Thursday was a bit frustrating in that Annie’s haemoglobin count was very low so she needed a blood transfusion but because it was low she couldn’t have her lumbar puncture and chemo which has put us back a week. She’ll have it next Thurs instead and then we’ll need to have the same again the week after that.
She cried all the way back from Newcastle so it was a stressful journey. Our poor friend Rachael was getting a lift over to Newby from Newcastle with us too so she got to share our delightful journey. Annie was still upset after we got home and during the night. Her breathing became very rapid and shallow and was still the same yesterday morning so after a phone call to Newcastle we spent a few hours in A & E at Penrith hospital. Although her breathing was still fast and a bit laboured, by the time the doctor had been in touch with the right person at Newcastle all had settled down and she perked up.
In the afternoon we called to see Aunty I, Karon, Keith, Charlie and Joe and Annie had a good time playing outside with the boys while I caught up on a bit of crack.
Anna has been over to bake cakes with Annie this morning and Annie’s just been making dandelion soup in her den outside and is now up to mischief outside with cousin Sara. Transfusion has definitely perked her up but we wonder if it might have been the blood of quite an angry person!? A few temper tantrums and teenage-style strops over the past couple of days! Still not eating which we’re finding very difficult. Taking medicines has also become quite an ordeal, especially at night-time which is the chemo medicine and so really important she has it.
Dr Skinner phoned last Friday to say that the results from the bone marrow tests in the labs at Glasgow showed that we are ok to continue on Regimen A treatment which is the least aggressive treatment plan there is for A.L.L. It’s a big relief that they don’t have to take it up a level.
After a few days where Annie seemed to go back to being unsettled and upset she really perked up yesterday afternoon and today has been great. Annie’s best friend Annie Miller came to play this morning then we went for lunch at Mill Yard with Annie and my sister Anna, who is her childminder, and then on to a kid’s disco for nursery/playgroup in Morland village hall! She’s flat out asleep on the sofa next to me as I type!! The girls had the best time at the disco and it was hard to believe Annie could only manage a few steps a couple of days ago. She really wanted to run and jump about with the others and did her best. She was on the go the whole time. It really cheered her up after not being up to much playing for a while.
We’re worried about Annie’s eating going from one extreme to the other. Thankfully she tucked into the snacks at the disco because she barely ate yesterday and hadn’t eaten all day today, despite trying to tempt her with food from her favourite café.
Back at Newcastle tomorrow for lumbar puncture so can discuss concerns with Dr Skinner while we are there. We have a feeling we could be looking at a blood transfusion too as her haemoglobin levels were getting towards the minimum level last week. At least she will probably perk up a bit if she does need one.
Annie received a Little Star award though the post today from Cancer Research. It’s awarded to celebrate children who have shown courage after being diagnosed with cancer. Thanks Karon and Ann for nominating her!
Annie has come on really well since last week. The course of steroids ended at the weekend and since then we have seen her coming back to being more like her old self. It’s a huge relief as we were starting to feel like she’d never go back to how she was. She had just become so quiet and never smiled. She’s back to laughing and chattering away, singing and enjoying stories and coming up with all kinds of weird and wonderful ideas. Her weight has started coming down much quicker than we expected. She had gone from just over 14 kilos at the start of all this to 20kg last week. She hardly looked like herself. She has lost more than we were led to believe she would in this first week since steroids finished and she is clearly much more comfortable and moving around more independently. Her appetite is much more normal. Just hoping it doesn’t end up going too far the other way.
Annie is still struggling with walking as the chemo has affected her legs. Fortunately, the terrible leg pains that she was getting are more under control with her medicine.
We bought a wooden dolls house, dolls and some furniture in the Early Learning sale this week. Rob put it together this morning and we’ve had a good day playing with it. We thought it would be a good thing for her to enjoy while she isn’t very mobile. Although it got her away from her DVD player, we ended up playing Nanny McPhee with the doll family. There are plenty of doll children to tell off!
Out on my bike in Orton with cousins Beth and Jack
Annie is in remission!
Still a long and difficult journey ahead but for now we’re enjoying this brilliant news!
We’ve had a really mixed few days and nights. Annie has been awake a lot during the night feeling very clammy and uncomfortable. She’s still been hungry through the nights (as well as still eating all day long) and last night I found myself cooking pasta at 3a.m. She’s also been really demanding and had moments of real screaming tantrums. It’s difficult for us that she is not so easily calmed and reassured. The good news is that she’s now on the second day of being weaned off these steroids. They have turned our little girl into a different person. It’s awful. We’re just hoping she’ll be back to herself soon. Having said that, I think she was more herself today, playing with her animal rescue toys and showing an interest in different books and DVDs (we even had a few hours without watching Nanny McPhee!). She’s been quite calm and contented.
We went to Kirkby Stephen Vintage rally at the weekend, which is a bit of an odd thing to take her to, but she got to have a very bouncy ride on the upstairs of a double-decker bus for the first time, which was something different for her.
We’re gearing ourselves up for Thursday’s trip to Newcastle now. A big day – bone marrow and lumbar puncture to tell us if there are no longer any leukaemia cells in her system. In theory, that should be the result. I spoke to Dr Skinner today and he said that last weeks blood tests suggest we should be in a good position. We’re keeping everything crossed.
We’ve had a difficult few days. Annie is having an increasing amount of pain in her legs, which, the consultant told us today, is caused by the steady build up of chemotherapy, especially the Vincristine. Yesterday she was really upset with the pain. We have been given a different pain killer to try although it might not be effective. It’s frustrating that we can’t help her more and it was suggested that there are probably more pains and difficulties with her legs to come and that this is perfectly normal. It’s just another awful side-effect. Despite all this, today’s consultant was pleased with her progress.
A lot of hair has come out now. At least Annie sees other girls her age at clinic who have lost their hair and is not fazed by it. She’s still hoping for curls like her friend Annie Miller when it grows back! She was a bit shocked last week when an older girl took her wig off in front of her. She couldn’t figure out how you could take your hair off. Then she found the idea of putting your hair on and off quite amusing.
After two visits to Newcastle this week we now get a bit of a break and don’t need to go back until next Thursday. It will be so nice to just stay quiet at home for a few days.