Annie has finally had a lumbar puncture today after weeks of illness and delays. Her cough has cleared up, although still not gone altogether and her nose has finally stopped running. Her blood counts were good and Dr Skinner was pleased with how she was doing. Rob is still trying to catch up with his work so Annie and I got to enjoy Aunty I’s company for the day as she came with us. Annie did well considering Rob wasn’t there and he tends to be the one she wants on hospital days.
Following our disappointment that Annie couldn’t have treatment last week as she wasn’t well enough she ended up coughing herself sick on Saturday night and although a bit of a trauma at the time, it seemed to get rid of a lot of what has been causing the problem.
Since then we’ve been enjoying fun times in the sunshine in the paddling pool, picnic by the river at Crossrigg prior to the open gardens last week fishing in Morland beck and just generally playing about outside. It’s done both Annie and myself a lot of good just to be out in the sun. Poor Rob was slaving away trying to get the enormous greenhouse at Crossrigg painted before the open gardens. Not fun with such high temperatures.
Annie getting in the Jubilee spirit, we’ve been making paper chains and got our bunting up! Looking forward to watching Rob, Mike, Ian, Lisa and Jim doing battle in the tug-o-war at Orton village sports at the weekend!
We came home on Saturday having finished the course of antibiotics given intravenously and with antibiotic medicine to give at home. We don’t know what was the matter as the swab they took from Annie when we took her in on Wed was lost and no repeat swab was taken. Her temperature is okay now but she’s still coughing a lot and her nose is streaming. Annie is well enough to play about though and we’ve been outside planting things and playing on her trike in the sunshine.
This morning we met up with Anna and Annie Miller for a play in the beck at Morland, fishing for tiddlers, feeding ducks and throwing stones in the water. It was lovely. And very handy for Mill Yard cafe for a drink and a snack afterwards. (I should be charging them for advertising!!)
It’s difficult to know if we should keep Annie away from other kids and the multitude of potential bugs Annie can’t fight off or what to do. I can’t bear to have her going day after day without playing with any other children, especially after she’s just been in isolation in hospital in case she was carrying anything contagious.
Congratulations to my school friends Ann and Joanne on completing the Starwalk in Kendal at the weekend to raise money for Cancer Care. x
Just in case you were wondering – we do sometimes dress Annie in other outfits! On the photo with the net, bucket and spade, Annie had just bought all three from the shop in Robin Hoods Bay and is on her way back to our cottage shouting “I love pink”!
Annie and I checked in for a few days holiday at Royal Victoria Infirmary, Newcastle last night. This ongoing cold has got worse its a flu virus that she just can’t fight off. She hadn’t been well since we came home on Monday and yesterday morning she had a high temperature so we had to come in. She’s sleeping at the moment, tired out from a night of regular checks which means a bit of poking and prodding to do temperature and blood pressure etc which disturbed her sleep. The moment I type that the nurses have come in and woken her up to get blood transfusion started!!!
To be continued in very small bits!
9.30 p.m.Thanks for the comments so far top bloggers!
Although Annie is more subdued than usual she’s not too bad tonight. Just settled off despite very chatty mums putting the world to rights at full blast out in the corridor! Annie has had a platelet transfusion last night and blood this morning. She’s on 9 doses of antibiotics to fight whatever it is that’s causing the high temperature. They don’t know what’s causing it but it’s a routine thing to give the anti-b’s as a precautionary measure while they wait for results from swabs to come back. Unfortunately, the anti-b’s wont help the flu which is part of the reason she’s needing transfusions. All frustrating but just hoping we’ll see an improvement.
Mam has been this afternoon. Came over on the train from Carlisle which is a bit less stressful than driving over. It meant I got to escape for some air for a bit. Poor Annie is confined to the room in case her illness is contagious.
Last Thursdays hospital trip was a bit traumatic. Annie had her lumbar puncture but also needed blood and platelet transfusions. The day unit was closing before her blood transfusion had finished so they sent us down to another ward. While we were there we got in a muddle rushing Annie onto the toilet in a moment of desperation and the wire that connects into her chest got pulled part of the way out. There was blood trickling down her body and on her clothes. She was really frightened. The nurses on that ward didn’t have any experience of dealing with ports (where the tube goes into Annie’s chest) and made a real hash of trying to stab the needle back in and flush fluid through it. Annie was, not surprisingly, hysterical. We were shipped back up to our ward and they sorted her out and sent us on our way. This was all as we were continuing on to Robin Hood’s Bay for a lovely weekend!! We left hospital at about 7.30p.m. (12 hours after leaving home) and arrived at the Bay a couple of hours later. Absolutely exhausted and traumatized.
Despite all the trauma we had a lovely few days by the sea. Went to Scarborough Sea Life which was great, climbed about at Whitby Abbey, went fishing for crabs, hunting for shells and ate fish and chips and ice creams galore (the Magpie cafe in Whitby is quite rightly famous for their fish n chips). Rob’s Mam and Dad came over and stayed in a hotel up on the hill for a couple of nights so Annie got even more spoilt and so did her parents! The fresh air and change of scene did us all good.
As we have to stay in til Annie has had her 9 doses of antibiotics it will be Saturday afternoon at the earliest before they send us home. Just hoping she’ll have perked up a bit more by then.
Had a lovely lunch with the Kirklands and Aunty I today. An unexpected surprise and a good time was had by all. Annie laughed lots and really enjoyed being with the boys.
After a hit-and-miss few days we are all feeling better today for Annie sleeping right through in her own bed. Hopefully this is a sign that she’s starting to feel better.
Thursday was as expected and Annie couldn’t have the lumbar puncture again due to this cough and cold and swabs taken on last Monday’s unexpected trip to N’castle grew a bacteria so she has been put on antibiotics. So we are now a fortnight behind with her treatment and she will have to have Lumbar Puncture as we as a dose of Vincristine (chemo) and a couple of days of steroids this Thursday. She’s just getting good on her legs again and the Vincristine has a bad effect on her walking, so it feels a bit as though as soon as she’s improving we’re back to square one. It has to be done though so we just have to get on with it.
Before Annie’s diagnosis we had booked a long weekend in a cottage in Robin Hoods Bay for next weekend. There is a motorbike event on nearby that Rob wants to go to and last time we went over there we all had the best time. It’s lovely. We’re hoping that Annie will be okay. The consultant knows about it, so we’ll discuss with him on Thursday and then continue to the Bay after clinic if he thinks she’s up to it. We could certainly all do with a change of scene but not if she’s going to feel rubbish.
Afternoons/evenings tend to be her best time at the moment. She really enjoyed the duck race down at Morland yesterday. Throwing stones in the beck is always a favourite thing to do! Rob enjoyed the Morland Beer Festival that followed even more! We’re off for more duck racing this afternoon at Culgaith with Anna and Jim. We’ll have to see if we can make it back past the beer festival on the way home without losing Rob!