11th June - veno occlusive disease!

Veno Occlusive Disease is what Harry has. it is blocked veins that go into his liver. This is caused by his high dose chemo. It happens in about 20% of cases. it should be rectify able, and hopefully we will se some improvement by the end of the week, fingers crossed. It has caused Harry's liver to enlarge. He has been incredible restless the last 3 nights. He has been vomiting lots too. This Veno problem is also a reason why his platelet count has remained so low and he is on his 7 th day of consecutive platelet transfusions. He was intolerable pain much of last night, thankfully the charge nurse was on this morning and around 10 am I said enough is enough, he Is in too much pain, luckily Julie had got hold of the doctor to review Harry and fairly sharp ish Morphine was administered, which had a quick calming effect on him. If I could I would have had some too. I can't imagine how Harry felt, but was just beside himself and I was at the point where I could not watch anymore. However, he as been settled for the rest of the day and is asleep now. He rarely sleeps in the day, his eyes close briefly, but he won't give in. I wish he would as he just wants to hold my hand all the time and doesn't like me going out of the room for anything. luckily Janey our volunteer play worker visited today and enabled me to pop to the shop and get some fresh air. Paul was at home looking after Callum today. Today, I have gone back to the thoughts I had back in November about chemotherapy as the side effects are awful for Harry to endure and also horrific to watch helplessly as a bystander. We saw Harry's consultant today and the specific chemo Harry has had recently has been trialled as the best in creating better survival rates and ths recent Veno problem is just something that can happen, but still better for the child to endure if we want more chance of him seeing a much older age. So here we are. However, more drugs, an additional machine, thus means more beeps. A few days ago, Harry was coming off IV fluids and food and taking some food down his NG tube. We were encouraging him to drink. However, things couldn't be further away than a few days ago and the state of play is to discourage Harry from drinking anything other than a sip, so as not to overload his liver. His NG feed has been stopped too. Harry is very thirsty and it is incredibly difficult to explain to Harry that he can't drink much. I have had to explain that drinking too much, will make his liver more poorly, thus creating a longer stay in hospital and that we want him out ASAP so we an have a holiday. We have the candlelighters caravan for a week in July, but if we can't go we are going to have to go somewhere as soon as is logistically possible!