Saturday 20 th July

Harry awoke in a fab mood thurs 11 th July. Since there were lots of bugs at school going round, we decided to skip school and head for The Yorkshire Wildlife Park, near Doncaster. The sun shone and within us too! It was a fabulous day! Really recommend a visit there. The enclosures are big and for the first time the boys saw zebras, camels, baboons, lions, tigers, zebras plus other animals! They were very excited. There are 3 enclosures whereby you can walk through them and get really close to the animals. There was one with little monkeys and another with wallabies. The boys adored the wallabies being able to hand feed them, stroke them and even hug them! Both boys love animals! They keep asking for a pet and I keep putting it off, but we will probably get guinea pigs for Harry for his birthday in September. I am actually beginning to think he may make 12 th sept and be well enough to celebrate and at home. Last year he was in hospital attached to about 5 machines!
So Thursday and then Friday were good days, so we made plans for Saturday, that is where it went wrong! Harry awoke feeling poorly, he was sick, then went back to bed for a while. That didn't make him better! He continued to vomit several times. In the afternoon when he was immediately vomiting following a drink of water, I knew we would end up in hospital soon with him being dehydrated. I spoke to the on call McMillan nurse and asked if Harry could have an IV anti sickness drug administered at home as this worked well the week before, when at Martin House. Thankfully, by 3 pm Harry had his port accessed and the drug administered and no hospital was necessary. The McMillan nurse thought it was still side effects of the radiotherapy causing Harry's sickness. Thankfully the drug worked. harry then slept till 6.30pm, awaking for a couple of hours then going back to bed for the night. I know how poorly he got last September after radiotherapy so I am keen to get services in to prevent Harry getting in quite the state he was then. I really didn't know how to manage Harry last year and neither were services on offer at home in the way they are now. We had weekly overnight stays at LGI to try and manage his sickness, these failed and he lost an immense amount of weight and then ended up in hospital for 3 weeks. Now Harry is palliative we can get nurses quickly to our home and like on Saturday can administer IV anti sickness drugs. This is great and avoided Harry needing to be hospitalised, but why we couldn't get that service whilst Harry was on treatment last year, we had very minimal nursing support at home. I do feel that we were let down. The lack of support led us to feeling very scared and worried when managing Harry at home, when he was so sick.
On Saturday, we had made plans to visit Paul's parents and have a BBQ. Paul took Callum over, as he was so excited about going and seeing his little friend Olivia! Grandad had the paddling pool out and a new water slide and Callum had a great time. This enabled Harry to have a quiet time and recuperate, so come Sunday he was in great shape! We too headed to Paul's parents and had a lovely day, fun in the sun!
Harry had the needle left in his port over the weekend in case more anti sickness meds were needed, thankfully they weren't, so a community nurse came Monday afternoon to take the needle out. Whilst she was there I had a discussion about reducing Harry's level of fentanyl patch, since the radiotherapy has reduced his pain considerable. The nurse said if Harry seemed over lethargic then that meant the patch was too much. When she visited Harry was full of beans, so no signs if tiredness! However, having changed Harry's patch Monday eve, to a brand new one, we had another bad day Tuesday. Harry awoke at 8 am, but was so sleepy, eyes closing whilst having breakfast. He refused to go back to bed and in between his eyes closing, he was in such a foul, agitated mood. I finally got him to sleep again at 11 am and he slept till 4pm. He missed school and meals. Having had 2 such good days then this bad day, it made me think about the past week and I realised that their was a correlation to Harry's bad days and these followed the change over day if his fentanyl patch. The day after a new one was administered he was very tired, but the dose must even itself out after 24 hours, giving Harry 2 good days out of the 3 the patch is in on for.
I consulted with our McMillan nurse about reducing the fentanyl patch. Following discussions with the doctor at Martin House, we got the go ahead to reduce Harry's fentanyl patch when we changed it again. As predicted Harry had a good day on Wednesday and went to school for the afternoon. Then Thursday, I changed the patch at lunchtime, so the effects of the new patch could commence early eve and not interfere with Friday. We reduced the dose slightly as discussed. Come Thursday afternoon Harry was getting agitated with his friends whom we met in the park and I knew this was the effects of the patch kicking in, he fell asleep in his tea, but at least awoke Friday in a good mood, alert and able to enjoy the day. He had a great day!
So here we are on Saturday. Harry has a party at Wacky warehouse and later we have friends staying the night. The weather is gonna be a bit cooler but still no rain so a BBQ is planned for tea.
We do so hope we can stop at least for now these up and down days. It would be so immensely tremendous if we can have at least a few good weeks and we get to go on holiday.
The past 6 weeks has been very hard. We know the cancer cells zapped in Harry's leg will grow again and we don't know what pain the cells in his spine are causing, thus the fentanyl patch has only been marginally reduced, but we all deserve a little respite and some fun again!