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Previous News from Merel's Virtual Scrapbook

Sunday, September 3, 2000

The surgery went well; Merel came home Friday night around 8:30pm, after spending much of the day (waiting) in the hospital. The first part, removing the port, took about an hour; when they discovered bacteria around the port site, they spend another three hours cleaning out the area, checking the lungs for infection, and administering two bags of antibiotica as well as one bag of anti-inflammatory drugs. A few hours later, around 6 pm, she woke up, not feeling too well. She filled up ten puke trays, while insisting that she had been awake the whole day! But the end result was good. Dianne was able to take Merel home around 8:30 and by late evening, she was alert and in a good mood. She has a bandage on her chest and is not allowed to get wet for five days. Ellie loves it because she gets to wash Merel's hair:

And here is the Medi-Port which had been implanted in Merel's chest for over a year:

Friday, September 1, 2000

Today at 10:00 AM, Merel goes into surgery to have her port removed. Check here later for updates.

Tuesday, August 22, 2000

The results of the MRI are in and the news is mixed. Dr. Jakacki called to report that the tumor was stable, but that in the back of Merel's head, at the base of the brain, a cyst had formed. Actually it had always been there, but had until now appeared as a tiny speck. This time, there was significant growth. After conferring with Drs. Adelson and Kondziolka, she called again and said the cyst was filled with spinal fluid, which makes it relatively harmless - they "come and go", and they're going to monitor the situation, which means nothing will happen until November when she'll have the next MRI. The only risk apparently is if the outside of the cyst is lined with cancerous cells, which we don't know at this point.

We're still digesting all this news. The cyst's sudden growth, dismissed by the doctors as probably harmless, raises lots of questions that we need to clarify. Stay tuned.


Monday, August 21, 2000

Merel and I spent most of the day at Children's Hospital where we had two appointments. First we met with Dr. Jakacki and Cindy, who gave Merel a checkup. They checked out her sore throat (we had seen Dr. Romberger about it on Saturday), and it looked ok, a little red. Dr. Jakacki was very happy to see Merel look so well, and to hear about her improved vision. She said that from now on we would just do MRI's once every four months, with eye doctor appointments in between. If there was any sign of growth in the tumor, she reminded us that we would then have to start radiation. She seemed very optimistic about being able to keep side effects to a minimum, due to the small size of the tumor and the technology to hit it with a very tight beam. Merel asked her if she would have to write everything down in school when she was learning things, but the doctor said she didn't think there would be much risk to her memory function if that should happen. This was good to hear, because we are still very scared of radiation, which we know to be the only option should growth reoccur.

The MRI was next, and Merel wasn't too thrilled with the idea, but as usual the anticipation was worse than the actual event. The endless waiting didn't make it better, at one point causing her to cry in my arms wondering what she had done to deserve this. I assured her best as I could, that she had done nothing to deserve this, and I think she believes that, but - she still hates the needle (they have to inject her with dye), but when she's actually inside the tunnel, she's relaxed and cooperative. We will hear the results in a few days.

Big day for Ellie - time to get rid of that long hair (and note the glasses!):


Wednesday, August 9, 2000

It's summer and time flies! Before it's all over again, an update on the situation. Health-wise, things are going well. Merel looks great, eats well and weighs 74 lbs (33 kg in the rest of the world), and is 4ft 3in tall (128 cm). (Ellen weighs the same and is two inches shorter). We will know more in two weeks; on Monday August 21st, Merel has her next MRI. That Friday, she is scheduled for surgery to have her port removed. All just in time for back to school! We are making a fun week out of it otherwise. On Tuesday we'll be at Kennywood (Dianne's company picnic), and on Wednesday, we'll have our Make-A-Wish "wrap-up" bowling party. Ellie, Courtney, Allison, Maria, Rachel, Shelbi (who also has a birthday party this Saturday) and Kaitelin are all invited.

Of course, despite the relative calm, Merel is far from "cured", and continues to experience side effects, such as leg cramps, headaches and sleeplessness, and the danger is far from gone - but I guess we are officially in "recession". This may also qualify us for a repeat visit to Camp Sunshine, which is the last week of September. We're on the waiting list and are keeping that week clear on our schedules, since notice may be very short.

The girls continue to enjoy their summer. With Leah as their full-time babysitter, there's something new to do every day. Of course, lots of days are spent at the pool. They've also visited the Zoo, the Children's Museum, the Carnegie Science Center, and often go to the playground. In June, they went to Camp Courage, which is this year's version of what was called Camp Adventure last year. Ellie was old enough to go this time, she turned six, with a party at the pool, on July 9th.

The girls always love to hear from their Camp Sunshine friends. Sarah has sent several post cards, and Katie sent a picture, which the girls had trouble recognizing! They couldn't believe how people can change in a year. Josh is in Scotland, and we're waiting to hear from him, whether he learned to play golf the right way!

The absolute biggest event of the summer will be our trip to the Britney Spears concert on September 15th. Nothing can top that! We can't wait to see Britney. Somehow Merel just doesn't believe me ("Stop it, Dad!") when I tell her that I'm just as excited as she is!

Here are some pictures taken over the last month or so:

Thursday, June 15, 2000

Another big event in Merel's life. This past Sunday (June 11th), Merel was a speaker at the AIDS Walk 2000 Pittsburgh, en event which drew around 3000 participants. Merel went on stage and read her story about "Uncle" Bobby, our friend and her godfather, who died on Christmas Eve 1998. It was a moving experience, and not just for her parents either. KDKA-TV had about five seconds of her on the 11-o'clock evening news, and the next morning at 9 am they showed her entire speech! Ellie went on stage too, to hold her nervous big sister's hand. Before it was her turn, Merel asked Dianne's friend Audrey how many people there were on the grass. "Oh, about fifty", Audrey lied. When Merel was done, she almost stormed off the stage and told Audrey: "There were more than fifty people there, you lied! That's a sin and you'll have to go to confession!"

Here are some pictures from the event:

Nervously waiting her turn:

The interview after the speech:

Taking a rest:

In other news, both Merel and Ellen now love to jump off the diving board:

And finally, here are pictures the little darlings took of each other with their new best friend Leah:

Wednesday, June 7, 2000

More good progress! This past Saturday Merel had an eye doctor appointment with Dr. Davis, and things went really well. Merel had been saying that her eyesight has been getting better, and the doctor, after examining her, was happy to agree. He was also excited to see how healthy Merel looks, having grown back hair, gained weight and gotten her color back. He only sees her once every three months so it was good to hear that it is so obvious that she looks much better. Merel was actually able to see the big "E" at the top of the chart with her bad eye, something she hadn't been able to do. Next is a visual field test at Mercy hospital. The last time Merel went for one of those she was really sick from chemo so those results really were not to be trusted.

Summer is almost here, and the schools are out. Our babysitter, Leah Davidson, started this week. The girls love her! Let's just hope Leah doesn't get tired of playing hide and seek every day.

Merel and Ellen will both go to Camp Adventure in Wexford later this month. This is good news because for a while it looked like they weren't going to let siblings come, which didn't please Ellen too much. Merel went to this camp for cancer kids last year and liked it a lot, and Ellen has been looking forward to it all year.


Monday, May 15, 2000

Thursday may have been the last treatment, but its effects are lingering on. Merel has been very sick off and on the whole weekend, and is staying home from school today, complaining of stomach pains. With Merel being sick and Dianne recovering from carpal tunnel surgery it's a good thing I'm at home this week.

Between Thursday and today Merel has probably vomited some 15 to 20 times. Yesterday was Mother's Day and we had tickets to the Pirates game through the Make-A-Wish foundation. The festivities included lunch, Buffo the clown, a band, and player autographs. Miraculously, Merel made it through this event, although she didn't eat her hot dog which was a pretty sure sign that she wasn't feeling well. Here are some pictures from yesterday.


Thursday, May 11, 2000

Great news: today was the last chemo treatment! This is a change in plans, since we were supposed to have one more. Dr. Jakacki said this afternoon that, at a full twelve months, Merel has definitely had enough treatments. She added that the more modern trend (she mentioned San Francisco) is towards shorter regimens such as eight or nine months. Again she was happy to see Merel look well and healthy, with a current weight of 68 lbs (31 kg), and a very healthy appetite. Merel even claimed that her vision is getting better. We'll defer to the eye doctor's opinion on that one, as Merel sometimes tends to see these things through rose colored glasses, so to speak.

This was also my first chance to take Merel to the clinic for chemo treatment as Dianne has always done it so far. The few times that I've been home she has always wanted to go with Mom, so I was glad that I finally got the chance to live through that experience with her. The other neat thing about that was that I got to put my new digital camera to use (click on the pictures to see bigger versions).

Of course the other big recent event in Merel's life was her first Holy Communion which took place May 6th. I'll limit my commentary to saying that this was a very big thing to her, and that everything went really well. And here are some pictures of the event as well.


Monday, May 1, 2000

Blood test again today, results are "good". Just like last week, we did not get a printout so we don't have any numbers. Merel continues to feel good and look good, with occasional outbreaks of headaches, leg cramps and bruises. She is very nervous this week because Sunday is her First Holy Communion, the first major Catholic ritual of her life (that she is aware of anyway). I'm proud to say that we are very understanding of our religious differences within the family. Merel had this figured out a few years ago when she came home from school one day and announced, "Dad, Jesus died on the cross for you, did you know that?"

Monday, April 17, 2000

Merel had blood work done today, a little prick in the finger. She wasn't too happy with the fact that it hurt a little more than we had led her to believe, but the results were pretty good. Platelets dropped from 300,000 (healthy) to 188,000 and white blood cells dropped to 5,000. These numbers are both somewhat lower than ideal, but still within normal range which is very good considering the onslaught on her body she suffered just one week ago.

Merel has been getting lots of email from her Camp Sunshine friends, as well as from Henriette in Holland, in rseponse to last week's good news. Holly sent some pictures of her baby Earnen and Ono aka Linda sent cards and Hallmark coloring contests. And from Lenie we got a pretty handmade BETERSCHAP sign. (By the way Lenie, it's "hugs", not "hucks", haha)!


Monday, April 10, 2000

Great news today! Dr. Jakacki, with a smile from ear to ear, announced that today's MRI shows that the tumor is starting to disintegrate. The way she described it to Dianne is that if the tumor is a strawberry, then imagine all the seeds being holes, which allow fluid to be drained from inside. This is very good progress, even though it does not necessarily mean that it will continue along that path. Dr. Jakacki said that if there are no more changes (for the worse) to the tumor, Merel will probably never need radiation, one of our worst fears. They decided that she needs just two more treatments, one month apart each. Today's treatment was a 4x dose of carboplatin. They're no longer giving vincristine. Also, Ellie went with them to the hospital (no school today) and was quite the little helper all day long. Very well behaved too. Merel will need a weekly finger prick to test her blood counts, all of which were very good today, but tend to deteriorate after chemo.

Thursday, April 5, 2000

A few weeks back "up north", and Florida's sunny skies seem far away indeed. Life is back to normal, with Merel continuing her break from chemo, which will be over on Monday. Some of Merel's friends have come to visit recently. Last Sunday, we were supposed to go swimming at the High school. Merel's friend Courtney and Ellie's little friend Kelsey were both going to come with us, but it turned out we had missed the announcement that March was the last month for swimming. There I was with four very disappointed little girls on a rainy Sunday afternoon! Plan B was a trip downtown to ride the subway and then up the incline to Mt Washington, which they all enjoyed. Got some strange looks and questions at the subway station from a couple of old ladies. "You have your hands full." "Are these four all yours?"

The week before, Merel's friend Shelbi came over to play for an entire Sunday afternoon. When Shelbi's mom came to pick her up, they took Merel to their house where they continued playing Barbies, or whatever little girls play.

Merel has been doing really well, she looks very healthy, her hair is growing and she eats a lot too. The other day I lost a one dollar bet with her because she ate a salad and two slices of pizza at Eat and Park (well, it was more like a reward than a bet, of course). Her stamina is good and her eyesight (which hasn't been checked in a while) seems good too, she said she actually noticed the 3-D effects at the Universal Studios movies, which means she must have at least some sight in her "blind" eye. There are always sudden side effects, such as bleeding gums a few days ago, or leg pains when going for a walk.

The looming end of time off from chemo is not doing too much for her good spirits, and she has been really worried this whole week. Monday is MRI and chemo day. Oh joy.

Saturday, March 18, 2000

Reporting live from the Orlando airport, we're asking the returning Duursma family what they thought of our vacation.

Merel: "I thought it was really fun. I especially liked the parade at Magic Kingdom, the safari at Animal Kingdom, and the Terminator ride at Universal Studios, as well as Ellen's Energy Adventure. At the Village, I liked the arts and crafts we did last night, and the arcade games. I also liked swimming at the pool, which was like a water park with the different kind of sprinklers, and I also liked the Pirate show. I definitely think our vacation was too short and I would love to come back some day."

