The title of my blog is not really appropriate for this post,
although my friend does fall into the Funny Feckers category normally. It is
however a very important one that I simply have to write and I am hoping that
people will read and share this far and wide.
I have a very close friend suffering from a rare form of non-Hodgkin’s
Lymphoma (only AM could have a rare form of Lymphoma and an even rarer sub
type). She is 35 with three children and lives in the rural town of Chinchilla
around 4 hours away from Brisbane and treatment. She has spent the last 18
months mostly away from her family undergoing treatment, including a stem cell
transplant.
She has been looked after superbly during this time by the
Leukaemia Foundation with accommodation and transport provided for her and
other regional patients who face months of treatment far from home.
She is now in need of
a Bone Marrow Transplant, but there are no matches on the Bone Marrow Registry
for her. My friend AM has four siblings
all of whom have been tested, but none match. Two out of three people will not
find a match amongst their siblings and need to use the registry.
The Bone Marrow Registry is something I was unaware existed.
We all know about nominating to donate your organs, but what about Bone Marrow?
But wait you say, it is a horrible procedure for the donor to undergo. Well now
thanks to the advances in medicine, a Bone Marrow transplant is nothing to fear
any more than any procedure under local anaesthetic and some people may feel
slight discomfort over the days following the procedure. While a stem cell donation may produce mild
flu like symptoms. To register it is a mere blood test. Only 1 in every 1000
will be called upon to donate in any given year.
Initially I wanted to be able to be tested solely for my
friends benefit. Then I stopped and thought about things and the fact that if
it were one of my children I would hope there was someone out there was
generous enough to have registered. So I
am in the process of joining the register, hindered in part that there is no
Red Cross Blood Bank handy.
This is in fact the part where bureaucracy seems to hinder the process and make what
should be a simple blood test a complicated effort. For me to register my
nearest blood bank is 4 hours away, with a 3 month waiting list for
appointments. I do however have both Sullivan & Nicolaides and Qld
Pathology nice and handy at only 20 minutes away, yet they are unable to
perform the test for me as they are not authorised for want of a better
explanation.
I sent off an email to the Bone Marrow Registry explaining
the difficulties in getting to a Red Cross Blood Collection Centre, but how I
really wanted to go on the registry, and received this response:
Unfortunately the only place you can join the ABMDR is
at one of the Australian Red Cross Blood Collection Centres as anyone joining
the registry must meet the blood bank criteria. There are also number that only
the blood service has to identify potential bone marrow donors, as we do not
use names for matching up patient and donors.
I can only suggest that you ring the 13 14 95 number to
see if by some chance that donor centre sends a mobile unit out near wherever
you live or if you go to the town/city where the blood centre is anytime you
could join up then - you still need to ring 13 14 95 for an appointment.
Everyday new donor's typing is entered onto the database
(which is worldwide) and compared with all patients in need so we have to hope
that your friend finds a donor from this database.
To me this is simply not good enough. I have a friend who
needs help and I know there are many out there who would help, especially if
there was a much simpler process to register. She is also not alone, with many
others waiting to find a potential donor to help them extend their time. Cancer
is an insidious thing and I know it will touch many of us in some way. To me
this is my way of being able to pay it forward, even if I am not a match for my
friend, perhaps I can help another.
Please I urge everyone to take the time to consider what
could be a donation that will save a life.
Below is a link to the ABMDR (Australian Bone Marrow Donor
Registry) website. Also a copy of my friend’s story from the Lymphoma
newsletter.
No comments:
Post a Comment