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In June of 1999, at age 7, Merel Duursma became a cancer patient when she was diagnosed with a visual pathway tumor (a brain tumor).

This page is a chronicle of Merel's fight with her life threatening illness.

This page is also a place where you can become involved by leaving messages, see what others wrote, etc. Please check often for updates, and sign or view the guest book!

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 then.
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 weren't home.

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 (angelone1991@hotmail.com), 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 cyst.

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 page updated.

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 too quickly.

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: