Friday, 12 October 2012

Oct 12th immunotherapy day 5!

Well, Harry has completed his 5 immunotherapy infusions for this set! One step closer to our freedom from LGI! Harry has been fantastic as always. He just accepts the need to stay in hospital for a few days. Yes, today he has been a bit more demanding and needs reminding of his manners at times, oh and he is becoming fantastic at delegating tasks, a good and bad skill! Good if you are a team player and you are clearly just doing other tasks, but bad if delegating all tasks whilst you put your feet up, or is that just clever? Perhaps, but in the long run the latter type of delegator will be resented! Anyhow, Harry is a team player, he's always doing a task, whilst delegating other tasks out, he's usually doing the creative task such as drawing though, whilst his helper has the task of cutting out! Today, Harry wanted paper chains made in abundance for a party for his cuddly toy dog, Becky! He's got the play workers in the spirit by asking for party bags, goodies to go in them, balloons and cake! Voila, we are now suitably decorated and ready for a party, perhaps a post immunotherapy party!

Harry deserves it as again he has been through the mill. He's faired reasonable apparently! One kid ended up in intensive care last year on this treatment! How Harry has reacted this time should give us a fare idea how he will react to future courses. The first one so they say is the worst, so fingers crossed. Though other side effects can creep in by the third session, such as poor eyesight, though these effects should be temporary. Harry remains on morphine tonight as he has had to have several presses of his morphine to give him a boost to counteract the pain. It suddenly comes on and is severe arthritic type pain, he has pain in his joints, as well as high temperatures, flu like symptoms, water retention, he put on 2 kilos in under 24 hours and not forgetting diahrroea. These side effects wear off a lot in the morning, then build up again come the afternoon with the next immunotherapy infusion!

The immunotherapy infusion is transfusing antibodies into Harry. These antibodies are foreign cells. Harry's existing cells do not like these, so his body is fighting them and putting up a resistance. So why does he need these foreign cells? Well they attract and eat any cancerous cells still left, or dare rear their ugly head. The antibodies then neatly dispose of the cancerous cells, hopefully meaning none are able to attach to each other ever again and form another tumour!

So we pray very hard, that this leg of the journey proves worthwhile!

So once out of here, not sure of discharge day yet, but we will have to have fun, so Harry has lots of good things to remember before Nov 5 th, not only Callum's birthday, but Harry's next date with his immunotherapy.
So this week at points has been a tale of 2 lives! On Wednesday, Ian Harding had arranged another gig at Tiger Tiger in Leeds to raise money for the oncology ward. So some toys can be bought. Harry has his eye on More playmobil as the ward has a limited amount and some of that is broken! Anyhow, as always I create a military operation to get us there! Originally Harry should have been at home, but this treatment was delayed by 2 weeks, due to the problems Harry had back in September. So, the military operation! Paul's parents were draughted in to look after Callum and my parents came to sit with Harry at LGI! This was so Paul and I could relax a little and enjoy tea, which we hada lovely   meal at 'the Thai Cottage' followed by pre gig drinks at Tiger Tiger! The senators, the headline band, commenced their set at 9.30 and it was straight away fabulous music and I adorned my dancing shoes! However, not to leave  my parents and Harry too late I had to steal myself away from the rocking music at 10.15 and head back to the LGI. So in the space if 20 mins I turn from rock chick (well I thought so, but in reality probably a dancing baboon, but it was fun) to nurse Sarah, helping Harry urinate into a cardboard bottle and assist him press his morphine button to help ease the pain!

Harry went onto have an unsettled night, just glad I hadn't over done the beer, as tempting with half price drinks pre 9pm, as negotiating unplugging Harry's 3 machines;  helping him out of bed; disconnecting his saturation level monitor from his toe; pushing his trolley stand, not tripping on his wigglies;   negotiating a cardboard bed pan into the toilet (so his output can be monitored) plus not forgetting actually helping Harry the few paces to the toilet, well you can't underestimate the mission!

It was a good night and the oncology ward will be very grateful for the funds too!

So, on the subject of military operations and 2 lives, Friday I had organised tickets to take Callum to see The Mousical at The Alhambra in Bradford. My friend's little girl Rosie was in it. It was also an excuse to give Callum his first theatre experience! Granny and grandad wanted to come too, thankfully as they were able to pick Callum up from nursery after lunch, whilst I made my way from LGI to Bradford. Harry does not like being on his own, so I had organised Grandma and Grandad to
come. Jo a volunteer should also have visited, but alas she had come down with a cold, so I had already asked Janie to visit later in the afternoon, but fortunately she could visit a little earlier! So with the knowledge Harry was having lots of entertainment, I could concentrate on having a lovely couple of hours with Callum. He seemed a little dum struck by the experience at times and found the hinged chair hilarious, when he realised it sprang up, when he stood up! However, he was still and it seemed to be a hit! Rosie was fantastic a credit to the world of ballet and her mummy and daddy!  So perhaps a pantomime this year will feature in our forthcoming festivities!

So, which day Harry will be home I am not sure, I would think another 24 hours, so they can observe his come down off morphine and immunotherapy, but one can never be sure! Sometimes it depends how urgently the bed is needed!

Though as always Harry has been a great patient, so knowledgeable and in control of his treatment! When the morphine shots were not hitting the spot this evening, he asked me to summon the nurse, he overhead our discussion re his morphine and agreed in between his cries of pain that the overal rate should go up!

I was reading an article on Famikystuff4u a website my friend is working on, about hobbies and experiences we present our children with.  Well cancer was obviously never on our agenda for experiences for Harry, but we have endeavoured to latch into Harry's strengths and enhance the skills we can. Whilst outdoor play has been limited and playing football not an option, we have helped Harry enhance his creative spirit, his mechanical mind, his thirst for knowledge, through crafty things, Lego and often looking things up on the Internet! We have never underestimated, Harry's ability to understand what is wrong with him. He knows he has had cancer and had a large lump removed. We feel it has been important that he is a key player with his team of professionals working with him. We explain things in a way Harry can understand and by involving him in as much as possible, means he has some control in a situation where at times there seems to be none! I would never want Harry to just think he has been poorly as, poorly means many things. The amount of hospital visits that Harry has had does not accompany just being poorly! Not many children thankfully get cancer or other diseases warranting such intensive treatment, so for us it has been right to  inform Harry of what his treatment plan is. I also think its right that our McMillan nurse gave an assembly to the school and talked of Harry's cancer in simple terms for the children to understand. Harry has missed school this week, he will probably not get there much next week either, whilst his body recovers. I wouldn't want the other children to think being 'poorly' means you could end up having lots of time in hospital. Everyone is different in what they want their children to understand, but cancer is in no way just being 'poorly'. I guess once this is all over and Harry will just be poorly with a temperature on occasions, he needs to be able to make a distinction between what is 'poorly' and warrants a day off school and what is more serious!

1 comment:

  1. My iPhone is messing around again! So will finish and edit this tomorrow! Thought I'd lost half if it, so pressed publish, thankfully not lost, but not finished and it won't let me! : (