Pocket. We had a fabulous week, Really relaxing. We had the use of a beach hut on the seafront, which was brilliant, we could leave the buckets and spades there, have a cuppa using the calorgas stove or partake in a cheeky alcoholic beverage! It could get a little breezy on the seafront, so the hut provided the perfect shelter with a sea view! Callum loved the beach and we spent many an hour on the sea front! None of us were quite brave enough for swimming, but a paddle we did manage! 
We took our bikes and made Walberswick our regular destination, where Mr Whoops' shop front is from Grandpa in my Pocket. Callum is getting good on his bike and even managed to ride on the road a little, sandwiched between daddy and I. I haven't ridden a bike much in years, so Callum's stopping and starting helped me too! We found a seafood restaurant on the harbour, which we have seen develop over the years, from just a shop to a restaurant, though we haven't visited Southwold since Harry was 18 months old, but this year has seen the addition of outside seating, perfect for a glorious sunny day and perfect for Callum, to fidget to his hearts content! The restaurant does seafood platters and we could take our own wine and bread, perfect - yum! The weather was so lovely the day we went and the rustic setting made us feel like we were in France. 
We did take a day out of roaming the countryside to visit Pleasurewood Hills theme park, near Lowestoft. I used to frequent the theme park at least yearly throughout my teens. It was a massive throw back to 20 years ago, some of the rides have changed, but much was the same and I could tell Callum that he went on a ride that even granny and grandad went on! It was the sedate boat ride, which Callum thought was boring! There was a rollercoaster called 'the rattlesnake', which was very tame, but I could remember queuing 45 mins to get a go all those years ago. I also had a certain recollection that it was called 'the ladybird' when I used to frequent it. I asked one of the workers about the name, but they confessed they were only 21 and so they were only months old, when I had last visited! Good old Wikipedia could confirm that my memory was exactly right and it's original name was 'the ladybird!'
As mentioned above, we last visited Southwold when Harry was 18 months old. I could quite clearly picture him motoring along the promenade on his plastic trike. That was a happy holiday too. When we were out on our bikes, I did feel sad that Harry wasn't able to ever join us on family bike rides, though, I could picture him smiling at how confident Callum is on his old bmx bike now. I remember the day last October, when Callum insisted on having his stabilisers removed and Harry was helping Callum balance on his bike in the cul de sac next to our house. Harry was so proud when Callum managed to ride 20 foot without falling off! Callum was still just 3 then! 
Our hearts ache without Harry, but our lives cannot stand still, we will endeavour to have new adventures, smiles will shine through the tears. 


Wednesday, 21 May 2014

Calendar tv!

Tune into calendar tv tonight, 6 pm on ITV to see a short piece featuring Harry's book and Nuzzlet's farm!


Above is a link  to buy the book!


Thursday, 15 May 2014

How are we?


The question everyone asks, how are we?

Well, it's a difficult question to answer, because of course we are not fine, how can we be, it's only just over a month since Harry died, though it feels much longer. 

We are doing our best to get on with life and create new routines and not sink into a deep depression. We have a massive piece of our lives missing. Our lives revolved around Harry's illness. Every plan we made depended on how well Harry would be as to whether we would achieve the plan. Towards the end, we made no plans, our lives became so small that only trips out for an hour at a time were possible. Our lives were mapped around Harry's care needs and the various care staff that came into our house each day. Paul went back to work in January and so I was Harry's main carer and I did what I could for Callum too. 

Now Harry is no longer here, I guess the world is our oyster. We went to Northumberland on holiday the last week in April. The weather was mixed and when we were in the caravan, just the 3 of us, Callum's playmate was so obviously missing. It was good to get away and returning home feels a little more manageable being in our home surroundings, but the grief comes in waves.
We have lost our fantasy, our family of 4. We planned our family carefully, not having Harry until we were financially secure enough to do so, then waiting 15 months to conceive him, then deciding to have another child, with the aim to have a 2-3 year age gap, so that the children would grow up close in age and be good playmates. We achieved this aim, but sadly we couldn't keep hold of it. 
Having something you so dearly wanted, then having fought to keep it, but finally having cancer take it,  is so truly devastating.  
We have to grieve the fantasy, the loss of what we set out to achieve and had for a short while. 
We have to develop new routines and ways of doing things. 
We are not ready to go forth and explore the world yet. We are not ready to have that expensive dream of a holiday, because currently our hearts are not healed enough to go forth and leap that far. 
It's a case of baby steps and small goals. 

Some times we are fine, then a trigger point will cause a wave of grief and depending on the social situation, depends on whether we hold our breath until the wave passes or if on our own, we may embrace the wave and have a few tears or a few moments of deep sadness. 
I collected Harry's things from school last Friday. These included his school work that he did. When I looked at them properly at home I felt such huge sadness and loss, that there will be no more work, no more pictures, no more handwriting. Harry's reading progress book had the last book Harry read at school recorded and the title was 'fly high'. Very poignant I thought. The book was about a plane flying high and Harry really liked reading this book. 

