Nicholas' Health Update

Here is the latest news on Nicholas' health. On Monday, July 14th, 2003, Nicholas was diagnosed with Stage 2 Anaplastic Large-Cell Lymphoma, a cancer of the lymphatic system. He underwent chemotherapy at Children's Hospital for six months, and in February of 2005 was declared in remission. He remains cancer free to date.

Monday, January 9th, 2009

Today, Nicholas had his 5-year checkup. They told us a couple years ago that they were confident the cancer would never return, but the 5-year mark has always been a technical finish line we've been waiting for. Nick got a clean bill of health and is "officially" cured! We are all very happy and excited.

He did get some tests today, though not for cancer. These tests were for signs of side-effects from his chemotherapy. The big concerns are bone development and heart problems. There were no signs of either. He will continue to be checked for signs of side-effects for another decade, but they won't be checking for cancer anymore. That is gone for good.

To celebrate, we went out to dinner at The Ram. Nicholas got a big old piece of mud pie, and a magician guy totally blew the mind of his 4-year-old sister and cousins. It was one of the best nights out we've had in a long time.

Saturday, September 17th, 2005

The Walk was a major success. We haven't got a final tally, but it looks like we made our goal of $3000. We have to add in a couple corporate matching gifts and stuff, but it looks good.

We had 15 people plus 5 babies. Nicholas led the way most of the time. He felt it was his responsibility, since it was "his team." We had a good time and did some good for victims of Leukemia and Lymphoma.

I have a big "Thank you" to all of you who made a donation. I hope someday soon we find a cure, and no one will have to go through what Nicholas did. I keep saying it, but I am truly amazed at your generosity. I have done a good job of putting Nicholas illness out of my mind. He has been in remission for a year and a half now, and those long months of his chemotherapy seem another lifetime ago. But there are times, like tonight, where I am reminded of that experience. It is hard, but I also am reminded of what wonderful friends and family we have, and how lucky we are that you come through for us when we need it. Thank you so much.

Monday, August 15th, 2005

Well, it's been almost a year since I added an entry, but that is mainly because Nicholas has remained cancer free, so that is a good thing. We're coming up on the Light the Night Walk again, so I guess it's time I brought things up to date.

With some types of cancer, there is a real risk of recurrence at a certain milestone - the two year mark or the three year mark or something. During our stay at Children's, we saw many kids who had hit their mark and their cancer had returned. With Nicholas' cancer, the longer he goes without it coming back, the less chance he has of it ever returning. During his last scan and checkup in June, the doctor said that at this point, with Nicholas' medical history, there is almost no chance of his cancer returning. They will continue to do scans until the 5 year mark, but the doctor is pretty confident that Nicholas is cured. So how is that for all kinds of awesome?

Looking over the past blog entries, I see that last year I was talking about how Nicholas still had some worries about his cancer, and how he didn't like to think about his time undergoing treatment, because it scared him. How things have changed in a year. Last month, he said something that made his mom's and my jaws drop. He said sometimes he wished he was back in the hospital! We asked him what he meant and he told us how fun it was to be at Children's. He got to watch all the cartoons he wanted and play video games whenever he felt like it. Never let it be said that a child's mind is not resiliant.

So, as I said, Light the Night is coming up, and we want to raise $3000 to help find a cure for Lymphoma. We hope you can help us reach our goal, and maybe come out to Greenlake and walk with us. This is our 3rd year participating. The first year, back in 2003, Nicholas couldn't come because he was in the hospital at the time. Last year he walked and carried a survivor balloon, and this year he will again. We've set up a website for our team, Nick's Squad, at You can make a donation online there, and our team will get credit. You can also send a check or cash to us directly, and we will turn it in with our the rest of the money our team raises. If you want to send money, make checks out the the Leukemia & Lymphoma Society and send them to:

The Hawks
13230 35th Ave NE
Seattle, WA 98125

We will be walking in honor of Nicholas and our friend Michael Wolberg. Michael and his wife Kirsten and their kids visited us back in February. Michael's lymphoma is in remission, but he continues to have health problems that are related to his cancer and it's treatement. Michael and Kirsten helped us so much during Nicholas' treatment. It was great to see them, and great to see the two cancer survivors together.

Saturday, September 4th, 2004

We are set up for the Light the Night Walk. You may have already received an email from us asking for donations. If you haven't, here's the deal. The Light the Night Walk is a fundraising event for the Leukemia and Lymphoma Society. The LLS raises money for blood cancer research and provides support for patients and their families. We have been through so much because of this disease, and we want to do all we can to find a cure. So please go to this site and make a donation. You can do it with a credit card right over the internet. Please help, so someday, no child will have to go through what Nicholas has.

