Saturday, March 5, 2005
Updates in progress! Check back soon!
Sunday, March 9, 2003
Merel had an MRI on Thursday, almost a full year after she finished six
weeks of radiation. The results were good. Dr Jakacki reported that the
scan was clear, meaning any swelling from the radiation is gone, and the
tumor is now inactive. It will never completely go away, but it is now
unable to grow, and that will hopefully remain the case for many years.
We are also very lucky that so far, there have been no adverse side effects
from any of the radiation. The thought of having your brain zapped with
waves designed to kill tissue remains scary and we can never really assume
that no ill effect will come of it in the future. After all, side effects do
continue to linger from the chemotherapy. After a period of relative quiet,
Merel is continuing to have bouts of back pain, and Dr Jakacki told us to go
see a chiropractor, which we will do shortly.
Physical development remains an area of concern. For the most part things
are progressing normally, but height is something they are looking at. Over
the past 12 months, Merel gas grown just 1 inch and is now 59 in tall (4'11",
or 150 cm). We have an appt with Dr. Escobar (endocrinologist) in two weeks;
Dr Jakacki mentioned the possibility of growth hormones.
A January visit to Dr Davis' office (pediatric opthalmologist) showed no change in
her optic nerve. The situation is stable, which is the best we can hope for.
There was a slight change in her prescription, but they said that part of normal
development. Merel just finished her first season of basketball, and despite
her limited eyesight, she makes the same shots all the other kids her age are
making, which prompted Dr Jakacki to say, "Imagine what she could do with two
good eyes". In school, things are also going well. In a conference with her
teacher, we were told that Merel is a "model student" and often helps out other
kids with their work.
Wednesday, Nov 13 2002
Happy Birthday, Merel!!
Sunday, Sep 30, 2002
OK, so still no report on the California trip. But here is a health update.
On Friday, September 13, Merel had an all-day appointment at the hospital,
which included an MRI, a visit with Dr. Jakacki and a visit with Dr. Escobar,
an endocrinologist and another new player in our never-ending parade of doctors.
The short summary is that everything is going as planned and there are no new
complications. The MRI checked out normal - the tumor is stable (but should
continue to shrink as the immediate effects of the radiation wear off), the cyst
has shrunk and her vision remains the same. Dr Escobar said that Merel seems
to be developing normally. When he reviewed her early charts, he was astonished
to see that while she was very sick at birth (extreme jaundice with a billirubin level of 72),
she does very well in school. Nearly all kids with such high billirubin levels
end up with mild or severe forms of retardation. The doctors have books of standard
questions for each grade to ask kids; she didn't have any problems with the grade 5
questions. They did urge us to get another appt with the eye doctor.
A problem that does not seem to want to go away is Merel's consistent, and by now
chronic, episodes of lower back pain. Dr. Jakacki asked dozens of questions, did
several tests, took nine tubes of blood, had a spinal MRI done (which had us
somewhat nervous), but nothing seemed to jump out. She is
going to talk to Dr. Romberger, our pediatrician, to get a referral for a
chiropractor. We had tried this avenue before, but Dr. Romberger wouldn't approve it
Meanwhile, life continues normally. Merel is again actively involved in cheerleading
for the St. Barts Bruins football team, with practice twice a week and games once a
week. Karate goes on as well, with both Merel and Ellie coming up on their Red Belt
test. They are also both taking piano lessons and starting basketball this week.
Then, in November, ice skating starts!
Thursday, Aug 8, 2002
We are back from a two week California vacation. Check back for full details!
Thursday, May 16, 2002
Radiation treatment finished at the end of March, and things have been
uneventful for Merel since then, other than the occasional headache, some
of which were due to sinus infections. Then this past Sunday (Mother's Day),
she began to get unusually tired, sleeping much more than normal and unable
to get up in the morning for school. Normally Merel is up before any alarms
go off, but this week she's been sleeping late, taking naps during the day
and going to bed early. We called Dr. Jakacki on Tuesday, and she ordered
an MRI that same day. This was a traumatic experience because the nurse had
to stick Merel twice (the first needle broke). On Wednesday morning, the call
came to tell us that the scan was normal, and that the cyst actually looked
smaller. Today, Dianne took her in for an appointment and was told that this
a normal occurrence about six weeks after radiation treatment (although no one
told us about this ahead of time). Some kids have been known to sleep 20 hours
out of the day. Not even our cats manage that! Merel also lost some weight
(from 98 lbs (45 kg) down to 91 lbs (51 kg)), something they were very happy
about. She's also been having pain in her legs, which was attributed to growing
pains. Merel will need to see an endocrinologist, who will monitor her growth,
possibly adjusting the process with hormones. This is an issue because the
thyroid could have been affected by the radiation.
