We had a rubbish final few days of Annie’s intensification. She woke up in the early hours of Thursday complaining that her chest hurt where her line was in (she had it in at home so that it was ready for the days when the community nurse had to give her chemo through it). By morning she said that it didn’t hurt any more and as she is very anxious about her wiggly anyway we waited until the nurse came to investigate further. When Helen came, although there was no visible problem she couldn’t get anything in through it or any blood out through it and Annie was quite clearly in pain when she tried to do anything. Off we went to Newcastle with Mam. We had a trauma there as the nurse who dealt with us insisted on trying to force saline solution in through it despite Annie’s screams and the liquid went into her chest tissue and was swelling it up. This was after they had already had the information from the community nurse as to what the problem was, and seemed unnecessary to put Annie through another nightmare with her wiggly. The needle of the line had come out of the portacath and was floating about digging into Annie’s chest. The problem was easily resolved by removing it and putting a new one in and I wish they had just done that in the first place.
By the time we arrived back home that night Annie’s temperature had shot up and after an hour of monitoring her Rob was on his way to RVI. It was after midnight by the time he arrived and Annie had to stay in for three nights for antibiotics, a blood transfusion and platelet transfusion. Rob stayed the first night with her and I stayed for the next two. Annie should have been discharged by early afternoon but the platelets that were requested first thing in the morning didn’t arrive until 4p.m. so we had a frustrating day of waiting around.
We’ve been left feeling quite frustrated by recent experiences at hospital as things just seem to go wrong all the time. The whole time Annie was in to have her line replaced she never got checked over or so much as her temperature taken even though I had told them it was higher than usual and we really felt they couldn’t wait to get rid of us as it was coming up to time for the day unit to close. During our stay on several occasions I had to ask for doses of Annie’s medicines as afternoon doses still hadn’t been given to us by tea time or some medicines weren’t brought at all. The huge delay in the platelets arriving wasn’t chased up until I spoke to staff a couple of hours after the time they said she would have had them by. Having to literally get back into the car and drive back to Newcastle as soon as we get home is just horrendous and we feel like some of the staff don’t appreciate the distance that we have to travel.
Complaining seems very ungrateful as generally the level of care really is excellent and the staff are great. I think that this few weeks of treatment has really knocked all of us and we are well and truly exhausted and so anything going wrong seems like a disaster!
So…to be more positive….
That’s the intensification bit over with!!! Three cheers!!
A week off anything nasty now and then on to maintenance which will be Annie’s treatment pattern until week 112. The end.
Some photos taken but never uploaded from weekend before last in Nan and Grandad’s garden and big bales at home.
Dish of the day -frogs legs
Hay time with Grandad Artie
Big bales at Old Mill Flatt
One more week to go of this intensification. Huge sigh of relief that the end of this bit is almost here. Bigger sigh of relief to come in a fortnight once we know what treatment plan we’ll then go on to.
We had another two nights in hospital last week. Rob and I took Annie to Newcastle on Tues for the first of her new chemo treatment that she was to have for four days in a row last week and four days in a row this week. She also had a lumbar puncture with chemo and another new kind of chemo that went in through her line over 1/2 hour. All seemed to have gone smoothly and we got home from Newcastle in fairly decent time. More or less as soon as we got in the door Annie’s temperature shot up and she started shivering and went drowsy. After a call to Newcastle we found ourselves heading right back there, all after 20 minutes of getting out of the car! We had to stay in overnight for them to monitor her and again the following night for them to check that she wasn’t going to have a reaction again following that day’s dose. She has been ok with subsequent doses. The community nurse came out from Carlisle to give her chemo on Thurs and Fri.
Annie has generally been well over the weekend. We had a lovely play over at Orton on Saturday. We spent well over an hour enjoying playing tea parties in Nan’s garden by the beck and were lying around on the lawn and having a great time until we discovered there are hundreds of baby frogs all over the lawn! Not my favourite thing and hard to relax on the grass with them appearing everywhere! We’ve been back over to Orton for a couple of hours today for a play with the cousins which Annie has really enjoyed and is sitting outside fast asleep in the car at the moment. Tebay swings were a big hit with all the kids. Especially good for playing pirates.
Back at Newcastle tomorrow and then community nurse coming here for the following three days. Fingers crossed for an easier week.
I just received an e-mail with this Jubilee Day photo taken at Orton church as part of a project by Steve Crook, photographer living in Orton. Steve is publishing a book of 50 photos taken of people who were in Orton that weekend and will be using this photo as one of them.
We ended up back in hospital again for three nights last Saturday. Annie’s temperature shot up and because she can’t fight off any illnesses at the moment she had to stay in to have nine doses of antibiotics given through her line. As she was so neutropenic they could not continue with the four doses of chemo due to start this week and it has been put back to start next Tuesday. Annie’s haemoglobin count was low when we were due to leave hospital on Tuesday morning and we ended up hanging about waiting for a blood transfusion and although we had been ready to leave as soon as we got up it was 5.30p.m. before we set off home.
All of this following on from the weeks of sleepless nights with side effects of steroids has left all of us exhausted. Annie is now sleeping much better through the night but is not going to bed until 10p.m. -ish and so Rob and I have no “time off” from her demands! She is much more perky and enjoying playing with her toys. She seems to want to be inside playing quietly more than rampaging about outside but I think that’s because she is tired and has a lot of sleep to catch up on.
Annie has lost almost all of her hair now. She just has the softest blonde hairs left, it’s like baby hair again. We’ll need to be extra cautious about protecting her head when we are outside now. Seeing the other kids at hospital it’s amazing how quickly it comes back. There are so many children who we met when Annie was first admitted to hospital in March that had no hair then and now look completely different with hair!
We’re getting a good way through this intensification period. Fingers crossed she will be well enough to continue next week and we can just get it behind us.