Last year, we had a great team that raised almost $3000. This year, with the new baby, we have gotten a late start and so we have set our goal a little lower at $2000. Please help us out. We will be walking around Greenlake on September 19th, carrying lighted balloons for the fundraiser, with several hundred others. If you would like to join us, check back here for details soon.

Thursday, August 19th

So, lots of news. The big news is that Stephanie is scheduled to have the baby on Tuesday, August 24th. That's just a few days away. I hope to have a new page dedicated to baby girl Hawk by then, and post some pictures as soon as I can. Look for them on Tuesday or Wednesday.

Other news, Nicholas had another checkup this week, with a CT scan. The doctor said that Nicholas is boring. That is very good. No interesting medical problems here. He is in full remission with no sign of cancer. He will be getting another bone scan in 3 months, and if that is all clear, we will be dropping down to checkups every six months.

Nicholas seems to have forgotten all about his ordeal, but once in a while, he will ask a question that reminds us that his chemotherapy had a huge impact on his life, and is still effecting him. He says he doesn't usually like to talk about when he was sick, because that just makes him scared. However, he recently asked his grandma about his chances of the cancer coming back. I think he must've overheard a conversation between Stephanie and I, as we mentioned it when we were discussing this week's appointment. We talked to him about it, explained that the chemotherapy sometimes doesn't work, and the cancer can come back. But we told him that right now the doctors couldn't see any sign of it coming back, and every day we go without that, the better it is. I told him that if it didn't come back before he was 10 years old, it wouldn't come back. This thrilled him. He was very happy at this news. I was suprised because I didn't think he had been worried about it.

Coming up in a few weeks is the Light the Night Walk, put on by the Leukemia & Lymphoma Society. It will be on Saturday, September 18th in Seattle, at Greenlake. Last year, we put a team together to walk in honor of Nicholas. He couldn't come because he was stuck in Children's Hospital getting treatment, but this year he will walk with a survivor balloon. We have been very busy with the impending birth in the family, and we don't yet have a team set up on the Leukemia & Lymphoma website. We soon will, but if you want to make a donation through our team right now, you can send a check made out to "The Leukemia & Lymphoma Society" to us at:

The Hawks
13230 35th Ave NE
Seattle, WA 98125

We will add it to our team's pile and donate it at the walk. If you live in Seattle and would like to join us at the walk, I will be posting more details on how to do that soon. Just keep the evening of September 19th free. It is scheduled to go from 6:00 to 9:00.

Well, that's the latest. Check back next week for pictures of what I'm sure will be the cutest baby since Madeline was born.

Sunday, July 25th, 2004

It is just over a year now since Nicholas was diagnosed. Hard to believe. It sometimes seems like a lifetime ago. And sometimes it seems like it was just yesterday. Wow, that's a mouthful of cliche. But it really is true for me. We were able to put the whole chemo process out of our minds. Stephanie asked Nicholas if he ever thinks about the time at Children's Hospital. He said sometimes, but not very often, because "I don't like to be scared. Besides, there's too many fun things to think about." Amen brother, I'm with you. When the chemo ended, we jumped backed into life. Steph and I had both been neglecting our jobs, our family, our house, whatever. Nicholas started kindergarten as soon as the doctor said it was okay. A lot of stuff had piled up and we were instantly busy. Catching up left little time to reflect on our ordeal. A couple months went by, and I had hardly thought about Nicholas' cancer at all. Once in a while, something would remind me. We'd take Nick to the pool and I'd see the scar where the tumor had been on his back. But then I'd just think how great he is now, how far he's come. Something positive like that. So that's when it seems like it was a lifetime ago.

Then, there are other times. Two weeks ago was a kind of perfect storm of cancer rememberance. It was the one year anniversary of Nicholas' diagnosis. It was his 6th month checkup, and it was the Make-A-Wish radiothon on a radio station here in Seattle. I was supposed to have had a blog entry about a month ago about the radiothon, but I am very lazy. Nicholas (and Stephanie and I) were interviewed by the Mitch and Lisa in the Morning on Mix 92.5 about a month ago. Nicholas had a bit of stage fright when they shoved the big-ass microphone in his face. They managed to salvage a bit in the editing room, and Nicholas and Stephanie and I were on the radio a couple of times. I was supposed to blog about this earlier so you all could listen and hear us and make a donation. Bad me!

