Here is the latest news on Nicholas' health. On Monday, July 14th, Nicholas
was diagnosed with Stage 2
anaplastic large-cell lymphoma, a cancer of the lymphatic system.
I have archived some of the blog, so those of us on dial-up don't have to wait for
long load times. Catch the greatest hits here:
Nicholas' Cancer Treatment Blog Archive
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Wednesday, July 30thNicholas is getting spoiled. But I guess if you can't get
spoiled when you're going through chemo, when can you? We had two really fun days.
First, I stayed home from work to play with him. We went to Nintendo to spend the first of
three company store gift certificates that were a present from the guys at NTD. We decided he
can use one after he's done with each chemo treatment. He got Donkey Kong Country for the
Gameboy. I think he had more fun shopping than getting the actual game.
After that, we went to the movies to see Spy Kids 3-D. We sat near the front, because we are
trying to stay away from crowds because of Nicholas' immune system status. That turned out to
be a mistake, I think, because the 3-D effect works better if you sit further back. The movie
gave me a headache, and we both took off our glasses before it was done. Still, the movie was
cool. A couple action sequences really stood out, one with giant robots battling in an arena
and the other a futuristic race with really imaginative vehicles. I had wanted to see this movie
because one of the computer graphics artists from NTD left Nintendo last year to go work on the
film. I even saw Cid Newman's name in the credits. I've never known anyone in a movie's credits
We got home to find a picture emailed from my friend
Janelle. I went to high school with Janelle, and I see her and her husband Dave and their kids
a few times every year. They live in Spokane, a few blocks from my Dad's house, and we usually
see them at one of my Dad's parties. They have been really supportive, and they wanted to do
something, so Dave and his son Jacob got the haircut of solidarity. Nicholas was pretty excited
to see the picture. I keep getting surprised by the love and support Nicholas continues to get.
It's really amazing.
Today, Nicholas got to go to the park. It's been in the 90's here in Seattle, which is
quite a heat wave for us. Stephanie found out what time they clean out the Greenlake wading
pool, and took Nicholas down right after it was refilled. He got to splash around for a while,
and he had a great time. In the evening, we returned to Greenlake to visit with Stephanie's
cousin Susanna and her family, who are in town from Aspen, Colorado. Two of their children
have cystic fibrosis, and Nicholas and Sophia exchanged stories about being in the hospital.
Then all the kids played on the playground toys and had a blast.
The day ended with Nicholas getting the first of his GCSF shots. He has been dreading it for
the last few days. Last night he woke up crying and he told me he was worried about the poke,
as we euphemistically call injections. We got through it, but it was pretty traumatic. This
is a problem, as he has to get a shot every day until his blood counts get back to normal. I
hope he will get used to it quick.
Monday, July 28thNicholas came home today! He will be home until sickness or
fever sends him back. That is expected to happen in about a week, when his blood counts start
dropping and his immune system gets depressed. There is a slim chance it might not
happen, and he won't be readdmitted until his next chemo session in about 3 weeks, but the doctor says
that's pretty rare.
For the last two nights, Nicholas has gotten very nauseous in the evening. This lasted for a couple
hours both nights. He threw up much of what he ate. Then they gave him some Benadryll to make his
stomache feel better. Then he slept lightly, waking up occasionally to say how much he hurt. Then
we woke him up to give him his prednisone, which he promptly threw up. Then we let him sleep for
another hour, and woke him up to make him take the prednisone again. That happened two nights in a
row. I layed on his bed next to him while he tossed and turned and whined about the pain. It was
very sad for me, and rough for him. I guess it's hardest for me because I know there will be a lot
more stuff like this over the next 5 months. The doctors can't say for sure when he will feel bad
and what it will be like, because each patient reacts differently. But they gave a huge laundry list
of side effects, so my mind is full of "what might be."
