August 2006 - We're Pregnant
8/10/2006
Some of you already know about the goofy thing the doctors found in my blood (extra
white blood cells from CML, more info below). But now I can tell you about something
else in my body that the doctors are watching very closely: a tiny angel. Yes, I’m
pregnant!
God sent Mark and me our tiny angel just in time to help diagnose the CML at a very
early stage. We are so blessed. The diagnosis of CML came at my first prenatal
appointment. I am doing very well so far with the treatments and our baby, who is now
at 15 weeks and almost 4 inches long with all his/her fingers and toes, is doing well too.
It may seem like the world’s longest pregnancy, but we are optimistic that everyone will
be ok.
Thank you all for your prayers during this overwhelming time —keep it up—they really
are working. Thank you also for the cards & e-mails (even though I haven’t been good at
responding).
For those who want more details on the condition, there is more below.
Love, Amy & Mark
More info on CML – the revised pregnancy edition
What does CML stand for?
It has a scary name, but remember it is treatable and curable. It is called Chronic
Myelogenous Leukemia. Chronic means it progresses very slowly. Myleogenous
indicates that the white blood cells are mature and functioning. (The more common
form of leukemia is much more serious because the white blood cells are immature
and not functioning properly.) Leukemia means too many white blood cells.
What is CML?
Two of the chromosomes in my blood got mix-matched. They are still functioning, but
the signal for white blood cells to naturally die off in a timely manner is not working
right, so I have way too many white blood cells. The good thing is that all of the white
blood cells I have are mature, functioning and doing their job to fight infections.
When did I get it?
My doctor thinks I developed this about one month before they caught it at the end of
June. It is very good that they caught it this early. There is a low chance it will progress
to a serious stage.
How did I get it?
Doctors have no idea what triggers this chromosome mix-up in healthy people with no
risk of unusually high exposure to radiation or benzene. It is rare that I have this in my
early thirties—most cases appear in patients in their 50s and 60s.
How is it treated?
There is now a miracle drug: Gleevec. Gleevec is successfully putting CML in remission,
sometimes as early as 3-6 months. Gleevec is not good for babies, so I will not begin
taking it until I deliver.
In the meantime, my blood is being filtered to remove the extra white blood cells through
a process called apheresis (similar to dialysis). I have a catheter into a vein in my chest
which has 2 tubes coming out. These tubes connect to a machine that my blood flows
through into a centrifuge. The extra white blood cells are sorted out and the rest of the
blood components go back in my blood stream. The process is about 4 hours. In my
first treatment the machine removed 1 lb. of white blood cells.
Because I have responded so well to this process, I have graduated from twice a week
to every other week, and, best of all, they are able to delay the use of an intermediary
chemo drug until later in the pregnancy. The biggest risk with the filtering is developing
an infection from the catheter, but so far I have had no problems.
The moving target for when I stop filtering and begin taking an intermediary medicine is
sometime in October. (We are hoping that I can go even longer and may not need to
take any medicine at all until the baby comes.)
How common is CML with pregnancy?
This is very rare. I will be the 3rd documented case in the world of a woman who is
diagnosed with CML during pregnancy. There was one woman in Japan and one in
Turkey. We are so thankful to be in Houston!
There are several cases of women with CML who become pregnant after their CML
diagnosis, some accidentally while on medication, and some planned during remission
while taking a break from the medication.
Does it hurt?
I feel like I have mono—very tired and my spleen is very sore, since excess white blood
cells hang out in the spleen causing it to become enlarged. The catheter in my chest is
very uncomfortable and sore, but I'm getting more used to it. I also have a little anemia
because the filtering process also removes a little hemoglobin, so I have to get blood
transfusions (just red blood cells) every couple of weeks during the process. The
transfusions are causing the most aggravating symptom: horrible itching spells, a
common but not serious reaction. All of this, plus morning sickness and the other
normal pregnancy stuff. Now that I’m entering my 2nd trimester, I should start feeling a
little better.
Is the baby going to have CML?
No. CML is not genetic. And, since the baby’s blood is totally separate from mommy’s
blood (only filtered nutrients go from mommy to baby through the placenta), the baby
will have no additional risk of having CML.
When is the baby due?
My official due date is February 22, but actual delivery will probably be closer to
February 1. As soon as the baby is ready, the doctors want him/her to hurry out so that I
can start the Gleevec.
Who is my doctor?
Because many of you have asked and may even know them, here is the short list of my
fabulous team of doctors.
Dr. Priya Ramshesh (primary hematologist/oncologist, Kelsey-Seybold)
Dr. Brian Kirshon (high-risk ob/fetal medicine, St. Luke’s)
Dr. Frances Smith (primary ob, Kelsey-Seybold)
Dr. Arthur Bracey (pathologist, St. Luke’s)
Dr. Paul Allison (pathologist, St. Luke’s)
Dr. Hagop Kantarjan (consulting oncologist, MD Anderson - world’s leading CML expert)
et. al. (hundreds and hundreds of doctors have reviewed my case at 2 large
conferences)
What can you do?
Please keep us in your prayers. If you want a more active job, you can also start
donating blood—a very import thing for healthy people to do. I am AB+, but because the
doctors are being very careful I cannot receive any blood from relatives or Mark and his
family—opposite of what you would think. It doesn’t matter where you donate, but if you
are in Houston and want to donate in my name you can go to St. Luke’s.
Where am I?
I am at home. I spent one night at the hospital one night to prep for the surgery to put in
the catheter. They don’t expect me to have to spend any more nights at the hospital
until the baby comes. I go to St. Luke’s for the blood filter—I am there about 6 hours at a
time. I am doing museum work from home, which is definitely not as fun as being
there. My main tasks right now are to rest and eat.
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