June 6th - still no neutrophils

We made yet another another trek down to Piam Brown today, hoping to start Chemo and we were completely stunned when Paige's blood results showed that she had absolutely no neutrophils, yup a score of ZERO. Mary, her consultant spoke to us and though willing to start Chemo at 0.5 instead of the min of 0.75, she could not approve Chemo at 0. So Paige will have an unscheduled Bone Marrow test done tomorrow to see what's going on, along with Lumbar Puncture No 6.
The possible reasons for such a low count are:
1) she hasn't recovered from the last oral chemo that was given
2) she could have an infection, but she doesn't have a temperature so we could rule this out - I think
3) she has had a relapse, Mary thinks that this is unlikely so quickly since the last bone marrow done 3 weeks ago was quite clear.

So we continue to wait with little clarity as to why this is happening or what impact this has on the overall scheme of things. The goal posts continue to shift and 'frustration' keeps being redefined on quite a regular basis. In the meanwhile Paige is using the opportunity to practice standing, climbing the stairs and holding on to the furniture to walk around. I think that she knows the next round will be rough, so she's making full use of her time with no Chemo......

So again we continue to wait and see....