MINEFIELD EXPLOSION

Hi All,

Been a few days since last entry. Things have gone a bit pear shaped. Unfortunately, since Christmas Day my blood counts have started to fall, reversing the trend that had resulted in such a positive start to the SCT. The drop has dampened the Christmas sparkle somewhat.

My white blood counts and neutrophils dropped quite dramatically on Christmas Day: neutrophils down from 1.46 (which is almost normal level) to 0.08 and white cells from 1.77 to 1.1 Since then the drop has continued but by less dramatic increments. My neutrophils as of this morning are 0.05 and white cells, 0.86. Doctors cannot give me any reason for this sudden reversal in fortune. It may be that baby number 2 is putting up a bit of a fight and wants to become the dominant graft cell...so maybe there is some internal struggle going on which has resulted in the lowering of my white cell/neutrophil count. It may be something more sinister. If drop continues they will have to investigate further. However I am hoping that the babies are just kicking off a bit and trying to determine which will be the dominant one. I should have a chimerism result in the next few days too, and that may shed some further light on what's going on. I will try and explain 'chimerism' in simple layman's terms: chimerism measures the percentages of the different blood groups that are currently moving around my system. The last test a few days ago, showed that there was 30% of baby no.1 blood group and 70% of my original A positive group. This is what prompted the medical team to suggest that early engraftment was already taking place. But perhaps that was too hasty a conclusion to draw (and raising my spirits stupidly high). Anyway, we shall see over the next week or so. The waiting to see if the stem cells have grafted is hard enough. To now be wondering why my counts are dropping too, makes things double tense. Focus on the positive: no infections. Praying to all of the Gods.

I am often bothered by odd pains in different parts of my body and still struggle with nausea. Loosing hair by the finger full and loosing a bit of weight too. However still managing to eat Luigi's nourishing soups everyday. I walk up and down the 'quarter-deck' for five to ten minutes daily. It is my only glimpse of the outside world: an empty Ruskin Park, save for the odd dog walker. I see the sky though the tangle of bare winter branches. Sometimes I see the odd light twinkling from the houses on the far side of the park. The other day I glimpsed a plane too. That was a treat! It is tough to only look onto a brick wall. My thoughts bounce around like a wild ball in a squash court. Round and round. Side to side. Bang bang. No way out. No exit. Exhausting.

I worked out today that I have been at Kings for over three weeks now. The time has gone by so quickly. It has not yet been the nightmare I was expecting, so in many ways I have been really lucky. But I dream sad dreams of Lilly. Too often. Woke in tears one morning. I get to feeling blue sometimes. While other days I am longing to be out and working in the studio. I find myself building plans for new ideas, things to develop when I am out of here. That makes me feel excited and raring to go. Although I have little physical energy at least my brain has still got some umpfh...

Hope everyone had good seasonal festivities and now enjoying a wind down before the last blitz of the year. Thanks for all your many christmas messages and cards - as ever, great to hear from you all. Keeps my spirit afloat!

Hope next time I update the blog it will be with brighter news. Glum doesn't make for such good reading, I know.

Hugs around the globe. A presto tutti. Back soon, tchxx