Having spent so much time with Harry in the last few weeks of his life, Callum had little attention from us. It has been good to get out and about with Callum. To meet friends up and go for walks on The Chevin. To get Callum out in the great outdoors has been fabulous. It highlights how small and limited our lives had become over recent months or even much of the last 2 1/2 years. We did achieve many adventures last year, but Harry's stamina was always an issue, we couldn't go for long walks on the chevin or long cycle rides. His health was very unpredictable and if he over did it one day, he would tire the next. We made the most of our time with Harry and I think that has brought me peace. We accepted that Neuroblastoma is one big beast in the world of cancer. Harry had already had second line chemotherapy in February 2012, when the initial chemotherapy did not clear his bone marrow. This TVD chemotherapy had harsh side effects, fortunately only 2 rounds were needed to clear Harry's bone marrow and enable him to return to the original protocol pathway. However, when Harry relapsed, we knew that his platelets were very low, around 40 and so he was not in a good place to recieve further chemotherapy. Any further treatment at that time would have caused him huge problems. We already had witnessed the side effects that could occur, for our family unit and for Harry, further treatment just wasn't the right pathway to follow and so we took life by the scruff of its neck and went forth and achieved so many adventures. The help from those on the way that fundraised  for us to keep having trips, was and always will be remembered and treasured! 
As you all know Harry lived just over a year post relapse. 
We were told in June 2012 that he wouldn't make the summer, but he did and he made it through winter and saw the commencement of spring too. 
Life was very unpredictable at times and managing his medication and trying to get that right was a project in itself. I was always keen to decrease Harry's medication when we could and pushed for this to happen, something that was a rare sight. Most cases have only seen increases in medication, not decreases and at times I got concerned that Harry suffered withdrawal side effects, another issue with too little information. This was also because Harry ended up on buprenorphine patches and not fentanyl and these haven't so widely been used in children and certainly not to the strengths Harry reached.  
Towards the end, Harry ended up on such massive doses of drugs, it was a wonder he continued to function to the degree he did. I remember thinking that this  increase this time will surely knock him out, but it didn't, until he commenced on Medazalam to calm him, the Friday before he died. Following the commencement of this drug, we never did have another proper conversation with Harry. I knew that  when he started it, that this was the big boys drug and it would make him drowsy. However, I knew he he had reached the point of being too agitated due to the pain. Knowing him best and inconjunction with his McMillan nurse, whom travelled the 2 1/2 year journey with us, decisions had to be made re keeping Harry comfortable. The hardest decisions ever and decisions no parent should ever have to make.

Now our chapter of our life with Harry is complete. We are now a family of 3 and we need to get used to it. We will never forget Harry, he lives on in our hearts and remains apart of conversation at present. I wonder how I will feel in a year or two, when Harry's friends are older and Harry remains forever 6. I am acutely aware that the pathway of grief is a long and winding one too. As I may feel ok for a while, the passage of time may ease the pain, but at times it may not, as the years become greater for not having Harry with us than it did.  The fear of forgetting what he sounded like, his phrases, the funny things he did. We have photos and DVDs to remind us I know, but even now I sometimes wonder if I dreamt that we had Harry.

Having attended an assembly dedicated to remembering Harry, at The Whartons school yesterday, I realise how much a part of the school community he was. There were many memories shared. Lovely memories about his positive attitude to life, his creativity, being a friend and being a part of his adventures, such as go-karting and diggerland. Although, it was very emotional, it was also lovely to know so many pupils respected him, had time for him and miss him. Even when he was in his wheelchair, some of the pupils shared stories about him decorating it, or showing off how fast he could go in it. Harry was initially frightened that the other children would laugh at him, when he was on his walking frame or in his wheelchair, but I believe his spirit shone through and respect is what he achieved. I hope when children see others in wheelchairs, they remember Harry and know that the chair is not a barrier to knowing the person sat in it. 

Callum is now 4 1/2. I do look back and remember Harry at this age (March 2012). He was just finishing his TVD chemo, then he had his stem cells harvested, then he had a nine hour operation to remove his tumour then on May 16 th 2012 he entered LGI to commence high dose chemo and to have a stem cell rescue, using his own stem cells. This time 2 years ago, we had our final night all under one roof for 6 weeks. We knew what we were consenting Harry to endure could have killed him, it has killed others. We knew if he hadn't had the treatment, the cancer would have grown again and killed him. Having this definite knowledge made signing the consent form the easy part. Watching him suffer the severe side effects wasn't. 
Seeing Callum at this age, I am beginning to realise how much Harry missed out on. We have accepted Callum's place at The Whartons School and have also signed Callum up to some induction sessions at school, sessions Harry was not able to attend. We are preparing Callum to start school in September and we can get excited about it. Callum has already expressed that he doesn't need any new school uniform as he can wear Harry's, which is lovely. I know the excitement around Harry starting school was taken away from us, due to his treatment and the side effects of radiotherapy, which meant he started school late and intermittently, due to further treatment, his stamina being low, the need for frequent transfusions etc, etc. 
What was evident from the memories shared at the school assembly yesterday was how Harry went to school, despite being poorly, enjoyed it and frequently had a smile on his face. I have to say, we pushed him into school at times, knowing he would enjoy it once there, we needed the break from each other and as I know myself, mixing with others can be uplifting and lighten our mood when down. Isolating ourselves can be detrimental. 

I continue to push myself into social situations, knowing the first one since Harry died is always going to be the most awkward. People don't want to NOT acknowledge our loss, but don't know what to say either. We too, are not always sure what to say or how to move on socially, but we are grateful to have you all here, to continue with us on this journey of life. I am truly grateful for Callum too, as my status as a mummy remains. He makes us remain sociable and he keeps us linked into our social circle being friends with the siblings of many of Harry's friends. I remain on unpaid leave for the present time, giving myself space to come to terms with our new life, particularly whilst Callum is at nursey. However, I am hoping to return to work in July. I have learnt so much about life, loss and bereavement, I know I am very much richer for knowing Harry, although my heart hurts and I know the knowledge and life experience I have gained has been so much more than any course could ever provide. The next goal is to keep my registration as a social worker, due for renewal in November. I hope I can achieve this smoothly, but if not, fighting the system I can do!