Anyways, that week, I listened to two days of the radiothon. In addition to us, there were lots of other families telling similar stories. It brought everything back. I was suddenly reliving everything that I hadn't thought about for months. I heard a lot of people say a lot of the same stuff I felt. They talked about how their kids had to spend the summer in the hospital, missing out on so much, feeling like crap. They talked about how difficult it was for their families, with siblings shuttled off to friends and relatives, different shifts at the hospital for husbands and wives, etc. All the stuff that we felt. So, driving to and from work, I listened to the stories and thought about Nichoals' lost summer, and cried a lot. So that's when it seems like it was yesterday.

Nicholas' appointment came during that time. Going back to Children's Hospital for half a day brought back even more. Seeing the same rooms (waiting and exam) in which we had spent so much time last year was tough. Another thing that was strangely hard was seeing all the kids in the waiting room. Most were bald, but this time, Nicholas had hair. I felt kinda guilty that Nicholas is in remission. A friend pointed out to me something about survivors guilt, and how we identify with people going through the same stuff as us, like we are all on the same team, and we want everyone on the team to do well. It made some sense to me, and helped a bit.

I talked to Stephanie about all this. She said she was suprised it hadn't happened sooner. With the exception of a few bad days, I never got too emotional when Nicholas was undergoing his treatment. I was in denial a bit, I felt like I had to be strong for the people around me, and I figured I could defer the emotion to when and if the chemo didn't work. But I guess you can't really ignore the emotions that this kind of ordeal evokes. They come out sooner or later. (Can you believe I'm just posting this on the internet? It's a kind of therapy I guess. But usually you keep that private, between you and a shrink, not between you and the world.)

So I've blathered on about my emotional crisis and casually mentioned that Nicholas had his 6 month checkup, but never bothered to tell you how it went. Am I a self-absorbed or what? Nicholas is doing great. No sign of cancer. He's gained about 12 pounds since the chemo ended. He never lost any weight during chemo, which is a bit unusual, but he didn't gain a pound for 6 months, which is unusual for a normal kid his age. His hair has all grown back now. It's been back since about March. He will get another bone scan next month, and then his appointments will drop to once every three months, instead of monthly. The doctors say they are really pleased with his condition, and that he is in great health. I keep telling myself that's great, but the thing that always stops me is that he was in great health when we first got the original diagnosis.

The past couple months have been great. Nicholas has spent a lot of time playing with his friends and cousins. He's gone to Mariner's games, been out at Mom's house on Hood Canal palying on the beach, played baseball and gone swimming at the pool a lot. He is very close to learning to ride his bike without training wheels (we've been working on that the past couple days). It makes me happy to see him doing this stuff, and it also reminds me of what he didn't get to do last summer.

It seems our lives are really back to normal, but weeks like the one I just had remind me that "the cancer thing" is always going to be there. Maybe Nicholas will be able to forget about it. He's still pretty little, and kids are pretty resiliant. But I wonder. I know (now more than I did a couple weeks ago) it has made much more of an impact on me than I ever realized.

Wednesday, May 19th, 2004

So we finally made up Nicholas postponed scan. It was done last week on Thursday, but we didn't get the results until Monday. The doctor came in and said, "how come you didn't get a gallium scan?" Well, he had gotten one. It took 4 hours. I forgot to rent a video for him, so he got kinda bored during the process, poor kid. I was kind of annoyed, because we had to wait three days already, and, as you can imagine, we were kinda anxious. So the doctor said the blood tests and the CT scan were all good, and that she would track down the scan and give us a call with the results. She didn't make us wait, calling Stephanie's cell phone within about 10 minutes after we left. The scan was all clear.

So that's great news. We'll have another scan in three months, and every three months for the next 2 years, then they'll be every 6 months for the 3 years after that. It was interesting to us how casual the doctor was about going over the scan results. Obviously, it was something we were very concered about. But seeing how she handled the situation made us realize that Nicholas is truly in remission, and there isn't the urgency that was there when he had cancer. Which is a really good thing, if sometimes nerve wracking.

Tuesday, April 13th, 2004

Can you believe it's been three months since Nicholas was declared in remission? Time sure flies. This week was supposed to be full of tests and scans to make sure the cancer is still dead. The x-factor, however, is chicken pox. Despite both Nicholas and Madeline receiving chicken pox vaccinations, the disease has struck. Madeline has a very mild case, which means Nicholas has been exposed, which means they don't want him near the immunosupressed kids in the Hematology/Oncology clinic of Children's Hospital. Maybe next week. We had timed his appointments to coincide with his spring break, so he wouldn't have to miss any more kindergarten, but now that's not going to happen. The best laid plans, eh?

