Here is the latest news on Nicholas' health. On Monday, July 14th, 2003, Nicholas
was diagnosed with Stage 2
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
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
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
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
www.active.com/donate/ltnWA-AK/ltnHawk1. 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:
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, 2004We 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 19thSo, 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
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:
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
Sunday, July 25th, 2004It 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
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.
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, 2004So 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, 2004Can 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, 2004Hey, 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, 2004Holy 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
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.
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, 2004Well, 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
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, 2004Nicholas 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
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
This year, the walk is on Saturday, September 17th, 2005 at Greenlake in Seattle, and we'd love to have you
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
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 5th||On 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 13th||The lump went away and was replaced by a rash. We concluded it must've been some sort of
|May 19th||The lump reappeared.|
|End of May||The 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 1st||We 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 11th||Nicholas 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 14th||We 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 15th||Nicholas got a CT scan and a bone scan. Both were negative, showing the cancer had not
|July 16th||Nicholas 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 17th||Nicholas started his first round of chemotherapy.|
|July 18th||For 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 18th||Nicholas 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 26th||Nicholas 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 28th||Nicholas 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 3rd||Nicholas had a fever. When it got to 101, we called the hospital. They had him come
in for antibiotics and observation.|
|August 20th||Nicholas went in for his third round of chemo. He stayed for 4 days.|
|September 3rd||Nicholas 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 17th||Nicholas went in for his fourth round of chemo. This one lasted a week.|
|September 19th||Nick'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 8th||Nicholas 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 23rd||Nicholas finally went in for his fifth round of chemo. It is another week-long
|November 11th||Nicholas 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 26th||Nicholas began his final round of chemotherapy. It lasted 4 days.|
|November 29th||One 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
|November 30th||We got CT scan, biopsy and blood test results back today indicating no
trace of cancer!|
|December 1st||Nicholas finishes his last round of chemo!
|December 8th||Nicholas went back into the hospital with a fever and a cough. He was in
isolation for 3 days
|December 10th||Nicholas came home from the hospital for the last time. No more overnight
hospital stays! Yeah!
|January 15th||Nicholas had a round of scans and tests that show no sign of cancer. He is
cancer free and in remission!
|January 29th||Nicholas 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
I have archived some of the older blog entries, so those of us on dial-up won't have to suffer. Find the
greatest hits here:
|S ||M ||T ||W ||Th ||F ||Sa|
| || || || ||1 ||2 ||3|
|4 ||5 ||6 ||7
||8 ||9 ||10|
|11 ||12 ||13 ||14 ||15 ||16
|18 ||19 ||20 ||21
||22 ||23 ||24 |
|25 ||26 ||27 ||28 ||29 ||30 ||31|
|S ||M ||T ||W ||Th ||F ||Sa|
| ||1 ||2 ||3
|7 ||8 ||9
||10 ||11 ||12 ||13|
|14 ||15 ||16 ||17
||19 ||20 |
|21 ||22 ||23 ||24 ||25 ||26 ||27 |
|28 ||29 ||30 ||31 || || || |
|S ||M ||T ||W ||Th ||F ||Sa|
| || || || || ||
|2 ||3 ||4
||5 ||6 ||7 ||8|
|9 ||10 ||11
||12 ||13 ||14 ||15 |
|16 ||17 ||18
||19 ||20 ||21 ||22 |
|23 ||24 ||25
|S ||M ||T ||W ||Th ||F ||Sa|
| || || ||1 ||2 ||3 ||4|
|5 ||6 ||7 ||8 ||9
|12 ||13 ||14 ||15 ||16
|19 ||20 ||21 ||22
||31 || |
|S ||M ||T ||W ||Th ||F ||Sa|
| ||1 ||2 ||3
|7 ||8 ||9 ||10
||11 ||12 ||13|
|14 ||15 ||16
|21 ||22 ||23 ||24
||25 ||26 ||27|
|28 ||29 ||30 || || || |