Bald Santa

The posts on the blog are now as far and few between as our hospital visits. We are in week 9 of Maintenance cycle 1, meaning Vega had Vincristine on Monday and today is her last day on steroids for this month.
This week has been fine, Vega’s mood has really been pretty good considering her past steroid depressions. She is much more tired than usually but as long as I feed her a lot of white stuff she is happy enough. I read up about steroids again recently, and was reminded that steroids deplete potassium. Coincidentally I also read somewhere that low potassium causes depression. It made me wonder if there is a connection and since all this reading I have very consciously begun to give Vega more potassium rich foods, especially bananas (and yes they are kind of white so she eats them) and dark chocolate. Since doing so she is coping much better during her steroid weeks- whether it is the potassium or her body just feeling better in general as maintenance goes on- who knows?
Her weekly blood counts have been good and she has remained on the full dose for all her medication for over three weeks now, a good thing because it means she is tolerating everything well. We had no sore mouths or other methotrexate related bothers either.
The cough she was hospitalized for three weeks ago is exactly as it was three weeks ago. No improvement but it has not gotten worse either. At least she has not had a fever with it again.

All in all we seem to have mellowed into the whole routine a bit. Vega is feeling real good some days and I also feel much calmer. We are due at the Marsden on New Years Eve to see our consultant and begin Maintenance Cycle 2. Vega’s hair is coming back nicely and her walking is improving steadily. She is trying to jump, pushing off two feet at the same time, something she was not able to do since diagnosis, but she is doing it now when holding on to something with both hands. It is lovely to see. Such a little thing in terms of movement but a huge improvement to her mobility.

We are preparing for Christmas and Vega’s birthday on Boxing Day. She is excited to be turning four and even makes plans for turning five, six, seven…. I can’t help but being amazed at how she really is just taking her life for granted like this and that it will go on and on. The positivity and childlike optimism has not been lost despite everything that has happened this year. I look at her and I could nearly believe she has come through the worst of it almost unscathed.
I on the other hand feel sharp pangs in my chest every time she talks about her future. I can not forget that at the beginning of the year we didn’t know if she would ever turn four. I do not dwell on the past, but these are thoughts which are not easy to shake off.
And Vega is right. The future looks good and it is more likely every day that she will be five, six, seven…
But this year Christmas and her Boxing Day birthday are different. This time it seems more precious that we are all together, the significance of another year in a young life and that this is not something we will ever take for granted again. The run up to Christmas is almost as it was last year, busying ourselves with Christmas productions and seeing friends, candles and freezing wind. Yet this year we are also buying some chocolates for our nurses who are here once a week and we are going to hospital Christmas parties and meeting a bald Onco Santa.

Not something I would have expected last year…

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One thought on “Bald Santa

  1. Oh my darling – jumping is a HUGE thing and my eyes welled, my toes wanted to push too and my heart sang at the amazing image of her having a wee bounce. I instantly saw her on one of those mini trampets that have a handle!! plus my stomach was instantly filling itself with dark choccy covered bananas!!!

    I hope that the baldy Santa brings you all a deeply special Christmas and 4th birthday.

    I am so so pleased to hear she is merrily planning away and hope all the girls have a wonderful time.

    holding your tender heart close,

    love as always to you all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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