Thursday, 2 January 2014

2013 - the year of planes, trains and Automobils

We entered 2013 with Harry having his penultimate immunotherapy. At the stroke of midnight on New Year's Eve, I was having a small glass of  fizz in the playroom on ward 31 at LGI. Daddy was working and Callum stayed at granny and granddad's house.
This year at the stroke of midnight, we were all under one roof at home, with the boys tucked up in bed, we toasted  2014 in with friends Mike and Dee.
We had a lovely evening and a far cry from the previous year. However, in between these 2 events we have been through some of the lowest points possible, but also had some of the most amazing experiences, fun and laughter. We have learnt to live life to the full, when Harry has been well enough and we have created a massive memory box, one that isn't full and we are set to continue filling this as we progress into 2014. We have met some lovely people this year and have been astounded by the human kindness of others, from people we don't know as well as those we do. We have also found some people have raised above the bar to be there for us and as happens in these situations, we have been disappointed by those who haven't. Those people who find our situation too hard to deal with, so ignor it and carry on with their own lives, not wanting the sadness we carry to affect them. Life is hard and cruel at times, but it is the knowledge that friends and family are there to support us through this time and beyond the loss of Harry that will get us through this. 
At the beginning of 2013, our greatest fear was that Harry would relapse. Harry was so well at the beginning of 2013, so much so, I really thought that he would have been given the all clear and relapse would have been something we would still be fearing, alas it became our reality in March when were given the end of treatment test results. Our hearts shattered that day, as we struggled to comprehend that Harry had disease back in his bones. Harry's blood counts remained too low for any treatment that could prolong his life, however, never proclaiming to be a cure. Always mindful anyway of treatment versus quality of life, we have always been reticent about chasing more treatment. Harry had already endured one of the most aggressive treatment protocols there is to kill this hateful disease and for Harry it hadn't worked. 
Before Harry had relapsed I had feared the fact that there is no treatment protocol for relapsed disease, but now I have a greater understanding and have come to realise that there are so many different combinations of how relapsed Neuroblastoma presents, the pathway I feel has to be individual. For some a tumour can reappear that can be operated on, or shrunk again with chemotherapy etc. For Harry the disease isn't concentrated to one specific area, but is spread out in 3 hotspots in his bones.
Having been given the devastating results, that Harry had relapsed disease and that he was now incurable, terminally ill and eligible for palliative care, well we set about our journey of adventure. We were given a probable life expectancy of only months, based on how aggressive the disease had manifested itself in Harry in the first place. We are aware of children dying only weeks or months following a confirmation of relapsed disease, so we knew this was possible, despite Harry seeming so well. 
I can't put into words the utter devastation we felt then and still continue to feel. We may smile and laugh, but behind the exterior are tears of sadness. 

We kick off our adventures in April. Paul   goes on sick leave at work and I remain on unpaid leave from my job.
Since April it really has been a case of planes, trains and Automobiles. 
We fly down to heathrow, then hire a car to get to lego land in Windsor, then once at lego land Harry drives the electric cars there, we all enjoy the multitude of rides and the amazing pirate room was the icing on the cake. 
Harry loved visiting the Duxford imperial war museum, which has a huge range of planes to look round and admire! later in the month we went up in a helicopter over the Wharfevalley, paid for by our lovely friends in Otley. In May we finally got to go on our postponed centre parcs holiday and it was a case of cycling, swimming, racing Harry's remote controlled car and even venturing on the lake in a pedaloe.
Mid May, Paul's work colleagues put on a fun day, raising funds for us to continue  having adventures etc. this was a hugely successful day, not only raising £6000 for us, but was enjoyed by all. So many of our friends came and family too. The boys had a ball and we saw so many familiar faces, it warmed our hearts to know so many people cared about us. The day ended with a balloon release, which was so poignant, my eyes stung with tears! Harry was just starting with a limp that couldn't be denied, we knew the cancer cells were growing, but he never let it stop him bouncing around and having a smile upon his face. 

