9 days to go.

Today- Single digits, wow. I wish the same could be said about the statistics of children with childhood cancer. We went to the Marsden and saw our consultant. I told her that I felt Kings is keeping me in the dark and being shifty with me, which in turn does not at all reassure me (which they are trying to do I guess) but freaks me out no end. I told her I wanted her to be frank with me and tell me why they are doing one blood test after another, investigating a multitude of blood sins. Apparently they were alarmed about the platelets falling so much, which at this stage of treatment is not normal. It could be an indication of a relapse, and hence they looked at Vega’s blood in many different ways to determine the state of her marrow. Everything came back normal/negative. There are no signs of cancer cells but they can only be completely sure after a bone marrow extraction. Which conveniently is booked for next Wednesday already. If Vega would not have been booked for the bone marrow next week they would have ordered one especially. Scary stuff. Consultant said her gut feeling tells her all this blood business is part of the chemotherapy side effects but nothing is certain. She said they would want to see Vega’s platelets go up by themselves which would be a very good sign that it is not a relapse. She didn’t know today’s bloods at that point but I have since found out that Vega’s platelets have doubled since Friday. Good stuff. We decided that Vega will receive her last dose of Vincristine today, accompanied by her last five days of Steroids. Her daily, oral chemotherapy will very likely be withheld for good now and she will not take anymore Mercaptopurine and Methotrexate, her counts are still too low anyway and it is just not worth risking that poor liver again.

I really appreciated the consultant talking me through stuff proper for once, she took a lot of time to do so. She told me once again about the statistics too- children with similar age, gender and white cell count as Vega upon diagnosis and subsequently being classed as high risk have a 10% chance of relapse. She made that sound pretty good, but it is still one out of every 10 children that relapses. Out of those 10%, 80% relapse either on treatment or in the first 6 months after treatment. Well, we made it through treatment ok, and now Vega will be closely monitored for the next few months. Once the 6 months are over the chances of relapse fall further and further.

It feels like I am strapped in an incredibly, skull crushing wrench. Over the next few weeks and months the whole contraption is loosened, bit by tiny bit. But the process is so slow, so agonizing that you barely even feel the pressure easing. What a cruel kind of torture.

4 thoughts on “9 days to go.

  1. It’s all great news so far though, right? All is going in the right direction. Here’s hoping that this is a continuing trend.


  2. Oh my heart is with you – the good news always tinged with the /possible stats’ that make for shitty reading – one day at a time – so easy to say, so agonising to live!!

    platelets doubling is fab news though.

    hugs over and over to you all.


  3. Wow, down into single figures. What a milestone. Super news about the platelets. Stats are a funny old thing – we often read them depending on their significance to us. Could also say that 9 out of 10 children do not relapse – that’s a far better subset to belong to. The wrench may be releasing so slowly you can’t feel it but hopefully in 6-12 months or so time you’ll be able to take the deepest breath and feel an incredible freedom xxx


  4. Kathi, I don’t do stats. The bottom line is that uncertainty has become a way of life, hasn’t it?… but live you do, and long, and with enjoyment. Good to hear platelets on the up and no oral chemo. Bear with the steroids… last batch!!!! Lots of love x


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