Weblog van Niels

Most of you have heard but to make it official … Niels had another clean MRI scan at the end of May. That’s now 5 years after his last surgery and at some point this was an official goal. At the time, and looking at him now, we could not have hoped for a better outcome.

We want to thank everyone again who has been supporting us through all of this.

Cancun 2014

This is a late post but we had a scan in December 2013, and it was clean once again. The next scan will be in June 2014, which would also be his 5 year cancer free marker, if be.

Niels is doing great in all aspects. Well at school, well in his development. well in the house. He learned to bike this summer, within 20 minutes! (Thanks also to Evelien!) He was great at soccer – one very determined player. He is really nice to Mies, which is one of our cats. He wrestles too much with Finn.

One fun thing that’d I’d like to share. Just before Xmas we were in Victoria (Canada, BC). We have the kids a penny at a fountain so they could do a wish. They all faced their back to the fountain and took their turns. When we walked away Elke asked Niels what he wished for. He started smiling, told her “I wished for more pennies to have. See! I got one!” and grabbed that same penny out of his pocket.

Life is good!

Hello all,

We are late to post an update, once again, but we want to let you know that Niels’ latest MRI was at 4/4/2012, and … it looked great!
This was the first time when we had an MRI 6 months after the previous MRI. The next MRI will be in October 2012. Six month felt like an awfully long.

Margareth joined us (once again) to distract us and help relieve our stress as much as possible. Thanks Margareth!

Everybody – Thanks so much again for all your support.

Hello all,

I am taking charge of the blog again today. It is embarrassing how long it takes my mom and dad to update you these days. And I have written on this blog before, remember … (September 2009, and July 2009)?

Before I wrote about stuff that was happening to me and my body and I was more like a baby.  I don’t even remember a lot of what happened then. Except for the nosy (the thingy they kept putting in my nose).

Now I am a big boy.  I still have a hard time earning big boy stickers as my diaper is still wet in the morning. And I really did not do it, I think. I hide the diapers sometimes and tell my mom I want a sticker, but then she usually finds the diaper. The other day, I was playing and playing and my pants got wet. Yuck. I quickly made sure Annika did not see me and I put on some clean pants.  I don’t know how, but she noticed I changed pants. I told her that something was wrong with the other pants. She may not have believed me. (;

And now things are a lot more fun. My parents are a lot more relaxed too; they don’t freak out as much anymore when I whine or cry; it also means they don’t accept it when I keep crying to get my way. I really have to think of a new strategy. Anyway, my mom and dad keep saying that they see this Dizzely trip as a celebration and that the timing is perfect because they feel we are a bit out of the real danger zone. Well, that is not how I felt in Dizzely all the time. Some rides were super dangerous, but I was not scared. No, I was not. And I certainly did not show it, I think.

I am going to talk about our trip to Dizzelyland. This is where Mickey and Minnie Mouse live, in the Club House. This was my wish, they said. A long time before this trip, a few people came by our house and asked me about my wish.  Finn and Elke had just talked to me a lot about Dizzelyland and Femke always told me about Mickey and Minnie.  I really, really wanted to see them.  I said: “I want to see Mickey Mouse Clubhouse and Dizzely!”

Now we were finally going!

It’s October 27 (2011), boy, I am ready & I can’t wait any longer. Mom and Dad keep on telling me ‘almost’ but I want to go now, now, now!  The suitcases are ready, Elke and Finn are ready, Annika (our au pair, remember that I used to think it was an Oh Pear? Ha, Ha, now I am a big boy) is ready too.  Mom and Dad are the only ones grabbing some things here and there and pushing them into one of our suitcases. I don’t know what they were stressing out about because We – Are – Going – to – Dizzelyland.

Finally … a big black shiny car shows up and we’re off. Oh, My Gosh, that car is way shinier and way huger than my daddy’s car. But this car does not have any candy hiding in it. My dad’s car does, hah! As we drive away everybody seems as excited as I am. That’s okay… it’s still my wish.

