Saturday, 23 March 2013

Results! 23.3.13

We are completely devastated by the news Harry's results presented yesterday. There are no words to describe how much our hearts hurt. Basically Harry's MIBG bone scan has shown that Harry has Neuroblastoma cancer hotspots on his spine, hip and thigh. Basically his consultant thinks the cancer never went and there must have been microscopic cells still present, but they never showed up on his last scans last July. These hotspots will account for the recent pain he has had in his legs. His platelet levels are too low to fling him into any more treatment at present, but any more treatment will be of a palliative nature anyhow, there is no treatment that can cure him. Harry basically has a prediction of months to live. The priority is to keep his quality of life going for as long as possible and to create the best memories for us to treasure for the rest of our lives. We won't be telling Harry anything at present and we will try and continue as normally as we can. The hardest thing is keeping it together and putting that needed smile back on our faces for Harry and Callum's sake. The months ahead will be the hardest yet. Well to start with we have booked tickets for the circus on Sunday!
We will be meeting our consultant again in a couple of weeks. Harry's bloods will be monitored closely. If his platelets reach 75, they are currently 48, then we can try some chemotherapy tablets at home, to try and prolong Harry's life. There are other treatments available in London, that involve radioactive therapy, but currently we can't contemplate the thought of travelling up and down the country for treatment that probably won't make a great deal of difference. For now Harry is not at a point to be entered into any more treatment, so we will make the most of him being well and enjoying being a family.
We will link ourselves into Martin House hospice sooner rather than later and take advantage of their support services. We are very mindful of how Callum will be effected by the loss of his brother and so intend linking him into sibling support groups, though i know alot are aimed at age 5 plus, however even to link him in with other children who have lost their siblings may be beneficial. I guess for Callum, when his brother has gained his angel wings, he will be without his hero and so his friendship group will become vital to him! We also want to find out about support groups for grandparents too, as they will be greatly afffected too.
We don't want pity from people, but friendship and support. For our friends to be there and provide fun, hospitality and probably much vino!

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