Ellen: "My favorite parts were the Merry Go Round at the Village, the Small World Parade at Magic Kingdom, the fireworks, the Safari ride, the Ellen's Energy Adventure at Epcot. I definitely did not like the Jaws ride at Universal Studios, it was very scary and I cried, Daddy had to hold me. I loved it when I got my hair wrapped at Universal Studios. I loved the Jetson's ride too. We met Disney characters, I liked Chip N Dale and Tigger."

Dianne: "I liked the Safari ride, especially the elephants, the free ice cream shop at the Village, the Magic Kingdom, the Parade, the Small World. I liked Ellen's Energy adventure, but I did not like the Jetson's ride."

Ron: "This place was really cool. I finally got to meet my life long friend, Donald Duck, and went on some really nifty rides. The Jaws ride at Universal was neat, the girls were really scared, which was both sad and cute at the same time. The 3D movies were a blast, and I ate way too much ice cream all week long. Too bad we got to see only a little bit of each park, we'll have to come back in a few years, I'll miss my friends Donald and Mickey and Minnie and Chip and Dale and Tigger and everyone else. And of course the whining kids and long lines everywhere!"

Thursday, March 16, 2000

Epcot Center is living proof that you can turn any exhibit into a crowd pleaser by following a simple formula; organize it in the form of a ride, add lots of audio-visual wizardry and voila, people of all ages will line up around the block for what might otherwise be just a dull and forgettable presentation. Not that the subject matter at Epcot Center isn't worth seeing, on the contrary, and it goes to Disney's credit that they are able to turn it into a spectacle that anyone can enjoy. The most notable rides we did were Spaceship Earth (where AT&T treated us especially nice), Honey I Shrunk The Audience (great 3-D effects!), and Ellen's Energy Adventure featuring Ellen Degeneres in a Jeopardy game. I wonder how many movies Alex Trebek and his game show appear in. We did some shopping at Mouse Gear, one of the coolest gift shops we've seen so far.

In the morning at the Village and throughout the day at Epcot, we met lots more Disney characters (Ellie really likes Chip), and the kids' moods continued to go through many ups and downs, but on the whole they are having lots of fun.

Tonight we had reservations at the Pirate's Dinner Show, the first major non-Disney event we attended. As in any area with major attractions, there are lots of "side shows" feeding off the tourist population, some good and some not so good, but this show was quite a spectacle and we all had a great time. Tomorrow we'll sleep in a bit and spend the last day at Universal Studios where we also have dinner coupons for the Hard Rock Cafe.

Wednesday, March 15, 2000

Another beautiful day filled with adventures; as planned, we hit the Animal Kingdom park, which is four times the size of the Magic Kingdom if you can believe that. The parking lots didn't seem all that filled, but you'd never know by the size of the crowds. I shudder at the thought of what this place would look like if it really filled up! Due to our status as a Wish family, we are able to bypass most of the lines, and today we got great seats at the Lion King and the Tarzan shows, both fantastic spectacles which the girls really enjoyed. Our big ride of the day was the Kilimanjaroo Safari, a great combination of animal watching, make-believe and fun on wheels in a safari vehicle that often had to work its way through a foot of mud and water.

Tonight was Parents Night Out, which allowed us to have a (free) dinner at a nearby restuarant without the kids, and they enjoyed their own set of activities with young adult volunteers. When we came back to pick them up at 9, the volunteers told us how much fun they had meeting our girls, and four of them signed their new Disney autograph books, exchanging phone numbers, email addresses and big hugs.

The girls also got to meet some of the characters today. Chip, Dale, Tigger, Pluto and Donald were some of the creatures hugging and posing with Merel and Ellen. My own day was made when I got to meet Donald Duck, my longtime favorite.

Epcot Center is next.

Tuesday, March 14, 2000

This is already starting to shape up as one of these vacations that will leave you more tired than you were at the beginning. Things started with breakfast in the Gingerbread House, an adorable little building where breakfast and dinner is served daily. All the chairs are child size, which forces you to make you fit into their world for a change. The ceilings are decorated with hundreds of donated dolls, and food is served by the ever present army of volunteers. The Give Kids The World Village has two thousand volunteers and seventy paid staff members.

After breakfast it was on to the Magic Kingdom for our first full day of visiting theme parks. Even though none of us had ever been here, you think you know what to expect after having read and heard so much about it, but there are always a few surprises, such as how long it takes to get inside. First get into the parking lot, wait for the tram to get you to what seems like the park entrance but is in fact just another boarding area for either a ferry or a monorail to get to the real entrance to Main Street USA. We took in the sights and sounds for a while and headed for our first stop, Frontierland. Merel took one look at the Thunder Mountain ride and decided she didn't want to go on there, so we tried the raft to Tom Sawyer Island where Merel got scared in the haunted cave while Ellie loved it. After lunch, which took forever to get, I took the girls to Splash Mountain, which was a huge success, despite the usual disagreements between them ("no fair, you got wetter than I did!"). We went on to the It's a Small World ride that all four of us enjoyed. Seeing all the groups of characters in both these rides really makes for a unique experience.

The Parade down Main Street was next, and the girls actually got the chance to dance with some of the characters from the Mermaid story at the beginning of the parade. As with every attraction so far, the crowds are overwhelming, as is the entire experience at Disney. In some cases our 'Special Assistance Pass' gives us access to the front of the line (or close), but it doesn't help when you need a spot to watch the parade, or when you're in a line twenty deep to order some lunch.

We were all pretty tired after the parade, Merel complained of leg pain (probably true), and Ellie was, well who knows, but she said she couldn't walk any more. We decided to go back to our villa for a while (where we found several presents for the girls), so the girls could swim a little, then have dinner and ice cream, and go back to the Magic Kingdom to watch the fireworks behind Cinderella Castle. This worked out pretty well and everyone says they had a great day, and everyone's feet hurt. Animal Kingdom is next.

Monday, March 13, 2000

Today started very early, with some of us getting up before 5:00 AM to be ready for the limo which picked us up at 6. It was a nice touch, arranged by our Make A Wish people John and Erika, whom we were supposed to meet at the airport, but for some still unknown reason they didn't show up. No big deal, we left without saying goodbye for an 8:00 flight to Orlando, where everything was much different than at home; warm, bright, sunny, green and a landscape dotted with palm trees. Just about perfect weather, high 70's without any humidity. We were met at the airport by Dolores of the local Make A Wish society who helped us find our way around the airport and walked us to our rental car, a big white Nissan SUV which the girls think is just too cool. A short trip through palm tree lined strip malls later we arrived at Give Kids The World, the resort dedicated to critically ill children. We were given a very warm welcome and led to our villa, a single floor bungalow with everything we need, including large living, sleeping and bathroom areas. The kids were ooh-ing and aah-ing all the way. At the same time, we were pretty tired, having slept only a few hours before a travel day, so we didn't embark on any major ventures today. Instead we sampled some of the free ice cream (available all day long) and I took the girls to the pool, something they'd be happy doing each and every day, Disney World or not. Dinner was served by the pool. The food leaves some room for improvement, but who knows, the week is young. After dinner I attended Orientation, where they explained more of the week's activities and handed out free passes to the theme parks. After we all catch up on sleep, we'll most likely head to Magic Kingdom for the day.

Sunday, March 12, 2000

One day till our trip to Disney World in Orlando, Florida. The girls are very excited! We'll keep this site updated with our adventures during the week.

Monday, March 6, 2000

Quick update: last week's MRI never happened, they postponed it after Merel had contracted strep throat on the Saturday before the MRI was supposed to happen. That infection almost put her into the hospital, since it looked for a while like it might be mono. She had a fever which would pose a risk to her port, but in the end they decided on an antibiotics treatment which seems to have helped. Ellie had a major ear infection and the girls are both going back for a followup doctor's appointment on Thursday the 9th.

You might have heard of a multiple shooting near Pittsburgh, this happened last Wednesday, about two miles from our home. The scary part was that the gunman, after shooting five people (three of whom died), fled into the building where Dianne works, where he hid for two hours until police talked him into surrendering. The 4th floor where Dianne works was relatively safe since they were able to lock it up, but it was scary nonetheless. Check here for a picture of the McDonalds; the PATF building is the dark brown building behind the far end of the restaurant.

Wednesday, February 23, 2000

Good news today, after a search of just two days we have found our nanny for the summer. Leah Davidson who is currently an intern at the Pittsburgh AIDS Task Force where Dianne works, says this job is tailor made for her! The girls already know her well, and they get along great ("when does she start?" asked Ellie right away), so we are very happy that Leah is going to help us out over the summer.

Monday, February 21, 2000

Last week's hospital visit illustrated how badly Merel is in need of a break from chemo; several of her counts were off, with platelets at 14,000 instead of 100,000 as required for chemo, and kidneys continuing to shows signs of being too stressed. Based on those factors, they decided to just give her fluids and anti-nausea drugs but no chemo. Thus, Merel started her chemo break one week early. She now has until April 13th to recover, at which point they will switch to monthly doses. Of course she will continue to have MRI's, the next one is a week from today (Feb 28th).

We are also happy to report that Merel's hair has been growing back enough that she is now happy about going outside without a bandanna. Dianne uses gel and mousse to "spike it up", and it actually looks really cool.

By the way, if you are looking for a summer babysitting job, we've got it!

Thursday, February 10, 2000

It is becoming more and more apparent that the chemotherapy is taking a heavy toll on Merel, both physically as well as emotionally. Today was another incomplete session. The vincristine could not be given because her kidneys are approaching the danger zone where they could fail. The rate at which blood flows through them should be around 0.5 (don't know the unit), and it was 0.9 today. If it is higher next week, like for instance 0.92, there will be no chemo at all next week (over 1.0 would indicate kidney shutdown). To counter this effect she received some drugs today, as well as two bags of fluid (one of which she typically pukes out), and the normal dose of carboplatin. The emotional breakdowns typically occur at the doctor's office where Merel was very moody today, showing signs of anger even with Dr. Jakacki whom she normally likes. I don't really know how you could blame her either. We've grown used to it, and at home, we tolerate a larger amount of moodiness from her than we normally would, up to a certain point when we gently remind her that "if you don't have anything nice to say, maybe you shouldn't say anything at all".

After next week's possibly very long visit, there will be a long break, till April 13th. Merel is absolutely elated about the break and it should do her a lot of good, physically as well as emotionally. There's an MRI scheduled in between on Feb 28th. Merel, by the way, is one of the few children they know that does not need to be sedated for an MRI, she's very comfortable with it (says it gives her a lot of time to think). If you've ever had an MRI, you'll know how surprising that is. I've had one and I found it terrifying!

Switching topics to Touching Stories. One of Dianne's friends and coworkers, Dave Tucci, has a fifteen year old daughter Olivia who, upon hearing Merel's story, decided that she wanted to cut off her long hair and donate it to have it made into a wig for Merel. Her hairdresser friend told her she needed 18 inches and unfortunately, she has only ten to spare at the moment. The hairdresser then donated a wig herself. Merel tried it on and, ever so self-conscious, didn't like it; after our assurances that it looked really cute, she finally decided that it scratched her head and she couldn't wear it. Dianne has since given Dave a picture of Merel from before she lost her hair and they're going to try and come up with a wig that would match her former do.

I've mostly fallen behind on mentioning cards and letters that Merel keeps getting. We get stuff constantly and all of it is much appreciated even if you don't get a personal thank you or a note here. Recently, cards came from (Aunt) Clare as well as Sarah Campbell who sent a whole bunch of stuff too. Thanks to everyone who I might now have mentioned as well.

Thursday, February 3, 2000

Today was a very important day; in addition to the regular chemo treatment as well as antibiotics to treat her foot infection, Merel had an MRI this morning, which was done to determine whether any changes in treatment were necessary. The results were available immediately, and they show no growth since last time, just some change in shape. Compared to last time, when there was some growth, this is progress, although of course not as much as we would like. Dr. Jakacki had invited a colleague from St. Jude's Hospital in Memphis, Tennessee (Dr. Juggar - I'm sure I'm spelling it wrong) to help her determine the next step. The world renowned Memphis hospital specializes in radiation treatments, among other things. They told Dianne that sooner or later, Merel will almost certainly need radiation, and St. Jude's would be the place to do it. We would pretty much have to move to Memphis for six weeks, and Children's Hospital would pay for it. They are able to administer radiation in a very narrow beam directed at the tumor. The most common side effect is short term memory loss. Further loss of vision is also possible. Dianne told them that we are very worried about the side effects of radiation and will want to avoid it if at all possible. Of course the doctors understand this, and their goal is to delay radiation until age 11, when most of the brain functions have fully developed. Taking all this into consideration, Dr. Jakacki recommended a change to the chemo protocol. Merel would have two more regular weekly visits and then go to a once a month schedule, for another four to six months. The main reason for going to a monthly schedule is that her body is wearing down from the weekly attacks; her kidneys are showing signs of dehydration due to the frequent vomiting. She needs more time to build up strength, physical and emotional, between treatments.

