2 November 2009
Dear
all
As
you know, Luna had surgery back in June and was pronounced clear of all tumour
shortly afterwards. We continued with 'maintenance' chemo up until mid-October
which Luna has tolerated well. She is an extraordinarily happy and chatty
little girl!
Over
the last two weeks, Luna has been through a comprehensive set of tests and
investigative surgery to ensure that she is still clear. We have just received
confirmation that she is indeed clear, as expected.
About
a month ago, in a long meeting with the most senior consultant at the hospital
(who had been on three month leave to undertake research), we reviewed Luna's
case in detail. Our assumption after Luna had been pronounced clear
of tumour was that her outlook had improved dramatically since the
original diagnosis. The consultant informed us that infact Luna's outlook
had only improved slightly since the original diagnosis for two reasons: first,
they had elected not to give her radiotherapy after surgery due to the severe long
term side effects; and two, because the real problem with the type of tumour
that Luna had is not getting a patient clear of the tumour but keeping the patient clear
of the tumour. The consultant explained to us that the risk of relapse is
significant for three years after diagnosis and thereafter is negligible.
Unfortunately, this was not explained to us after surgery.
With
this in mind, we were offered the opportunity to participate in a second
clinical trial: a further six months of continuous low dose chemo consisting
of the drugs that would normally be administered if a patient
relapses. The oncologists believe that by giving the drugs first, there is
a possibility that it could prevent relapse. As with all chemo, there are
side effects, and the more chemo that is administered, the more serious the
side effects become. We reflected on this for a long time, but decided that we
could not say no to the trial as, although the side effects are potentially
serious, the most important thing was to get Luna through the next few years.
In our hearts though we believed it was not necessary.
Last
week, we gave our consent to the trial and the consultant put Luna's name in a
randomisation program to see if she would indeed be included in the trial (all
trials are randomised in order to avoid any bias in the types of patient that
participate in the trial). The randomisation came back negative so Luna's
treatment is now finished. Of course, she will undergo the same set of tests
and investigative surgery she has recently been through every three months for
the next two to three years.
It
is a very odd feeling, but now we must trust in Luna and higher powers than us.
She continues to provide us with inspiration and a lot of laughter!
With
much love
Monica,
David & Luna