I will have to give Nicholas daily shots of medicine starting on Wednesday. This will continue until
his blood counts get to the right place. The needle is small, the same kind that diabetics use
to administer insulin. Still, Nicholas is terrified of the needles. Stephanie and I had to get training
from the nurse on how to do it, and we had to each demonstrate it one time. The nurse volunteered to
be the test subject, but we decided to do it to each other, so we would know what it felt like.
I am really glad we did, because it doesn't really hurt at all. I didn't realize how easy it would
be. Nicholas is dreading the procedure, but I think after going through it one or two times, he should
realize it's not so bad.
Stephanie's friend Kirsten mailed Nicholas
a cool present. I should say, Kirsten's husband Michael went through chemotherapy last year for
Non-Hodgkin's Lymphoma, so she has been a great source of information and support for us. She also
has great ideas on fun stuff to do in the hospital. She sent Nicholas an
i-Zone camera. It is a polaroid camera, where the film develops by itself right after you take the
picture, and the pictures are little stickers. Nicholas has been taking lots of pictures at the
hospital. He took a bunch of shots of his stuffed turtle, and one of his favorite nurse. He's been
sticking them on his notebook and is having lots of fun with it.
Life in the pediatric cancer ward is both inspiring and depressing. We were in a 4-bed room, and had
some neighbors who were going through chemo, too. One was a boy who is a year-and-a-half old. He is
bald from the chemo. Our other roommate is a two-and-a-half year-old boy, who looks pretty sick. He
had two bloody noses while we were there, and since the chemo kills off the cells that make blood
clot, the bleeding wouldn't stop. Both times it took several hours to get things under control. That
boy's parents can't spend that much time in the hospital, so he is often alone. The nurses do what they
can, but they aren't really there for that sort of thing. They have their hands full monitoring all
their patients and making sure everyone is getting the right medicine at the right times. There are
volunteers who come by to play with the kids, and they are great, but there aren't that many of them.
I think we are really blessed that we have such great employers and such great friends and family
that we can be there for Nicholas through this all.
Stephanie's sister Rachel and sister-in-law Traci came over on Saturday and cleaned our house! It was
so great. They had the carpets cleaned and moved some furniture around and made cookies. I was only home
for a couple hours this weekend when I wasn't sleeping, so getting stuff taken care of is difficult.
Cleaning and grocery shopping and all that are getting neglected, but I'm definitley not making that
my priority. It is really nice to have some of that taken care of so we can focus on getting Nicholas
Saturday, July 26thOne of the kids left our room yesterday, and we moved Nick's
bed into the vacant spot, away from the door. That helped with the sleeping a lot. I didn't wake
up every time a nurse walked in the room like Stephanie did the night before. Also, with one less
patient, the room was just generally quieter.
A big gift basket arrived from the great folks at Stephanie's work, Regence Blue Shield. Thanks
gang. Nick said "getting the all the stuff" is the best thing about being in the hospital. There
were coloring books, games, Gameboy games and my favorite, some chocolate chip cookies. Nick spent
much of the day playing two of the games, bingo and go fish. Nick had lots of visitors. We ended up
with a crew of 6 in the play room playing bingo, and some of the other patients joined us. It was fun.
One of the drugs made Nicholas pretty naseous, and he threw up his lunch. He isn't eating much,
so that was too bad that he threw up the only meal he actually ate. Later, after he took his "icky
medicine" (prednisone), he threw up again. The poor kid ended up having to take it twice, the
second time after they gave him some medicine to quiet his stomach.
We broke the news to Nicholas that he will have to start taking some medicine by shot. The GCSF
treatment helps his blood counts get back up faster, but it is given by a shot in the thigh. It
can't go in through his central line. He will get one shot a day for a while. He is not happy about
it, nor am I. He gets it 48 hours after the chemo ends, so he'll be getting it at home and Daddy
will be administering it. He was pretty scared when I told him, but we talked about it for a while.
He was relieved that he wouldn't be getting it for a couple of days. We also talked about how Mommy
and Daddy had worked with him on taking the icky medicine and changing his bandage (from his lump
surgery), and we made those things not so bad, and we would do the same with this shot. That made him
feel much better. I'm very glad that he trusts us so much.