From that point on I am treated like a celebrity. When people see our “Make a Wish Button” we get the royal treatment. I remember when we went to the Netherlands we had to wait in line, wait in line again, and then wait and wait in this big hallway, and wait in line again. Now, some people we do not know show us a shortcut and put us in front of all the other people waiting in the line where you have to take off your shoes and you have to walk through a thing—funny, it makes all these noises when Finn walks through—he had sneaked some quarters in his pants (got you!). We still had to wait, but this time in a very nice room with cookies and a pancake machine!   I got some presents and I could still watch the airplanes. I love airplanes! Always have, always will.

Then, there were some police officers waiting for me at the gate with a dog that I was allowed to pet. (“No!” my mom said, “I still don’t want a dog!”)  They also had a motor scooter thing on which I was allowed to stand. Super, super cool. And they all wanted a picture with me. J

Then I met the pilot. I was allowed to sit next to him in the cockpit and he asked some questions but I was too busy watching all the lights, buttons, and things. Wow! Then he wished us a good flight. My mom said “Thank You! You too!”  I think my mom is a bit scared of flying but she does not want us to know. Ha, ha. She and my dad looked pretty excited when they got first class treatment in the economy class. This nice guy gave them wine, special coffee, and free food (other people had to pay). You should have seen them smirk.

The hotel was great. Especially because they had this great place for breakfast with guess who??? Yes, Mickey Mouse, Stitch, Daisy, and more. I was so excited and my mom and dad were too. I had to laugh this time, because my mom always used to think, that people who wanted to be in pictures with Mickey and the others, were a bit crazy. You should have seen her …

I am a bit tired of writing.   I am going to only talk about a few of the rides. We did many, many, many rides.  Every time we wanted to go on one, we would just go in front of all the people. We walked past a sign that had this drawing on it, if I remember well Exit. That was awesome. And I now know that I love rides.

My favorite ride was “Goofie’s Sky School”.  I was not allowed on the upside down rollercoaster.  I ask my parents every day when we are going there again because I really want to go on the upside down roller coaster. That was not fair because Elke and Finn did get to go.

The funniest ride was Mickey’s Fun Wheel (the huge one). It went around very slowly. We picked the swinging seats, because all of us except my mom thought it would make the ride interesting. Yes, it was high, and I was scared at first, but then I looked at my mom. She had turned totally pale and kept her eyes closed most of the time. That was so funny I forgot I was scared.

There was one ride that was super scary, but I didn’t tell anybody I was scared. We did not really know what kind of ride it was going to be. I sat next to my mom. We left, it was super dark and we went superfast and I went back and forth and left and right. Fortunately my mom held me tight. I cried a bit. But when it was all done, I did not want them to know, and I laughed really hard. I call this the scary ghost ride (Note: Space Mountain), because in the middle of the ride a ghost showed up.

There was also a river with foam and bubbles that went up and down, and like this and like that, and big tubes with seats floating in there. (A.k.a. the Grizzly River Run.) And we stepped into one of those also. This was going to big fun, then the tube was pulled onto a hill … Oops. It was steep and somebody is going to be wet. Swoosh …And it’s daddy who got his pants all wet. Yay, a diaper for daddy! This was big fun.

At the end of two days we had an hour long discussion about our last rides in Disney (Read: Disney and Adventures). We were all allowed to pick one final ride. That meant 6 final rides. They were all talking and laughing because they wanted to influence each other and everybody wanted to have the last ride (btw they were super loud). I did not get it, and I already knew what I wanted.  I wanted to go on the one with the rockets that I really liked but they did not understand me. They thought I said rocks and they asked me: Do you really want to go on Space Mountain?  I did not know what that was. I showed with my hand/arm the movement that the rockets made, and my mom asked again, are you sure?, because it goes like this.  And she moved her hand really fast. Yes, I knew for sure.  When we arrived and I saw the carts I knew this was not what I  had chosen. This was the scary ghost ride. My body started trembling all over. I don’t know why. My dad stayed with me when the others went on the ride. When we got outside I saw the cute rockets and said: that is what I want! My dad took me there.

I loved this trip. I loved my wish. I loved the rides. I loved Mickey and Minnie (we also saw their houses!!). I loved all the other characters (see all our pictures).  I loved the shows, although I prefer rides. And everybody was so nice. Btw Universal the third day was fun too, especially the 4D movie with Shrek. It was a bit gross when Donkey sneezed and we could feel it in our faces. And it was great to do this with my family. We had a great time together. We were all very excited.