It was a stressful week, with some new and (to us) mysterious symptoms, but
it seems like things are under control. Vision remains stable and there are
no other lasting symptoms at this point.
The other stressful event of the week was Mother's Day, when we came home
from visiting relatives to find part of our house crushed by half our elm
tree, which had been struck by lightning. No personal injuries, since we
Monday, March 11, 2002
We are just past the halfway point of the six week radiation program,
and things are going well so far. Merel is less tired than during
the first two weeks, although headaches are pretty much a daily
occurrence. Usually, Advil takes care of it. We met with Dr. Jakacki
today. She reminded us that the radiation will initially cause
swelling in the tumor, and that taking an MRI anytime in the next
three months will be fairly meaningless. We're looking at probably
nine to twelve months before the swelling will be completely gone,
and at that point the tumor should be much smaller, perhaps reduced
to scar tissue. At any point during the next six months, headaches
could get worse, and we need to check on her vision regularly to make
sure it isn't getting worse - the swelling could exert additional
pressure on the optic nerves. Should the swelling get too much,
there are medications available to reduce it. Otherwise, things
are going well. We were able to report that Merel is all caught up
with school work and that she is enjoying all her usual activities,
karate twice a week and this weekend we're starting ice skating lessons.
Tuesday, February 19, 2002
Radiation started yesterday, and will continue for the next six weeks,
every work day at 10 AM. Both today and yesterday, Merel ended up with
headaches. Painkillers didn't seem to help too much. Also today, she
was very tired after treatment and once she got to school, the teacher
(Mrs. M) told Merel she could rest her head on her arm for a while. After
about 10 minutes or so, things were a little better. So far, everyone
including Merel, is in pretty good spirits about the whole situation.
Let's keep it that way!
Monday, February 11, 2002
Today we went in to have the (two) CT scans done that they need to
set up the machine and to create the masks that will hold Merel's
head exactly in the right place. One of their attempts failed and
we were given the rejected mask to take home, you can see it here
(click the picture to see a lerger version).
The blue circles (pointed to by the black arrows)
indicate where the radition beams will strike her
head. There is one on the left side of the head as well, opposite
the one on the right side that you can see.
Dr. Deutsch sat down with me and went through the list of possible
side effects again. Some hair loss is almost certain, but only
where the beams hit, and it will grow back. Other side effects are
possible but less likely, such as growth problems, hormonal
problems, cancer, and intellectual development. They tell you all
this stuff of course so that you will sign the consent form. At
this point we don't really have any choice, and we've been led to
believe that the side effects will either be minimal, or manageable.
We have at least one more appointment, on Thursday when they will
do the simulation, to make sure everything is set up correctly. If
there are any problems on Thursday we will have to come back on
Friday. Treatment will start Monday the 18th, at 10:00 am, and
will continue every Monday through Friday at the same time, for
six weeks in a row. Dianne called Sr. Karen at the school to
make sure that they work out some way that Merel won't fall behind
with her school work.
Last Friday, we picked up Merel's new glasses. She complained that
they were blurry, but now, a few days later, she seems to have
gotten used to them, and things are better. On the bad news side,
Merel continues to have a lot of lower back pain. We are working
on getting her into a chiropractor.