Dianne asked them again what their long term prognosis is, and they again said that based on what they know now, there is a 60% chance of survival past age 30. Tumors of the optical pathway can be extremely dangerous and if any more growth occurs they will have no choice but to begin radiation. Dr. Jakacki had lots of nice things to say about Merel; she can't recall having met another eight year old that she can have a mature conversation with, and she also said that Merel is very focused on her goals. Merel wants to be a doctor (we had to get her a doctor kit for Career Day at school), and Dr. Jakacki said she is convinced that Merel will pursue that goal and make it happen. (By the way, Merel got her report card today, all A's, despite missing at least one day of school every week).

About the chemo treatments, our social worker, Paul Palinko, noted that these will probably have lasting psychological side effects. because of the trauma that they are inflicting now. Much of Merel's vomiting is a combination of being physically ill as well as mentally traumatized. Most of the time you would never notice, because Merel usually acts like any other eight-year old, having fun and being silly like there's nothing going on. At other times, she's moody and depressed, wondering why all this is happening to her.

Sunday, January 30, 2000

Small change in plans: this week's MRI has been moved from Friday (4 Feb) to Thursday (3 Feb), so they can do the chemo and the MRI all in one hospital visit. Merel felt better yesterday and today, and we haven't caught her scratching her hands or feet either.

On Friday, a package arrived from Stephen Guzzetti (Merel's cousin), his CCD class made a card for her and they sent a cute little stuffed monkey toy. Thanks Steve!

Today was the deadline for ordering Girl Scout Cookies. The response has been great, Merel sold a total of 73 boxes. Thanks everyone for ordering! The cookies will be available the second or third week of February.

Friday, January 28, 2000

Yesterday's chemo visit brought some good and bad news. On the plus side, the doctor said she was very happy with the eye doctor's report, and she thought that this might mean the tumor is responding well to the new treatments. If that is true then the bad news is minor in comparison: Merel has been scratching her feet and hands so much that some of her skin has gotten raw and this has caused an infection. This is apparently common among chemo patients, they had to tape some kids's feet because they wouldn't stop scratching them. To combat the infection, which has caused her counts to be much less healthy than they should be two weeks after a transfusion, they gave her a whole slew of antibiotics, which took about two hours to make it into her system. That was followed by the usual dose of carboplatin and half a dose of vincristine. Another piece of good news is that her weight is up to 60 pounds (27 kg), which is just about where it should be.

Next week's treatment will be a seven-hour marathon session where she'll receive another blood transfusion and the usual chemo treatments.

Today (Friday), Merel is staying home, she has been vomiting off and on since about 4:30 this morning. We're getting so used to it it hardly seems unusual any more, but obviously to the child this is very upsetting every time.

Ellen has been quite upset lately, complaining that Merel gets all the attention. She regularly says "you guys don't love me, you only love Merel", and she calls herself ugly. There is no simple fix for this. Our social worker says that he sees it all the time in cancer patient siblings and it could be worse, like if Ellen were a teenager, but even at her young age of five, we're worried about this. We both spend time with Ellen 1-on-1, and things seem better for a while until she has another attack of "nobody loves me".

Friday, January 21, 2000

We have two doctor's visits to catch up on. First, today's visit with the eye doctor (Dr. Davis). The outcome of that was that things are basically stable with Merel's vision, it did not get either better or worse. When told about the floating right eye, the doc said that that was to be expected, in fact he was surprised it hadn't happened sooner, and it's because her optic nerve has been compressed or "flattened". It can be corrected with laser surgery, but that will have to wait until well after chemo treatments are over.

There was no chemo this week, they called and said they wanted to wait a week to let Merel's body get used to the new blood, which she received a week ago, on the 13th. That day, she got a bag of blood, then a bag of platelets followed by another bag of blood, one and a half doses of carboplatin and finally a dose of vincristine.

From time to time Merel will have cramping in her side or stomach, one of the many side effects we have been told about. They can happen just about any time before or after chemo, even for up to a year or more after the last chemo treatment. And we're pretty much used to other side effects such as her bad moods and short tempers. The doctor also noticed that Merel is bruising a lot; whenever she bumps an arm or leg into something, it is more painful for her than usual, and she'll be black and blue for a while.

A reminder regarding Girl Scout Cookies: the last day to order is Jan 28. Make checks out to Troop 657.

On the calendar of religious events, we have Merel doing a reading in Church on Jan 30, and her first Holy Communion is scheduled for May 7th. Speaking of church, the "Ladies of Charity" are now bringing us a prepared dinner every Thursday evening. Our thanks to the volunteers who donate their time and money to prepare these meals!

Sunday, January 9, 2000

This past week's chemo treatment was incomplete again (only one of the drugs was given), due to low blood counts, in this case hemoglobin. As a result, Merel will need a blood transfusion this week. It's kind of scary to think that we consider such events more or less routine these days.

Merel's right eye has started to become more and more "lazy", it often does not follow along with the left eye. Dr. Jakacki believes that this can probably be corrected with surgery later because it is most likely just a weakened eye muscle that can be tightened surgically. Another option is that she might be able to do certain eye exercises to return strength to the under-used muscles. We'll find all this out from Dr. Davis at the next appointment on the 21st.

Monday, January 3, 2000

No major developments yet in the year 2000, but I should mention that Merel is in the Girl Scouts, and since it's January, that means it's time to buy Girl Scout Cookies! You can order them directly from Merel, follow these instructions.

Yesterday the girls and I took advantage of the warm weather when we went to the track at the high school. I had told Merel, who often runs a lap or so with me, that she shouldn't count on being able to get around the track too many times. I don't think she was going to even try until we ran into Margaret. Merel joined her for almost three quarter mile laps around the track, talking almost non-stop.

We also have a new eye doctor's appointment: January 21, 2000.

Friday, December 31, 1999

Yesterday's chemo session was complicated by the fact that Merel's platelets were down to a low 40,000, which meant that she couldn't have full dose of carboplatin. They gave her a bag of platelets and hope to resume the normal protocol next week. She did get the full (double) dosage of vincristine and as expected, the higher dosages are making her pretty sick. Yesterday she had a lot of back pain and they called in a tylenol with codeine prescription for her. Jim came by to watch the girls while Dianne went to get the medication. Today she's just lounging on the couch, not interested in eating anything. Not surprisingly, we are going to have a quiet New Year's celebration at home.

We leave you with Merel's quote of the year. To one of the nurses who is talking to her prior to sticking a needle to her, Merel says: "You might as well be quiet, because nothing you say is going to make this any better!"

Friday, December 24, 1999

Yesterday was chemo day, a four hour session, which is going to be normal now during Phase III. Other news is that some of the options I mentioned on Monday are not really viable. Dr. Jakacki told Dianne yesterday that there is no way they can operate on the tumor, adding that "if you find any surgeon that thinks he can, you should run away real fast", and also, that the gliadel patch won't work due to the location of the tumor. She added that Merel will have another MRI in six weeks, and if the tumor has grown again, they will stop chemo and start radiation, which is an option she always referred to as the last thing she wanted to do.

Wednesday, December 22, 1999

No major updates today, still waiting for the sonogram results which probably means they didn't find anything. Merel is now getting email from other Clarks fans, and Scott, their lead singer, gave us passes so we can up close when they perform downtown on New Years Eve; if it's not too cold, we might go. Scott's father sent email saying that if Merel wanted any autographed materials, he would make sure that she would get it. Margaret stopped by today, and it so happened that some of us were actually home. Ellie came downstairs where I was working and said, "You remember Margaret? Well, she is here." Margaret brought the girls an adorable little doll and we talked for a little while. Last but not least, I wanted to share this email from our friend Leo, for some comic relief:

Hi-

It doesn't matter if you have been naughty or nice. I just backed over Santa with my Jeep at the mall. I don't think that he is going to be able to make it on Saturday.

Oh, oh,........I better run. He just got up and is chasing me around Ross Park.

Get away from me you fat old man!

Boy he sure can run fast for a man who just got hit by a car! I guess he will be able to make it afterall.

Have a great Christmas.

Love and many, many, many, many, many, hugs and kisses.

Leo

Monday, December 20, 1999

Big day today, the second MRI since treatment has begun, and the news is not great. Dr. Jakacki called Dianne at work in the afternoon to tell her that the tumor had slightly grown in size (from a wrinkled raisin to a puffed raisin as she put it, although the tumor is a little bigger than a raisin). It has also moved around a bit, away from the optic nerves, toward the pituitary gland. This explains the fact that her vision has improved, something which they were 99.6% sure of would never happen, but it also explains some of the coordination problems she's been having lately, such as not being able to walk in a straight line. They also found some swelling in the brain, but this has happened before and they will treat it with anti-inflammatory drugs at the next chemo session.

The doctor called this change a setback, but was quick to explain that in the majority of cases, tumors do initially keep growing after chemotherapy first starts, and it may take several more MRI's before we see any kind of shrinkage. When pressed to quantify the seriousness of the new results, she said that on a scale of 1(bad) to 10(good), today ranks as a 5 or 6. As far as the treatment, no short-term changes are anticipated. We are now in the beginning of Phase III, which entails a serious step up in drug dosages from Phase II. Carboplatin was increased 50% and vincristine was doubled, and we were told to expect more severe side effects, including much pain and sickness. Probably just more of the same stuff we have already been through, just more often and more serious. There are other treatment options as well; for example, they could implant a 1x1 inch "gliadel patch", which would temporarily replace a section of skull and deliver a constant dosage of chemo drugs, until it can be taken out and the original section of skull can be put back. This might be less of an attack or her system as a whole. Another question is whether the tumor, now that it has partly moved away from the optic chiasm (the point where the optic nerves join), is still inoperable. So far we have Dr. Adehlson's opinion (neurologist) who feels that it is still inoperable. The charts have yet to be reviewed by Dr. Kondziolka (neurosurgeon), who might have a different view. The three doctors are getting together later this week (I think) to decide whether a change in treatment is appropriate at this time or perhaps down the line, but for now we should expect the current protocol to continue. Radiation was mentioned, but only in the sense that it is not currently an option.

The bottom line is of course that this news is not very good. We would have been happy with "no change", if she can maintain status quo for the rest of her life then she would be OK, since her eyesight is adequate, she would be able to drive a car, and as long as there are no other seriuous complications, who cares if you have a tumor in your head, to put it bluntly (I know, easy for me to say, it's not my head). But any growth is of course bad since it causes new complications and can be life threatening as well. One thing to keep in mind is that this is not the type of cancer that can spread throughout your body, so as long as you can keep the size and location of the tumor in check, things will be OK. We were more or less prepared for this news, with the latest developments in coordination problems etc. The doctor suggested that we don't tell Merel that her tumor has grown, since she will be very depressed about it, and she needs all the strength she can muster right now.

Also today, Merel had a sonogram taken of her internal organs, kidneys, liver, gall bladder, etc, since she has been complaining of a lot of stomach pains lately. This was a rare occasion where I had a chance to take Merel to the hospital. Having had countless sonograms already, this was old hat for her and she handled the whole situation with a blase kind of attitude. She also kept the technician pretty busy asking a never-ending stream of questions while she was trying to do her work. To Merel, the whole thing seemed about as routine as it did to the technician. No word on the results yet.

On the lighter side, our friends from Camp Sunshine sent the girls Christmas presents which arrived Saturday and Sunday (I wasn't aware of this but apparently UPS delivers on Sunday during the month of December). We got all kind of neat stuff, bracelets, candy and stuffed toys from Sarah, Katie and Josh. You guys are really great, with all the touching email and cards you send all the time, it is much appreciated, and if I forgot someone here, please don't be offended. Holly in Hawaii is also joining the search for really cool bandannas.

Saturday, December 11, 1999

We are nearing the end of a two week break, when phase III sets in on Wednesday. Dianne got the normal Thursday appointment moved to Wednesday so Merel could attend a Christmas party at school on Thursday and not be sick. The fact that Merel is not having chemo does not mean that problems are also on hold for two weeks. Basically, side effects can occur at any time, without much of a warning sign. Last week, Merel fell down the stairs at home, because her legs gave out suddenly. They said that this was probably a vincristine related cramp. Then yesterday, Merel had been at school for half an hour, didn't feel good, asked the teacher if she could go see the nurse, got up from her desk and collapsed on the floor. By the time they got Dianne on the phone, she was waking up in the nurse's office. She spent most of the rest of the day in Children's, where they found that her white blood cell count was dangerously low at 56. Normal healthy counts for adults are 4000 to 11000, but for chemo patients 2000 is more typical. She was tested and shown postive for strep throat (she had been up most of the night before complaining of a sore throat), placed on antibiotics, and received bags of blood and platelets. All of that helped make things much better and she was able to leave the hospital later on Friday, with the only restriction that she had to wear a surgical mask to prevent other infections.

And so we struggle on, never quite knowing what each day will bring. For the most part, Merel handles her fate quite well, sometimes seeming suprised at all the attention she's getting. At other times she seems lost and is unable to grasp the whole situation, like the day she asked Dianne if she would still have cancer when the chemotherapy ends in the summer, and if she would always have that brain tumor. Or on days like earlier this week when yet another layer of hair was on her pillow in the morning. There's not much hair left at all, I think this is the first time that she's looked like a typical cancer patient, about to lose all her hair which will probably happen over the next few months. We are looking for an orange bandanna, if anyone can find one, please let us know.

