Tuesday, 26 November 2013

25 th November

 November so far has been quite an emotional time really. Anniversaries of diagnosis are always hard to get through as flashbacks of events are always at the forefront of our minds. 
Perhaps this year is so different to last as we were still ploughing on with treatment and had hope for the future. This year we know Harry's future isn't bright and we just leap from one week to the next unsure of how things will develop. Last Friday Harry had a lot of aches and pains in his leg and chest and this causes our hearts to flutter with anxiety. I was never like this pre cancer, but the simple fact with Harry is that he does have cancer cells in him. The scan showed no progression in his upper body, but we also know the development of cells has no rhyme or reason and just as it could stay stable for weeks or months it could still go BOOM too!
Friday afternoons are fun for Harry at School and so he went in for lunchtime and he seemed fine! Mind over matter and all that! He was keen to talk about something in show and tell and so he took in a poster of the Battle of Britain memorial flight, which included a Lancaster bomber, a hurricane and a spit fire. With this picture, Harry also took the photograph of him sat in the driving seat of a Lancaster bomber! He showed the class and answered their questions! 
Harry can at times say he has pain and the next minute be running, I know at times he can manipulate situations, but I also think he does have a constant level of pain too, of which he is used to and for the majority of the time he just gets on with life! Maybe our gift to him is to enable him to join in with his peers and be as normal a 6 year old as possible. I do believe that wrapping a child up in cotton wool makes them weak, introverted and focused on what they can't do and the pain they have. 
Trying to encourage Harry to keep marching on, gives him that lust for life that he has. 
Due to what Harry has been through though, he is not the boy that he would have been if this had not happened and also the amount of medication he is on currently for pain relief, gives him the fragility and vulnerability he never used to have. 
We were in hospital at the end of October when Harry got the x ray results that identified his fracture and we met Jo a volunteer whom we haven't seen since February. Jo played with Harry at home and hospital most Friday afternoons between September 2012 and February 2013. She was brilliant with Harry and they had the best fun together. Therefore I was very surprised that Harry could not remember Jo, even after 30 minutes together, his memory was not jogged! 
Harry has blocked out the 15 months that he was on treatment, he can't remember really being in hospital and the awful treatment. He remembers odd bits. Partly I guess he was very young at the time, but I think this has been his way of dealing with what has happened.
Harry isn't going to live into adulthood, but if he did I wonder if the events that he has blocked out would have haunted him later in life. 
Psychology fascinates me and many children must block out horrific events, particularly when at an age when they can't comprehend what has happened and articulate feelings. However, events can cause distress later in life as triggers cause flashbacks. 
This is why, I have quite a passion for support being available post treatment. There is virtually nil support at present. So much money is put into the treatment of the child and should they survive, it feels that the work is complete. The network of support available whilst treatment is ongoing comes to a halt and families are left nearly drowning at times post treatment trying to co ordinate the right services to assist those children to physically and mentally reach their optimum potential. When children move into adult services at 18 then there is a whole new set of rules too, as these people may have survived, but may not be able fully participate in the working world and the benefits system is so very complex and harsh. 
We attended a candlelighters led day on Saturday 16 th November to provide feedback on all levels of support during and post treatment. From the feedback it was astounding how little support people had post treatment. Education for many was an issue as children were not given special allowances for poor attendances due to post treatment fatigue, hospital appointments and ongoing treatment.
Oncology children I feel fall between services. The cuts continually being made by the councils in funding service provision means often only severely disabled children get the support. Oncology children are often it seems not severely disabled, but are left with learning disabilities; hearing problems, issues with diets as treatment has affected appetites and reliance on being tube fed causes delays in normal diets being resumed; problems with mobility can be an issue too as children are weakened by the treatment or in some cases it seems the chemotherapy has had a detrimental effect. 
Our experience with education has been mostly good and Harry's attendance has never been an issue, he comes in at whatever time he can and we have never faced issues around getting him in at x time so his name appears on the register.  However, many have, which is horrific as the whole cancer journey is stressful enough.
Harry has also come out of treatment with his hearing in tact, mobile, no learning disability and in many ways healthy, but for the fact he has relapsed disease, which causes him pain. This enables us to continue trying to create normality and also carry on with our adventures. Lapland is looming! We are busy getting snow boots and equipment sorted to keep us warm in the very cold arctic conditions! The boys are excited and so are we! We are making a mini break of our trip and will be staying near Humberside airport before and after our day trip. The day before we are planning to visit The Deep in Hull. A sealife centre with a large underwater tunnel I believe! 
Christmas is looming too. We will reach for the stars in trying to create the magic and embracing what will most probably be our last Christmas as a family of 4. 
This time last year I had no idea if we would reach this one, but we have and so perhaps anything is possible! 

