Well I had a really good discussion with the McMillan nurse yesterday. 2 hours actually. Julie is so warm and lovely and does not make you feel silly about any of your thoughts and feelings either! Paul managed to join us for half an hour to get the results of the bone marrow test.
Well he has still got cancerous cells in his bone marrow, but at a reduced amount. That is ok apparently and on course for the bone marrow to be clear when tested in another 40 days. So we will positive about that. Certainly Harry's presentation illustrates quality of life and we are trying to make the most of this in between hospital visits.
The dreadful wind and rain abated yesterday enough for Harry and his friends to get their bikes out and cycle around the tarn near the airport. It's not far, but Harry was playing at races with Adam and Georgia and it was delightful to see him having so much fun.
In fact Friday was a success, he managed nursery in the am for 2 hours and with granny's help has caught up on a lot of work sheets he has missed over recent weeks. The trip in and out went unnoticed by Callum, so granny may be awarded spy status for being covert and sutble!
I did feel a bit mean for leaving Callum in nursery, but he does enjoy it and with Harry having lunch at granny and grandad's and Paul at work I actually got a couple of hours to myself and instead of racing around doing washing etc I had a cup of tea and started to read a book! Not read a book in a very long time! It was actually one I have just purchased when trying to seek out books on childhood cancer. I ordered this one not even knowing that the boy in question had neuroblastoma, he was diagnosed aged 4 very similar to Harry, but it had spread to his skull and diagnosis was in 1998. His name was rocky redman and in fact was treated at LGI same as Harry and by some of the same nurses - mark and Neil are 2 I have so far recognised as still being here and jolly, who is a big part of ward 76, but not a nurse.
Anyhow, unfortunately despite a big fight Rocky died aged 7. Currently there has been an accepted trial since Rocky's treatment and Harry will get additional drugs after his period of isolation to fight the cancerous cells remaining good and proper! We hope and pray for that!
So, why read the book? Well it is a journey that has been set out in a very well written way by Stephen Redman, the book is called 'at least it is not raining' and I can identify with a lot of it, well half way through! However, where I am at, at the moment, I can only describe as similar to a mum with a new born baby, seeking a network of support and advice on coping and of others experiences. No babies are the same as are no neuroblastoma cases, but it is about for me, seeking those that understand what you are going through.
Rambling now, but it feels at times a bit like talking to someone with no
Children about your 2 year olds tantrums. They will look at you, make some noises, but not have a clue what you are on about! I am exaggerating a bit as we have some lovely friends trying to support us, but only those that have been through this can identify how being in and out of hospital feels. Living out of a suitcase and on a camp bed. The mind blowing logistics of enabling Paul to attend work, have Callum looked after, me in hospital with Harry, then some switching over to enable me to come home to take Callum to a birthday party as I want quality time with him too!
In fact Callum was a joy to look after this ami am told by jenny. I am glad. I do give callum some bad press at times, but when he wants to be, he can be the loveliest, smiley, cheeky and most polite boy imaginable. He just usually saves this for others!
I had to smile last night though as the whole getting him into bed seems to be becoming a battle of wills! He was supposed to be following me into his bedroom for one last very final story. I heard him say I'm going downstairs. I sat in his room and I could see him hovering on the top step deliberating about whether to follow through. I said, 'what are you doing Callum' he replied, 'I'm being naughty!' with the biggest grin on his face! he knows how to press all the wrong buttons! But it made me want to laugh, but had to suppress it as it would have sent all the wrong signals!
So, to end an epic blog Harry has had a good week. He had a fab day wednesday too when he spent all day playing very well with 'big' Adam from Scotland. They were very content playing Lego. Bodes well for the future. I remember having some great times with family friends. In particular, Alex and Nicky and from another family Rebecca, Vicky and Jenny. Us children got on famously allowing our parents time to chat and have fun too. I can just begin to see those times ahead!
Also to end with - some great actual evidence that chemo is working and reducing the cancerous cells in his body.