|Yasmin in the playroom at GOSH|
Andrew, Yasmin and I went to Great Ormond Street last Friday for the start of our daughter’s maintenance treatment.
It was almost six months to the day when we first travelled there, shattered and worried sick, after ten days at our local hospital, to see if we could find out what was wrong with our seriously ill daughter. At that time, Yasmin couldn’t walk and remained curled up in pain and fear in her buggy, her face pale, her long hair matted around her sweaty head.
This time, our cheerful little girl, no longer a toddler, confidently ran the length of the corridor, eager to get to the playroom.
And although the drill was completely the same as the last several times we have visited, everything felt slightly different. We felt different. As a blog reader whose son also has been treated for leukaemia put it: “Welcome to the other side of the Dark and Gloomy Woods! You'll never need to go through them again.”
We had reached the other side.
Although we are relieved to get to maintenance, medical treatments will still remain a huge part of our lives for the next eighteen months.
As our haematology nurse explained, the tests that Yasmin has had throughout her treatment show that the leukaemia has gone. The next 18 months of chemo is to ensure it doesn’t come back, it should destroy any stray leukaemic cells and it will also train the bone marrow to grow healthy and strong.
The best news is that Yasmin is now at 97% for complete cure.
The bad news is that she must still have the following: daily oral chemo, weekly blood tests that involves her port being accessed with a needle and weekly antibiotics. Once a month, we will go to GOSH for Vincristine chemo through her line which is taken with a five day course of steroids. Yasmin is on steroids now and although the doctors indicated that because it is for a small length of time from now on, you don’t get the full effects, this is incorrect! Our daughter is incredibly bad-tempered on steroids. They increase her appetite and, an aspect I had forgotten, they make her wee so much at night she wets the bed through her nappy. This means I have to remember to get up and change the nappy to avoid changing the bed sheets, which I had to do last night at 3am. Steroids, five days a month for 18 months, is not a fun prospect.
Once every three months, we will be back in GOSH for a lumber puncture for chemo in the spinal chord. We also must avoid contact with chicken pox and measles, be constantly vigilant when Yasmin’s immune system is low and if her blood counts fall below a certain level, she will need a transfusion.
But, 18 months from now, that should be it. We will not dwell on any other possibilities. Our date for final treatment is October 30, 2014.