Annie May Update

This page is to keep friends and family updated on the progress of Annie May.

Great news

Great news from Annie’s consultant, Dr Skinner when he phoned today once he had bone marrow test results. Annie has had a rapid response to her treatment and at the moment things are looking good for her to be able to stay on the same treatment plan, which is the least aggressive one.
Another long day at Newcastle yesterday. Annie had her vincristine (i.v. chemo), bone marrow test under anaesthetic and she also needed a blood transfusion as her haemoglobin count was low. It was especially difficult for Annie as she was nil by mouth from 7.30 a.m. until she went into theatre at about 2.30p.m. Not fun for a little girl on steroids who just can’t get enough food at the moment. She coped much better than we expected and was fairly quiet despite being DESPERATE for pombear crisps! Thank Goodness for her portable DVD player and Nanny McPhee!
Annie’s hair is still coming out at quite an alarming rate. She’s coping well with it and I think she’s prepared for it all coming out and knows that she’ll be like some of the other children on the ward when we were in hospital. She’s really laughing at the thought that it might be a funny colour (like green) or curly when it grows back!
She’s still eating a huge amount. She had 5 yoghurts for breakfast this morning and continued eating pretty much non-stop throughout the day. It’s as though there is nothing that can satisfy her appetite. Her steroid dosage is reduced after day 28 and her appetite should steadily decrease from then, possibly to the other extreme which is where we were before.
Thank you for your continued messages of support and also for gifts and cards that we are still receiving for Annie. We are really sorry that we can’t reply to everybody at the moment but truly appreciate your kindness.

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Farming crack with grandads

Farming crack with grandads

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Annie’s new hair style.

Annie's new hair style.

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Mrs Maker having a fun time making caterpillars.

Mrs Maker having a fun time making caterpillars.

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Long Day…

We had what felt like a very long day at Newcastle yesterday. Mam came with me and Annie instead of Rob, who was working on the farm. With Rob being her favourite person at the moment, Annie was upset when he wasn’t around. She was generally upset to be back in the hospital as she just knew that she wasn’t going to be having a nice time. She didn’t have any painful procedures or anything but the thing she gets most upset about is plasters being put on and taken off (especially the taken off bit).  Dr Skinner, our consultant, was generally pleased with how she’s doing. She had a platelet transfusion and was a possibility for a blood transfusion as her haemoglobin count was low-ish but second blood test showed it to be not low enough to warrant one.
We collected a new, larger pushchair for Annie from John Lewis so that she can be comfortable when we go out and about as she can’t walk far, and with the weight gain, she’s getting way too heavy to carry. I took Annie for a spin up to Newby in it this morning and we saw a red squirrel running up and down a tree by the road, chattering away. She loved it.
Annie’s hair has started coming out a bit. Not in big clumps, but more kind of thinning. Rob’s Mam’s hairdresser is coming to cut it shorter for us tomorrow. Annie not very happy about it. We’ll have to start stocking up on hats.
We caught up with Annie’s cousins Joe and Charlie and her friend Amy Brown this afternoon. She wasn’t really in a sociable mood, but it was just nice for her to be with other kids.
We’ll hopefully have a nice, quiet day tomorrow before another day back at Newcastle on Thursday. The prospect of the tedious journey there and back is almost worse than the actual treatment. Annie is now much happier with the journey as Mike and Kate Parsley gave her a portable (pink) DVD player at the weekend which she has been glued to ever since – mostly watching Nanny McPhee and laughing like mad at the scene with the synchronised swimming pigs.
Just ordered a dishwasher tonight! It’s coming on Saturday – can’t wait. It will make life a bit easier.

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Annie’s appetite…

Annie’s appetite has well and truly kicked in. After two years of struggling to get her to eat anything it’s quite scary how hungry she is all the time. Weetabix, cheese sandwiches, crackers and crisps seem to be about the only things she’s fancying but she wants something to eat pretty much all the time, including getting up during the night for Weetabix.
Yesterday’s trip to Newcastle went ok. The consultant was pleased that she has been perky at home. Her blood test showed that her platelet count is low and she’ll need a transfusion when we go back on Monday.
I think that everything is starting to catch up with me now that we are home and seeing how life is starting to change. I feel quite overwhelmed/exhausted. I’m sure that once I’ve got caught up on some sleep I’ll feel better, Rob is soldiering on and has been out doing bits on the farm and has started fixing up Annie’s wooden playhouse outside. I think it’s getting moved from Nanna and Grandad’s garden next door round to ours tomorrow if Rob can find willing helpers.
The lovely weather helps keep Annie entertained. We can go outside in short bursts and wheel out for walks with the pushchair. One of Annie’s favourite cousins, Sara, is staying next door for the weekend so she’s having fun being fussed over. Gardens at Lowther Castle open tomorrow so we might take pushchair and go see the daffodils.

