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!