Over the last year, Ellie has gone through some changes as well that haven't always been pleasant. She's not usually the most cooperative child, and she's easily upset when anyone yells at her. Just this week, Dianne had a talk with the teacher about her, who confirmed the same observations, adding that she has to treat Ellie with kid gloves or she'll burst out crying in the middle of class. One day Mrs. Deet asked Ellie to sit up front so she could give her some extra attention, and started to chat with her about Christmas. When asked what she would want from Santa, Ellie said that all she wanted for Christmas was for her sister to be better. When I heard this story, the world around me stopped for a few moments.

If you're familiar at all with the rock and roll scene in Pittsburgh, you will have heard of the local band The Clarks, wildly popular here as well as in other places around the country. Merel listens to them a lot and went and signed their guest book. In turn, Scott Blasey of the Clarks went and signed Merel's page, our first "celebrity" entry!

We keep getting lots of stuff from people. Henriette sent a whole batch of "Sinterklaas" stuff, including stroopwafels and other Dutch goodies. Oma Duursma sent lots of "drop" (licorice), which the girls don't really care too much for, but Mom and Dad do :)

Just a reminder that Merel's next MRI is on December 21, of course an anxious moment. Even though we've been told that it would be quite normal for the tumor to remain the same size, I think that would be a disappointment. We are very much hoping to see some sign of shrinkage, which would indicate progress. On the flip side, should the tumor have grown, that would present a whole new set of questions that we'd rather not consider at this point.

Here are also some new pictures, taken at school a month ago:

November 28, 1999

We don't have any news today, other than to wish all of you a Happy Holiday Season! (As always, click on the picture to see a larger version).



Also (this just in), I wanted to share this email message with everyone, which I think is both touching and funny: (this is from Josh the "Backstreet Boy"):

How are things? How are my two little Backstreet Boy fans doing? I'm thinking of them all the time. I hope you had a good Thanksgiving. I was just wondering if you could give us some ideas of the girls list for Santa this year. We all want to get them something. I'm not quite sure you know how many people you touch. All of my friends at school who didn't even go to Camp Sunshine are asking everyday how the girls and everybody are doing. We all check the web page on a hourly basis wondering if there is going to be any updates. I hope to hear from you soon and I hope you have a wonderful holiday season. You're all in our prayers.
Love,
Josh :P

Friday, November 27, 1999

This week's chemo treatment was on Wednesday (Thursday being the U.S. Thanksgiving Holiday). Merel's constipation had gotten worse, and they had to pump her stomach as well as flush her bowels, which is probably more details than most of you care to hear about. Suffice it to say that this was a very unpleasant experience for her and that she now finally begins to understand how important it is to take her laxative daily. The doctor said that the vincristine has the effect of turning "cotton" into "steel". Otherwise, the treatment went quicker than usual because she only got carboplatin this week, and we're entering a two week "off" period. Vomiting continues, pretty much on a daily basis. We have a new anti-nausea drug called Promethazin, which can only be given before bedtime because it makes you very drowsy and/or dizzy.

Saturday, Nov 20, 1999

Had a scary day yesterday: around 8:45 am, the doctor's office called to tell Dianne that Merel's blood work from the day before showed that her kidneys were about to fail, and that they should come to the clinic immediately. Still sick from Thursday's treatment, Merel was in no mood to go back there again, and she made sure that everyone knew about it too. At the clinic, they were in a hurry to take her in and treat her right away; she ended up getting one bag of solution after which the kidneys acted normal again, but needless to say this was a very stressful day for all of us. You just never know which ailment will strike next, and the scary part is that a lot of the possible side effects are not readily apparent from what she can tell you, or from what you can see by looking at her. We would have no idea that her kidneys were about to fail if they hadn't caught it in the blood test.

Thursday, Nov 18, 1999

It is now a few days after Merel's 8th birthday, which we celebrated in Chicago. Thanks to everyone who sent birthday cards and other items. Our visit to Chicago was a lot of fun for the girls, the highlight of course being the American Girl Place on Friday, where we got Merel some birthday presents, mostly doll outfits, and Ellie didn't make out bad either. On Saturday, we visited the Shedd Aquarium, which we reached just in time. As soon as we got out of the car, Merel lost her breakfast. The same thing happened on Sunday morning when we went for a drive. But overall, the weekend was certainly a success.

Today there was less reason to celebrate. The third out of a series of four weekly chemo treatments, things didn't go too smoothly. The ear infection from last week hasn't gone away yet, and her tonsils were red and swollen. Fearing the onset of strep throat, which could contaminate the mediport through which the chemo drugs are given, they gave her a flu shot, which made her even more sick. Merel threw up once during the treatment, twice in the car on the way home, then in the driveway, and one final time in the house, as soon as she got inside. She now has pain everywhere, in her arms, legs, back and has a headache as well. In addition, she complained of blurred vision yesterday, but they attributed that to the Ativan (the anti-anxiety drug), and we should only worry (and call) if it still happens Saturday and/or Sunday. She's also being losing hair every day this week, which prompted her to lament that she wished it would all "just fall out already". On top of all that, she's extremely tired, often falling half asleep in the car on the way home from school.

On the bright side, she did gain another pound (up to 49 now), and a lot of the hard stools have are now gone from her bowels, so there's no immediate threat of complications there.

Thursday, Nov 11, 1999

Another chemo treatment today. As usual, a mix of good news and bad news. The good news is that Merel gained 2 pounds since last week, the doctor was very happy to see that, and is actually lowering the dosage of Megace to once a day, they want her to gain weight but apparently a little slower than this. Under good news I would also mention that Merel is handling the treatments a little better, she is no longer quite as upset as she has been in the past. Most of this is probably due to the anti-anxiety medication she is taking (Ativan).

This week's blood counts were all normal except for white blood cells which were slightly low due to an infection (see below). The doctor gave Dianne a sheet which explains the various Blood Counts:

On the downside, they took an X-ray and it showed that she is badly constipated, there is lots of "hard stuff" clumped up in her bowels. If this does not get any better by next week, she will go into the hospital, have an enema and/or surgery, which would be unnecessarily painful. To avoid all that, she just has to take her daily dose of the Children's Senokot, something which she really hates, but she heard the doctor say several times how important it is. Nonetheless, it took about fifteen minutes of footstomping, crying and giving me the dreaded "Look of Death" before she would take it.

In addition, she has developed an ear infection, for which they prescribed chewable tablets of Augmentin, a powerful antibiotic, and she had an allergic reaction to the chemo drugs today, which was treated on the spot with Benadryl.

Finally, just wanted to mention that Saturday the 13th is Merel's 8th birthday!! Our birthday present to her is a trip to Chicago, where we will visit the American Girl Store, and the Shedd Aquarium

Ok, one more note, Merel has received various letters and packages in the mail this week (including from Holland), and I haven't had the time yet to scan the pictures and add them to the Picture Gallery.

Saturday, Nov 6, 1999

Good news, for the most part: Merel came home from the clinic Friday afternoon and didn't have to be admitted to the hospital. It took four bags of fluid , for a total of 1500 ml, as well as one bag of blood and one bag of platelets, to get to the point where they were willing to let her go. At this point our instructions are to feed her lots of "fatty" foods so she gains weight, and to immediately call the doctor if she throws up, because it would likely be an indication that her kidneys were failing. She had apparently already come very close to that point. The rate at which blood flows through the kidneys is normally at 0.5 (I don't know the unit), but it was at 0.11 instead. It also didn't help that on Thursday, after taking her blood and testing it, they took the wrong computer printout (from three weeks ago instead of from Thursday). If that hadn't happened she would not have had chemotherapy on Thursday, but instead would have received the treatments she got on Friday.

This all happened after the vision field test at the Eye and Ear Institute. This was a baseline test, so you can't draw any conclusions from it, it's done so that you can test again later and then compare against the baseline. The test, and the car ride (Dianne took her) on the way over there were complicated by Merel throwing up about half a dozen times. Both Dianne and I now have a container in our car in case Merel gets sick. The good news is that she hasn't gotten sick since coming back. We also started her on the Megace medication which is supposed to boost her appetite.

In the morning before all this took place, the girls were lounging around on the couch watching TV, it was parent/teacher conference day so they were off from school. Merel asked Ellie: "can you please rub my feet, they hurt so much", and Ellie, other little mother hen, got up right away, said "Sure", went to get the lotion, and rubbed Merel's feet for about half an hour.

While Dianne took care of the doctor visits, I met with the teachers at the school. They were very happy about both their work. Ellie actually listens at school! And Merel continues to amaze everyone by being pretty much happy all the time. Sister Karen, the principal, has said to me how Merel is "a real lesson" to her because she confronts her illness so matter-of-factly and goes about her daily work as if nothing is wrong.

Thursday, Nov 4, 1999

Today was chemo day, after a two week break. We have started her on Ativan, which is a drug that is supposed to make her less anxious about her treatments. It's not clear whether it worked at all. She has indeed been less nervous about it the past few days, but her mood has been much better in general since about the time that we came back from Camp Sunshine. At the time of the actual treatment, she was just as upset as usual, according to Dianne. The other bad news is that Merel has lost another 6 pounds, when she was already 6 pounds under the average weight for her length and age. She's supposed to weigh about 58 pounds, but she dropped from 52 to 46 in three weeks, and they're worried that she's dehydrated as well. Apparently, the fact that her heartrate went up from 82 while sitting to 110 while standing, was another sign that she might be dehydrated and weak. Obviously a weak body does not handle the chemotherapy attack as well as a strong healthy body. They wanted to send Merel to the hospital, but Dianne got them to let her go home, she just has to drink lots and go back tomorrow to be checked again. If the doctor is not happy with what she is seeing then, Merel will have to stay in the hospital overnight while they administer liquids intravenously. In any case, she will have to gain some weight back, so we have a new drug (Murace) which is supposed to bring back her appetite, and she's going to drink whole milk, use butter, eat lots of hot dogs, ice cream, "anything she wants" as they said!

There was also some good news at the hospital. While she was there she had to give a urine sample, and as "luck" would have it, there was blood in it, just like there was this morning at home. This is good news because it may finally give them a chance to figure out what causes this bleeding.

The people from the Make A Wish Foundation stopped by again tonight, they wanted to see if Merel had decided on a wish yet. Well she finally had, and it's going to be a trip to Disneyworld. Ideally, Merel wanted to combine her two wishes (go there and meet Britney Spears) after seeing the "Britney Spears at Disneyworld" show a few times, but it's of course not likely that Ms. Spears will return there any time soon. We could pick the time of year, and we chose the week of March 13. It will still be winter in Pittsburgh, in fact there will be a foot of snow then, so it will be nice to be down in Florida.

When picking a wish, ideally you should pick something you could otherwise never do. For instance, meeting a celebrity in person. So you might wonder why anyone would pick Disneyworld. From the other parents we found out that kids (and the whole family of course) get the royal treatment while there. They get to stay in a special "Give Kids the World" hotel, get spending money, and will be able to go the front of the lines, which can save you several hours each day.

Saturday, Oct 30, 1999

We had our eye doctor appointment yesterday. Our regular doctor, Dr. Davis was back from a long absence, much to our pleasant surprise. They ran all the usual tests and the bottom line is that the left (good) eye is showing improvement, and the right eye is stable. We don't necessarily agree with the latter part, since there was a time that she could definitely not see any fingers from very close by, and now she can, but the official record shows that it is stable. As far as the left eye, the way I understand it, they keep tabs on (at least) four characteristics: Overall, Dr. Davis was very happy with the results of this visit. Of course, anything you might say about what all this means for the size of the tumor is at this point purely guesswork and we won't really know anything until the next MRI (a few days before Christmas), but overall, this is very encouraging news.

On the bad news side, Merel lost a few more clumps of hair tonight, and she is starting to get self-conscious about it to the point that she is now afraid her classmates will see it, and she wants to wear bandannas or hats. She's asking why this would happen after a two wek break from chemo, but the break means very little since the drugs are still in her system and could cause nasty side effects just about any day.

We had Ellie's eye checked as well, because she was diagnosed with a condition called juvenile xanthogranuloma which is not serious but can sometimes affect eyesight, and her eyes were fine.

A package arrived from Leo and Marian, with a card for Merel (see the Card Gallery), and two hand puppets, Winnie the Pooh and Eyeore, one each for Merel and Ellie. An appropriate gift from the master of puppet theater herself! When is the world tour, Marian and Tineke? You guys are the best!

Merel got email today from "Kevin the Backstreet Boy", and promptly wrote him back, of course. Merel actually gets quite a bit of email from Camp Sunshine friends as well as others. She likes to get email!. If that link doesn't work for you, her email address is angelone1991@hotmail.com .

Thursday, Oct 28, 1999

BIG NEWS TODAY. Tomorrow (Friday) is our next eye doctor appointment and all of us have been anticipating it with mixed emotions. What if the eye gets worse again? The doctors had said before that they might then want to start radiation, something we would want to avoid all costs, and we certainly would go for a second opinion in another city before starting radiation with all its harmful side effects.