Madeline is not suffering at all. She barely notices she has chicken pox. She never had a fever and she only has minimal sores, mostly confined to the right half of her torso. She is missing her last week of daycare, however, since she is presumably contagious. Perhaps she can go in for a day after she has recovered, for a going away party or something. The pox ruined our Easter plans. We were all set to go to Spokane, where grandpa Marlin was having a big easter egg hunt in his back yard, and cousins and friends would all be there to play with. The kids were very disappointed. We went to Hood Canal instead. The kids got to have fun on the beach and go for a little boat ride and visit their other grandma and grandpa without exposing any other kids to health risks. It worked out pretty well, but we missed out on large family togetherness.

Stephanie has been laid off, pretty much on schedule. That's why Madeline is in her last week of daycare. We've known this would happen for almost three years. That's when the first talk of moving her office to the town of Burlington, about an hour north of Seattle, began. The move is pretty much complete, and they are laying off the redundant staff at the Seattle office. So, after 7 years at Regence, Steph is unemployed.

Tuesday, March 30th, 2004

So I promised some stories about the Disney trip, so here is one. The place we stayed was called Give Kids the World. It is a resort all it's own in central Florida. It is set up for sick kids in wish programs (there are more than just Make- a-Wish Foundation). It is 20 minutes from DisneyWorld, Sea World, and Universal Studios. They have about 80 villas at GKTW. You basically get your own duplex house. Our place had a kitchen, a washer and dryer, two bedrooms, and two bathrooms. Everything was set up for wheelchair accessability, and there was a needle disposal container in the laundry closet. But our villa was just the start.

The place is a mini amusement park in and of itself. There is a 9-hole miniature golf course with a dinosaur theme. There is a train that circles around the arcade building. There is an arcade building with video games, toy train, a pond with radio controlled boats. There is a movie theater, and they show movies twice a day. There is a carousel and a toy palace with a puppet theater and clown shows. There is a swimming pool that is wheelchair accessible. (They have pool wheelchairs that can go in the water, and a ramp going into the pool). A couple days a week they have horse rides, and at the lake they hold weekly fishing tournaments.

There was a cafeteria there, open for breakfast and dinner. It was all staffed by volunteers, mostly retirees, and everyone was so great. They would come around and get you more food or drink, or clear your plates for you. There were usually clowns hanging out during mealtimes. The food was cafeteria food, and not the best, but it was okay. Breakfast was very good. GKTW also has an ice cream parlor. One day, Nicholas had a banana split for breakfast. I know it's extravagant, but it was his big wish. (The ice cream parlor also had deli sandwiches for lunch). All the food was free.

We spent one day just at GKTW. I think it was our 4th day, and the kids were pretty exhausted from all the walking at Disney and Universal Studios. They took power naps that day. There was much to do at GKTW and we were able walk back to our villa and watch TV or have a snack when we got tired. Nicholas played mini-golf every day, usually after breakfast and before we left for the big parks. On the day we stayed home, he played a lot of golf. He's just like Tiger Woods, if Tiger played on courses with snorting T-Rexes.

We also made heavy use of the pool. It was the first time Nicholas had been swimming since his diagnosis. The doctors discourage swimming for kids with central lines, and he had had his line taken out just two weeks prior to the trip. One night, GKTW had a pool party. Dinner was served at the pool instead of the cafeteria. It was a barbaque affair. They had a DJ playing music and some characters from the big parks were there. There was a big sprinkler area, where kids could run through various contraptions that squirted them. But it was February, and even in Florida it was a little too cold for that. Nicholas was in the pool for about 2 hours that night. He absolutely loved being able to swim again. He didn't want to get out of the water to eat dinner. I was almost in tears seeing him so happy.

We met a few other people in the same boat as us. One boy, about the same age as Nicholas had just finished cancer treatment. He came up to Nicholas on the patio and asked, "Did you have chemo?" He had noticed Nicholas' bald head and scar from the central line. The boy had the same small red spot on his upper right chest as Nicholas, but he had short hair grown back in. It was the first time swimming since diagnosis for this boy as well. We talked with his parents while the boys played in the pool together. They were nice people from the mid-west, and there story was a lot like ours. Their son's cancer had been in the brain and it has a much higher relapse rate. It made us feel lucky that Nicholas 'only' has a one in three chance of the cancer coming back.

