Wednesday, 25 September 2013

Wednesday 25 th sept

Our world is such a strange one these days. We have parallels with our peers and at times complete opposites. 
I make a point of not talking about how Harry is or us most of the time as what is the point, it is not good playground banter. It is hard for people to comprehend anyway what life is like at times when seeing Harry run around. 
However, our days do not start early in the morning like most of yours. I wish they did, but they don't. Callum wakes early and will often have breakfast and watch the i player on the IPad. We try and make the least amount of noise so not to wake Harry. On a nursery day I will get Callum up and off for about 9 am, I am trying to get him in earlier as in the holidays he was getting in later and later, not wanting to miss out when Harry was off school! 
However, on a non nursery day we can often still be in our pyjamas at 10, not wanting to go upstairs and get dressed and wake Harry! Sometimes, we feel the fog on our lives in the morning, as neither of us sleep well these days and trying to get motivated to start the day can be like treading through treacle! I would say we are frustrated and angry at our lives at times. Anger isn't something I like to harness or let take hold of me for long, but it is there. It's hard to accept that I will only return to work when Harry has died and only then will our lives have more routine like it used to. I also know once Harry has died how I will wish ever so hard to just spend one more minute with him to see his smile and hear his laugh, jokes and good humour. 
So we press on and have projects in the house to keep us occupied.  We are still making progress with our house and have finally lawned the raised area in our back garden with paths complete! Sheds are going where they should be and not stacked up at the bottom of the garden. The garden is coming to life again and yes I know it's Autumn, but a good time for planting !
These projects keep us ticking, keep us focused and keep us from thinking about cancer! 
Harry had a bad day last Thursday. He slept till lunchtime, which is not unusual after a patch change, he awoke in a huge grump, not unusual either, but the level of pain he was in, was more than he has been in for weeks. I had to give him extra break through medication, the first time since August. Harry's tummy hurt, his legs, his spine! As you can imagine my fears escalated as to the future and tears trickled down my cheeks as I drew the syringe of medicine from the bottle to help ease his pain. 
The medicine made him sleepy and he laid in front of the sofa watching TV and fell asleep. 
My sadness turned to Callum too as since Paul was out taking his car to the garage he missed out on socialising with his friends as I could not leave Harry. 
However at 2.15pm Harry suddenly proclaimed that he wanted to go to school! Music to my ears! We arrive for the last lesson!
Harry was shattered on his return home and went to sleep again! I was unsure how he'd be on Friday, but he awoke raring to go. So much that by the time I had dropped off Callum at nursery and had gone for a run, Paul had returned home having dropped Harry off at school. Fabulous!
So we had a good weekend! The weather had brightened and we took advantage of the sun on Sunday and headed to Whitby. We caught the steamtrain  from Pickering to Whitby, met friends up, enjoyed lunch and then headed to the beach! The sea was actually warm having been heated up all summer, though we did just paddle! The boys love the beach and so do I! A great day had and a much needed boost after the dip we had on Thursday! 
Harry still has intermittent pain, nothing to stop him doing anything, more of a niggle and annoyance. I am so very acutely aware though that, that is how this all started and we are very nearly at the 2 year anniversary of all this. The 10 th October 2011, the day Harry first awoke with intermittent leg pain, pain that baffled the medics until diagnosed on 12 th November. 
 Due to the pain present I fear returning to changing patches every 72 hours and I think will remain at 48 hour changes as he does have a really good day the day after patch change and we have to make the most of these!
Harry made beavers tonight and for the first time in his uniform. You can see him in his uniform at the top of this page! 
Harry keep smiling my beautiful boy! 