But tonight, when putting Merel to bed, I asked her if she was worried about the appointment. She seemed mostly worried that they were going to put drops in her eye again. I asked her if she thought she could still see pretty well with her good eye, and she said yes, and she added that she could also see things with her bad eye!! This completely floored me. She was supposed to be permanently blind in that eye! I made her completely cover her good eye and held up fingers for her to count, and she got it right every time! She's been known to cheat and peek out of the good eye, but that definitely wasn't the case here.

This is a very timely discovery. I asked her why she hadn't said anything before, and she said she hadn't noticed it. In any case, it's great that we have the eye doctor appointment tomorrow so he can officially confirm or deny that she is indeed seeing out of her right eye. If so, that almost certainly means that the tumor is shrinking as well!

Thursday, Oct 14, 1999

Another stressful chemo day. Merel has been increasingly resisting the treatments, getting herself very much worked up so it takes several people to hold her down while someone tries to insert the needle into the port, which took three tries today. During the actual treatment, she threw up for some solid 45 minutes, and afterwards she couldn't walk so they gave Dianne a wheelchair to take her back to the parking lot. Merel was terribly upset and embarrassed over this, and made Dianne promise not to tell Ellie about it. Actually in that respect she has little to fear from Ellie who is generally very motherly and caring and would not make fun of Merel in public.

We finally got our social worker. We had no idea we had this option until we met other parents at Camp Sunshine, and it appeared to be come miscommunication among our doctors that caused us to miss out on one. I don't have the gentleman's name handy but he showed up during chemo and talked to Merel while Dianne left the room (Merel would never talk otherwise). It turned out that they had a good talk. Merel told him that she is very worried about her next eye doctor appointment, which makes us worried that maybe she already knows that her good eye is getting worse. The social worker asked her that question, but she says her eye is the same as before.

Monday, Oct 11, 1999

Last week was pretty rough for Merel, with long periods of crying every day up until chemo day, which she is getting really pretty sick and tired of (the chemo event itself was basically one three hour long crying fit). She has also been asking why some of her friends and relatives never come by or even call, and there is no good explanation we can give her. We did learn at Camp Sunshine from other parents that this is quite normal since many people are clueless on how to handle a family with a sick child. She understands quite well that people who are "too busy" really aren't, they just have different priorities. On the plus side, the weekend was better, the girls behaved well and Merel was in a good mood most of the time. Also, our counselor Katie from Camp Sunshine has stayed in touch with the girls just about every day.

Dianne took Merel to the hospital early last week for an appointment with the kidney specialist who couldn't make it and sent two of his assistants. Dianne said that to call that visit a total waste of time would be too kind. They said that they still weren't really sure about the bleeding, but they now think these are crystals forming in her bladder as a result of one of the chemo drugs. When the crystals break up, it causes bleeding, which by the way has so far always been painless.

As an example of how stubborn Merel sometimes can be, here is what happened when we tried to give her laxative cookies (Metamucil), to replace the other laxatives she already hates. Dianne had bought those cookies for her, thinking that she might have an easier time getting those down than the brown syrup. We put them in front of her at dinner time, and told her what they were for. That was a mistake, she just sat there, looked at them and began to cry, refusing to even try the smallest bite. They really taste pretty good, but she preferred to take the syrup, which she already hates.

We have been talking more about the Make-A-Wish Foundation, but Merel still has not decided. Ellie said, "if I could make a wish, I wish that Merel would get better".

Friday, Oct 1, 1999

We're back home after traveling much of the day, and trying to (re)adjust to the real world. This morning's goodbyes were understandably very emotional, with Ellie again being very upset at having to leave Katie; on the happier side, both kids got hugs from all of the Backstreet Boys, something that puts them in a good mood every time we mention it.

Saying goodbye to our temporary home for the week.

Saying goodbye to Katie.

Merel has had pretty bad leg pains the whole way home, hopefully things will be a little better for tomorrow morning's ballet class that they are going to.

I received email from Henriette, our friends in Holland are sending us over $1200, most of which we will be donating to Camp Sunshine. I will create a separate web page where you will be able to track donations and what the money has been spent on. We want to again thank everybody that was a part of this donation. You guys are great!

Thursday, Sep 30, 1999

Camp Sunshine has nearly ended, tomorrow there is just an early breakfast (7:30) after which everyone will pack up and go home. There was a final parent session in the morning where a few parents spoke of their experiences with children that have been off treatment for years. It looks like there are many up and downs yet to come and that there also could be long term side effects. One girl for instance, had slowly begun to lose her hearing, and has short and long term memory problems as the result of the chemo drugs. There was also an emotional discussion about statistics, where some people reported a 90% chance of recovery and ended up in the other 10%, and vice versa. If you're that one in a million chance of having a certain illness, that number that doesn't really matter that much.

The day started off ugly with strong winds and hard rain, but by afternoon it began to clear up and the skies turned sunny. Unfortunately, the wind stayed around and the water stayed too choppy for one of the main events of the week, aka the Wishboat Launch. All kids 3 to 12 make a little boat with a candle in it, then all get together around the lake, make a wish, light the candle and let the boat go. When it works, it is a very moving experience to see dozens of the little boats float in the lake with their candles lit, but it was not to be, the candles wouldn't stay on and the boats wouldn't get off shore.

The final event of the week was the farewell show, featuring performances by each of the age groups. The adults read poems for the babies; the 3-5 year olds sang a song but Ellie was nowhere to be found, and Merel was one of the 6-8 yr olds who performed 'Walking on Sunshine' as well as the Chicken Dance. The highlight was another performance of the Wannabee Backstreet Boys with their rendition of 'I Want It That Way'. The best part was that our counselor Katie was friends with the Boys, so she got them to do something special for Merel: in the middle of the song, the 'Nick' character pointed to Merel and took her onstage, whereupon all five of them knelt down and sang to her. If that's not heaven for a seven-year old girl, then tell me what could be! Of course later, she acted like she was embarrassed, but you know she just soaked up every second of it.

Some people, mostly those who live only a few hours away, are starting to head home which means that the goodbyes are coming as well. Even though we'll still see Katie tomorrow at breakfast, she started to give the girls hugs and Ellie just about completely fell apart, big tears streaming down her tired little face.

For most of the night, Merel had pretty intense pain in her feet, more than just tiredness, and we were lucky enough to get a ride back to the trailer from Laura Bean, Family Coordinator here at the camp. She's also starting to get lots of bruises on her legs again, which she has done for as long as we can remember, but as we found out this week, that could be another sign of childhood cancer.

It's been a wonderful week here, and it will be really hard to get back to the real world. It has been said that life is all about making memories, and in that sense this has been a very successful week, filled with many memories that last a lifetime

Wednesday, Sep 29, 1999

It is interesting how one place can be both very relaxing and very tiring, but that is how most of us seem to feel. Today consisted of another parents discussion group in the morning, followed by lunch and another boat trip on the lake. We bought Camp Sunshine shirts for all of us, took pictures of the kids with our counselor Katie, and walked around outside a bit, taking pictures of the kids in various settings by the lake. We had the rest of the afternoon off, used most of it to play cards and miniature golf. At night, there was separate entertainment for the kids, while the parents got to enjoy an adults-only dinner followed by a couple of hours of karaoke. Together with the four other people from our table, Dianne and I took part in the singing (and I'm using that term loosely) of The Beat Goes On. It's much easier to laugh at everyone else after you've made a fool of yourself as we found, but to be fair, some people were really good.

When we picked up Merel from her group, she had been sleeping through most of the movie they got to watch. She whimpered the whole way as I carried her back to the trailer. Merel has always had a really hard time waking up from a nap. Even as a baby, she would cry a good hour after every nap, and while that time period has slowly gotten shorter, her mood after waking up has never changed. Someone said today that many cancer patients have the same symptoms, according to their doctor. In addition, frequent ear infections are apparently common among young cancer patients. When Merel was between 2 and 5, she had almost constant ear infections and now we're starting to wonder if anyone should have picked up on that.

We've pretty much agreed that we will donate most of the money we have received to Camp Sunshine. They are building a brand new facility which will be able to accomodate more families and they're about 1.5 million short at the moment. This is really a wonderful cause, helping sick children and their families, and it is very well run indeed, giving kids a chance to have fun, and parents to meet other families with the same problems, and have plenty of fun too. The link I published before is wrong, you can check out the Maine Camp Sunshine here.

Tuesday, Sep 28, 1999

It is Tuesday night and a second full day, packed with activities has come to a close. Merel explained how she had fallen on the monkey bars yesterday. She had thought a bar was close by, but it was far away instead, so when she tried to sit on it, she fell down. Of course now that she has only one eye to see out of, depth perception is gone and she will have to learn how to live with that, or else accidents like this will continue to happen.

There was another group session for the parents, where we discussed anger, and coping skills. Again it was helpful to be able to talk about these things and to hear other people's stories and emotions. One lady said how she was just constantly angry at everything and everybody, and a lot of people could identify with that. Many people complained about medical personnel (in general very good, but occasionally incompetent which makes people, understandably, very angry), or about insensitive family members.

In the morning, Merel went on a firetruck ride (Ellie goes tomorrow), and on a fishing trip. After lunch the girls played on the beach for a while and we had our family portrait taken, services donated by a lady photographer from Philadelphia who raises a lot of meoney back home for Camp Sunshine. We also got to meet the clowns, the kids got a lot of little presents from them, then went back to their individual group activities. Dianne went on the ladies' cruise, and I went back for more Super Duper Blooper games. This time, we started with Buddy Walkers, these look like skis (only shorter), and two people are on them at the same time. You hold them up with attached ropes, and you have to walk in sync. Once you got the Left/Right thing figured out (one person keeps yelling "Left, Right") it wasn't so hard. The next game was a fire brigade where teams had to fill up a bucket by scooping cups full of water out of the lake and passing the cup back and forth between your legs. This wasn't nearly as messy as the final event, egg-tossing. I made it into the third round when I had to head for the showers after failing to catch one properly, it made quite a mess :) I was told later though, that there were a few people who got even messier, such as one woman who had the egg hit her chest. She got egg on her face, so to speak. Oh and somewhere in there was the Alphabe Scavenger Hunt, where you stand around with a group of people and have to come up with one item, on your body or in your pockets, for each letter of the alphabet. If you try this at home, you'll find that O, U, X, Y and Z are not that easy.

Not to be outdone, Dianne participated in this evening's talent show. Together with two other moms, one of which was celebrating her 49th birthday, she gave a sparkling rendition of ---I forgot the name of this song, will fix this later---. They were the only parents to go on stage, the rest was all kids, and most of them were a blast to watch. A few had chosen the same act, like dancing to the latest Brittany Spears song.

Then there was the group of five teenagers looking like the Backstreet Boys. They must have had some of the younger kids confused because Merel turned around and said, "These are the real Backstreet Boys, dad!" Most girls in the room were squealing like it was the real thing, and they were actually very funny.

Merel was in a bad mood the rest of the night because Dianne explained to her that those were not the real thing. In a case like that, Merel will argue for a while, and then get really mad and pretty much stay in a rotten mood for the rest of the night. We had her back to normal for a while, but something minor set her off while playing cards, and she went to sleep in a huff. She'll be fine tomorrow, until the next thing that pisses her off and then it will start all over again.

Monday Sep 27, 1999

Today was the first full day of Camp Sunshine. Every day, they have a very full program for all of us. We all had breakfast together at 8:30, after which Ellie went to to the 3-5 year group and Merel went to the 6-8 year group. The adults were split up into five teams, such that no husband and wife would be on the same team. The morning was pretty hilarious. We all had to come up with a team name and a team cheer, and then perform it on stage. After you'd seen a couple of groups do it, it didn't seem so silly. Next, we went outside for the first edition of the Super-Duper Blooper games. The first one was a relay race where you had to tie a pantyhose with a softball in it around your waist. You had to make it swing back and forth, and hit another softball on the ground with it, moving it along about a hundred feet over the beach, then run back with to your team. If you think this sounds goofy, well it was. Rumor has it that someone took a video and that it will be shown Thursday night. Try it at your next summer picnic!

The second event was a group waist measurement. All 11 of your team had to bunch up close together and then they would come by with a tape measure to take the groups' waistlines. The kids, meanwhile, did crafts and played games.

After lunch, the kids and I went on a "cruise" on the Point Sebago Princess, a small cruise boat that circled around some of the islands on the lake. The weather was gorgeous today, mid-70s and nothing but sunshine, and it was beatiful out on the lake. The water was about as calm as you'd ever see.

Upon return to shore, the kids went back to their groups and the adults went to their first Parents Group Session. The sessions are run by a social worker who has a lot of experience with parents of cancer patients. Everyone sat around in a circle in this big gazebo, and took turns telling their stories. Other than a group of people whose kids had ALL (leukemia), everyone had a different condition. Even among brain tumors, dozens of different varieties exist, and we haven't met anyone yet who has the exact same condition, although one or two are similar. Of all the kids' stories we heard, some were better than ours (like almost "cured"), some were much worse (terminal). One family had already lost a child years ago. One woman cried when she told her story, and all of a sudden they had to pass Kleenex around the room for everyone. Most of these stories are sad, but the important part is that you get to talk about it, and realize you're not alone. The group discussions continue tomorrow.