At the end of May, Harry and his friends experienced a Go-karting party, donated kindly by the company, harry loved his driving experience.  This  was followed by a trip to Diggerland, where he drove robot JCBs, Callum and Harry drove more go karts and operated diggers of course!
Half term finished with a visit to friends whom have jet skis! Harry sat on the back, whilst daddy speeded round the lake and Callum came on a crocodile inflatable with me. towed by another jetski. Callum and I however experience the coldness of the water as we came off going round a corner. Thankfully Callum thought it was funny and smiled through it, whilst I panicked for him! 
At the end of May, despite having had these amazing experiences Harry's limp became too painful for him to smile through, without the commencement of morphine. This was a hugely emotional time for us. Harry's pain increased rapidly and so he started on fentanyl patches, providing less side effects than oral morphine and a constant slow release of the drug. 
We really thought that it was the beginning of the end and so seized the opportunity that candlelighters gave us to  use one of their caravans in Filey at the beginning of June. The sun truly shone that week and Harry's pain was managed with the fentanyl patches. We did the simplest things that week, looking in rock pools for crabs, digging in the sand, playing football. It was fab and we even had a family day with both sets of grandparents. Believe me when you think the end is in sight you saver every moment, laughing with tears of sadness, unsure if the 4 of us would walk hand in hand again, run around and be together.
I was so pleased we went away, as memories help you get through the tough times and the remainder of June certainly was truly tough. 
Once back from Filey, Harry's pain increased and with that, so did the level of his fentanyl patches. As we have come to realise, there can be trade offs to taking drugs and Harry experienced, itching all over, trouble urinating, extreme fatigue and agitation. We venture into the hospice for the first time to try and manage Harry's drugs and pain. We are told whilst there by the doctors that they thought we would not make the summer with Harry and to prepare ourselves for the bitter end.
However, once Harry's drugs had been changed he was within days up and about again! Martin House Hospice is a fabulous resource and the fact animals can visit and there is an abundance of staff to provide therapeutic activities, Harry hadn't time to spend confined to his bed! 
In fact rather than settling for making Harry comfortable it was agreed that he could have radiotherapy to ease the pain in his leg, which he had at the end of June.
Again harry experienced the severe side effects that treatment can cause and July was very hard to get through. Radiotherapy seems to make Harry very sick and he was intermittently sick throughout July, though we seized the good days and managed some trips out, which again got us through those dark days where we were confined to the house, unsure how beneficial the radiotherapy had actually been. 
Thankfully the radiotherapy has been very beneficial and we managed to make it on our summer holiday to A caravan site near Bournmouth. We had an amazing week. I can't believe how much we packed in, visiting theme parks, a car museum, a plane museum, playing on the beach, a trip to the zoo and my favourite day -  a trip to the Isle of Wight, where the boys had their first ferry ride, first experience on a chair lift, Harry and Daddy tried zorbing and we still have our glass ornaments filled with coloured sand to treasure! 
On our return, Harry was poorly again with lots of aches and pains. Our Mcmillan nurse visited us twice in one day giving intravenous anti sickness and morphine to settle Harry. It seemed that I had taken his fentanyl patches too low following radiotherapy and perhaps reduced them too quickly. Once, Harry's fentanyl patches had increased, things were good again!
Harry reached his 6 th birthday, an absolutely amazing milestone for us! He returned to school, starting in year 1, he commenced beavers and cycling club. 
We managed to enjoy the last warm day of September by travelling from Pickering to Whitby in a steam train.  We enjoyed meeting friends for lunch and making sandcastles before returning hagain.
Despite, Harry having many good days it was evident that every day after patch change, Harry slept in, which meant he struggled to get to school that day and he would often be sick too, a side effect of the fentanyl. We therefore tried a new patch - buprenorphine, which Harry has tolerated much better, with less side effects!
Having thought we were on top of things and thinking normality could be present for a while, Paul and I consider returning to work! However, it always seems to be that once we can get the chance to have a breather, things go wrong again!
Harry commenced with intermittent pain again in his leg. 
We asked for rescans to see where the cancer was in Harry's body. 