Friday, 8 November 2013

A few pictures!

Christmas shopping evening 14 th November

I have been involved in organising this event! Please come along. It's gonna be a Fabulous chance to get all those Christmas gifts under one roof and where else can you shop with a glass of wine in hand! 
Stalls include
Temple Spa
The Body Shop
Jamie at Home
The pampered chef
Charles Grace Interiors
Pudsey Pickles
Bespoke Crafts
Home interiors
Baby gifts 
And much more! 

8 th november - hop along Harry!

Well, having got the news about Harry's fracture and yet again having to digest a new set of rules to abide by ie Harry not being able to weight bare; using a walking frame to get about on and a buggy for longer distances;Increased pain relief patches; the introduction of ibuprofen (not usually allowed in cancer patients due to the possibility of bleeding and low platelets in reserve to heal!); changing plans for activities for half term: meaning no bikes. Well, we stick to our plan - heading north to stay with friends! 
Yep - we land in Scotland for Saturday tea time. It's half term, what else are we gonna do - sit at home with miserable faces! Anyhow, Harry within hours of getting his walking frame, was managing to hop along at some speed! With his pain more under control and the excitement of visiting friends, there was no stopping him and Hop Along Harry is born!
We went to the cinema for the first time and saw 'Despicable me 2'. We visited the science centre in Glasgow, which was good and interactive. Though, having a child in a buggy gave us a huge insight into the lack of thought that goes into making displays accessible and user friendly for people in wheelchairs or buggies. Many of the interactive displays were hard to get Harry's chair under adequately for him to access the display and so he did get frustrated at times. Although he did have the ability to raise himself up and balance on 1 leg, which many disabled people can not do, which did help. The world around us really is designed around able bodied people and probably by able bodied people. Even disabled toilets often have toilet paper too far away etc for disabled people to access without help.
Paul manages a brief night out in Glasgow with Ben and I manage tea out with Suzanne and shopping in one of 
the  shopping centres, which was beautifully quiet on a Monday night!
On Tuesday we head for the seaside resort of Largs. With the weather being showery we head to the bowling alley. We have never taken the boys bowling, so another first! The boys used a frame that the ball gets rolled down, so Harry could balance using this! He also won, with a respectable score of 96! Says a lot for mum and dad whom had use of the bumpers which stopped the ball heading for the gutter! Whilst at the bowling alley we discovered that the manager, Leanne knew Paul's brother who sometimes works on the local power station. She knew about us and has read this blogg too! She was lovely to the boys and gave them a party bag of goodies to take home!
Callum insisted on visiting the beach, when the rain abated and the sun briefly appeared! The beach is very gravelly and not really sand castle material. But Callum didn't care! Harry got cold quickly though and him and daddy retreated back into the bowling place for hot chocolate!
We headed back home on Wednesday, having had a good time away. Harry really tried to join in with Adam, Callum and Flynn, but at times he just couldn't keep up with them and retreated to drawing in the playroom. He did get tearful and upset at times at not being able to walk and run about and it's hard getting the others to always do activities that include him, but on the whole he managed remarkable and that cheeky smile not far away!
On the Thursday we head to the cinema again as its kids club and Harry really wanted to see the movie animation 'planes'. He loved the film and Dusty the crop sprayer is his new hero!
Friday is the start of birthday celebrations as we head to Grandma and Grandad's. we take a cake for grandma to share with Callum, as its a celebration of both their birthdays! Callum is allowed to open his birthday present from grandma and grandad - a fireman Sam duvet and some money for his bank account!