After dinner we had a costume party. The kids were dressed up as hippies, complete with tie-dye t-shirts, beads, wide jeans and peace signs painted on their faces. I think they enjoyed that part more than the dancing. We left a little early because Merel complained of pain in her legs, a common side effect of chemo drugs.

Ellie is always ready to pose.

Merel joins the group.

Sunday Sep 26, 1999

We arrived at Camp Sunshine today. It took two plane rides and a three hour wait in Newark, NJ, but the girls thought it was great. We were picked up at the airport by Camp Sunshine vans for a 45 min ride to the Point Sebago resort of which Camp Sunshine is a part. There are cabins and RV's in a wooded setting surrounding Lake Sebago. We're in an RV, a very short walk away from the water. The accomodations aren't quite like a hotel room, but they're adequate. The park is beautiful, as is the weather and it looks like it's going to be a great week. At dinner, each family met their assigned volunteer. Our volunteer is Katie Dunn, a high school student from Massachusetts in her senior year. The girls got along great with her right away. After dinner, we got some information about what the rest of the week will look like. For the most part, we were just told to be there tomorrow morning at breakfast and everything would be explained to us. There are 38 families here, many live close enough by to have arrived in cars, but obviously not all of them, there are families from North Carolina as well as Colorado here. Merel will be in group of 6-8 year olds, and Ellen will be in the 3-5 year old group. She might complain that it is too babyish, we'll see. Parents have many sessions with just other parents. There's entertainment every night, which started tonight with a magician, David Oliver, who did a really great job of getting the kids involved in everything and keeping it all very humorous. His tricks were pretty good too!

Saturday Sep 25, 1999

We're leaving early tomorrow morning for Camp Sunshine near Portland, Maine. We'll take the laptop with us; while I don't expect to be able to get online, we'll record any interesting events each day, and when Friday rolls around, we should have a day by day report available online.

Earlier this week, a package arrived from Islandia, courtesy of Steve Beck. It included a card as well as a very generous donation for Camp Sunshine from "all of us in Islandia". We are really quite floored by all this generosity, and we'll see to it that the money is used in the most appropriate way. Thanks again to everyone who has contibuted.

Sep 22, 1999

A quick update, it has been a very hectic week, I had to go to San Diego with little time to get online. Merel had her MRI Monday afternoon, and the results were available the following day. There is no reduction in the size of the tumor. The doctors acted disappointed over this, even though they had told us before not to expect any shrinkage the first time around. But later on Tuesday, Dr. Adehlson, the neurologist, called and told Dianne that in fact this was normal, some kids respond to the treatment the first time but many don't. A complicating factor was that there was swelling in the rest of the brain, yet another side effect of the carboplatin. On Wednesday, Dianne took Merel back to the hospital so they could administer anti-inflammatory drugs via an IV, a three hour procedure. Including the various waits at the hospital, they were there for six hours. They took another scan immediately afterwards and it showed that the treatment had been successful, the swelling was gone. They also felt that this sort of swelling would explain her slightly decreased vision in the good eye.

On Monday, the Make a Wish people came to the house, and explained the program. There are very few limits to the kinds of things they can make possible, but Merel will still need to make up her mind about something. And it's no longer the case that this program is only for the terminally ill. They said that any kid that goes for treatment once or twice a week for several hours is definitely not having fun, and that's what they want to fix.

Sep 16, 1999

Today (Thursday) was chemo day. Dianne reports that things went well, Merel's blood counts are all in the normal range again, which means her immune system recovered during the two week break. We're now in a phase where it's four weeks of treatment followed by two off weeks. I talked to Merel on the phone from Rochester, NY and she sounded very upbeat, like nothing ever happened. She continues to amaze me in that way. Of course, things aren't always that rosy. She understands that she is very sick and that things could get a lot worse than they are now.

Dr. Jakacki had looked at the ophthalmologist report and commented that probably, the petutiary gland had swollen as a result of the chemo which would press on the optic nerve, explaining her somewhat worsened eyesight in her good eye.

On Monday the 21st, Merel has her first MRI since chemo started. Results will be available the next day. Dr. Adelson, the neurologist, will look at the results.

Dianne had to get notes from the doctor for school, so she can keep medication as well as Gatorade there.

The people from the Make A Wish foundation will come see us Monday night. Merel has no clue what her wish will be. Apparently these people will bring all kind of presents, including some for the sibling.

Sep 12, 1999

Dr. Jakacki's assistant, Cindy Shopene, called to tell us that Dr. Vats clarified his assessment of the sonograms; rather than a "contamination" of the liver, it is an infection. Exactly what kind of infection, they don't know yet. They'll give a pretty generic antibiotic on Thursday. They'll want to do a urineanalysis as well on Thursday, which should then tell them the exact nature of the infection, so they can choose the right antibiotic.

Sep 11, 1999

This morning (Saturday), I took Merel for a checkup with the ophthalmologist. Dr. Davis was out on a leave of absence and we were seen by Dr. Bilgan instead. The news was mixed. The vision in her left (good) eye had gotten a little worse, went from 20/25 to 20/50, but the doctor said that this was normal, since the optic nerve could have swollen a bit as a result of the chemo, and it would go back to normal later. Merel had some trouble seeing things to the far left of her. On the other hand, she is definitely not totally blind in the right eye; they held a lollipop to the far right of her and the "blind" eye immediately followed it, then lost complete track of it when the object was held right in front of her eye. But she was also able to tell, with some certainty, whether a flashlight held in front of her was on or off. They also suggested that we get her glasses, if for no other reason than to protect her good eye from possible injury. The chances for something like that are slim of course, but if you only have one eye, it makes sense to be extra careful with it. So this afternoon, we went out and got her glasses. They made them in about an hour at Wal-Mart so we were able to leave with them too. She looks so adorable with them, really cool.

Meanwhile, Dr. Vats had returned from Switzerland and looked at the pictures from Merel's tests on Tuesday. Luckily, he decided that this condition could be treated with antibiotics, which they will administer on Thursday as part of her chemo treatment. The dosages are going to be stepped up and we should probably expect some more hair loss, it has been pretty quiet on that front the last two weeks while she has been on break from chemo.

We also took both girls to the dentist today to have their teeth checked and cleaned, no problems. As you can tell we had a very exciting Saturday!

Sep 10, 1999

Several news items the last few days. First, some results are back from the sonograms which were performed on Tuesday. They found what they referred to as contamination around the liver, which seem to be deposits caused by bacteria, most likely linked to the chemo drugs. Also, her bladder contains debris which may be of a similar variety. They're still not sure whether either of these symptoms are related to the bleeding, but they do of course want to do more tests. The current plan is that she will have to go in for a "scope" next week, that's where they put her to sleep and then go in through the belly button. But that hasn't been decided yet. Dr. Vats, the nephrologist whose opinion is needed, is on a conference in Switzerland. They've called his emergency center, so hopefully he will have a chance to give his opinion in the next few days. Perhaps the problem can be treated with medication.

I've been exchanging e-mail with Henriette in Holland this week. While preparing for one of their big get-togethers with the old college group, they spread the news of Merel's illness and the group decided to raise money for Camp Sunshine. We were quite stunned by this act of generosity. When the final number is in I will publish it here, along with the names of everyone who contributed. We'll probably donate the money either to Camp Sunshine, which is expanding so they can be open year-round instead of just for the summer, or to the Children's Hospital Free Care Fund, which exists to make sure that even children who aren't so lucky to have good health insurance receive treatment. The good news is that the company I work for, Computer Associates, matches 200% of every employee charitable donation. So every dollar donated by an employee, to a charity of the employee's choice, turns into three dollars that way!

We've been contacted by the Make A Wish Foundation. For those of you not familiar with this organization, they try to make the wish of a terminally ill child, or a child with a life threatening illness, come true. You can pick three things and then they will choose one of them. Some kids have met famous sports figures or gone to faraway places. They want to come visit us in a week or so. We've told Merel about it but I'm not sure she fully understands what this is about. It is also somewhat of a shock to us because we usually think of kids that are going to die in a few years when we hear of the Make A Wish Foundation. But, since her illness is considered life threatening, Merel qualifies for this program.

Sep 8, 1999

Today (Wednesday), Merel will have to go to the hospital for tests. The doctor's office called on Tuesday in reply to Dianne's message that Merel was bleeding again. (Monday was a holiday in the US). They are all stumped about the bleeding, and want to test for several unusual conditions, such as the so-called "BK" virus which could explain these symptoms. Stay tuned for updates.

Sep 6, 1999

There was more bleeding this weekend, on Saturday night and Sunday morning. The bleeding always seems to happen on weekends, we're wondering if that's significant. We have an appointment with the nephrologist on Oct 4, the current thinking is still that these are calcium deposits in the kidneys caused by the chemo drugs, and when they leave the body they could cause a lot of bleeding without any of the pain associated with kidney stones.

Merel is on a two week break from chemo. After that, it will be four weeks of treatments followed by another two week break. This cycle will repeat itself three times, if I'm not mistaken. Other than the bleeding, and some more hair loss, she hasn't had any bad side effects lately. Her hair is now really thin; no major bald spots, but I think we're down to the bare minimum here. Of course none of this is helping improve her mood, she can be quite difficult to handle sometimes.

A package arrived this past week from Bert and Tineke in Holland, containing a really cool Crayola set that makes all kinds of sounds when you use it. Thanks, Bert and Tineke!

Aug 29, 1999

Last night, and this morning, some pretty heavy bleeding occurred. Since it is a weekend and it does not look critical, we didn't call anyone. Our only option would be to go to the Emergency Room and that seemed a little severe. Dianne will call tomorrow. This is the last day that Merel is supposed to wear her surgical mask. She has hated every minute of it and actually probably only wore it about half the time that she was supposed to. She does not cooperate well at all.

Aug 27, 1999

Merel woke up last night around 2 am, crying from pain in her legs. I made her a warm bath and gave her some Tylenol, she seemed a little better after that. But, she woke up early and threw up around 7:30, and has been feeling pretty sick all morning. We had to go to the store to get some stuff and she really hated going outside and having people see her with that mask on her face. I finally convinced her to take some of the anti-nausea medication and she seems to feel a little better.

Aug 26, 1999

Chemo day today. Merel came home wearing a surgical mask. I looked at her and she said "don't even ask me about it". Turns out that her blood counts are off, white blood cells and platelets are low and she has to wear a surgical mask for the next 72 hours to reduce the risk of infections from airborne viruses. One of the requirements for Camp Sunshine next month is that the blood counts meet certain criteria, but it was still within their limits, so she will be able to attend.

We learned today that there are six children that go to Children's Hospital for the same condition. Three from Pennsylvania, one from New Jersey (they fly in every week), one from Ohio and one from West Virginia. Of course we're not allowed to know who these people are.

There is a two week break from chemo to give her body a chance to recuperate from all the drugs. She'll be happy, especially with all the pain in her arms and legs she's been having recently. After that, phase 2 will start with heavier dosages.

Yesterday Linda stopped by and dropped off a present from Roxanne, a furry BRIGHT PINK Barbie backpack. Thanks Roxanne!

Aug 24, 1999

Not much change lately. Side effects continue, but seem to be a little less severe than they have been. The hair loss is slowing down, and the nausea is causing less problems. After the last chemo session, during which they increased the Zofran anti-nausea medication, she was feeling sick but didn't throw up at all. Most of the noticeable side effects are headaches and muscle pains. But let's not celebrate just yet. This is a 12 month program; each quarter is a phase, and we're currently in the Introduction phase. During the next phase, they will increase the chemo drug dosages, so who knows what's in store for Merel yet. The bleeding has stopped and we're still waiting for an appointment with the kidney doctor.

I took the girls to Kennywood today. They had a blast and Merel did really well, now and then complaining of sore legs. We had to leave early because of bad weather, probably just as well.

Sue Broughton sent a card and a generous donation for Camp Sunshine. Thanks Sue!

Aug 19, 1999

Today is chemo day again. It's now early AM and I will report on it later. The last few times the drugs have made her pretty sick and there's no reason to expect that to get better.

Last Saturday, we had to take Merel in because of a suspected ear infection. We have to watch for any minor complications and be very careful in general. They did a throat culture which was negative. She really hated that by the way. All four of us had gone and when Merel started acting up I took Ellie out of the room so maybe she would feel more at ease, but it still took two nurses to hold her and pry her mouth open.

Aug 11, 1999

Tuesday was chemo day. There is only one treatment this week, they changed the schedule again. She cried when they stuck her with the needle this time, which was unusual, but she seemed to feel more or less ok after the treatment. Then Wednesday morning she woke up early and started vomiting again (she did some of it Tuesday night). I dropped off Ellie at camp, Dianne went to work and I kept Merel at home for a while until she said that she felt better (gave her Gatorade with the Zofran mixed in). Took her to camp, but she didn't last too long. Mid-afternoon they called Dianne to come get them, she was feeling ill again.