Harry's pain became unbearable for him on 24 th October, again we consulted with our McMillan nurse, whom had the scan results! We had feared that Harry was riddled with cancer, having already exceeded his 6 month predicted life span, we knew he was on borrowed time. However, the scan results indicated that the disease had not spread in his upper body, but was back in his pelvis and upper left leg, where the pain was.
We met Harry's  consultant in clinic on Friday 25 th October, feeling very depressed as Harry was in so much pain. It was agreed that radiotherapy was worth a shot again to give Harry some quality of life Back. Having, got completely down about the prospect of radiotherapy and the sickness that goes hand in hand with this for harry, we were truly astounded to find out only hours later that Harry had a fractured femur!
Radiotherapy was postponed as it prevents fractures healing, Harry received a walking frame and became hop along Harry as he was non weight bearing for 2 weeks!
We were relieved that this seemed to be the cause of his pain, but reticent about not zapping the cancer cells for fear they would  multiply at an alarming rate. 
However, we were  given a carrot that same day that we had  that roller coaster ride in clinic at Lgi - a pending day trip to Lapland for all 4 of us!
As always, hop along Harry or not, we still headed to Scotland for half term to visit friends on October 26th! We went bowling for the first time with the boys and to the cinema. In fact twice that week we went to the cinema, trying to do low key activities. The second visit, we saw the film 'planes', a Disney movie. I have to say tears streamed down my face during the movie. Dusty the crop hopper truly reminded me of Harry, against all odds he won the race.  That film has really caught Harry's imagination and suddenly his Santa wish list was dominated by toys from the movie! 
Harry's leg thankfully improved and his pain decreased! Having feared in October that our Christmas would end up not happening, Harry has gone from strength to strength. December has been an amazing month! A month that I can not tell you we feared, for thinking that Harry would be in pain, or sick and weak following radiotherapy etc! 
The highlight of course was making it to Lapland. Harry continued on the theme of planes, trains and automobils. It was a 3 hour flight and once there Harry drove a ski doo and went on a sleigh pulled by reindeer!  This trip was so very, very magical and has left us with the greatest memories! We recorded the few minutes that Calendar showed of the trip and have dined out on watching and rewatching this! We all have a few seconds of fame! I can't wait to get the full DVD that is being put together, which we receive in February.
Harry is back riding his bike and we are thankful to get both boys back out in the great out doors despite the weather.
Harry has had recent aches and pains in his chest and as you can imagine our hearts miss a beat. However, he's been very well the last few days and he was shouting the loudest I am sure at the pantomime Aladdin!
Harry returns to school on Tuesday. Probable for his usual 3/4 days. He will be able to return to outdoor play though and run and jump with his peers.
We have a holiday booked to centre parcs on the horizon. It was booked in May and we will be going with friends. When we booked it, I really thought either Harry wouldn't be with us, or he would be far too poorly to go, but we booked it knowing our friends could take over the booking if need be. As things stand this  week, it's gonna be a fabulous break away! We are all really looking forward to cycling, swimming and enjoying the red squirrels again! 
Paul is going to get back to work this month, but I will remain off at present, holding the fort! Since Harry doesn't get into school till around 10 am and he does tire at the end of school, working 22 hours a week, feels a step too far, to rely on child care to support Harry before and after school. 
I do have some ideas for projects I could get involved with voluntarily though! 
I have been reluctant to say 'happy new year' as we do not not know what lies ahead. Harry has outlived the 6 month life expectancy he was given by medics. 
Unchartered waters it very much is. 
I certainly cannot live more than a couple of weeks ahead. Yes, I dare to dream that Harry will be here at Easter and it would be fabulous to have another summer with Harry. However, only if he is well enough to have quality if life. Harry does look frail to us, not healthy, but often grey and pail. He can be very hard to live with at times, due to the medication he takes, however, quality he does have to his life and we will continue to embrace that! 
The adventures continue - who knows what the future holds, but you can bet we will grab the good times, let 2014 commence! 

1 comment:

  1. Wow - loved reading this Sarah. What a trooper you have in Harry. I know that life can be so incredibly cruel but just look at what your little lad has achieved and continues to achieve in his short life. Keep making those memories. Here if you need x