Wednesday, 30 January 2013

30 th jan. recent pictures!

Wednesday January 30 th. The Final Countdown!

Well Harry managed a whole 3 weeks not having to enter LGI. Truly, Truly amazing! Who'd of thought over a year ago I would have been doing cartwheels if physically capable at 3 weeks without a visit to hospital! But it's been fabulously, deliciously wonderful!
I am also very proud of myself, for not fretting about Harry's blood counts, for going with the flow and the fact that I didn't get his bloods checked just in case they had dropped! Harry wasn't accessed until last Friday as planned, when the community nurse came to our house to take Harry's bloods for pre antibody treatment. The results indicated that his Haemoglobin had risen all by itself and his platelets have just maintained at a low 37, but above transfusion levels. This is brilliant, as these results mean finally Harry's stem cells are working, following his stem cell rescue in June last year!
Since Harry has not had to enter the doors of LGI, he has been able to goto school lots! Last week he went 10.30 till 3.15 every day. I was going to push to get him in at 9, but following a discussion with his teacher, we decided there is no rush. I've been allowed to take unpaid leave until the end of April, so there is time yet to get Harry in school all day. He is coming on leaps and bounds since Christmas. Harry is moving onto harder reading books, with 4 letter words to blend together. His energy levels are amazing. He enjoyed playing in the recent snow, sledging down a small slope opposite my parents house, generally having buckets of fun!
A 5 year old and a 3 year old ignite such contagious excitement at the sniff of snow that I must admit it takes me right back to those treasured childhood memories of my own!
So here we are in LGI, the final leg of the hospital treatment: Antibodies number 5. 5 days of 8 hour infusions of antibodies followed by hydration to ensure his liver remains functioning ok! So all being well home on Saturday. Harry is isolated again due to having a cough and cold. This means better nights sleep as its quiet in our own room, but for Harry he misses playing with other children and becomes more demanding for attention. I have again had people come during the Day to give me a break, as otherwise Harry doesn't like me leaving him for more than 5 minutes! Paul is on nights at work, but has booked annual leave for the end of the week, to take over from me for the night.
Harry has been well so far on this treatment, side effects seem minimal and the background morphine is enough at present to manage any pain the antibodies may produce. This stay so far has been a predominantly lego fest! Harry had brought in some lego he got for Christmas and has literally spent hours making and remaking trucks, snow ploughs, a mobile cafe etc! Granny and grandad brought in some vintage lego today from my childhood to add to the building wave here, no recession on ward 31 bed 14, Harry has planned and drawn with the help of Playworker Claire a town, that includes a hospital, park and a police station!
So our final major planned stay in hospital! Harry has 2 weeks of retonoic tablets to take starting Monday and finishing 17 th feb, but that's a walk in the park! Then that is IT! Then retest time probably sometime in March! So there is the potential for Harry to go over a month without having needles inserted into him to test his bloods! Our security blanket of LGI will remain there, but we now need to enter the big wide world again and LIVE!
I say that in particular, enhancing the fact in capitals, because yesterday another boy lost his battle against Neuroblastoma. Alex Sharp RIP! I have never met Alex, but his dad knew my friend's mum and so we were put in touch. Alex finished his treatment on Christmas Day 2011, just shortly after Harry commenced treatment. We were linked as Alex's dad writes a blogg and I could gain from another families' experience of coping with this disease. However, Alex relapsed in March 2012 and took his final breath yesterday at Helen's House hospice. Alex has had an amazing year with his family, going away on holiday, seeing the Olympics, visiting lego land, air museums, walking, scooting, going to school and having fun with friends. This has been between many hospital visits, including more invasive treatment to ease his pain from his growing tumours and administration of morphine at home. However, Alex's family have shown the world how to live when faced with adversity! To create fond memories that can be looked back on in years to come, which I believe is the way forward!
So we will be making the most of time together, really just enjoying doing the normal fun things we have missed out on over the last 15 months, such as going to the park etc we have center parcs to look forward to in May and I am sure we will be planning lots of other adventures too!
I will update you on the fun I hope we can have!