Overall, a pretty rotten day for Merel. She said this was the worst day of her life, that she had never felt so sick before. Ellie of course had to chime in, and told Dianne, "Well, you take her to that place". Dianne explained again to Merel how important the chemo is, and Merel asked, "if it doesn't work am I going to die?" This was the first time she asked that question. Dianne of course said no, if it doesn't work they'll do something else, but it makes you wonder what goes on in that little head. Or actually, it pretty much answers that very question.

Went to the store at night to get a laxative that's suppose to taste better, and a liquid version of the Zofran prescription.

From the Good News Department, the blood test showed that her hemoglobin level was back to a normal level. And the doctor said that her bleeding could be due to a kidney stone. Passing a kidney stone doesn't always have to hurt real badly, but it could explain the bleeding (which hasn't happened in about 10-14 days).

Aug 9, 1999

Some new side effects the last few days. They're pretty minor but the doctors want to know about all of them. She's been sneezing a lot, which could be bad because of her weakened immune system. Her right arm has been hurting, not sure where that's from. And one of the kids at summer camp made fun of her bald spots today. Dianne's going to call there tomorrow and talk to the teachers. We keep getting more cards and letters, this time from Anita and Ron in Holland. I think I'm all caught up with all the cards on this page. Sometime soon I'll probably move the Card Gallery to a separate web page and include a link here.

Forgot to mention that last week, our friend Margaret stopped by; we weren't home but she dropped off a set of Beatrix Potter books.

Aug 8, 1999

It's been a pretty quiet week on the medical front. Merel had a great time in camp Adventure, she came home with all kind of craft items they had made, and she was elected "Queen Clean" for the great job she did cleaning the place. Now if she would only do the same thing at home! They went swimming every day, had a campfire and slept in a tent one night. We had given her a disposable camera and she took some neat pictures, some of which you can see here.

The picture at left was Merel's first, and it shows us right before we left her at camp. The girl on the left is her camp counselor Erin.

Click on the picture to see a larger version.

Here's Merel by her bunk, one of eight in this room.

Group picture with all her roommates.

Last Sunday when I gave her the camera and had her take her first picture, I noticed she put it in front of the left eye. I started saying "use the right eye", then I realized that she can't use that eye any more. And now I can't help thinking that I could have notice this before. Last winter Holly gave her a camera for Christmas, and Merel wanted to use it right away, but I told her it was an outdoor camera and we'd wait till summer. If we'd gotten started on it right away, I'd have noticed if she was using the wrong eye. But you can't start thinking that way, it'll drive you crazy. Merel said that one nice thing about the camp was that she didn't have to feel bad about having bald spots on her head, since many of the kids either had no hair at all, or had the same problem.

No new developments on her condition this week. She hasn't been bleeding at all, and of course no doctor's visits and no one called us. This coming week, she will have two chemo sessions to make up for the missed one, so I don't expect she'll be feeling too well. Today (Sunday) we have to collect all her urine for tests on Tuesday. We have not yet been contacted by the kidney specialist that she's supposed to see next.

Another package arrived this week from Holland, this time from Arjan and Henriette. Lots of goodies, including two pencil cases, two stuffed doggies and a donation to Camp Sunshine from their (extended?) families. The list of donors: W. Engelhart, J. Kientz, A. van Unnik, A. van Unnik, Carla, Ad, Jesse, Eloy, Hans, Ceciel, Marjoes, Nanneke, Jacco, Corien, Dirk, Camiel, Yannieke, Alma, Ton, Lennart, Lieke, Kitty, Jan, Arjan and Henriette. THANKS EVERYBODY!!!

As the news filters out to more (ex) Tartan people, we continue to get more messages from people. Terry Kennedy and Kevin Nolish sent their regards this week. Dianne ran into Mary Anne Tolbart at the grocery store.

Aug 1, 1999

An update to Friday, Merel stopped vomiting early Friday afternoon and has been feeling pretty much normal since then. Today we took her to her Oncology camp where she will spend the next five days with about forty other cancer patients, ages 6 to 16. The facility is called The Woodlands, near Wexford PA. It looks like a beautiful place, there will be lots of neat stuff for them to do, camping, swimming, crafts, campfires, cooking, etc. They decided to postpone the Thursday blood test for the hemoglobin till next Tuesday.

One cause of much grief has been the laxative she's supposed to take every two days. We have been giving her Children's Senokot but she absolutely hates it and will scream for an hour or more before taking it. If there's anyone in the US who can recommend a laxative for children that doesn't taste gross, please let us know. This stuff actually isn't that bad, we tasted some of it but I guess for some reason she can't stand it.

July 30, 1999

Today is not a good day. It started last night when Merel couldn't sleep. Around ten or so, she asked for medicine to make her fall asleep. We told her she could stay up for a while and read, but she still couldn't fall asleep so we gave her some medicine. It didn't help and she ended up watching movies past the point where we could stay awake. Then, starting at around 2 am, she has been vomiting about every half an hour or so. It's about 11 am now and she's asleep. I just crushed up a Zofran pill (anti-nausea) into her Gatorade drink. Dianne has been on the phone with the nurse to try and get her a liquid form of the Zofran. Ellie has been up since 4:30 (because of the racket Merel made) and is eating a peanut butter sandwich about every hour.

July 29, 1999

The good news today is that the sonogram results are back and they are normal, meaning no obvious signs of kidney stones or calcium deposits. But, that also means that they still don't have an explanation for all that heavy bleeding. The next step is for Merel to see a kidney specialist (yes, yet another doctor). He may do more tests to find out if anything is wrong with her kidneys. If that doesn't provide any answers they'll do an MRI of the entire body.

There is more news, and it is not great, but sort of in line with the kind of side effects we have come to expect. The latest blood test shows that her blood is low on hemoglobin, right at the "danger level" of 7.5. Next week, Merel goes to a camp sponsored by Children's Hospital, and on Thursday if her level not higher than 7.0, they will take her to the hospital by ambulance and give her a blood transfusion right away. In any case, her level needs to remain at least at 7.5 or better, go back up to 8.0, or else she will have a transfusion on Tuesday the 10th of August anyway. The chemo is wearing down her system and this is one of the results. Her reflexes are almost gone, when they hit her on the knee with that little instrument, there is no reaction from the right leg at all and very a little from the left leg. It is likely that she will need transfusions once a month or so, depending on her hemoglobin and platelet counts. The transfusions should help restore her strength. Platelets in a healthy person are above 300,000 (I'm not sure what units these are measured in). In a typical chemo patient, they go down to around 150,000 but hers are 70,000. The purpose of platelets is to make your blood clot, so if you don't have enough of them you could get in serious trouble from a small cut.

You might wonder whether it's a good idea to have her go to this camp, but it is organized by Children's Hospital and the doctors are all behind it. There will be a doctor at the camp, and they have a helicopter standing by in case of emergency. The transfusions by the way, take five hours and since they are considered surgical procedures, parent(s) are only allowed to be present for a few minutes every hour.

In preparation for the blood transfusion next Tuesday, we have to collect 24 hours worth of her urine on Sunday and store it in the refrigerator. She's not allowed to leave the house during those 24 hours. Merel doesn't know most of this yet. We don't always tell her everything right away, especially in a case like this where (a) it is more than a few days in the future and (b) it might be cancelled. When it's time to do it we'll explain everything to her of course. If she bleeds at all during that 24 hour period then we have a good chance that the blood might give them enough clues that they can finally figure out where it is coming from.

Last night Diana Harbison stopped by and told us some of the stories of what she went through years ago, in many ways it was similar to Merel's story. We had expected to have her show Merel how to use the origami, but she's going to send her son Michael instead (we have it in writing Diana!). It was good to see her.

July 26, 1999

The sonogram went without a hitch today. Merel showed me the way to the radiology department at Children's. Results will take one or two days, whenever the doctor (Frances X. Schneck) has a chance to look at the pictures. There was some bleeding in the morning, but we were told to expect that. Hair is falling out in ever greater amounts. Today three big clumps came out. She still does not have any real bald spots, but her hair is getting very stringy.

A package arrived today from Holland. Teun and Lenie had sent all kind of neat stuff for the kids to play with, markers, kits to make mobiles, pencils, writing tablets etc. Ellie got all the same kind of stuff that Merel got which was very thoughtful. Another card from Bert and Tineke as well. Last week, Diana Harbison dropped off a supply of origami sets for the kids. Now if we can only get her to come here when Dianne is here as well...in any case, thanks everyone for your thoughtfulness. It really is very much appreciated.

July 25, 1999

Sunday night. Tomorrow, Merel is going in for a kidney sonogram to see if she has kidney stones or calcium deposits. She continues to lose more hair. Every time she brushes her hair and a clump comes out, she looks at it with those big sad eyes, and you can tell that she doesn't understand why it's all happening to her.

An addendum to the July 21 report: during that visit, they tested her eyes again. With her good eye completely covered with a patch, she could not see a bright light held closely in front of her bad eye. She is definitely completely blind in the right eye. It is interesting though that she still moves the pupil towards anything she's looking at. The doctors said that it is very unusual for a blind eye to look as healthy as hers does, so maybe this is somehow a good sign. We're told not to expect her vision in the right eye to ever come back though.

July 22, 1999

I wanted to clarify something. When it says here, that "the doctor said such and such", we are actually talking about one out of many possible doctors. So I thought I would introduce Merel's "medical team" here. I should say that we are blessed to receive care and treatment by many of Pittsburgh's finest doctors. Several of the physicians mentioned below are head of their respective department. Also, Children's Hospital of Pittsburgh is one of the finest children's hospitals around. Children come here from hundreds or thousands of miles, and in many cases from places like Russia to receive treatment. On a typical summer day, more than one hundred children age 17 and under receive "same day surgery". So here is Merel's "medical team":

July 21, 1999

Another day of surgery. Dianne and Merel went to the hospital while I stayed with Ellie. It was all done around 1PM and they were home by 3. We'll have to wait till Friday for the official results but so far it looks like there are no problems where they suspected them (in the vaginal area), but they did find what may turn out to be kidney stones, or calcium deposits in the kidneys. That would be another side effect of the carboplatin chemo drug. I'm wondering whether these side effects are only occurring because it is early in the treatment or whether she is going to have a whole year of these complications.

July 20, 1999

Today we took both girls to the doctor for back-to-school checkups. Ellie got three immunization shots and they checked their eyes and ears etc. No problems other than what we already know. Tomorrow (Wednesday) Merel is going into the hospital for exploratory surgery, where they want to figure out once and for all what that thing was they saw on the sonogram. The doctor today (James Romberger, her regular pediatrician) said that all her blood counts were normal and he didn't understand why she had been bleeding so much.

July 19, 1999

Merel is beginning to lose some hair. Every time she brushes her hair, a few hairs get stuck in the brush (more so than from normal brushing). It has no obviously visible effect yet, although Dianne think that she's clearly missing some hair. We've prepared Merel for the fact that she may lose some or all of her hair, but it will almost certainly grow back.

Some people I've forgottten to mention lately. Rich Cummings was nice enough to accompany Dianne to the ER the other night (they were there until about 2:30 in the AM). We're getting postcards and email from family and friends in Holland (ten Have, van Unnik), and we've received email from Jeff Farbacher and Mark Abramowitz. We really do appreciate all this stuff.

July 15, 1999

Things are mostly OK today. The blood test came back fine, all the counts (white bloodcells, platelets) are good. It took Dianne four hours in the emergency room to get her blood drawn. This afternoon, Merel went in for her weekly chemo treatment. The dosages change from week to week and this week she only got one of the drugs (vincristine). Hopefully this will give her body a chance to rebound from the nasty side effects from the carboplatin.

July 14, 1999

Today was supposed to be the first day for the injections that are supposed to stop the onset of puberty. But instead, they told Dianne that the sonogram taken last week was in fact inconclusive, and that they wanted to do more tests. Next week, Merel will have to go to the hospital again and they will do further investigations. If necessary, a biopsy may be done again. The injections were put on hold because of all this, and also because at least some of the doctors believe that puberty may not be in fact starting just yet.

Things got more scary. Merel has been bleeding again, first in the afternoon, then later at night while they were at the Weber's house. I just got a call from Jim at about 10:45 at night, telling me that Dianne had to take Merel to the hospital because she is bleeding again.

July 12, 1999

More scary news: the doctor called today to tell us that Merel has no white blood cells, indicated by the last blood test. Of course, white blood cells are responsible for fighting off infections, so right now she is very vulnerable to diseases. They gave us new drugs to combat that problem too, and production of white blood cells should be back to normal within 24 hours.

I forgot to mention a few things. A couple of days ago I mentioned bleeding, and Dianne reminded me just how serious that had looked. The doctor estimated that she had probably lost a pint and a half (750 ml) of blood. This wasn't really menstrual blood, but rather it came from the walls of the bladder collapsing, the same way the walls of the uterus collapse during a menstrual cycle. If this all sounds very scary, well, it is of course. But they said they were going to just "watch" that, it shouldn't happen again especially with the new drugs (the injections start Wednesday).

