And then I breathed again…


Harry decided that for the last and final cycle he would mix it up a bit and come up with some new side effects of the antibodies, just for himself! It is generally known that the last week of the cycle is easier…but this is simply not true for us!

Two weeks ago today, Harry began to be sick every few hours and had completely stopped eating and drinking too, feeling pretty unwell, on fluids and lots of anti-sickness medicines, together with the pain relief for the antibodies. He had no strength at all and needed a wheelchair to take him to an opthalmology appointment downstairs for his new glasses (another side effect of blurred near vision, hopefully not permanent although could be several weeks or even months). Despite feeling completely dreadful he said to me that morning, “only a few more days to go Mummy!” He melts my heart every single day, and at that point I just couldn’t wait to get him home.

Things didn’t improve at all over the following days, he continued to be sick (mostly bile by this stage) and we took the tough decision to insert an NG tube again, which was so traumatic, I’m not sure I can explain it, nor do I want to, but it took 4 of the best nurses to hold him still and to insert it. Thank God we did persist though as immediately 230ml of liquid faeces was drained from his stomach through the tube. It was no wonder that my poor little poppet had been feeling so sick. He had also lost a frightening 3kg in 10 days.

The days that followed this were pretty horrendous, although Harry felt a lot better. The nurses would aspirate the bile from his stomach every 4 hours to prevent it building up and him feeling sick. Harry had fluids and TPN (nutrition through his Hickman line) as he was becoming increasingly weak and malnourished. Lots of tests, x-rays and MRI’s of his brain and abdomen, followed and during this time I was utterly terrified and so very nearly broken at the thought that Harry had relapsed. This was a very real possibility, and of course the absolute worst situation. The surgeons believed that the most likely reason for the blockage in his gut was something called adhesions, as a result of his resection surgery last year, and this would need operating on fairly urgently if it was the case. As it turned out, we think that Harry’s body had simply had enough and his gut had slowed right down (or stopped), most likely due to the antibodies, although this was a side effect that has not been encountered before. There was no evidence of any actual obstruction in the scans.

And then I breathed again.

It took almost another week before Harry was allowed to eat anything and bless him as he felt better he began to feel really hungry and it was so tough for him to understand. But if he had eaten anything too soon it could have taken him a few steps back from recovering. The moment he was told he could eat sloppy food, Harry was back! It was as if he woke up again, he was excitable, had more energy (although possibly adrenaline rather than real energy) and he was his cheeky, happy self again and has been working his way to getting home as fast as he can! They stopped the TPN today and fingers crossed (after one of his end of treatment scans) we head for home tomorrow!

More tests are planned for next week and then we await the final results, but for now I am so happy that this time tomorrow I will be home with both my two incredibly brave, patient and amazingly strong boys. Can’t wait! xx