Wednesday, February 5, 2002
Met with Dr. Deutsch today. Dr. Deutsch will oversee the radiation
treatments that Merel will receive. There are going to be two more
hospital visits before the actual treatment can start. The first one
is next Monday, when they are going to take a CT scan (similar to an MRI),
which will provide the necessary information for the computer that
controls the so-called radiation accelerator. This is the machine that
delivers the radiation. We saw it, it fills an entire room and it costs
a million dollars. They are going to make her a mask that will fit
tightly around her head. It has holes in it so the patient can see
and breathe. The mask will have markings on it where the beams should
enter her head. Without the mask, they would need to make semi-permanent
markings on her head. When treatment is over in six weeks, we can take
the mask home.
The surprising thing about this meeting was that Dr. Deutsch seemed
much less worried about side effects than we were, or than we would
have expected. When questioned about it, he said that he really didn't
expect any long-term side effects. Hair loss is likely where the beams
enter the head, but he said it should grow back quickly. Hormonal
imbalance (delayed development, for instance), is common, but can
be treated with medication. The rate of success for this procedure
is "pretty good", according to the doctor, who went on to say that
the chance of recurrence is low, about 10-15%. Some kids also
experience bouts of aggressive behavior.
The second meeting, following the CT scan on Monday, includes a
Simulation. This is where they put the mask on, position the
patient in the machine and make sure everything is set up right.
No radiation is administered during this visit. If all goes well,
we can then go into treatment, which will be six weeks of daily
visits (Monday through Friday). Each visit will take only about 5-10
minutes. This should get rid of the tumor, although it is likely that
some scar tissue will remain.
Overall, a pretty encouraging meeting. One strange thing was that
Dr. Deutsch thought, and he said this a couple of times, that there
was "no rush" to get any of this done. To us as parents, this was
baffling. Who wouldn't want this taken care of yesterday? Anyway,
we're optimistic. And thanks for all the email to Merel (firstname.lastname@example.org),
she really enjoys it!
Tuesday, February 5, 2002
We saw Dr. Davis today, and his diagnosis was that the situation is stable,
meaning there is no (additional) pressure on the optic nerve. This is good
news, as it would have made the radiation treatment more difficult and risky,
not to mention the danger to her eyesight. Merel got a new prescription for
her glasses, a little stronger for the good eye, but as Dr. Davis explained,
this is a normal part of growing up and has nothing to do with the tumor
being active. The "bad" eye also gets a real lens instead of just a piece
of glass, since they discovered that she could see a little better with a
(fairly weak) lens. After karate lessons, we went to the optician and ordered
new lenses. They will be ready tomorrow.
Tomorrow (Wednesday) is our appointment with Dr. Deutsch. It turns out Dr.
Davis knows him personally, since he treated his mother. He said that the
doctor is very nice and very good. At this visit we'll find out about the
exact plans they have for Merel and the possible side effects.
Monday, February 4, 2002
Dr. Jakacki called today and told us that Merel will need radiation. Simply
removing the cyst will not stop the problem of the activity in the tumor. In
fact one possible side effect of the radiation could be that, while the tumor
is being killed, the cyst will actually grow. In that case, she will still
need surgery to remove the cyst.
Tomorrow (Tuesday), we're going to see Dr. Davis for an eye exam. Dr. Jakacki
wants to know the results immediately (via phone or fax). For the radiation
treatment, we are going to meet with Dr. Deutsch, head of the Radiology Dept
at Children's Hospital. No date yet for this meeting. The protocol will most
likely call for daily radiation treatments (about 15 min each), for about six
weeks. Dr. Jakacki said that this is not a life threatening situation, and
that the radiation will almost certainly kill the tumor. Reoccurrence is then
not expected until at least another 10 or 15 years, if at all. In that case,
they would go back to chemotherapy, or whatever the state of the art calls for
at that point.
It will be a busy week. Keep checking here for updates.
Friday, February 1, 2002
Another MRI (taken yesterday), and this time the news is different. As Dr. Jakacki described
it, there is sign of "activity" in the tumor, which is causing the cyst in the back of
Merel's head to fill up with fluid. The fluid is clear, which means it's spinal fluid.
That's actually a good sign (colored fluid would be worse). There is no immediate
decision on what to do next. Dr. Jakacki is going to confer with Dr. Adehlson (who
was in surgery today) and the other doctors on Monday. She expects that they will decide
to either start radiation, or perhaps perform surgery to remove or drain the cyst.
