Wednesday, 11 September 2013

The eve of Harry's birthday 11 th sept!

Another week has passed! We went to LGI last week to see Harry's consultant, but she was very busy so we ended up seeing another consultant, whom we have seen at points in the past, so not unfamiliar, but not too familiar! It was nearly 2 months since our last appointment. Our lovely McMillan nurse was there for the meeting and she is the one constant who knows what has been going on from the medical side! 
She had come straight from a meeting with Harry's school, to give them the medications Harry needs, whilst at school and to give them an up to date care plan for Harry.
We went to the meeting with the intent of asking for another MIBG scan, which would give us information on where Harry's cancer is. I guess we want information to try and inform us how long Harry has left, as the last scan was nearly 6 months ago, following which we were given the fateful news that Harry had relapsed. We were given approximately 6 months life expectancy for Harry, this is based on previous knowledge of relapsed neuroblastoma. However, we are very nearly 6 months on and Harry is still here. We have had turbulent times since the end of May, the point at which Harry commenced a pain management plan, which has had to be altered at various points. He has only had radiotherapy as a form of treatment. His platelets have never reached 75 to be considered for chemotherapy, of which I don't think we would put Harry through anyhow, as its not a curative pathway, just possible a way of slowing the progression of the disease, but there is little evidence of the success of this anyhow. With Harry not having any specific treatment we thought he would have died by now or been comatosed on morphine. Had he not had the radiotherapy in June, then I think things would have been very bad and the summer would not have, happened.  We are thankful for our decision to proceed with the radiotherapy, but anymore would have to be carefully thought about as Harry did have several weeks of intermittent sickness afterwards and lost weight. He has however, gained weight. Whoop!
Having had a discussion with the consultant re having another MIBG scan we decide to discard this for now. Purely because the scan may show that Harry has a lot of cancer, but the progression of the disease would still be hard to timetable, it could show that the disease has not spread as far as expected, but following the scan it could then have a sudden growth spurt, still giving us no indication as to timescales. 
We are therefore left in the land of the wilderness. Sometimes I dream about Harry being like Jane Tomlinson  and living well beyond expectations, sometimes I think if everything can remain equal into November past Callum's birthday, Guy Fawkes, fireworks and the smells and colour of autumn: my favourite time of year. Not Christmas where the pressure to have that fabulous time and encapsulate those pictures in glossy magazines of fun and festivities, which can become all too overwhelming.  
November is when I start getting giddy about Christmas, the crunch of leaves underfoot and the dark evenings. Fireworks, magical festivities in the sky, the smell and sound of bonfires, toffee apples, soup in mugs. I have very fond memories as a child of bonfire night. Now it's Callum's birthday too!
As previously said we try to live one day at a time. Children do and I am trying very hard to do so, but its not my instinctive nature, as having read this you know I am a planner!
I have days when I struggle with what is happening, our loss of routine, jobs, loss of purpose, loss of everything we used to know since cancer entered our lives nearly 2 years ago. I hear of so many others being affected by cancer too. It's a hugely complex and diverse disease. We may have come up with vaccinations and cures for x, y and z. There is always something new on the horizon to be battled with though. Scientists will never go out of business, there will never be a cure for every disease, it's always a case of playing catch up as new diseases are continually being diagnosed. Without scientific research and treatments being formulated to battle neuroblastoma, Harry would have died some time ago. However, Harry has started year 1 at school. I am so very proud of him. Each day we are never sure how long he will get into school for,  as we let him wake up naturally. He's on a lot of drugs, so to wake him would be foolish as he would not be able to cope with the day ahead. Harry is usually in school for lunchtime. Today, he slept till 12.15, so it was after lunch. We are trialling changing his fentanyl patch every 
48 hours instead of 72, to try and prevent the dip Harry seems to get on day 3, followed by a surge when the new patch is put on, which leads to monumental mood swings and irritability. 
Today was day one following the patch change after 48 hours, he slept till lunchtime, but was in a good mood for the rest of the day. He made it to beavers, I stayed 5 mins, seeing him over a wobble as the first game was quite physical and he couldn't do it. However, I asked if he could help referree and he was soon joining in. I left him and went for a run with my friend Claire, whose son is also in beavers. When I collected Harry he was intently watching an experiment and was in no way in a rush to see me, till the end. I think for next week I will be purchasing the uniform! 
It's a strange life as I am so keen to ensure Harry has opportunities to develop, but deeply aware his development will be halted sometime soon. It's excruciatingly heartbreaking. I often feel its so cruel to let us see our son develop into the great chap he is and have it taken away all too soon. However, Harry touches many hearts, inspires people,  has tremendous get up and go and he creates awareness of cancer.  
Today is the eve of Harry's 6 th birthday. I only too clearly remember 6 years ago! Harry was born just after 1 am. I went into induced labour at 5pm, my waters had already broken and because I had started to bleed I was induced via a drip. Harry was born 2 weeks early and was a tiny 6lbs 5 ounce. My beautiful bundle of joy. Harry was conceived 15 months after first trying and was very much wanted. I remember waiving the pregnancy test stick in front of a sleepy Paul's face, he'd just gone to bed after night shift! Once born you count their fingers and toes, rejoice that all tests find him healthy, count our blessings and never once thought about childhood cancer being on the horizon, getting ready to rob us of our beautiful child. 
Not to dwell on cancer, but to rejoice that Harry is going to be 6! We have a little birthday tea planned, another cake with more candles! It's gonna be fun! 

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