The prednisone, which is a steroid, is supposed to cause mood swings and outbursts, and I saw a
little of that yesterday. Nicholas was playing a video game on the play room Nintendo, and he got a
little frustrated. He started yelling that he hated the game and wanted to quit. It was really out of
the blue, his own little 5-year old 'roid rage. Good preparation for a career in major league
Thursday, July 24thNicholas is back in the hospital for his second round of
chemo. Nick is sharing a room with 4 other kids. The cancer ward is very crowded right now. Since the
kids can't play outside or anything, they have some bicycles in the cancer ward on which the kids
can ride. Nick took a lap around the ward today, with me pushing his IV tree behind him. It was
We got some news today that isn't as great as it sounds, but it is still good. They did another CT
scan today, and the tumor is greatly reduced in size. This is what they expected. They compared
the CT scan to one from last week and needed to see a 25% reduction in the tumor. This shows that
Nicholas is responding to the treatment. A small percentage of kids don't respond to this kind
of treatment, and if they don't see a dramatic reduction, then they know they need to try
something different. This doesn't mean that his cancer is almost gone or anything, but it's
a positive sign that Nicholas is responding.
Wednesday, July 23rd
Nicholas' hair will be
falling out from the chemo in the next week or two, so he decided to have his head shaved first.
I offered to do the same to show my support. Nicholas asked Stephanie's friend Tina to cut his
hair, and he asked me to go first to see if it would hurt. Nick also asked his uncle Ben to get
his hair cut, too. So Tina came over tonight and shaved our 3 heads.
Nicholas goes into the hospital tomorrow for his second round of chemo. The first one was just
a baby round. This will be the real deal. He will be in the hospital for 5-7 days, and it should
be another 5-7 days before the side effects get really bad. Nicholas doesn't want to go to the
hospital, but knows he has to in order to get better. He is very brave.
Monday, July 21st Madeline went back to daycare. Nicholas stayed home. While
he is healthy now, the doctors don't want him playing on the playground where he can damage
his central line, or pick up a cold. Stephanie talked to the doctors about some medication
for Nick's leg cramps. They said the cramps don't sound like a reaction to the Vincristine, but
maybe are just tense muscles from the bone marrow aspirations. They recommended heat as a treatment,
and also lots of activity to stretch out his muscles and get them back to normal. Steph walked around
Greenlake with her sister and her sister's friend, and tried to get Nick to walk as much as possible.
He didn't want to at first, and complained for a while, but after a short time, he was running and
laughing and having no pain.
Later, Nick's cousin Benjamin came over and the two ran around the house having fun. It was really
great to have him acting like a normal kid and having fun. Nick's friend from school, Daniel, came
over at dinner time and his mom brought teriyaki chicken (thanks Becky!). The kids ran around and
played and had a blast. Nick hasn't been really sick or debilitated, but he has been pretty sad and
scared. I'm glad he could forget his fears for a day and have fun.
Sunday, July 20thThe closest thing to a normal day in a while. My sister Maria
visited with Nicholas' cousins Zolman and Jack. Jack had a cold and didn't stay long. The
doctors recommend against that, even though it should be another week or two before Nicholas'
immune system gets depressed. Z stayed and played. The two played video games, and then we
went to the park. Nicholas' leg cramps were back, stronger today than they've ever been.
Pretty much all day before 2:00 or 3:00 in the afternoon, he was in pain. We gave him some
tylenol, but tomorrow we hope to get some stronger meds from the hospital for this.
Zolman and Madeline walked to the park, and Uncle Paul and I pulled Nick in the wagon. When
we got to the park, Nicholas really wanted to play, and tried to get out and walk around. He
hobbled up the stairs of the slide and went down it once, but it hurt too much and he got back
in the wagon. It was okay, as he was able to direct the play of his cousin and sister from
this command center. We have a fairly elaborate variation of tag that we play at the park,
and he quickly explained it to Zolman, then directed Z and Maddy in his overall strategy. It
was very cute. His legs got to be really bad after a half hour and we went home to put hot
pads on them and I gave him a massage.