Kids sure are funny. They have no inhibitions and lots of curiosity. All the kids at GKTW have serious medical problems. Many are in wheelchairs or have respirators or other machines attached to them. I know we got more than a few stares when Nicholas was bald from the chemo. He never noticed that or at least never cared. So all the sick kids stared at each other a lot and whispered to their parents "what's wrong with that boy?" or "what's that thing plugged in to that girl?" You would think that having lots of expereince being pointed out in the same way might discourage a child from saying something like that, but it didn't.

Well, it has been a month and a half since we were in Florida. Nicholas is back in school every day and his hair has grown in enough that he looks like a normal kid with a short haircut. Telling this story has made me realize how much I have forgotten and put behind me. I don't think about Nicholas' cancer at all any more. It's suprising to me how much it's out of my thoughts. I guess that's a good thing. Nick's cancer was such a difficult ordeal, and it dominated our lives for so long. Now it's pretty much over (knock on wood), and it is replaced with a normal childhood, a normal school schedule, normal friends, a normal 6-year-old life. You can't beat that.

Sunday, March 21st, 2004

Hey, it's baby city around here. I know the word has been going around, but if you haven't heard, Stephanie is pregnant. She is due September 1st or thereabouts. I can't believe we went and got pregnant in the middle of all of Nicholas' stuff. And I really can't believe we're going back to Diaperville. I really thought we had left that place behind for good.

In additional baby news, Stephanie's brother Ben and his wife Traci had a boy on Thursday. Check out pictures here. Traci gave birth at around 7:30 in the morning after about 24 hours of labor. Mama and son are both doing great. The baby is named after his grandfather, Roger Sauvage. Madeline was excited that we now have two Roger's in the family, baby Roger and Poppy Roger. She told us all she would have liked it better if Ben and Traci had given the baby the middle name of Roger and the first name of Poppy, so we would have two Poppy Roger's in the family.

The baby is very cute and tiny. He has little thin Sauvage family lips and a little baby butt chin (cleft). Ben was delighted that the baby arrived before the NCAA tournament started, so he didn't have to miss any basketball just to be there for the delivery of his first-born child. So little Roger is a March Madness baby, and he has had the tournament on in his room basically since he was born. I suspect he will grow up to be a big basketball fan.

Monday, March 15th, 2004

Holy crud, it's been a month and a half since I last updated. I've probably lost my readership, huh? No one is checking here daily anymore for updates, I bet. Sorry.

The return to real life has been a bit bumpy. Both Stephanie's and my work have put us on notice that since Nicholas is no longer undergoing treatment, they actually expect us to start showing up again. On time, even. I can't complain, both our companies have been extremely flexible and supportive during our ordeal, and they are right, it's time to get back to work. But that has proved to be a bit jarring for us. It used to be that we could let just about anything go. Big meeting this week? Sorry, my son's health takes priority. House a mess? Too bad, Nicholas won't be left alone at the hospital. Family get-together in Eastern Washington? We can't make it, we have to stay close to the hospital in case of a problem with Nicholas.

Now, things are different. We are back to juggling a bunch of competing priorities. School, work, friends, family, etc. Added to that is a large sense of indebtedness to a lot of people who helped us through the last nine months. For example, my sister visited us from Spokane every month that Nicholas was in chemo, usually cleaning our house during her visits. She wasn't the only visitor from Spokane, just the most frequent. We hadn't been to Spokane since Nicholas' diagnosis. So I feel like I owe many family and friends some visits to the eastside. (We have taken one trip to Spokane, but in the 48 hours we were there, I visited less than 1/2 the people who I wanted to visit.) Anyways, I feel very busy and a little overwhelmed by real life.

Still, I am going to make an effort to get this site up to date. I don't want to wait until I have the whole story of the Disney trip and Nicholas' school life and everything that's happened in the last month and a half. If I do that, I will never catch up, and if I do, you would have several thousand words to read all in one helping. So I will try to add two or three entries a week for a while, and give you some highligts and catch up gradually. Here's hoping I can stick to that schedule.

So, some big news from last week is that we got in on another Make-a-Wish deal. In conjunction with the UW athletic department and King 5 TV, Make-a-Wish has this Lucky Dawg program. One kid gets to be the honorary team captain of the University of Washington football or basketball team for a game. Nicholas was selected for this, and since it is basketball season, he got to be the captain of the cinderella story of the NCAA. What that entails is that Nicholas got to go down before the game and sit on the bench with the team. When the starting 5 were announced, they also announced Nicholas and he got to run out onto the court in front of a packed Hec Ed pavillion. When the team huddled up, Nicholas was right there in the middle of it. He also got a basketball autographed by the team and a T-shirt. He got to hang out with the cheerleaders and the mascot. And he got to hook up his family with 4 tickets to the sold-out game.