Hello All,

We wanted to let you know that Niels had a  clean MRI last week (October 12).  It continuous to feel like a miracle when we get back that result.

Margaret joined us (Niels + Wilbert + Aurelia) to Seattle’s Children’s Hospital. She arrived at our house very early and left her daughter with Elke + Annika (our ‘new’ aupair).

The scan went smooth  and we got the preliminary result around  11:00 AM. In addition to the MRI scans, the radiologist had included an MRS (Magnetic Resonance Spectroscopy) scan. From what we understood this is fairly new for this hospital, and it provides more detailed information. You can follow the Wiki Link to learn more about these scans. Anyway, this test suggested, yet again, that the white spot on the scan is not tumor. YEAH!

The other good news is that we can now switch to a 6 months MRI check in schedule. It is starting to look really good.  We have been clean for over 2 years now. Oh men, we are so lucky.

We are going to celebrate this good news in Disney next week (Oct 27-31). So perfect timing!   Today was the send-off dinner with the people of the Make-a-Wish Foundation. We went to the Rainforest Cafe. See pictures.

And finally: Niels is turning 4 on Monday!!

PICTURES

Today we walked in the Run of Hope. A great experience again! Thanks for walking with us.Special guest was Frederique. Next year we are planning to walk for Team Niels and Frederique.

Also thank you for all the donations!! We raised $1025 (excluding the company matches).

It is that time again. As you know, we organize a fundraising activity every year to celebrate Niels’ birthday (Oct 24, 2007).   This year, for the second year, we will participate (walk) in the Run of Hope Seattle in support of the Pediatric Brain Tumor Foundation.  

Please support TEAM NIELS!  

To sign up and participate: visit: http://www.runofhopeseattle.org/

 To sponsor us, visit our fundraising page: http://www.firstgiving.com/fundraiser/Niels/runofhopeseattle2011

 Please send this page on to anyone who might like to donate!

Hello all,

Summary: The result of the PET scan yesterday couldn’t have been better: not a tumor, quite conclusively.

Medical summary: The area to be looked for was in the white matter, which should show as black on a PET scan. The area showed just as black (=cold), which means there is no indication of increased activity = not a  tumor. The fact that the area was located in the white matter made it more clear that there is no activity, as it would have been easy to spot anything that wasn’t as dark as it’s surroundings.

Details: Aurelia and I had quite a tough 2 weeks as we had hoped for Niels to have crossed the 2 year mark with clean scans. That didn’t happen 2 weeks earlier and we’ve been feeling stressed, as you can imagine. Surely the doctors thought this was radiation side effect, but they weren’t nearly as convinced as before. Yesterday morning we headed to Seattle’s Children at 9 AM. Niels now knows that he’ll be doing a nap.

Niels has had MRI and CT scans before, but this was the first time he had a PET scan. It wasn’t until 11:20 until Niels got an IV, and they used that to inject radioactive glucose. We then had to keep him calm to make sure he doesn’t burn all the glucose well ahead of the scan. He fell asleep soon after I laid down next to Niels on the bed, we turned down the lights and put a warm blanket over us. An hour the nurse came to get us and I could carry him into the scanner room. Niels woke up and the drill was the same as with the MRI scans: He can pick a flavor (bubblegum) and the anesthesiologist puts that flavor into a mask. I hold Niels while he sits up and put the mask over his nose and mouth, and encourage him to blow up a green bag/balloon. Niels always does his best and soon enough the anesthesiologist turns on the gas. Few seconds later Niels closes his eyes, and I put him on the bed. With the PET scan, the bed can slide into the circular shaped scanner. After about 20 minutes later it was all done and they rolled the bed next to us. During those 20 minutes Risa had arrived to feed us, and distract our thoughts. Finally Niels woke up and we took him out to get him the ice cream that we had promised. Now waiting for the result …

At 2:30 we headed to our appointment with Dr. Geyer. When we were called in we met Dr. Ojemann, one of his brain surgeons in the hallway. We started chatting and told him how worried we were. It so happened that Dr. Ojemann had just been in the tumor board and he said “No need to worry. It’s all good. Don’t tell Dr. Geyer I told you.” OMG … For any parent out there it’s pretty easy to imagine that this feeling to us is better than winning any big number lottery. Not that I wish any of you to have to go through this but if you are in this situation, it’s an easy pick.