Later in the day, he was fine, and was walking with no pain. Still, it will be nice to have
some stronger meds for that. Apart from the leg cramps and the twice-a-day icky medicine,
everything was normal. He played, colored, watched TV, hunted for bugs and went to the park.
You can't beat that.
Saturday, July 19th Nick woke up at home, and that was a very good thing for both
him and his mom and dad. The day went well, with lots of stuff going back to normal. He
still had to do a couple of things he didn't like. Taking the icky medicine is hard. One
thing that has been a big problem is changing the bandage over his surgery wound, where
they took out his lump. He hates having the tape pulled off. This has to be done every
day, and it freaks him out. I know pulling tape off skin isn't that painful, but Nicholas
was in the hospital for a week, and every time someone new came in his room, they wanted
to do something that was at least uncomfortable. He's very afraid of things hurting, and
especially in places where he's had a lot of pain already. He's pretty sensitive about
his lump area. So Stephanie finally got fed up with having to peel Nick off the ceiling
every day when his bandage is changed. Yesterday, when we changed the bandage, we put on
the new on with some netting. It's kind of like an ace bandage. It wraps around his whole
chest and doesn't stick at all. It made the process a lot more pleasant, and it's one less
thing that Nicholas has to dread.
One bad thing is that Nicholas continues to have leg cramps. They come and go throughout
the day. He can play and seem like everything is normal and fine for a couple hours, then
he suddenly can't walk and has to sit on the couch with heating pads on his legs. It
scares me to see this happen, because I know the side effects are only going to get worse.
We told Nicholas that his hair will fall out. He's worried that it will hurt. We
agreed that Daddy and Nicholas will get our hair cut off together. Daddy will go first, in
case it does hurt. He is thinking about asking his uncles if they will shave their heads
Friday, July 18th Nicholas was scheduled for a gallium scan in the afternoon, to
be given under sedation. Sandy, who is a scan tech or a doctor, I'm not sure which,
remembered how good Nick did with the bone scan, and called us up in the morning to see
if Nicholas will hold still enough to get the gallium scan done without sedation. Nicholas
got his chest scanned while watching a Pokemon video. He had to get his head scanned,
which entailed having this big square thing sit a few inches above his nose while he
held very still for 20 minutes. He couldn't see the TV to watch the video, so we
weren't sure how if this would work. But Nicholas was a trooper, and he lay there with his
head in a special pillow that holds it still, and Lark told him a couple stories. We
were done by 10:30. Nicholas didn't need to be sedated for an afternoon procedure and
could have some breakfast! Thanks Sandy, you rock!
In the afternoon, Lark and Stephanie got lessons on diet, administering medicine, and
the care of catheter tubes. Then we can go home! Yea!
Nicholas started experiencing pretty strong leg cramps. This was a side effect of one of
the chemo meds. It took us a while to figure out what was happening. We couldn't tell if
the pain was from the bone marrow aspiration, or what. Part of the problem is there is
a lot of pain from the bone marrow, and these cramps seem to make that pain worse. By the
end of the day we figured out that pain medication, hot pads and massage seemed to take
care of the cramps, but Nick is having a lot of trouble getting around. Walking is very
Nicholas also found out that being at home doesn't mean everything is fine, as he has to
take the "icky medicine," prednisone, and get the dressing from his lump surgery changed.
He hates doing both of those things.
Thursday, July 17th So far all the tests are negative. No cancer has been found
in Nick's blood, bones, organs, or spinal fluid. This was great news. The cancer appears to
be only in his lump. It is still considered stage 2, as the lump is apparently pretty
good sized, as far as these types of tumors go.
