And here is the Medi-Port which had been implanted in Merel's chest for over a year:
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.
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!):
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:
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:
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.
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.
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.
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)!
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.
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!"
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.
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.
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.
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.
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!
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.
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.
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.
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".
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!
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.
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.
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!"
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
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.
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.
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.
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:
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.
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.
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.
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.
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.
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 firstname.lastname@example.org .
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!
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.
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".
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!
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
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.
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
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.
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.
is always ready to pose.
Merel joins the group.
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.
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.
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.
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!
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.
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!
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!
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!
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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:
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.
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.
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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