On Saturday the boys help me mix Callum's cake mixture and I decorate it later whilst the boys have fun at Granny and Grandad's. The cake is for Callum's birthday party, which has fireman lego on top! 
Sunday is the day of Callum's birthday party - his wacky warehouse party. My goodness we have had a massive build up and it was no wonder that he had a massive paddy once home in the afternoon. He had a ball at his party, but he needed a rest and slept for 2 hours - unheard of! Once awake he was desperate to open his presents and he had some lovely things - thank you everyone!
Callum continued with birthday celebrations on Monday, attending the science fair at the courthouse, with his friend Fin whom couldn't make his party, followed by lunch and play at his house and another candle to blow out on a bun! 
So eventually we get to November 5th, Callum's actual birthday. We were prepared and daddy had made up Callum's play mobil firestation the night before, so he was able to play with it immediately! He was so chuffed with it - one very happy boy!
Having been off nursery the previous week, I send Callum late morning. He has more cake there, cards and a small present and home to fish and chips and more presents! What a very lucky boy. He was sad at bedtime though and was confused why he had not gone to school as he was 4! It's hard for him to comprehend that he will still be 4 when he goes to school, but he has 10 months to wait! What is even a month to a 4 year old!
Harry stayed off school on Monday, though we made a visit so he could get some new reading books and see his head teacher. Having discussed his care needs and almost completed a pirouette on his walking frame, we are told that once a risk assessment is complete on Tuesday, Harry could go to school on Wednesday! Yippee! I wasn't sure they would have him with an unprotected fracture!
Harry spends Tuesday - Callum's birthday being entertained by Jackie - a Playworker, whom is fabulous and in the afternoon a friend Cathy - whom had bought a pirate doll and together they sat for 3 hours making it!
By Wednesday it was good to get Harry to school and Callum to nursery! I had an appointment with Jan the psychologist atMartin  House Hospice.  It was good to off load on her and try and get a new direction for our lives. We really have to adapt and constantly change the path of thoughts we are on and the way we manage Harry! It is exhausting and I don't allow space  for how much emotional baggage we really do carry and how this effects us. 
Today is Friday and we were in fracture clinic for a review. Our McMillan nurse attended, which I was pleased about as I had feared that orthopaedics would not be aware of Harry's medical history. Harry was sent for an x ray and thankfully his fracture is healing well. He is now allowed to weight bare, but NOT allowed to run, cycle, jump or fall for 6 weeks as the risk of the bone being damaged and breaking again is high. This is a tall order for a boy whom is raring to go. It's gonna be like holding back the grey hound who has sight of the rabbit at dog racing! 
We have the carrot of going to Lapland though for the day in December as any further breaks could likely lead to an operation being needed and thus no Lapland! Lapland is a carrot for us all, it spurs us on and gives us strength and courage to continue. It gives us an aim and a bloody good one at that! 
Harry's passport has already come back completed, just awaiting Callum's and the trip should be in the bag!
The boys know about the trip, but also know we need the passports to come back to go!
Radiotherapy remains on hold whilst Harry's fracture heals. We do very, very much hope with the healing of the fracture that the pain goes and those pesky cancer cells stop multiplying. If the pain goes, then we can delay Harry being  zapped by more radiotherapy and avoid the sickness that comes with it a bit longer! I would so very, very much like to just get to Christmas without anymore hitches! I know we have made it passed Callum's birthday, but again it's had hiccups. 
Can I also ask for clear skies tomorrow as we head to a firework display and bonfire and hopefully a cheeky BBQ sausage!