Monday, 8 October 2012

October 8 th 2012 Immunotherapy day 1.

Can't believe it's been 2 weeks since my last blog! Seems only yesterday that Harry was last in hospital. We were on the luxurious teenage ward. Now on our usual ward and in isolation again due to Harry's snotty nose! Apparrently the teenage cancer trust which is a national charity helped fund the teenage unit when being designed and refurbished. Whereas the under 13's don't have access to this funding, they have candlelighters, but as they are a regional charity, their funds just are not in the same league! You also realise just how much the NHS is subsidised! Which is why gift aid is so important! Why shouldn't the government forfit this money when it is lightening their overall spend at the end of the day? Where would the government be without charitable services! I do have to remind myself though that although the teenage ward is at the top if the league, ward 31 is still way above the standard of 41! Though the teenage ward has only 8 beds, ward 31, which is under 13s has 16 beds and ward 41 about 40 beds!

So back onto Harry! Being isolated is  prob not a bad thing due to the level of pain Harry has been in the last 3 hours. He thought his head was going to explode! A side effect of this immunotherapy treatment. He started the immunotherapy around 3 pm and at the same time started on a morphine infusion. Pain anywhere in the body is expected. Harry's pain started around 6pm and got steadily worse. His morphine infusion level was increased around 8.30 pm and Harry has finally fallen asleep, it's 10pm. As he is on morphine his blood pressure has to be regularly checked as does his temperature, so he'll be disturbed on the hour for his observations. I think it's going to be a long night! He has this immunotherapy, which is infused through his port over 8 hours, each day for 5 days. So we hope to be home for Saturday. He has 6 sessions of this course of treatment. This  means every 4 th week till march Harry will have this immunotherapy. We chose to put harry in for this treatment as part of a trial. Research shows that it has added value to aid ultimate survival! We know we are doing the right thing putting harry through this trial, to aid him having a longer, brighter, future, but at the same time it is very hard knowing that Harry was on top form only hours earlier, charging down the corridors of ward 31 pretending to be a racing car, to screaming out in pain! It's heart wrenching! we have been dreading this week. Though trying not to think about it too much, in fact what we have concentrated on is creating normality, getting Harry to school and good times!

In fact Harry has been amazing form these last 2 weeks. He's had a snotty nose and when Harry gets a a cold, being immune suppressed it's hard to shift. But this hasn't stopped him! Last Sunday, he had his long awaited pirate party! I felt the pressure to give him the best time! In fact organising the ball was easier!!

Harry wore his red and white striped shorts, red t shirt with captain Harry on it, a thick black belt with a gold buckle, a pirate hat and he had his parrot for company, that we made out of a urine bottle when he was going through radiotherapy! Harry was as giddy as a kipper prior to his party! We had arts and crafts to start with. Little wooden treasure chests to decorate, little wooden pirate magnets to colour in and pirate hats! Then, there was food and birthday cake. Becky Lister made a fab pirate ship cake! After food, the children played pass the parcel, which I left Marie in charge of, whilst Paul and I reset up the assault course. Though I believe I had the easy job, as pass the parcel proved a little
controversial and Marie put her peace keeping skills to excellent use, meaning all the children finished the game smiling and sucking the lollies they won! So came the assault course, I always under estimate the planning for children's parties and the time management needed, as well as the excellent control needed to ensure the smooth running of such events! Luckily, Harry has a voice loud enough to get everyone's attention and he managed to get all the kids to line up behind him and watch him give the demonstration as to how to successfully complete the course! Having got all the children safely through this, there was one final element, the piniata! A paper mâché donkey with 24 ribbons attached to a door that opens. The donkey gets stuffed with sweets (i also added glow sticks - thank you wilkinsons for being cheap and cheerful!) only one ribbon can open the door and let's the treasures tumble to the ground. That's the theory, but the glow sticks prevented everything tumbling to the ground, thus a quick intervention by mum and then I could shake the treasure over an eager awaiting audience ready to gather what they can into their party bags! Phew! Party over, job done for another year. But most of all Happy Harry! He loved every minute and was on amazing form! I thought the excitement would have meant Harry woyld have slept soundly on tbe Sunday night, however this was not the case. He woke 5 times! Was in a foul mood on Monday. So the best thing was to take Harry to LGI and get his bloods checked. He needed a platelet transfusion. Having had this he slept soundly on Monday night! Yay!

So this week has been about harry getting to school. We await the school being actually signed off giving Harry his medicines, until the he can't stay all day! I am trying to get this organised ASAP so when Harry is well he can go to school as much as possible. It is his right to do so. He needs to feel like his peers, as all these past months he has not been able to do the things they do and take for granted. So no I don't apologise for being a pushy mother, if I didn't fight for Harry, he wouldn't be here! It's my fight that got him diagnosed in the first place! It's also my fight that has pushed for Harry to be assessed for continuing care funding, which I was told Harry wouldn't score high enough to get it and  that Leeds didn't fund for arguments made out of the support tool criteria. Well my pushing, my believing Harry had significantly complex and unstable needs, as well as some great reports written by some of the professionals involved with Harry has led him to gain 10 hours nursing
intervention on a weekly basis! With this input, I can have proper respite, as we can leave Harry with the nurse and go out and well actually do something. We have another 2 workers providing Harry with a few hours a week too. Having fought for services for months, we finally get a few, it's like waiting for a bus, they all come at once! Though, my priority whilst Harry is well is to get him to school. Though, these services are gratefully accepted as we await to see how his latest treatment affects Harry. We still have a few months of treatment to go!

So the ultimate part of the week was Harry going to Silverstone with daddy, Adam and Adam's daddy, Tom! They watchec touring cars race! Daddy took the weekend off work to give Harry an amazing day before this god awful immunotherapy! Harry has missed out on so many planned activities, that this was a massive thing! The first really grown up activity he has done! He was soooo excited when we woke him up at 6.15 am, he was dancing around the kitchen. he remained in good spirits all day and came home about 7.45 pm still full of it and tales to tell me! I stayed at home with Callum and enjoyed a day with him. We also spent the day with Adam's sister Sophie and her mummy Claire! Callum went swimming with Sophie and each of them loved being in the water! So a successful day all round. In fact seeing Harry so animated and alive just made my heart swell and choked me up! Only a month ago he was having high temperatures and we couldn't see him enjoying another day! Yesterday was a million miles from a month ago. It makes us feel like our old selves
seeing Harry so alive, we can breath easily and enjoy ourselves too. Creating fantastic  memories is what life is all about! Those memories that make you smile for years to come are invaluable! Live, Laugh, Love! Without these life is meaningless!

When Harry is well, we intend to do all 3 to the maximum. Let's get this week out of the way and get back onto the fun train again! We all very much deserve it!

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