Padrig went to school today for the morning and then came home a lunch which was fairly shocking in terms of volume. My vision of having to hire our own Asda delivery truck when (DV) they are all in their teens seemed to have materialised early with P. He hoovered up a heap of food and then, when on the way to Velidre hospital, realised with dread that he'd left his 'emergency twix' behind ('in case you got talking' - this was having already asked 'what's for tea'). Moli's still awaiting 'lift-off' into secondary school, so she was on hand with the camera during mask-making.The radiology Dr was very impressed with his having been to school so soon after sugery. He didnt think the second opinion of the histology would do much to change the treatment.
So, Pads is lined up for 'very agressive treatment': 33 'fractions' of radiotherapy, starting 1st October. This will take place daily on weekdays - mostly after school. He'll also get a regular injection of vincristine. After that he'll move onto a number of cycles of chemo with three drugs, vincristine, cisplatin, and lomustine. This will continue until next summer and will knock him very hard. It's fairly standard that this is going to make him feel very tired with feelings of sickness, sore throat and skin, loss of appetite and hence weight, loss of sensation in peripheral nerves. It feels a bit like leading the child, the child you would normally feel content to lay down your life for, to the brink of a dark tunnel, only to meet them out the other side a much diminished person. But, although he's been dependent on us as parents for 10 years, we cant enter the tunnel for him, 'with' him will have to do. We have been prepared for some daunting long term effects: these are to do with the fact that quite a lot in his body that's merrily growing now is going to get knocked flat. So, this means his growth. He will lose a couple of inches. Thankfully that's not too bad as we're pretty tall anyway. He's likely to always have thinned out hair at the back. The one that really gave pause for thought was the likely permanent loss of IQ - to the extent that we could not expect him to make university. Getting GCSE's will be a massive achievement and then he will enter some kind of vocational training. P is pretty bright, far from genius, but in the upper 10-20% of the class currently. As parents we have to consider exactly what it is we want for the children, not as if we have a huge amount of control over it anyway. One fall, one bump on the head can render the cleverest into a persistent vegetative
state. Pads can still be valiant, industrious, committed, skilled, a pillar, a star! - just not especially bright. It is and will be a privilege just to share the planet for as long as God grants with him for this, his 2nd life.Meanwhile, here he is, with Asher, just after gaining Cub Scouting's highest, the Silver award.
Tomorrow he's off for MRI scan which will involve another needle - this time for dye to give better contrast on the scan. Then he should be ok for school again but back to Velindre for the second part of making the mask.