This actually happened last week, when the Huskies played Cal. It was before they beat Stanford and made it to the final game of the Pac-10 tournament and got into the big dance. There were serious questions about whether the Huskies could beat Cal. Both teams had similar conference records. So it was a huge game for the UW. It was the biggest game in Mike Jensen's college career up to that point (they've had a couple bigger games since then). And what did he do to get himself psyched for the game? He spent the 5 minutes before the tipoff sitting on the bench talking to Nicholas. It keeps on surpising me how great people are.

Nicholas was really thrilled to get to go down courtside before the game. Chatting with the cheerleaders and the mascot was a lot of fun. But when he went out and sat down on the bench, I think it was pretty overwhelming for him. He looked kind of nervous out there in front of ten thousand basketball fans. He stuck pretty close to Mike Jensen when the starters walked out onto the court, and I think he was relieved to walk off.

Then we went back to our seats and watched a great game. Nicholas says that basketball is now his favorite sport, eclipsing baseball. Partly that is because his Uncle Ben gave him a kid-sized hoop, and Nicholas now shoots baskets with me or Stephanie or Ben 4 or 5 times a week. And partly that is because of his night as honorary team captain.

Okay, there's a fun, happy story for y'all. I'll be back in a couple days with a tale from Disneyworld, I promise.

Monday, February 2nd, 2004

Well, I'm getting pretty bad at doing updates. I used to average about 3 updates a week, but in the last month and a half, it's dropped off quite a bit. That has a lot to do with the treatment wrapping up and life returning to normal. I have to say, it's pretty great.

Nicholas is loving school. He has already joined the children's choir and sang at mass two Sundays ago. He is making lots of friends and having a great time. He is returning to being a regular kid pretty quickly. It's great to see.

Nicholas had his Hickman line removed on Thursday. He was really freaked out about being sedated. He hates that. When we went into the operating room, Nicholas got hysterical. He was crying, and he got mad at Stephanie and I when we tried to distract him. It was only a couple minutes before the anesthetic put him out. The operation was pretty quick, and we were only in the hospital for a couple hours in total.

Nicholas turned 6 on Wednesday, and before that, we had a party on Sunday. Nicholas' party was at the Spin Alley bowling alley. It was hilarious to watch all the little ones bowl. Madeline and her cousin could hardly get the ball down the lane. Nicholas and his friends kinda slammed the ball down at the end of the lane, and it would roll slowly down the lane. It was very cute.

We had a nice dinner on Wednesday with family and cake, too. It's kind of symbolic how he turned 6 just after the tests showed the cancer is gone. Hopefully, this whole ordeal has come to a complete end at the end of his 5th year.

The nice folks at Make A Wish Foundation got back to us. We will be going to Disneyworld on February 13th. We are all very excited about it. Nicholas' excitement waxes and wanes. I don't think he really understands what Disneyworld is like. We watched a video that showed some of the rides, but it is still pretty abstract to him. I am pretty glad he went for a trip instead of something like a ton of toys or something. It will be real nice to get away and spend 6 whole days together as a family. The whole ordeal of Nicholas' treatment over the last 6 months has really taken it's toll on us. We have been forced to spend so much time apart. Madeline spent lots of weekends and more at friends and relatives houses. When Nicholas was in the hospital, Stephanie and I spent every night apart, with one of us staying at the hospital him and one of us at home. Now that things are back to normal, there is work for Stephanie and I and school for the kids. I just think it will be really good for our family to spend a few days together relaxing and having fun.

Well, seeing how my blogging output has slowed, I don't expect to update this again until after we get back from Disneyworld. But then, I should have a of happy things to talk about and some fun pictures, too.

Tuesday, January 20th, 2004

Nicholas is back to school. He was pretty nervous in the morning when we dropped him off. He was very quiet, and wouldn't stop holding my hand as the class lined up outside and went into the classroom. I was probably more scared than he was when it was time for me to leave. He went for the whole day, not a half day, and he had a great time. He was very excited when he got home, talking about all the kids with whom he made friends. He even had some homework. The kids were all curious about his bald head, but Ms. Prepotente (pree-pa-tent-tay, ain't that a mouthful for 6-year-olds) had talked to the class last week about Nicholas illness. It gave them something to talk about, break the ice, or whatever kindergarteners do.