Wednesday, 18 September 2013

19 th sept

Harry had a fabulous birthday. He opened presents from us in the morning, then went to school and got to open more presents on his return home, followed by a birthday tea! He has some wonderful presents and cards - thank you everyone!
He loved his cake made by Becky Lister - a racing car. I made the cake for his diggerland party - a big chocolate affair, but was pleased not to make the cake for his birthday too! Thank you Becky!
On Friday Harry went to cycling club for the first time, he was unsure about going as it was drizzling and wasn't in the best mood, but having decided to go he loved it so very much and can't wait for cycling club this Friday! He managed to get a rider of the week certificate too for careful listening,  following instructions and good turns!
Overall Harry has had a good week. His patches are being changed every 48 hours. I'm still sat on the fence with regards if this is the right thing to do. It's to try and keep an even amount of fentanyl continually being infused into Harry. However, we have had quite a few days where Harry has slept till lunchtime. Irritability still remains an issue too. We will continue for another week and see. Harry got into school for 10.15 today, the earliest in a week! It has generally been lunchtime. However, he is going and enjoying school.
Harry has had intermittent pain in his leg, which makes our stomachs turn and we are on our guard. Nothing to prevent him doing anything for very long, but nonetheless any tweaks make us nervous!
Callum seems to have really grown up recently, in height and his abilities! He is fab on his bike with stabilisers now, we now need to aim to take them off. He loves colouring and will sit and do this, particularly at bedtime! He sneaks into Harry's room when he is asleep and takes his pens! He even had scissors and glue the other night and cut some pages out of his peppa pig annual and glued them onto another page. He was so quiet I thought he was fast asleep! 
He woke up about 6 am this morning  and was singing and talking to himself in his bedroom for a while before coming into our bedroom disguised as The Gruffalo! Then he transforms later into a fireman ready to save the world at nursery! What it is to be 3, nearly 4! Since Harry's birthday he is counting down the days till his! 


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! 

Wednesday, 4 September 2013

Wednesday 4 th September 2013

Harry was supposed to see his consultant last week at LGI, but we found out she was sick and the appointment was cancelled. The sun was shining and it was the last week of the holidays, so not ones to waste the opportunity to have fun, we took Callum out of nursery and went to Stockeld Park near Wetherby. They have had a summer adventure themed park, now closed in preparation for their winter wonderland! I think a lot of it remains the same really in winter, but with more sparkle and Santa of course! There was an enchanted forest with lots of little play areas to keep the children entertained, pedal go karts, a giant bouncy pillow, a giant inflatable slide, outdoor play equipment and a maze! The boys loved it! Can't wait to see their winter wonderland! 
On Thursday we met friends at Golden Acre Park, both boys took their bikes. Harry is keen to go off racing ahead, until he spectacularly came off his bike, sustaining wounds all over! Having patched him up a little, he very bravely got back on his bike! He has basked in the glory of his war wounds, but his knees are still a scabby mess!
We have kept Harry at the same strength of fentanyl patch 50 micrograms. We don't dare reduce it again! This level of pain relief keeps the pain at bay and enables Harry to jump around and be himself!
Since he does sleep in, in a morning I was concerned about him missing school and getting behind with the basics and then having repercussions on him not wanting to go to school. Anyway, having had a meeting with the new head I feel support is going to put in place to enable Harry to maximise his time at school and for him to have a positive experience! 

Harry had his 6 th birthday party on Monday a visit to diggerland! A fitting way to finish the summer holidays! 
Harry had 3 boys from school and 3 friends, whom he has known since he was a baby. He also invited Michael so that Callum would have a friend too! With 9 children and 10 adults, I'm not sure whom had the most fun, the adults or the children! With smiles all around, apart from when in deep concentration mode on the diggers or the go karts, fun was had by all! The weather was good, but a little windy and the dust from the robots being driven on the dry sandy soil, felt like the Saharan dessert! 
The day was rounded off by fun on the dodgems, each child having a competitive adult with them = lots of bumps! Then it was ice creams and for the less ironed stomached a play in the indoor play area and the courageous ones went back for more twists and turns on spin dizzy! A great birthday celebration. Diggerland did us proud yet again. Such a lovely, warm and friendly place! Thank you diggerland!
Tuesday = day 1 of the Autumn term! Year 1! School again!
Harry started off the day waking unusually early, following a new fentanyl patch being administered. Having put it on later than usual the night before, coupled with him getting up and moving around earlier than usual made his stomach unsettled, the result being projectile vomit around 9 am!
Harry was keen to go to school an hour later despite this set back, but I wanted him to eat and keep something down before school, so following toast and no more vomit he arrived in school for 11.15 am, bright, excited and raring to go!
Having got Callum in nursery too, it felt very quiet back at home. I felt quite emotional really! Quiet means time to reflect! My boy has made it to year 1, not something we had much hope of a few months ago or even a few weeks ago, when Harry was being sick again. Harry had his 6 th birthday party, again another milestone, enormous in fact. 
Tonight another milestone, Harry started Beavers! I emailed the colony back in February, when the future was bright and  filled with hope, I'd forgotten about it until an email arrived last week saying that Harry had a place! I stayed 10 minutes with Harry, then left him to have a cuppa with a friend whose son was also starting beavers with Harry! 
I don't know how long Harry will remain as he is and able, but to continue to give him opportunities and make his life meaningful is paramount to us!