Not much later Dr. Geyer came into our the room with thumbs up. Little sad that we were already set with a big smile but he was happy to give us the details about this fantastic news. We discussed the follow up steps with Dr. Geyer and decided on an MRI scan 3 months from now to keep an eye on this area, now pretty certain to have been caused by radiation side effect.

Now we got a bottle of champagne on our way home. We couldn’t really enter since later that day the construction workes would finish our new wooden floor. We just picked up a few things and went for a sleep over with Karen and Gert, with whom we shared the champagne.

So … this is pretty conclusive. The ups and downs can indeed be compared with the roller coaster, but that’s about all that’s in common. All I am saying is that we should know better by now, and shouldn’t think this is the end of it. As a parent we’ll continue to be worried for now and ever. Niels isn’t considered officially cured until 5 years out but it would be highly unusual for the original tumor to come back at this point. We are hoping the side effects of the radiation are kept to a minimum and this area stops growing, and hopefully fades away. There isn’t conventional medication for this yet, and we’ll take advice for alternatives. So if you know something … feel free to let us know and we’ll be happy to consider.

We are just so happy and relieved right now, and we are looking forward to our vacation next week.

And on top of that, today our remodel has finished and we can start putting our furniture back this weekend. It looks already great without the furniture!

Hey Risa: Thanks so much for your support yesterday!
And Karen & Gert: Thanks for the sleep over last night! (We were really spoiled.)
And Margareth: Thanks for having Elke over.
And Reighly’s grandparents: Thanks for havign Finn over.

And thanks to all of you for all the interest, support and kind words that you have shown all along.

Wilbert & Aurelia

Hello all,

Here is a brief update. Tomorrow Niels will be getting a PET Scan around 9AM at Seattle Children’s Hospital. We should have the result around 2PM.

Okay … let me write something happy to relax my nerves.

Last Saturday there was an airshow in Arlington. Jessica (Niels’ nanny) has a friend Amanda, and her boyfriend is a pilot. They had arranged that Niels and I could join for a flight. We met them at the airshow and they brought us to a bi-plane. Guess what: It was open! I mean no roof! As in the wind in your face! How much more real can it get. Then the boyfriend asks us whether we would all want to go into this plane – the whole family. Finn excited and Elke scared. Well … they quickly swapped roles when the pilot did a roller coaster. The airplane went up and down and swifted left and right. So cool. Elke was super excited, and Finn was close to put his head between his knees. But mommy and daddy enjoyed this too much also so Finn had to sit this through. Niels seemed scared a bit but not too much. Of course, now both of them talk about this bug adventure. And so do we!

Amanda, Jason and Jessica … Thanks soooooo much for this great adventure !!!

Hello all.

The results of last week’s MRI scan were discussed at a tumor board meeting today,  and Dr. Yock from Boston provided her opinion in that meeting as well. Both Dr. Yock and Dr. Geyer think  that the area of concern is radiation effect, and not a new tumor. That’s great news. Radiation effect has it’s own negative side effects, so we certainly hope that this area will shrink instead of continue to grow, but it’s much better than a new tumor of course.

Other than it being late after radiation, they only see reasons why this is radiation effect. However, it’s not decisive and they both still suggest to have a PET scan to give that a chance to take away the remaining concern, probably next week. We would hope to see that this area doesn’t attract glucose (energy), which would mean it’s now very unlikely to be a tumor. If that would not be the case, it could still mean it’s either radiation effect or a tumor. Dr. Geyer would not like to think about that outcome, and simply proceed with a PET scan as an extra input. And we’d most likely have another MRI maximum 3 months from now, to monitor this area more closely.

The only decisive answer would be provided by having a biopsy, but they don’t see enough reason to justify such an invasive operation.

So, good news since experts at both sides of this country think that this isn’t a new tumor. But cautious and proceeding with more close monitoring.

I do want to add that this area showed up for the first time 9 months ago. in September 2010. It grew significantly through December 2010. Some more through March, and only 2mm through end of June, now about 18mm total. So the growth has decreased and if this trend continues this means this area starts shrinking from now on.

We’ll update with next week’s results. In the mean time we are looking to our 4 week trip to The Netherlands 2 weeks from now.