How is Maria?

This is a question I am asked often, whether it be in person, over the phone, by email, letter, etc.

It's really up to Maria to express how she feels physically and emotionally. This entry aims only to touch on the physical aspect of her health.

She is on a number of drugs, each of which can cause side effects. Unfortunately the steroids (dexamethasone) has not discriminated with Maria and she suffers from a number of its adverse effects. Overall, the following are a number of key issues we manage on a daily basis:

• Head pain - continues, but has not increased (that is positive because she is now on half the dose of steroids she was on only two weeks ago).
• As you have read, she rarely sleeps in the evening (steroids) and doesn't at all during the day (half an hour if she's lucky).
• The fatigue is almost at its peak (radiotherapy).
• She has a sore neck and lower back (steroids).
• Her hands shake (steroids).
• She has a bloated stomach (steroids).
• Her body is extremely weak from muscle wastage (steroids).
• She suffers some nausea, but is responding physically to the chemotherapy at present.
• She is still highly sensitive to sound/noise. She is unable to tolerate loud noise or multiple sounds (e.g. voices) simultaneously.

As you can see, the steroids are a common denominator when it comes to side effects. They are being taken to reduce any brain edema (swelling) but in some ways it's a huge price to pay.

Considering she barely sleeps, her moods in general are okay. When I put myself in her shoes, it's hard to imagine if i'd cope as well.

The kids have certainly adjusted to the role change with me taking on the primary carer's responsibility for both Maria and them. Whether Maria and I have adjusted to this...well that's another story for a book I'll put together in my spare time (don't worry, it won't happen because I don't have much of that).

I have always been involved with caring for the kids, but since Maria's illness I have appreciated even more the work that Maria has put in each day to train and develop them while maintaining an effective routine. I certainly have a long way to go on that front, but continue to try.

The kids have been a huge blessing and seem to be maturing that much more each week. They are participating a whole lot more in chores etc. around the house in the last week or so (on most occasions with "happy hearts").