She called again later to tell us that we should go see Dr. Davis (the eye doctor)
as soon as possible; they want to know if there is any danger to her vision now
that the tumor has become active. The activity in the tumor does not seem to include
a growth in size or a change in shape. Rather, it is causing fluid to leak into the
The prospect of radiation is not something anyone is looking forward to. While it doesn't
have the immediate sickening effects of chemo, there are other risks, such as short term
memory loss, hormonal imbalance and rapid weight gain. Of course everyone reacts differently
and there is no guarantee that any of these effects would show up.
Meanwhile, we're entering a period of uncertainty, as we wait to get an appointment
with Dr. Davis and await the results of the Dr's conference on Monday. We'll keep this
Thursday, October 11, 2001
Update on the latest MRI, taken Sep 25th: there is no change in
the tumor since last time. Dr. Jakacki said that Merel has to
eat healthier foods (less fat, less sugar), because people that
have (or have had) brain tumors gain weight easily, and it
is harder for them to lose it too.
Some cheerleading pictures, as promised:
Friday, September 7, 2001
More than six months since the last update, my apologies for the delay. Part of
the reason was that we suffered an outage, somebody stole my credit card number
that pays for the web hosting
service, I had to have it changed and the provider disabled my account when the
billing stopped working. Luckily, no harm was done and we're back online.
To start with the main news, Merel's health is unchanged; her tumor (last MRI was
in May) has not grown, just moved around a little, and her eyesight is the same
as well. We went to see Dr. Davis (eye doctor) yesterday and he was very happy
with her near-perfect sight in the left eye. The right eye remains near-blind.
All of this is essentially very good news. Barring miracles,
the tumor is not going to shrink and her eyesight is not going to get better.
Dr. Romberger (our pediatrician) reminded Merel that it is very important that
she wear her glasses at all times; mainly for protection, if you have only one
eye it becomes crucial to make sure that you protect it the best you can.
I also want to bring you up to date on other things that have happened in the
last six months, in reverse chronological order. It is early September and the
kids are back in school. Merel is in fourth grade and Ellie in second. Our
lives have become much busier. There is more homework (especially for Merel),
and more activities. Merel has seen one of her dreams come true to become a
cheerleader (pictures soon!), and both girls are still taking karate lessons
twice a week. Recently they were promoted to Orange Belt with 1 Stripe!
The kids enjoyed a wonderful summer. Like last year, we hired a babysitter
(Melissa), who took them to the pool nearly every day (got paid for it too!),
and took them to lots of other fun places. The highlight of our summer was
our two-week visit to Holland, where we caught up with family and friends,
visited lots of tourist attractions and had an altogether great time. This
time we even enjoyed some sunshine!
In the spring we welcomed a new member to our family. Bubbles "buffalo-butt"
the cat joins our neurotic female Kitty. Like children, some would say,
two felines cause more than twice the trouble that one cat inflicts. Lazy
bums that they are, they sleep the entire day, only to wake up early evening,
chasing each other through the house and wreaking other kinds of havoc. But
they're part of the family and it wouldn't be the same without them.
Wednesday, February 28, 2001
Another month went by and here is an update on what has been happening. Merel
had an MRI on February 15th, and there was a short, but intense, period of anxiety after it
was discovered that the cyst in the back of her head had moved around, to a spot
on top of her tumor (which itself had stayed the same size). Dr. Jakacki
conferred with Dr. Adehlson and called the next day to tell us that the cyst
was (still) filled with clear liquid. Had it been red, Merel would have had
to go in for emergency surgery. But since it was still clear liquid, we had
"nothing to worry about" (easy for them to say). Then the next day, Dr. Jakacki's
prediction that the cyst would eventually break came true. Merel was in the
shower and broke out in a panic as she discovered greenish gooey liquid oozing out
of her ears. Of course Dianne called the doc immediately and they confirmed that
yes indeed, the cyst had finally burst. Because of these constant changes inside
her head, we are supposed to see the eye doctor more frequently. And finally,
Merel has been gaining weight too rapidly, and is supposed to slow down a little.
Apparently, kids with brain tumors are more likely than other kids to gain weight
On the fun side, the girls have both been in a karate class since the middle of
January, and are going for their first test tomorrow. If they pass, they'll get
their yellow belt.
