No news is good news

As cousin Allan said, ‘no news is good news’ – that is true and probably the reason why I haven’t blogged for 3 weeks! We have been trying to have as normal a time as possible, visiting Grandma and Grandad, dressing up in her new Disney princess outfit (thank you CLASP for sending both anna and nathan presents) staying overnight at a hotel and enjoying the sunshine before the snow came.

Enjoying the sunshine last week

Since Anna’s ‘significant episode’ (consultant’s description) 3 weeks ago (septic liver infection) she has been on hardly any medication – just her ongoing mon, tue antibiotic, daily fluoride weekly chemo and half dose daily chemo. The change in her has been wonderful. She is happy, chatty and smiling lots and lots. She is however very, very weak. We know that even children who are fit and healthy when they begin treatment become weak so we are hopeful that she will recover strength but at the moment she is unable to do anything for herself. She can’t stand unaided, and even with support can only really manage about 5 seconds. Her arm movement is so limited that she cannot get food up to her mouth, or a tissue up to blow her nose etc. and she is completely wheelchair dependant. It is hugely frustrating for her and understandably also us. Luckily she is still determined, stubborn and persistent. She frequently tells me she doesn’t need help even when she clearly does. But I love the fact that she thinks she can do it!

This week is the beginning of intensification , a 5 week treatment block that involves intensive chemo input. Om Wednesday, Anna had a lumbar puncture to administer methotrexate to her spinal and brain fluid and a bone marrow sample taken – under a general anaesthetic. Despite anti scikness medication she was very sick in her bed on both wed evening and thurs morning. Thursday, Friday, Sat and Sun she is having cytarabine administered by hospital staff (I’m not sure why we aren’t allowed to do this one as we do give her much of her other chemotherapy). Outreach staff will come out on the thurs and fris (except bank holidays) and on the weekend days we have to take anna in to sick kids. That is a lot of visits. She does it extremely well, without complaining. You can see her below, happily laughing during a visit from the clown doctors.

This goes on for 4 weeks, with additional chemotherapy daily at home, along with the usual as listed above.

It is likely that she will become neutropenic over this block (ie her neutrophils will drop below 1 making her highly susceptible to infection) and she might finally lose her hair. I suspect the cumulative effect will be quite severe. On a positive note, after this she moves onto maintenance, which must be better.

 

 

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