Waiting Game

Vega was supposed to start Maintenance cycle No1 today. But yesterday’s blood test revealed shockingly low counts-

Vega’s blood counts 24/09/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 7.5  (9.5-15)

WBC (white blood cells)- 0.26  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.02   (>1 is not neutropenic, normal range starts at 3)

Platelets 144  (150-450)

I can’t quite believe she actually went to nursery with counts like that, especially since the school has a freakish attendance policy- in the words of Lyra’s class teacher “unless they are dead or have a limb hanging off, send them in”- so three weeks into the new term pretty much every child (and parent) has a cold. Anyway, no damage was done but it goes without saying that we are not risking it any more until next week’s blood test on Monday. Since the beginning of each maintenance cycle is also count dependent (Platelets have to be >75 and neutrophils have to be >0,75) Vega did not have chemo today and did not start maintenance. I don’t really mind this delay, it gives us a week (or more!) longer to relax and for Vega’s body to recover. Maintenance also means daily medication and the delay, well delays that too.

The low counts surprised me a bit, it is a stark reminder that even our “regular” chemo, like the Vincristine she had last Tuesday, have quite major effect on her body. And this is one of the drugs she will continue to receive very regularly throughout maintenance. So I might be rethinking the whole holy grail thing.

Vega is well. If you look really closely you can see tiny bits of hair growing on her head and her eyebrows. Vega is, in her own south London words, “well chuffed with that”. She has moved back into the top bunk because for the first time in 8 months she was able to climb the ladder all by herself. Up is going well, down not quite so well yet, but this marks another milestone in regards to her mobility and just shows how much the strength is building up in her legs. Her eating varies, and I sometimes seriously wonder if a three year old really can survive on sausages only. Mind you, sometimes it seems as if Alys, our one year old is surviving on cheese only…

Vega enjoyed her first three days in nursery. I posted this picture on Facebook, of her just before her first day-

She was so happy! First day went great, second day we had some tears. I think it is really quite hard for her to be around so many children and I could tell that she was worried about being bumped into, or even touched. I think she feels quite fragile, and she is fairly unsteady on her legs, and so on the second day she got pushed over while walking outside. It frightened her a bit, hence the tears. She told me a boy had hurt her on her leg, another one on her arm… and so on but I think this is literally children touching her and she perceives it as painful. It is something we are now working on with the staff at the nursery, being mindful of where to line Vega up with other children etc while giving her the time to get used to be with children again and building up her strength and balance.

Looking at that picture I feel like Vega is looking more and more like she should be. I mean her face is starting to look like her face again, without the extra weight and bloatiness of the steroids and not too thin and haggard from all the chemo. This is a bit more like the Vega I used to remember. She also smiles more, like she used too and I guess that helps.
I think I have posted before pictures of Vega, but here is another one (just because she is so lovely!!).

Now we just have to stay out of the hospital, and with counts like that febrile neutropenia is always on our minds. My shine fundraising walk is on Saturday and hospital would be most inconvenient. (I will not remind you to donate or point you to the link to my fundraising page on the right, yes just there, or remind you to sponsor a teammate…)