Tuesday, 6 November 2012

6 th November a time of reflection

Well since my last blogg we have been able to get away! yay! We had hoped to go away the Sunday afternoon (28th), but Harry needed a platelet transfusion and a red blood cell transfusion as it transpired after another blood test. Daddy got Harry to hospital for 9.30 to try and get completed and off on holiday ASAP, but as always as soon as you set foot in hospital it's like you are on a different time zone! Harry arrived home about 6, we rushed tea and set off about 7, arriving at our destination in Lincolnshire for 9! The boys slept on the way, but awoke on arrival with a twinkle in their eye to run around like mad things for the next couple of hours! They remained like loonies the next couple of days and were completely giddy with being away somewhere new! Luckily for an exhausted mummy and daddy they calmed down on the Wednesday! I think the platelets and red blood turbo charged Harry! At least we did not have to visit the nearby hospital we had been linked to whilst away!
We visited the seaside, a working windmill, a castle and we even saw a Lancaster bomber taxiing down the run way and afterwards we got to have a look inside! This was courtesy of The family who own the aircraft. It is a memorial to family lost in the Second World War and is part of the East Kirby aviation museum. The family knew about Harry's journey from our friends Susan and Stephen whom we stayed with and they pray for Harry's recovery too! Harry loved seeing all the aircraft as did we all!
So the holiday was a success, and a lovely change of scenery. We thank Susan and Stephen who have Labernum B and B for their generous hospitality.
On the way home we had lunch with my cousin Richard, wife Caroline and their 2 children. Time flies and we hadn't seen them for 9 years and never met their daughter. It was great to catch up and all 4 children really got on, which is always a bonus!
One thing I haven't mentioned is that Harry can ride his bike without stabilisers! He's had a few falls and wobbles, so thankful that he'd had his platelets topped up! But he's doing really well and is very proud of himself!
Don't remember also if I have said that Harry has lost 2 front teeth and has therefore been visited by the tooth fairy twice! Though the second visit was a night late! Mummy was so engrossed in giving Harry his medicines down his NG tube that I forgot to leave the £1! Oops! Harry thought the tooth fairy was poorly and all was ok!
On Saturday we went to Jack's Journey Christmas Market in Settle, raising money for the brain tumour society. We met Jack and his brother James, when Harry had his radiotherapy in the summer. Jack is awaiting scans at the end of November to see how his tumour responded to the radiotherapy, he was clear for 18 months, but relapsed, thus having radiotherapy to try and blast that tumour away again. The Christmas market was brilliant, the boys won loads of things on the tombola! Jen, Jack's mum and her team really pulled the stops out, they raised over £4000!

So, Sunday brings us to Callum's birthday party! We had it at the social club at High Royds in Menston where there is a big room, heather did us proud with providing food and Becky Lister had made an amazing fire engine cake! Callum had a great time, thanks to all that came and had some fab presents too!
We topped Sunday off with going to a firework display at Stockeld park near Wetherby, the first big display we have been too with the boys. Apart from Callum complaining of the bangs a bit towards the end, both boys really enjoyed it! So a successful fun packed day, which was great as Harry went back into hospital on the 5th! Yes Callum's birthday. We gave Callum his presents in the morning, which was playmobil fire engines and accessories, a massive hit!
So, with daddy working, Callum goes to granny and grandad's for the day and I take Harry to hospital for his second course of antibodies for his immunotherapy treatment. Again, as soon as you enter the ward its hospital time again and despite arriving at 11.30 am, Harry didn't start the 8 hour antibody infusion till 6.30 pm, which meant every 30 mins till 2.30 am Harry was disturbed as he needed observations being done to ensure there were no undue reactions to the immunotherapy. As you can imagine Harry didn't like being disturbed, well who does! He kicked off around midnight and was really fighting the nurse! He calmed down though and his Obs were done! What I find irritating is when the nurses don't get why Harry would be irritated, when awoken from a deep sleep and then prodded about! tonight the antibody has been started 1 hour earlier, so it'll finish at 1.30. So far Harry is fairing well and just has stiffness in his joints and a little water retention! However, how they react to the treatment can vary from course to course, but for now we are pleased! We are even more pleased that following seeing Harry's consultant she agreed that Harry is doing above average at this stage of his treatment!
To say only 2 months ago Harry was so very frail and poorly we can only thank all these people who pray and think of Harry as his turn around has been amazing!
We approach the anniversary of Harry being diagnosed, which was November 12 th and with that we begin to reflect on the last year! I could not envisage being in this situation a year on, but here we are!
Ward 31 has become a familiar place that is like a second home. Harry settles quickly into being at hospital and is familiar with many of the staff. We have seen some fantastic nurses leave over the year, particularly Kate Barnfield who has gone to Australia to work in oncology there for a while. Play workers have been on maternity and come back! Last November we were told Harry's treatment would last around a year, so I thought we would be done and dusted before Christmas! However, Harry needed extra chemotherapy in February thus year, which caused about an 8 week delay with treatment and extra tests! Then we delayed radiotherapy a week to go on a much needed break away to Filey, then we never envisaged the complications Harry had following radiotherapy on August/September causing another couple of weeks of delays! A year was probably the quickest the treatment could be completed, but its nearer 17 months!
I've been adding up the number of days Harry has had to stay overnight in hospital and it is approximately 135 nights! On top of that he has spent numerous days as an outpatient, it is easily 60 days as an outpatient, but that doesn't include all the days for transfusions and trips to have his NG tube refitted! So for many of the remaining 166 days left of the year, Harry was only really well and on top form for a few of them. Probably in total Harry has been really, really well for about 12 weeks or 72 days at various points this year!
We have been on a roller coaster of emotions that can never be underestimated. We have signed numerous forms this year, consenting to Harry having very invasive treatment. He had had numerous anaesthetics, whether for a simple bone marrow aspirate to having his tumour removed in a major 8 hour operation in April.
We have met children that have died this year, we have met many newly diagnosed children with various cancers. We have in short entered a world we new existed, but had never given much thought to. Yes we know many people who have had adult cancers, but not childhood cancer! The ward have children from about a 90 mile radius, so covers a vast area, hence seeing so many different faces on the ward!
Without the treatment Harry would have died last year, that we are sure of. To have him here now, we cherish dearly. We know of 4 children who have died from Neuroblastoma this year and 2 that have relapsed! This is sobering information! We know the treatment has been horrific and questioned at times if we had done the right thing consenting to it, however we have hope now for a long future for Harry. We will certainly be enjoying having a much more healthy Harry this Christmas and intend to have some fun festive fun!
We thank everybody who has supported us over the last 12 months . We thank God that Harry is still here and we ate still standing too. Paul and I are are not rocking backwards and forwards in a chair quite ready to be sectioned! However, the turbulent year does put you at an emotional and physical disadvantage at times. There have been days when I feel I can't plough on, but you accept these days, shed done tears and pull yourself together again. I also admit that our marriage at times has been under considerable strain. When you just have time to meet on a ward or a rare lunch in between caring for your very sick child, well I think it's enough to challenge the most stable if relationships. I do remember writing in Nov last year that I wondered how we we all fare, including Callum with the months of Harry's treatment ahead. I feel we have done our best, none of us will ever be quite the same, for we are all a year older, definately much wiser, much richer in life experience, but most of all still a family!

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