We found out today that Nicholas' line will be removed on the 29th, a week from Thursday. Nicholas is happy to be free of the thing, but he is very nervous about the procedure. He doesn't like to talk about it. He really hates these kind of procedures. Still, he can't wait to go swimming or go in Ben and Traci's hot tub.

In other news, Roger is home with us. He is recovering from his surgery pretty quickly, and gets around the house with no problems. He has daily radiation treatments at the hospital, but they only take about a half hour. They will last for about a month. Also, there is a meeting with the doctor coming up on Thursday. They'll go over the chemotherapy plan then, if I understand everything correctly (Stephanie has pointed out that I can get the details wrong here. I really should clear this stuff with her before I post it.) Anyway, he is feeling pretty peppy, from what I can see. The kids love having him around, too.

Karen is still at Harborview hospital. Because of the holiday weekend, they haven't been doing much but waiting and running scans. Today things seemed to finally get going. She had surgery in Bellingham last week, and it looks like they might have to do that surgery over again here in Seattle. She is in a lot of pain, so Marty hopes that they will do that in the next day or so. In the meantime, he is staying in Rogers apartment when he is not at the hospital.

That's the news, most of it good for a change. We are all thankful Nicholas is healthy again and his life is getting back to normal, and we are all praying for Karen and Roger.

Frequently Asked Questions

What's going on?

Nicholas was diagnosed with anaplastic large-cell lymphoma, a cancer of the lymphatic system. It is Stage II (out of 4). The cancer was localized in a lump on his back and tests show that it hadn't spread anywhere else. Nicholas started agressive chemotherapy on July 17th and continued through December. In early February of 2004, bone and CT scans showed no trace of cancer and he was declared in remission. If he remains in remission for five years, he is considered cured. As of June, 2005, there is no trace of the cancer returning.

What can I do?

A lot of people are offering help and asking what they can do. We really appreciate this. It is really moving how much support we are getting from friends and family. We really appreciate you keeping us in your thoughts and in your prayers.

Since Nicholas' battle with cancer, we have become invovled in the Luekemia & Lymphoma society. We have participate twice in their annual fundraiser, the Light the Night walk. We are participating again this year. If you would like to make a donation, or just find out more, you can go to

This year, the walk is on Saturday, September 17th, 2005 at Greenlake in Seattle, and we'd love to have you join us.

What about Madeline?

Madeline did great through Nicholas' ordeal. She spent a great deal of time at relatives, and for a while after Nick's hospital stays ended, she was very clingy and stayed close to her mother. She is doing fine today.

What about your work?

Both Stephanie and I had very understanding employers. Nintendo and Regence were wonderful and flexible, letting us have as much time off as we needed. Many people at Regenece donated vacation time to Stephanie to cover her long absences.

What is chemotherapy like?

Cancer is basically mutant cells that grow out of control. Chemotherapy is a mixture of medicines that attacks and kill these cells. As an unintended consequence, it also kill other cells that grow rapidly. There are three main groups of cells that grow rapidly. The first is hair cells. Most cancer patients go bald during chemo for this reason, and Nicholas will be no exception. His hair will grow back when the treatment stops, and there will be no permanant damage to his it.

The second group of rapidly growing cells is the cells of the mucous membranes. This is the lining of your mouth, throat, stomache, etc. Nicholas may get sores inside his mouth and stomach later in the treatment. These can get severe, but there are techniques for dealing with them, and while they can be really painful, there should be no permanant damage.

The last group is bone marrow cells. Bone marrow produces new blood cells, so when the bone marrow is damaged by chemo, the blood cells stop being produced normally. Side effects from this include anemia, difficulty clotting, and susceptability to infections. These last two can be dangerous. In particular, even a small cold can be life threatening if a person's white blood cells are very low.

Nicholas is given chemotherapy mostly intraveneously, through his Hickman line. The process lasts anywhere from 5 to 7 days, depending on which drugs are being given and how quickly Nicholas passes them through his system. He is in the hospital for the entire time. Some other drugs are given by pill, and one drug is given by subcutaneous injection, a shot in the thigh.

Timeline of events?

