Well to continue where I left off on Friday, with regards the scan results, having been rudely interrupted by Harry waking up.
Well Harry's details were entered into a computer whilst we waited and we know that the computer 'said no' to having the third drug. Perhaps I think I feel somewhat relieved as the drug was very toxic and could have some severe temporary side effects. The drug was in phase 3 of trials, so has had some testing on children, but I guess the full immediate and long term effects are really still being discovered. It was a case that to get the immunotherapy drug, we had to put him forward, so he'll have this, but not the third drug. I know it would have been hard seeing the side effects and from my previous experiences with treatement tell me we may have questioned if it really may have been appropriate, but then there was the option to pull out at any time if the side effects became too much.
However, since the third drug is not on our agenda, then no point thinking about it too much. However, I do think what if it ends up being the be all end of drugs to increase survival? Well can't ponder too much on it as out of our hands, but its weird as I thought I would just be whatever, but human nature makes you want your child to have whats going to increase their chance of survival. I think when we have come this far and in particular we are seeing our much loved gregarious Harry spring back into action, then we see the child we had and want to preserve. Though as said previously, I know there are limits on the side effects that should be endured from treatment, so I am a realist in that I would never see Harry endure treatement that was causing him long term pain and discomfort, we would stop the treatment in consultation with the experts.
Harry is a little star with his radiotherapy. The first Monday was a dummy run and having completed the 2 MIBG scans the week before, whereby I can sit next to him and his choice now is to listen to 'Take That', the realistion that I could not be in the same room as him, sent him off on a wobble, but to combat this the play worker suggested he held a piece of string, which we unwound till it reached the room that I could be in and I pulled it tight so he knew I was there. This did the trick and we do this each time, except for health and safety I can't take it to the room as pulling it tight down a corridor caused a couple of the workers to nearly break their necks as they tripped on it when having to go back and reposition Harry. Now we stretch the string out to just round the corner of the room and this still satisfies him. The actual radiotherapy only lasts a couple of minutes. A blast on his back and a blast on his front. There are fish stickers on the machine, which moves 180 degrees to his back and through the intercom I can speak to Harry, so we pretend that the fish are playing hide and seek with him. Or the other day he was entertaining himself by seeing if his tongue would stretch to reach the machine that produces the rays! Harry always starts by going into the play room, whilst the staff finish the previous patient and he is making more crafty stuff! He has a wobble in the morning about going, but then loves the playroom, the staff and another 2 boys of similar age there too, that he has to be encouraged to leave! Just prior to Harry there is another little boy who is having 6 weeks of radiotherapy on his spine. He is younger and so needs an anaesthetic to keep still, so he is there much longer each day than us. This boy has relapsed from a different type of cancer, so we are always bumping into people with their own tragic tales! Though the family are brilliant so it seems on the surface. Their boy had high dose chemo like Harry and stem cell rescue 18 months ago, but as a result it is thought one of the high dose chemo drugs has affected his walking and he can't walk now. So a very stark reminder of the potency of these drugs and the possible side effects.
Harry's stamina increases by the day and his appetite does too. His antisickness drugs have been increased to counter the sickness that can be caused by radiotherapy, so far so good though.
Today we visited Grandma and Grandad, with Granny and Grandad and Sarah and Olivia joined us for lunch, so a full house. Olivia is a couple of months younger than Callum. The rain held just about for our visit and so the 3 children had much fun playing outside on the toys Grandad accumulates. Also the boys love seeing the chickens and collecting their eggs too! We enjoy taking them home too, fresh, free range eggs! As the 3 children grow, they are really beginning to interact with each other. I can see chilled out afternoons on the horizon, with a glass of wine, whilst the children play with not too much interaction from the parents. Maybe next year, but good times I feel are ahead!
I guess on the subject of good times. It seems Harry can start school on September 13th, as the drug he will have at that time is in tablet form and given at home. The unknown is how he will react to the concoction of the 2 drugs and what impact this will have on him and his attendance at school. Once he has done the first 4 week cycle then we will have a much better idea as to how he will manage with the remainder of the treatment.
With knowing the start dates of Harry's treatment I can plan a party! The much talked about event for Harry, as we started plannning it whilst he was in isolation!!! It gave a goal!!! People can say there is always next year for birthdays and parties, but my ethos is that they can never be ignored and in our case you can't bank on September 2013 being all rosie and dandy! Relapse being around 55/45 (this figure is from our consultant) you have to make the most of everything!!!!
So the information about Harry being cancer free is slowly sinking in and when people ask about Harry I can say he had cancer! It will be better when he gets some hair! Though I am used to his balled head that you just can't help stroking, like a babies soft hairless head!!!
I can't believe Harry is nearly 5. It feels like we have lost a year in some ways, lost the ability to do normal things as a family and we have been splitt up lots. Though as said previously it has taken Harry to be ill, for his dad to spend so much time with him! This is because of Paul's shifts at work, they greatly impinge on the ability to have family time. On the subject of Paul and work, he has been working 6 pm till 3am all weekend, so we have hardly seen each other to discuss harry's scan results. Paul is in his new job and with that again family time is greatly reduced, via his shifts in particular. He works 2 weekends, then has the 3rd off. But inbetween his shifts are either 10 am till 6pm or 6pm till 3am and each set of shifts is for 7 days. Therefore he is shattered when he gets to his days off! That is the way it is. He is liking his new job though and the variation of daily operations make it very interesting.
Callum has been more clingy this week and reluctant to go to nursery. He knows Harry is in hospital each day and he seems to worry about Harry and i can imagine that he feels unsettled about the fact Harry is going into hospital as his recent experience of Harry being in hospital has meant we are split up. However, each night Harry has been at home, so I am hoping he can see this and next week he will be back to running into nursery with a smile. As when he doesn't although I know he enjoys nursery it always leaves you feeling like a bad mum and you have that little bit of your heart being wrenched as instinct wants to make your little boy happy and not leave them sad! Though, without nursery we could not manage, so it remains a must to continue with and hopefully I will get back to work soon and Harry will be in school and Callum in nursery. He has another 2 years before he starts school! He will be soooo ready to start by September 2014! Already he is so astute, but incredible comical with it! I took him yesterday to the first birthday party he has been invited to from a nursery friend, so Harry wasn't invited. Callum was clingy at first, but got into the magician and shouting out abracadabra, then in the second half it was disco music and party games and Callum was tearing round encouraging 2 others to do so with him as he wore him and them out. It was funy seeing him dance with his nursery friends and I could see him being the ring leader. He wore his party shirt, which he was very proud of. I will get some pics on here ASAP as he actually let dad take a picture of him and smiled!!!!
So, week 1 down of radiotherapy and 2 weeks to go, well 10 days to be precise as it is closed Saturday and Sundays. It is a strange feeling knowing the final leg of treatment is on the horizon. This cancer has taken over our lives and completely consumed us as parents at times, it will always be there in the back of our minds whether it will return, but the light is there for a time when we are not in hospital with Harry every few days and life can begin again!