Nicholas started his chemo today. First,
he was put to sleep (no needles or masks! yea Hickman catheter!) and given chemo medicine
through another spinal tap. Spinal fluid and blood don't mix, so chemo must be applied
both places. Since there was no sign of cancer found in his spinal fluid, Nicholas will get
taps only about once a month. In the afternoon, Nick was hooked up to an IV. Hydration and
chemo meds were pumped in for the next 24hours. Nick started taking prednisone, a vile
tasting steroid. Nicholas was freaking out whenever hospital staff come in the room. It usually
means something is coming that will hurt. Nicholas spent his second night in the hospital, and
Lark stayed with him.
Wednesday, July 16th Nicholas' last day of daycare. He went in the morning and
joined his class for a "bug hike" in the woods. The high point of the hike was catching
bugs from underneath a rotting log. He couldn't join in the snack with the other kids as he
was scheduled for surgery later in the afternoon, and can't have any food. Madeline was
picked up from daycare by Grandma Margaret and Grandpa Frosty and headed to Vashon Island
for a few days of dog-sitting.
Nicholas went to the hospital for surgery. He had a Hickman catheter put in, a bone marrow
aspiration, and a spinal tap. The Hickman catheter is a central line that goes into his chest.
Blood samples can be drawn out and medicine put in through it, so this will greatly reduce the
number of "pokes" Niccholas will have to endure.
The kids from daycare sent a big sign with all their
handprints, saying how they miss him. Nicholas spent the night in the hospital, and Stephanie
stayed with him.
Tuesday, July 15thA long day at the hospital. Nicholas had a CT scan and a
bone scan. Nicholas is getting pretty freaked out by the hospital experience. We were
expecting it to be over on Friday, and we haven't really explained what's going on, because
we don't know how and we are unclear on a lot ourselves. We get Nicholas his own Gameboy,
as it really helps distract him when he is nervous and waiting for a procedure.
We spend an hour with Dr. Matthews and Dr. Garcia getting educated on
lymphoma and chemotherapy. We learn that Nick's chemo will probably last for about 5 months,
depending on the results of all his tests. We also learn that Nicholas cannot attend daycare
and will not be starting Kindergarten in the fall. Afterwards, we went to Nicholas' cousin's
birthday party. Probably the last normal kid activity Nicholas will hvae for a while.
Monday, July 14th We arrived at Children's Hospital in the afternoon. We saw Dr.
Sawin in the hall. He had to run to the emergency room for surgery, but told us we can
talk to Dr. Matthews in Oncology,with whom he had consulted on Nick's case.
We waited in the Oncology waiting room for about an hour, watching lots of bald kids come
and go. Dr. Jake Garcia finally gave us a diagnosis of Anaplastic Large-Cell Lymphoma.
Dr. Garcia tried to examine Nick's lump (or what is left of it after surgery) but
Nick was very scared and we had a lot of trouble. Nick had X-Rays taken and blood tests.
The blood tests terrified him. He does not like needles.
The doctors couldn't give us a lot of information with Nicholas in the room, as he is very
perceptive and picks up things easily. We left knowing that chemotherapy for this type of
cancer is extremely aggresive in children this age but understanding very little about what
this really meant for us. One thing they told us was to wipe our calendars clean for the
next 4-8 months. We spent most of Monday night trying to absorb the shock and calling
immediate family to let them know.
|When in the hospital, Nicholas is at
Children's Hospital in the Seattle Cancer
Care Alliance ward. This is on the 3rd floor
right next to the Train elevators. Check the
latest update of this page, or give us a call,
to see if we are at home or in the hospital.
You can call the ward at (206) 987-2032
and ask for Nicholas' room to get in touch
with us when we are there. Phone calls have
to go to the ward, as cell phones are not
Visiting hours are 8:00am to 8:30pm|
If you want to visit, make sure you don't have a cold,
even a minor one. Most kids on the ward have severely
depressed immune systems, and catching a cold could be
deadly. They won't let you in if you have a runny nose
or scratchy throat. Also, no flowers or latex baloons
are allowed on the ward.
Also, you can email us at mhawk @ gowebway.com
If you phone us at home and we are not in, leave a
message. We usually check them every day, even
when Nicholas is in the hospital.