Oh, and just to expand upon the early puberty, if that happened, her bones would fuse and she'd stop growing. At 54 inches (135 cm) that would not be good. The other thing is that she's terribly moody. Of course you'd expect some of that from a sick child, but she has some pretty bad episodes. Hopefully when she goes back to school, she won't lose any friends over it.

July 10, 1999

The news from yesterday...the sonogram, and further tests, showed that this is not another tumor. Rather, Merel is having early menstruation. The chemo drug carboplation has powerful side effects, and messing up the hormone system is one of them. If left untreated, she will grow into a woman at age 7, which is not good. To stop the process, they will give her additional drugs, which are administered by injection (four of them in each sitting). We were also told that chlorine from swimming pools can have an adverse effect, and she's not allowed in the pool for 24 hours. Then in the future she has to always take a shower right away after swimming.

On the good news side, she did regain two pounds. Overall, she's very lively and looks just like any other seven year old.

Yesterday was Ellie's birthday and with all the commotion, we were kind of ill-prepared for it. But we had our friends Jim and Leslie over with their kids, got cake and balloons, and the kids had a great time so things turned out ok.

July 9, 1999 (early AM)

I missed most of what went on today due to communications problems (technical) and the fact that I was on a plane for four hours. When I arrived at the airport I called home to find out how things went. Not too well. Merel had woken up at 6:30 with blood in her pants, and Di called the doctor as soon as she could. Since today was treatment day anyway they said to just bring her in the regular time. There's obviously something wrong here, but they don't know what, or they're not saying. It could be an early menstrual period. Girls are getting these earlier and earlier, at least in the US, and the chemo drugs could help bring them on. It could be any number of other things as well, including something as scary as an abdominal tumor. She's going in for a sonogram today (Friday) at 12:30, and that should tell what it is. The doc suggested to Di that Merel doesn't need to know the possibilities just yet, she's scared enough about this blood, no sense in worrying her about more tumors. Of course if that turns out to be the case then we'll tell her.

July 8, 1999

Today is Thursday, which is chemo day. I will report on it as soon as I can. The weekend here was very hot and we spent quite a bit of time in the swimming pool, perhaps a little bit too much because Merel was very tired and she woke up early Tuesday morning (right after I left for the airport) with pain. She really isn't supposed to be in the sun too much, so when we go to the pool and we get out of the water we always find a spot in the shade.

The last week of September, the four of us will go to Camp Sunshine in Maine, this is an AT/T sponsored camp for kids with a terminal illness. Now we don't believe that her illness is terminal by any means, but her condition (brain tumor) qualifies for that event anyway.

Check out Camp Sunshine on the Web

To help sponsor the event, we are selling paper "sunshines" for the bargain price of $1. I've been wondering what to do with them. They have a space for your name on them and I thought perhaps the best idea would be, rather than for us to send you one (they would have to be folded to fit in a standard envelope), that we should keep them here. We will put your name on one of the sunshines, and then string them all together and hang them up somewhere in Merel's room. When it's all done, I'll take a picture and put it here on this web page. So, please help sponsor this event and send $1 to Merel Duursma, 2415 Greensburg Pike, Pittsburgh, PA 15221. Thanks!

July 1, 1999

Today, Dianne took Merel in for a three hour visit. (I'm reporting this from Phoenix.) She got both drugs, the full dose of carboplatin and about 75% of the vincristine which made her sick before. The carboplatin can actually cause a nasty rash in about 30% of children that take it. If the rash is bad enough she may have to switch to pills, which would be a major ordeal because she's deathly afraid of pills. The skin numbing cream which Dianne applied to the area where the tube gets hooked up worked very well. Of course Merel was frightened of the needle (it took three people to hold her down), but she told me later over the phone that she hadn't even "felt a pinch". They also gave her Zofran (to combat nausea), benadryl (to control itchiness from the rash), and tylenol (not sure why, I guess she had some pain) [Note for folks in Holland, Tylenol is acetominophen which is known as paracetamol in Europe)]. She's not allowed to have ibuprofen based drugs. Other developments:

Merel lost two more pounds, and we're now supposed to give her "anything she likes", if she wants a chocolate bar for breakfast then she can have it, at least until she gains some weight back. A few hours after the treatment she actually got hungry and Dianne took her out for a hot dog and french fries, all of which she ate.

A few days ago, she complained of blurry vision in her left eye (the "good" eye), which is very scary. Dianne made her an appt with the eye doctor (she might need corrective lenses anyway), and will check her eye from time to time to see if she can read license plates etc.

We learned that it will take at least six months (till December) until we find out whether this treatment is working. They'll do MRI's every three months, but the first one won't tell them enough to say whether any progress is being made. By the way, the best you can get with this sort of treatment apparently is that the tumor doesn't grow. Then if you can keep it stable for a few years, you can start radiation.

June 30, 1999

Well it's been a while since the last update. Whenever that happens you can safely assume that nothing major has changed. Merel has been feeling pretty good the last week, but that could be because they only gave her one of the two chemo drugs last week, due to the fact that she had bad reactions the first week. But tomorrow (Thursday) she needs to go back and have the full dose of both drugs again. So we're kind of worried how that might turn out.

Her appetite has been lacking a lot, and she actually has lost three pounds. The doc told us to get her on whole milk, and she's also drinking Carnation breakfast drinks in the AM so hopefully she'll gain the weight back. If anything, when you are taking strong drugs you don't want to lose weight.

We have heard from lots of people lately, and that's always a happy occurrence. At the risk of leaving someone out, I'll just mention some of the "Tartan" people that have sent responses to the news; Ken and Judy Butler, Sam and Diana Harbison, Phil Ford, Matt Bost, Adel Fergany. Thanks to all for your kind thoughts and encouraging words.

Ellie went on a trip today, not just any trip either. Linda is taking her to Las Vegas for the July 4th weekend. She told Merel that she'd miss her (yeah sure). In August, Merel gets to go to a camp especially for children with cancer. She'll stay over for four nights. I think it will do her a lot of good to be around other kids with more or less the same problems. Kids aren't the most compassionate bunch at times.

June 24, 1999

There's good news and bad news today. The good news is that the tubes that were taped to her body all came off today, and she just has a few stitches left on her chest, as well as a little bump on her skin. The cathether is under the skin. Also, Merel took a shower today, and is allowed to go swimming. After a week of cooler weather it has gotten warm here again, so that's good timing.

On the not so good news side, the chemo drugs are making her pretty sick and cause her to wake up a lot during the night. I have been away for a few nights so Dianne hasn't gotten a break from spending a lot of hours during the night with Merel, trying to get her back to sleep. One problem is that she hates to take any kind of medicine, and she often wakes up totally frustrated from all the pain and you can't reason with her, so it's very hard to get her to take even mild tasting pain killers. The doctor told her she has to drink whole milk, and gave her special milkshake mixes which will add fat to her diet, she needs to gain some weight.

I have to say that it hurts terribly to see your child in such pain. We haven't had to deal with trying to calm down crying children since they were babies, and then you usually knew what to do, but this is different. Especially since it makes so little sense.

June 22, 1999

Merel has leg cramps today, another unpleasant side effect of chemo.

I realize I never gave the details of the official diagnosis from the biopsy. It turns out that Merel has a "glioma of the optic chiasm". A glioma is a tumor of the "glial" cells in the brain. These are the cells surround the nerves, loosely speaking. In this case, the optic nerves. Here's a good website to read more about it: Low Grade Glioma in Children.

June 21, 1999

The girls both went to summer camp today. Merel was OK in the morning but got real tired in the afternoon and had to lie down for a while. Later when she came home, she felt sick and went to lie down in bed. These are common side effects of chemotherapy, just ask Dianne.

To add to the mix, Ellie had to see the doctor today because her ears hurt. Turns out she has a double ear infection and is now on antibiotics. Because of Merel's weakened immune system, we have to be extra careful when anyone has infections around her.

Yesterday we mentioned how our friends have been helping out. We also wanted you to know how Merel's aunt Clare has been calling every day and showing her concern, as well as helping out with various suggestions.

June 20, 1999

Today is the second day after Merel's surgery. She's feeling much better today and got a "great" night's sleep, as she put it herself. She's not allowed to take showers or baths until Thursday, so today we washed her hair in the kitchen sink.

Merel made a funny today, Dianne took us out to dinner for father's day, to Max and Erma's. After dinner, the girls both got a quarter for the gumball machine. Merel got a gumball with WINNER printed on it, which is good for a free sundae. Just as we had explained it to her and were about to claim our prize, she had begun eating it, erasing any proof of her prize...

I should mention that we are getting a lot of great help from all of our friends. In no particular order:

Thanks guys!

Of course, Ellie has also been a great help. Yesterday, when Merel couldn't walk very well after the surgery, we told Ellie it was her job to hold Merel's hand outside to make sure she wouldn't fall. Ellie is very concerned and she does a great job watching out for her big sister.

June 18, 1999

Merel just finished her surgery and they just got home. I called Dianne from San Francisco and found out all about it. Unfortunately I couldn't be there today. Merel suffered a lot, and she shouldn't have been sent home today, she's very sick from the anaesthesia. The insertion of the catheter will have to heal for five days. Until then, she has a big bump on her chest. The doctor said that she can go to school, she will not get sick from other kids due to the weakened immune system, but if she gets sick herself then she'lll just stay home, just like any other kid.

June 17, 1999

Tomorrow is Merel's surgery. At 2 pm, she will be put to sleep and a catheter will be inserted under her skin. She will then also get her first dose of the drugs. One of the possible side effects of these drugs is a weakened immune system (reduced blood cell counts). This means a greater chance for infections, similar to people who are HIV positive. Whether this means if she can be around other kids we'll have to find out. We know of at least one case where a child received chemo, and he got to the point where he couldn't attend school due to the risk of getting infections.

Merel has been asking why God has made her sick. We don't have a good answe for her; just making sure that she knows it is not some sort of punishment for anything. If anyone has words of wisdom to offer here, feel free to let us know.

June 16, 1999

Today we decided that Merel will have chemotherapy which will be administered through an I/V. This treatment requires a weekly visit to the clinic which lasts from one to three hours. It will continue for about a year. At that point the chemo will be stopped and the expectation is that it can then be left alone for about two years at which point they'll switch to radiation. This way, we avoid having to do radiation at an early age. Better at 10 than at 7. Basically, anything you radiate will lose its ability to grow, so hitting a young body with radiation is not something you want to undertake lightly. There are many possible side effects to the chemotherapy as well; none of these treatment options are anything like a day at the beach.


Here is a brief recap of what has happened so far.

Back in April, Merel failed two vision tests at her school. Thinking that she would probably just need glasses, we scheduled an eye doctor visit and assumed that would be the end of it. But the lady that tested Merel could not figure out what was wrong with her eyes. She obviously had a lot of problems seeing out of her right eye. You know those charts they make you read, that have the really huge one letter E at the top, well she couldn't read that one big letter. None of the lenses they tried putting in front of that eye made it any better. Two eye doctors later, nobody had any idea still. The more I think about this, the less I understand it since these brain tumors are supposedly not that uncommon, and loss of vision is a typical symptom. After much waiting for test results, we were referred to Dr. Jon Davis, a pediatric ophthalmologist associated with Children's Hospital of Pittsburgh. He did a series of tests as well and finally decided that there was a high likelihood of a lesion or tumor in the brain, exerting pressure on the optic chiasm (the nerve center where information from the left and right optic nerves are combined). He ordered an MRI (Magnetic Resonance Imaging) test which took place the next day. The result of that test confirmed his suspicion, a brain tumor near the optic chiasm.

As we soon learned, brain tumors come in many different varieties. Some are fast growing, some are slow growing or don't grow at all. Treatment varies, some can be removed with surgery, others require chemotherapy ("chemo") and/or radiation, and some are left alone while they don't get any bigger and don't pose a threat of any kind. People always ask us whether the tumor is malignant or benign, because this is how we distinguish growths in other parts of the body from cancer. It turns out that this distinction does not exist when the growth is in the brain. All brain tumors are considered cancerous. The main reason for this is that even a growth which would be considered "benign" in other parts of the body can be very dangerous in the brain, since sooner or later it is bound to put pressure on some other part of the brain, which can cause any number of problems.

The same day of the MRI test, doctors took nine tubes of blood from Merel, who proudly told me on the phone that she didn't even cry at all. The blood tests were supposed to help determine exactly which kind of tumor we were dealing with. They ultimately decided that there were two or three possibilities left, and the only way to find out which was to do a brian biopsy. This took place on Friday, June 11 at Presbyterian Hospital in Pittsburgh. Under general aenesthesia, they drilled a tiny hole in her skull and took out three pieces of tissue. The exact location was determined with the aid of a laser guided probe which Merel had to wear on her head. The surgery took about two hours. Merel recovered well and has a single stitch on the top of her head. She is allowed to do just about everything other than swim for about two weeks.

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