Sunday, January 21, 2001
No major health updates, but we do have an administrative notice. Many of you
have noticed that the guest book was full, and this problem has been fixed.
You can add messages as before. The "View Guest Book" button will take you
to a newly created (as of today) guest book. You can see the first one hundred
entries by clicking the "Old Guest Book" button.
Wednesday, November 29, 2000
After a long silence, which many of you have noticed, finally an update. There is
lots to catch up on. First the medical news, which is all good. Merel had an MRI
two weeks ago, and the tumor, as well as the cyst, are unchanged. This is good
news, the most likely alternative would be for some growth to occur. Dr. Jakacki
reminded us that they are more or less expecting that re-growth will start in
about two or three years. By that time, radiation will be much less dangerous
than it is now. On Saturday the 18th, Merel had an appointment with Dr. Davis,
our eye doctor. The same story, there are no changes. The right eye continues
to have very poor vision (20/400), the left eye is 20/25. Looking towards the
future, she will probably succeed in learning to drive with some difficulty,
and may not be able to drive at night.
Now for some fun activities during the last few months, in reverse chronological
order. Of course, Merel had a birthday, she turned 9 on November 13th! To
celebrate, we had a sleepover party with about a dozen or so little girls.
Unfortunately, I wasn't around to enjoy the festivities, I hear it was a
blast. So there are no pictures. Instead, here is the view of the Golden
Gate Bridge I had while approaching San Francisco that same week:
The birthday party was actually the weekend following the 13th, and this was
because we used the weekend of her birthday to make a visit to Washington DC,
"our" nation's capital, just under four hours driving away from home. Many
of you have undoubtbedly visited Washington before, and if you haven't, you
will have to, some day. You could literally spend weeks visiting different
attractions, all of them unique and interesting. We had only two days, and
two little girls, so we picked just a few activities. Dianne was battling
pneumonia and would normally not have travelled, but the trip was planned
months ahead (a personal first for me, I should add), so we took it slowly.
We drove into DC on Friday afternoon, checked into our two-bedroom suite
(regularly $259/night, but free because I used hotel reward points), and
I took the girls via Metro to Union Station where we admired the building
and bought a few souvenirs. On Saturday, we took a Tourmobile bus tour
of the city. On the way walking from a Metro stop to the starting point at
Arlington Cemetery, who would drive right by us but Bill Clinton himself!
Mr. Prez was on his way to lay a wreath at the grave of the Unknown
Soldier (it was Veteran's Day in the US). We next fell for the biggest
tourist trap in the city, the White House tour. I didn't remember it
being sort of lame from many years ago, but it pretty much was. After
standing in line for over an hour, they show you through 11 of more than
100 rooms, all far away from where the real action is. Don't take this
tour, unless you're desperate to be able to say you were in the White
House, or if you can get the Congressional Tour (not given on Veterdan's Day).
We got back on the tourbus and rode it all the way back to Arlington
Cemetery, where both JFK and RFK are buried, as well as many thousands
of servicemen (and women).
Mom and daughter playing cards at the hotel:
After the White House tour. The Washington Monument is in the back.
And one of my personal favorite pictures:
At night, we celebrated Dianne and Merel's birthdays with a dinner
at the Macaroni Grill in Reston (VA), one of the main reasons for us to go to the
DC area, since we love that restaurant (Dianne found out about it
in Florida) and we don't have any at home.
There was a one hour wait for tables, but it was well worth it, even
the girls had to agree.
On Sunday, we visited the number one coolest museum I've ever been to,
the National Air and Space museum. It was under construction so we
couldn't touch the moonrock, but there was plenty to see, even though
we had to limit our time.
October 31 was Halloween. Ellie was dressed up as a witch (complete
with broom), and Merel was a princess.
Two weeks before Halloween we made a short weekend trip to Seaworld of
Ohio, which stays open until the end of October. This is the best time
to go, there are hardly any lines, all the major shows are open and
best of all, the temperature is mild. It was a gorgeous day, cool
with bright sunshine.
Earlier in September, a visit to Point State Park in Pittsburgh: