Thursday, 6 December 2012

Thursday dec 6th

Well Harry had a very busy weekend pre his 3rd immunotherapy treatment plan. I wasn't sure how Harry would cope, since Friday he was very tired, full if tantrums and a day to write off. I gave Harry a very good talking to about not crying at everything and after a great sleep Harry awoke in a fantastic mood thankfully!

We went to Harry's school fair, which had loads going on. The tombola is always a big hit, where both boys won a number of prizes! There was a toy stall on which I had donated a few of the boys toys, unwittingly though Granny and Grandad bought back the fire engine and ambulance. It's the second time I have tried to get rid of them! They are friction ones, which our boys ram across the floor actually creating a noise like thunder and louder than any battery operated toy we have! So we have them back, they were a set of 4, so someone has the other! Most children would just play nicely with them, so the noise will be more limited, but not mine. As soon as we got home, the boys were on their hands and knees ramming these toys along our wooden floor! Aaaaahhh!

So we go on to visit our Sarah, Richard and Olivia in their beautiful new house, which is up the road from Paul's parents house!

Paul's mum has had a cold and cough for the last month, so now clear we visit them too and stay the night. Paul and I manage to get a night out too, with Sarah and Richard and Paul's brother, not happened in a long time and really good to catch up over drinks and not over the noise of the children! In fact the only noise was from some really good tunes from the pub sound system. Great 80s music - love it!

Then on Sunday we move onto the Candlelighters Christmas party. Our first party! Defo more than 100 kids there! The boys loved seeing Fireman Sam and Peppa. Callum was do made up to sit on Peppa's knee, whilst waiting for his present from Santa! With do many kids it was a while!
We also met up with a family who were on the ward when Harry was diagnosed in nov 2011. Alex finished his treatment some time ago, but with Harry fairing very well too now, it was good too see what just over a year brings - kids just having fun!

So with the kids exhausted, bed time could not come soon enough! Then I packed for all of us for the week, well Paul did his own! But as Harry was to be in LGI mon - sat and me with him for the duration we needed clothes , as I wouldn't get the chance to come home, Callum was staying at my parents, so he needed packing up too. I also needed to take food with me, so like going on a weeks holiday almost, without the fun if it to look forward to. Paul has been on the second week of his driving course and since the weather forecast had been dodgy, he's stayed at his parents, which is closer and can share car journeys with a colleague.

So, Harry has had 3 out if his 5 rounds of immunotherapy thus time and fared well. He did have a lot of pain at the beginning of tonight's treatment and had to press the button for extra morphine to be pumped into him to combat the pain, but fingers crossed we will be out if here on schedule for Saturday.

Harry has a cold again, so we are isolated! We were in 3 different beds Monday. First of all in a bay with others, until they decided on balance with Harry's runny nose he should be isolated, so we are moved to bay one, where we have this large room to ourselves. The room manages to get Wi-fi from the teenage ward, so I am rubbing my hands thinking of the space and being able to watch strictly on the iPad! However, a shuffle round of beds, meant we couldn't stay and so needed to move to bed 12, a small side room and no wi fi! However, being smaller, we have got into the festive spirit with my purchases from crafty crocodile online catalogue and hobby craft and have adorned the walks with glittery pictures. Janie brought in some paper chains and made a grand effort which stretches across the room and one which Harry is extremely proud of!

So with Paul on his course all week I have to thank the support of people coming and giving me a break! My parents, Janie, Briony our worker from the sitting service and Jo our ClIC Sargent volunteer. It was also great to meet Becca up for tea and Steph was able to have her lunch hour so we could grab a coffee together!

Without these breaks from caring for Harry in such an environment, where home comforts are few and where Harry hates me leaving him to even make a drink in the kitchen, well I'd go a little mad!

What is helping is our light getting bigger as we near the end of the tunnel! Only 2 more immunotherapy sessions and 3 more cycles of his rhetonoic acid tablets. Then retests! I keep talking about the end of treatment and am very aware that come mid February it doesn't all just stop and normality commence. Harry has to increase his stength and stamina. His body needs to recover from being targeted with so much vicious treatment. His bloods need to recover and manage with less transfusions. All this will take months and so I am trying not to get to the end and think that's it, as if I do then I think the post treatment blues could kick in whereby I get frustrated with not immediately returning to prior diagnosis routines and work.

When I do return to work I need to know I can give a good run at it and Harry's hospital appointments are minimal, as if I can't, with the likelihood of more budget cuts, redundancies will be on the horizon. If I can't physically manage to be at work as required then I will lose my job under capabilities. So it's tough!

However, back to the things I can control and that was seeing Callum today. My parents brought him in. Harry and Callum played do nicely together too. I also took Callum out to the museum in Millenium Sq, there is a exhibition around evolution with quite a few stuffed animals, of which Callum had little interest in and was scared of a couple! He enjoyed McDonals though and then seeing the Christmas lights and decorations in the Merrion Centre and then through the German Market back to LGI. I'll post some pictures from today in a separate blogg!

Having hit the post year mark of being in such close contact with LGI we feel a bit like veterans now! I have met more families of newly diagnosed children, shown them where the cups and coffee is kept and also talked to a family of a little girl, who was diagnosed with Neuroblastoma stage 4, the same as Harry. They were in fact in the bed opposite, when we first arrived on this admission, so for them seeing Harry so far on in treatment and well, gave them a boost of positivity! I also met another mum, whose son has Neuroblastoma and is nearly at the end of the initial 80 days of chemotherapy. She was also pleased to hear that Harry is nearly through his treatment and this gave her hope too. As said in previous blogs there have been a few deaths and relapses recently, which people are aware of and this makes the path a harder one to traverse across at times!

So with Christmas nearly upon us, fun is on the cards for the next 3 weeks out if hospital. Harry's platelets lasted 2 whole weeks before he needed a transfusion! This is massive for us, this ultimately means Harry's blood is beginning to recover, which also = less time in LGI. Whoop, Whoop!

So we pray for discharge on Saturday and minimal contact with LGI until our return on New Years Eve for round 4 of immunotherapy!

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