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That’s more better than being in Hospital!

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We’ve had a lovely time since we came home. Annie keeps saying “it’s nice to be home”. Our Mams and Auntie I have cleaned the house like it’s never been cleaned before and our own beds complete with electric blankets was just the best! Annie slept all night. We had worried that she’d want to be in with us after having one of us snuggling her in her hospital bed for 11 nights, but I think she was glad to be away from our snoring.
Annie’s legs have been stiff and were giving her pain first thing this a.m. probably as a side effect of yesterday’s chemo. She perked up though and we went up to Newby with the pushchair to feed a solitary duck. We all loved just being out and about on a lovely spring day.
After lunch Annie wanted to “go everywhere” in the car, so we went to Orton, of course, to Mam and Dad’s. Fed ducks, went to the swings and played with Nan’s toys as well as non-stop eating while she was there. Her appetite seems to have kicked in after so many days of an occasional bite of food. Nice to see my sister Anna who is in residence there after her recent operation. We haven’t seen her since we found out about the Leukaemia.
Just been packing an overnight bag (just in case) and getting paperwork sorted for our trip back to Newcastle tomorrow. Fingers crossed all will be ok and we won’t be there long. Back again on Monday for next appointment.

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Home. Happy. Shattered.

Back to clinic at Newcastle Friday.
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A good day!

Annie was taken off her drip this morning and perked up instantly as she had the freedom to buzz around the ward on the cars and bikes. She had her lumbar puncture and bone marrow test this afternoon under anaesthetic. Ate and drank afterwards for the first time in days. She’s been tired and whiney this evening, but that’s hardly surprising.
The great news is that initial indications from the bone marrow are that things are heading in the right direction and, all being well, we can go home late tomorrow morning! Back here to clinic on Friday.
Steve Sharkey from Penrith called in and spoke to Rob when he was at clinic with his son today. It’s good to have support from local people who know what we are going through. Especially, of course, my cousin Judith and family in Shap.
We can’t wait to get back home. I’m sure we’ll be paranoid and checking Annie’s temperature every five minutes, but we just have to settle down to living with this.
Looking forward to seeing the new toy cupboards and shelves for Annie that Mat has been putting together at our house this morning. Thanks Mat!

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One week down…

It’s surreal how different life is today to how it was just over a week ago.
Thanks for all the messages and positive feedback regarding the blog idea. It’s quite therapeutic for us. Helps organise our thoughts when we’re feeling frazzled.
Yesterday was quite a tough day. Annie had a temperature, was sick after her medicine and was just really limp, exhausted and not really responding to anything much. She only managed a couple of sips of water all day, no food. The staff here assured us it was all a perfectly normal reaction to her treatment, it was just difficult for us seeing her so floppy for the first time. She has had a good sleep overnight and a platelet transfusion during the night as her platelet count was low. Hopefully this will help perk her up and she’ll be feeling brighter today. She’s still asleep at the moment – I’m doing this while her & Rob sleep. Daddy was her favourite person last night and so he had most of the night uncomfortably sharing her hospital bed. I just wouldn’t do!
Aunty Kim brought a delivery of loads of gorgeous gifts yesterday but Annie just couldn’t be bothered. Hoping we’ll get to have a better look and play with them today.
It was suggested that, all being well, we would be going home the middle of next week. Not sure if that is still the case with her having this temperature. We still have to be taught quite a bit about caring for Annie ourselves at home.
The staff here are really wonderful. They really do care about Annie and about us and patiently answer any questions at any time of day or in the middle of the night. The ward is brilliantly equipped for kids with two playrooms with any toy you can think of, games, craft and painting things and bikes and little cars for the kids to ride up and down the corridors on. There’s a DVD player in every room so we have Peppa Pig pretty much all day long. You really can have too much Peppa Pig. We are surrounded by PP clothes, slippers, games, magazines, DVDs, a balloon…Annie just doesn’t get sick of her! Somebody somewhere is making a lot of money out of a family of pigs with both their eyes on one side of their head!

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