We were asked right at the start if we would agree to take part in a research/clinical trial known as UKALL 2003. It has its own website (linked to on the right) where you can find the entire treatment protocol, flowcharts of the different treatment regimes and other information.
I'll go into greater details about the objectives of the trial in a later post but basically it aims to evaluate whether different treatment regimes will have a effect on full recovery/later relapse rates.
The prognosis for successful treatment is now fairly good – around 80-85% of young children will not suffer a later relapse. There are a number of factors that can influence successful outcome. Being so young and being female make Kezia's prognosis better. The gender difference means that boys receive 170 weeks of treatment and girls 118 weeks.
There are three regimes – A, B and C. A being the least intense treatment regime and C being the most intense. The regime a child follows depends on a lymphoblast count in the bone marrow on days 8 and 15 of the first stage of treatment + some other factors, such as whether lymphocyte B-cells or T-cells are affected (B-cells s/he comes off the trial and follow different treatment – sorry, but I know nothing about it).
Kezia had a bone marrow lymphoblast count of > 50 (x 109/L) when she was admitted so she was automatically assigned to Regimen B. As her count was still greater than 25% at Day 8 she was then assigned to Regime C. What is called a Slow Early Responder (you got it – SER) as opposed to a RER (have a guess! ... Rapid Early Responder)
Her initial very high WBC/malformed lymphocyte counts indicated that she'd probably had leukaemia for a few months. We'd noticed symptoms but neither the doctors here nor ourselves could interpret them. We had noticed some unwillingness to walk, in March she fell down the three steps to our veranda, twisted her ankle, leading to even more unwillingness to walk – we didn't know that an effect of leukaemia was pain in the soles of the feet.
Although her lymphoblast count at Day 28 showed full remission had occurred, the trial protocol specifies that the treatment regime is decided based on the Days 8 or 15 lymphoblast count.
I won't go into all the variables that decide which Regime your child will follow –I would be reinventing the wheel as a square - please consult the protocol documents on the UKALL 2003 website and speak with your doctor.
However, I will say that the massive increase in recovery and survival rates over the last 30-40 years has been due to children participating in such trials and that we also should participate for the sake of future sufferers of ALL and in the hope that their opportunity is even greater than that of our own children.