May 5thOn a trip to Spokane, we noticed a lump on Nick's back. . It looked like a bad bump, but he couldn't remember how he got it. It was a little sore.
May 13thThe lump went away and was replaced by a rash. We concluded it must've been some sort of bug bite.
May 19thThe lump reappeared.
End of MayThe lump hadn't gone away and was getting biggerOur pediatrician, Dr. Hilgers, examined the lump. He determined it was a cyst that would have to be surgically removed. We got a surgical referral to Children's Hospital.
July 1stWe had our first appointment with the surgeon. By this time, the lump had grown to about the size of a small egg. It was red and the skin on it was dry and peeling, as if it were sunburnt. It was very painful if Nicholas bumped it, but otherwise fine. The surgeon, Dr. Sawin, tried to drain some fluid from the lump, but only a little blood came out. The whole process hurt and freaked out Nicholas, so the doctor didn't push the issue. He prescribed antibiotics, hoping that the redness and swelling would go away, and scheduled surgery for ten days later.
July 11thNicholas had surgery. After the operation, the doctor told us that the tissue inside was not at all what he expected. He said it was a tumor of some kind,but that that could mean a whole range of things from a minor problem to something life threatening. He told us we would know more on Monday, after biopsy results were in.
July 14thWe met with Dr. Jake Garcia in pediatric oncology. He gave us the diagnosis of anaplastic large-cell lymphoma. We didn't learn a lot on this day, as Nick was with us and he was very frightened. He had some X-Rays and some blood taken for more tests, to determine the extent of the cancer.
July 15thNicholas got a CT scan and a bone scan. Both were negative, showing the cancer had not spread
July 16thNicholas went to daycare for his last day in the morning. His class went on a "bug hike", and Nicholas said goodbye to his friends. In the afternoon, Nicholas had his second surgery in a week. A central line was put in, which is a tube coming out of his chest going into his blood veins. He had a bone marrow aspiration and a spinal tap to check for cancer in those places. Both of those tests showed the cancer had not spread.
July 17thNicholas started his first round of chemotherapy.
July 18thFor the first time in 3 days, Nicholas went home from the hospital. His next round of chemo is scheduled for Thursday, six days later.
July 18thNicholas went back to the hospital for his second round of chemo. This round was much longer than the first. He will be hooked up to the IV for the next 5 days, constantly getting medicine.
July 26thNicholas showed some side effects. He complained of nausea, and threw up a couple times. Also, he had pretty bad muscle pain in his jaw and neck. Medicine helped counteract the side effects, but he spent a few hours in pretty bad pain.
July 28thNicholas finished his second round of chemo and went home. Yay! He will go back to the hospital for tests in 4 days. Also, he will probably get a fever or infection that will send him back to the hospital for an overnight stay sometime in the next week or two.
August 3rdNicholas had a fever. When it got to 101, we called the hospital. They had him come in for antibiotics and observation.
August 20thNicholas went in for his third round of chemo. He stayed for 4 days.
September 3rdNicholas went back into the hospital with a bacterial infection. His temperature had been hovering at just under 101 degrees for several days. That's the threshold for going to the emergency room. However, because the low-grade fever was persistant, the doctors admitted Nicholas to the hospital when we came in to check his blood counts.He stayed 2 days.
September 17thNicholas went in for his fourth round of chemo. This one lasted a week.
September 19thNick's Squad walked around Greenlake for the Light the Night Walk to raise money for the Luekemia & Lymphoma Society. Nicholas was in the hospital and he missed it, but Stephanie and I walked with about 20 friends and family. We raised over two thousand dollars.
October 8thNicholas was scheduled to start his fifth round of chemo today, but his blood counts hadn't rebounded enough, so it was postponed. It would be 2 more weeks before his counts would be high enough to begin round five.
October 23rdNicholas finally went in for his fifth round of chemo. It is another week-long treatment.
November 11thNicholas went back into the hospital with a cold. Because of his immunosuppressed state, he stayed for a couple of days for observation and antibiotic treatments.
November 26thNicholas began his final round of chemotherapy. It lasted 4 days.
November 29thOne of Lark's favorite websites, Penny Arcade, started a toy drive for Children's hospital. They posted a letter from Lark in support of the cause.
November 30thWe got CT scan, biopsy and blood test results back today indicating no trace of cancer!
December 1stNicholas finishes his last round of chemo!
December 8thNicholas went back into the hospital with a fever and a cough. He was in isolation for 3 days
December 10thNicholas came home from the hospital for the last time. No more overnight hospital stays! Yeah!
January 15thNicholas had a round of scans and tests that show no sign of cancer. He is cancer free and in remission!
January 29thNicholas had his central line removed. He was sedated for the short procedure and only spent a couple hours total in the hospital.


Timeline of events

Lark's blog

Blog Archive

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