Tuesday, 10 January 2012

Tuesday 10.1.12

Well Harry was not sick last night, which was great and seemed zonked to the world all night. The long day and cocktail of chemo drugs and platelets must have really made him tired!
He has been to nursery again today for a couple of hours with granny and the covert operation continues of getting Harry and Granny into Escroft without Callum knowing. I do feel a bit mean, as Callum this morning really wanted Harry to join him at nursery! I am hoping that maybe we can aim for Harry going by himself just for the morning on Fri, then I'll brink both boys home, but we will see.
I am very proud though that Harry is going to nursery again. I am very keen to promote him joining in with activities with other children his own age, as he does spend a lot of time in adult company in hospital and I want to ensure his social skills remain for school.
I feel that I have had a wobble really and hospital does not help as you have far too much time to think, dwell etc, it is not healthy as my usual life means that you don't have time to 'fart!' let alone ponder on life too much!!!!! This can be good, but I also feel the rat race is not ideal either and I was aware that I was in this rat race. Although working is important to me.
I felt near the end of each of my maternity leaves that with too much time, one can start to obsess about the unimportant! Therefore working gives a focus about something entirely different and makes me feel like I am contributing to society. Therefore, as I am currently on sick leave, and with having this time in hospital with Harry where time passes at a different rate, I have time to indulge on thoughts that would usually be suppressed due to not having the time to do so!!!! If you get my meaning. Perhaps all a bit deep!
Whilst in hospital with Harry though, we do, do all sorts as said previously and from making lego models, to making puppets, to doing some writing and learning Harry is fulfilled. He is getting very familiar with some of the nurses and I can get a gauge of who is better than others and there seems to be this 'A' team, whom were on, on Monday, an excellant 'watch' whom provide fabulous care and talk to you if needed about Neuroblastoma. I guess the 2 nurses on Monday have been there years and so have gained a lot of knowledge.
There have been some developments in the last decade with treating Neuroblastoma, the GCSF injection has been added in recent years and this has had a big part to play in keeping Harry healthy and infection free during this chemo treatment, as I think it boosts his white blood cells that enable him to fight infection. However, I am not a scientist but more a sociologist, so I do not have the mind to take the information in, accept that they enable Harry to keep out of hospital inbetween chemo treatments.
However, there has not been the developments with fighting Neuroblastoma as there have been with other cancers. I am not sure if this is because Neuroblastoma is more rare or because it is a hard one to treat. I know the Neuroblastoma Society is trying to do research and further developments on treatment.
Sometimes reading is good, but sometimes it heightens your fears for the future for Harry. Being realistic too is good, but I don't want it to nudge my positivity.
I think also we are a month away from being near the end of Harry's retests and this will be a nail biting time. I do not want to ponder too much on that point and therefore will try and administer Harry's GCSF injection between me and Paul. We are having training, so we have the ability to take off for the day. The injection comes 7 out of every 10 days during this chemo treatment, but will be used for 10 days prior to his stem cell collection and again during radiotherapy and so, we realise this is going to go on. Therefore we don't want to be tied to waiting for nurses to do these injections, but try and make the most of good weather days, like we always have.

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