Medicines and eating are 2 things that Anna has been struggling with over the past week. She has to take a lot of drugs – steroids, drugs to address side effects of steroids, chemotherapy, drugs to counteract the side effects of chemotherapy, drugs to mop up toxins released as the leukaemia cells are destroyed and antibiotics (up until last night). She takes them orally, through her portocath or injected directly in to her brain/spine fluid (last one under general anaesthetic). That is a lot of drugs for one little girl. As she says, ‘they don’t really taste very nice’, and she’s right. Medicine time is a struggle for her and me or Peter and usually results in tears and tantrums on someone’s part. It is very hard to make her take something that tastes horrible but we know how necessary it is for her treatment. The current routine is that pink piggy (her favourite toy) has it first and then Anna has it followed swiftly by a large gulp of milk. But that process for each spoonful can take around 10/15 mins. Ideas on how to make it easier please…
As well as this, she is not eating. Her weight has dropped considerably over the last month and we are being told to offer her a high calorie diet. I’ve never before been encouraged to spread the butter thickly, mix double cream into milk for drinking (in fact mix double cream into anything we can), pour olive oil over everything and give her lots of cakes. It does feel wrong (but sounds delicious!!!) in terms of everything we are told about healthy eating. However, it turns out it doesn’t really matter what we offer her at the moment anyway because she is not keen to eat anything much at all.
The steroids are supposed to make her ravenous but there is usually no sign of this yet. However, this morning, when she wasn’t allowed to eat anything after 4am because she was going to theatre and needed a general anaesthetic she still wanted food (pasta with butter) from the minute she woke up. It was a long morning as we couldn’t give her anything until 11.30am!
The current solution to both of the above is to give her a feeding tube through her nose so she will get nutrients fed in during her sleep and use it for medicines during the day. Let’s hope it works…
She wasn’t too keen on me taking a picture with her tube in her nose which is why she isn’t smiling. Again, I don’t blame her. She is doing incredibly well!
anna's blog 
Anna is still looking pretty in pink even though she is clearly on her dignity.
Great to be able to see your beautiful wee face.Big hugs and kisses to you all. from maureen alastair marc & greg.xxxx.
Morning to you all, hope that Anna had a good night. My mum recommends highly a spoonful of jam after eery dose to help medicine go down. It sounds like she is trying so hard to be a big girl about taking so much ‘yucky’ stuff – must be very hard for you to see through each day, many times. The tube must have been a big decision but if it helps build up her strength and prevents a buit of stress over medicine then fingers cressed that it will help her be a bit more comfortable. Our very best wishes to you all x
What a brave girl she is. Thinking of you and your daily challenges.
Anna has a real “Oh Mu-uhm!” look on her face, like a disgruntled teenager who doesnt want her photo taken. Bless her, it made me smile. Poor wee sausage having the NG tube, not fun. I’ll ask Oliv if she has any tips on getting the meds in. Much love to you all. xxxx
What a lot of medicines! + she still looks gorgeous even with a tube in her nose,
hope you have had a good medicine + food day today (hopefully with lots of double cream!),
Mary
xxxx
Anna is being so strong (just like her amazing mummy !!) Good luck encouraging her to eat. That must be incredibly tricky. I have a large glass jar of chocolate coins – you can take it if you think she would be influenced by festive sugary bribes. 🙂 kisses from us xx
Dear Anna
I think you look absolutely beautiful in your lovely pink pjs. And I am very glad that you are surrounded with so much love from all your family and furry friends. I hope you find your appetite coming back – cream with everything seems great to me. Perhaps a little honey for flavouring medicines just like Pooh Bear and piglet too! Take care my little sweet heart, I will be sending kisses and hugs in your dreams. God bless to the whole family. If you need any help you simply have to ask.
Love Heather ( a friend of grandma)
ps. I’ll keep you all in my prayers
Ann Marie don’t know if it will help but mixing the medicine in yoghurt but just a little if her appetite is not there.
It is sooo difficult I remember Jess being held down by 2 nurses and me trying to sign to her while they gave her medicine it is heartbreaking and you want to say stop but know they have to have it.