Thursday, 10 January 2013


Well I feel 2013 has got off to a good start! Yippee!
Harry was not isolated during immunotherapy number 4. I wondered if we would be half way through as Harry usually gets diarrhoea from the treatment, but his poo remained solid, thus we remained in a bay! The first time in months. Despite being noisy, it was the best thing ever for Harry, as he got to socialise with other children. He was very good at encouraging the other children in his bay to join him with his playmobil battles! Being able to socialise has helped him reintegrate back into society quicker on discharge than previously. Thankfully he has been less attached and clingy to me!
Paul was able to come and stay for 1 night mid week as he had midweek days off in between his shifts. This gave me a break and a change of scene for harry. They built 2 air fix aeroplane kits in my abscence! I got to see Callum at home too. When one of our volunteers came to spend a couple of hours with Harry on the Friday, I also managed to indulge in some retail therapy in Leeds. So not such a bad stay in hospital after all.
Such effort had gone into making Christmas so good for the boys and we had a lot pinned on enjoying the festive time and time as a family, that it was down to earth with a bump the Thursday after Christmas, Paul went back to work and I realised that hospital loomed and our Christmas came to a halt. While others had New Year's Eve to look forward to, we had hospital!
I was exhausted after Christmas. Paul's driving course had taken its toll on me, trying to single parent, prepare for Christmas and manage Harry's hospital appointments was hard. Paul I know found the course very tiring and put a huge amount of effort into it, which as you know paid off.
However, the Friday after Christmas I had a poorly eye and managed to get a doctors appointment to have it looked at. It was probable viral conjuctivitus, but i was given some drops. I saw a new doctor who knew none of our recent history. I have been meaning to speak to our GP about getting referred for counselling. I mentioned this whilst I was there on the Friday. I had to enlighten the doctor why I thought I needed counselling and was surprised to find tears trickled easily down my face even briefly recounting our journey. The doctor agreed to research some options, but the McMillan centre in Leeds may be my best option.
I have thought about counselling previously, but since the only place I had been told about was near St James' in Leeds, I knew I would need a reasonable empty window of time to follow this through. With Harry's unpredictable need for blood products coupled with not being able to get him in to school for long either, windows were small and sporadic! Other than infrequent chats to our McMillan nurse counselling has not been readily available, which I have been surprised about. Sure if I go into the McMillan centre in Leeds I can have counselling, but as said above, the opportunity for time to travel and for the appointment had been a luxury unavailable previously.
So we enter 2013 and Harry is doing remarkable. His transfusions are becoming further apart and the end if treatment is very tangible insight! Therefore I feel the windows of opportunity are going to get greater, so have organised some life coaching at the McMillan centre. This uses Cognitive Behaviour Therapy to retune your thoughts and feelings. I am awaiting actual counselling, but in the meantime this is worth a try.
I do feel more positive at the moment. Maybe it has been very therapeutic being able to close a door on 2012. I am trying to park the enormity if last year, never to be forgotten of course, but hopefully not to consume us and hopefully we will be able to move through the rest if the tunnel and out into the open where we will bask in glorious sunshine!
Although in reality, yes we will come through the tunnel and out in the open, but I am aware the ride could still be turbulent. Harry will still be hospitalised if ill at least for the first couple of months post treatment. I know the fear of relapse will be ever present. I am hoping the life coaching may help
me manage my fears. We have to go on living, and I mean living, not merely surviving and going through the process of life as I feel 2012 largely encompassed!
Relapse, Harry's cancer returning is a realistic fear as said before. He has a 30 - 40 percent chance of making it through. Statistics they are only that, but they are there, not to hopefully consume us, but make us aware.
Our aim in the next few months is to have as much fun as possible. If Harry relapses, we are not going to chase treatments abroad. We have thought again about these very costly options. Having again completed more research, they could put Harry into remission for a second time, but currently there is no known person who has ultimately survived following a relapse. Money may buy more incredible invasive treatment in America or Germany, which could put Harry into remission, but only for a period. Neuroblastoma is so aggressive that, if it comes back, it seems to then just keep coming back or mutate into a different type of cancer.
Many Neuroblastoma children have appeals to seek treatment abroad, should they need to. This is an incredible individual decision. Those that do seek treatment abroad are increasing the data on trials and help increase the knowledge there is on Neuroblastoma. However, I do not want to spend all our vital time fundraising for a relapse that might never happen and a cure that I don't believe is out there at the moment. I feel Callum also needs stability, I can't up sticks to America for treatment for Harry, that may not work and in the process produce an unhinged Callum. I know if Harry ultimately doesn't survive then I could end up with an unhinged Callum and the rest!
It's not easy, choices, choices. However, we currently feel to stick with whatever treatment there maybe in the UK without having an appeal, is the right choice.
We hope February signals the end to Harry's cancer and it'll just become a blip in all our lives! Though from that blip I feel I have learnt so much.
I have been reading books, online documents and have been identifying my thoughts, feelings and the whole cancer journey really.
I have read a sample on the kindle of one book, called Extreme Parenting. It details that when parenting a child with a chronic illness then extreme parenting kicks in! The demands are heightened when parenting a child who is chronically ill, when frequent hospitalisation is necessary and then when at home the goal posts change, to those usually equated with the 'normal' development of your child. The past year has been one where we have felt that parenting our 4 year old Harry has resembled more like parenting a baby or a toddler! Harry has been through so much and us as parents have had to make decisions around his treatment that we never had thought imaginable! As said extreme parenting. The decisions over the last year made the whole choice of school for Harry and in April hearing the results, become quite insignificant. Without the treatment Harry has endured, then the decisions on schooling would have been meaningless, as he would not be here!

Here is a quite from the book:

Sharon Dempsey quotes (showing 1-1 of 1)
“All parents set out with expectations, hopes and dreams for their child. When a child is diagnosed with a health problem, these aspirations are altered. While one parent is hoping to see their child graduate from university, another is praying that they can live pain free”
― Sharon Dempsey, Extreme Parenting: Parenting Your Child with a Chronic Illness

So today we have a fabulously energetic Harry, wonderful! We do not have a date organised for Harry's bloods to he checked, as it was agreed to just leave it till he shows symptoms of low blood counts. I am actually ok with this. However, so far so good, but I am sure in a few days or a week, when Harry is tired and very grumpy and agitated, it'll be hard to decipher if it is due to low blood counts or perhaps Harry battling to keep up with us pushing him into schooling and attempting normality and a routine!
As always time will tell, but today is good and that is what counts at present! I lick my lips as we have a period anyhow of the most normal we have all been in a long whole!