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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Saturday, November 29thI know I've hit you guys up for money before, for the
Light the Night Walk to support the
Leukemia & Lymphoma Society, but I thought I'd do it
again. Working in the video game industry, and being an avid gamer, I am a fan of
Penny Arcade, a web comic and game review site. Most of the
site's humor is probably lost on anyone who doesn't have Final Fantasy X2 on pre-order at GameStop, but
they still manage to have thousands of avid readers. Well, this holiday season they decided to use their
powers for good instead of evil. They got together with the Seattle Children's Hospital and Amazon.com
and organized a toy drive. Basically, they set up a
wish-list at Amazon, and you can buy toys off of the wish list that will be donated to Children's.
Most of the toys, especially the books, videos and games, will be kept in the playrooms at the hospital
and can be checked out by kids to take back to their rooms. Some of the toys will be given to kids as
presents, also. Now, as someone who has spent way too much of the last 5 months at Children's, I can
guarantee you that these books and videos and games make a huge difference to the kids. They are
essential to keep a child's mind off of how crappy he feels, or to relieve the mind-numbing boredom of
being tied to an IV tree for 6 days. So if you want to do something nice for a bunch of sick children
this holiday season, this might be the way to go for you. You don't have to shop at Amazon. You can send
toys or even money. The address and information is
here. I sent them an email talking about Nicholas'
experience at Children's, and they posted it on the site as well. Makes me feel famous.
Friday, November 28thSurprise, surprise, Nicholas' counts were high enough
to get him admitted. He just squeaked by, and now is enjoying the lovely accomodations at Children's
hospital. I'd like to give a shout out to all friends and family in the area to come on down and say
'hi.' This may be your last chance to visit Nicholas during chemotherapy, so you don't want to miss out.
Seriously, I know this has been going on for a long time, and it's hard for you to be as invested in
this business as we are. During the last round, there was a noticable absence of visitors. It contrasted
especially with the first few rounds when everyone and their dog showed up to say hi. I don't mean to
make anyone feel guilty, as I said, you all have lives of your own, and this has dragged on for a long
time. But we're almost to the finish line, and we'd appreciated you coming down to cheer us on. Now,
this round is more like the first couple. It has the more nasty drugs, but will only last about 4 days.
So if you want to visit, please come down on Saturday or Sunday, since we may be checking out as early
Nicholas' hair has started to grow back in. It is so soft, and everyone keeps rubbing him on the
top of the head. I think it's this constant rubbing that has inspired him to say that he prefers to be
bald and wants to shave his head. Well, as the saying goes, he should be careful what he wishes for,
because, like the earlier rounds, this round has the amazing hair-loss drugs. His hair will be going
away again in the next week or two. But, like Arnold Schwarzenegger, it will be back.
For Thanksgiving, my sister and her family came over. Maria and her
husband Paul did so much work to help make dinner. Thanks guys. Nicholas was very happy that he got to
play with their two boys, Zolman and Jack. Nicholas shared his passion for Teenage Mutant Ninja Turtles
with the boys, going so far as to have Stephanie make them ninja masks that match the one from his
Halloween costume. They loved the masks so much, they wore them to the grocery store with me. Maddie
too, so I had a troupe of ninja bodyguards to see me through the produce aisle. Oh, and in case you
can't tell, that's Nicholas on the right, in the red mask. With his hair coming back in a bit, and his
cousins getting solidarity haircuts, plus, you know, the masks covering their faces, it's hard to tell.
My uncle and his family came over for Thanksgiving as well. That gave us enough bodies for our
traditional Thanksgiving football game. This year's game was unusual, as we ended up with 4 kids under
the age of 6 on the field. In the past, Nicholas has joined the game, but he was the only kid, and he
was happy to chase after whoever had the ball. This year, all the kids wanted to have a turn at
quarterback. They are only 5 and they already are demanding the spotlight! And on the other side of the
ball, when you have one kindergartner rushing you, you really can dodge him pretty easily. But when you
have a line of 4 charging you, it really does add an extra dimension to the game. A good time was had by
all, but the game was a lot less competitive than in years past.
Thursday, November 27thSo, Nicholas has one more chemo round to go! Yea!
Originally scheduled for Wednesday, we were able to get it postponed so he could be home for
Thanksgiving. And what a Thanksgiving it's turned out to be. We decided pretty early on that we would
be staying home for the holiday. Usually, we go to my uncle's house on Hood Canal, but there was too
much going on with Nicholas, so we decided to have a quiet Thanksgiving at home. Somehow, that
snowballed into having 18 people over for dinner. A lot of people wanted to come and support us and
visit Nicholas, so we ended up with a big crew.
About a month after we moved into this house, we got Nicholas' diagnosis, and we never got around to
really moving in. We've had boxes stacked all over the house for the last five months. We've also had
a couple rooms with no furniture, as this house is a lot bigger than our old one. But we ordered some
couches for the basement. And Stephanie's dad bought us a dining room table and 12 chairs. Some of the
furniture showed up a couple weeks ago, and that inspired us. That and possibly the fact that the end of
the chemo is finally in sight. Whatever the reason, we started unpacking with renewed energy, and our
house finally started feeling like home. The couches arrived and we cleaned up the basement. The dining
room chairs arrived. We were feeling ready. But by Friday of last week, the dining room table hadn't
shown up. We were sure it was going to get here any day. The chairs came didn't they? But Thanksgiving
was getting close, so Stephanie called to make sure the table would get here in time. "Hmm, that's
weird," said the nice lady at the furniture company. That's never an encouraging way to start off in a
situation like this. "We show we sent the table to the shipping company, but there is a strange note in
the computer from them. It says the shipment was short one table." I was very proud of Stephanie,
because she didn't yell. Stephanie very calmly said, "You mean I am having 18 people over for
Thanksgiving and the table you told me was already on the way never got shipped in the first place?"
Well, the answer was yes. And that particular table is on backorder. We should probably get it sometime
in February, though.
Luckily, this whole conversation took place over the phone, so there was no one in front of us to
strangle, so there will be no manslaughter charges this holiday season. I don't believe a jury would
have convicted us, but I'm glad we don't have to find out. Stephanie is very intelligent and resourceful,
and was able to rent a table for Thanksgiving, and we resumed our holiday preparations. We are still
bitter and holding a grudge against Pottery Barn furniture, but our dining room looked very nice for
Actually, our whole house looked great. As I said, we got some renewed energy, and were very busy in
the days leading up to the holiday. We unpacked and organized and threw out garbage and cleaned and
finally got moved in. Since Nick's diagnosis, it feels like our lives have been frozen in place. We
haven't had the time or energy to focus on much else. Now, with the end so near, it feels like we can
pick up our lives again, and it is great. The schedule ahead is one more round of chemo starting on
Friday and ending Monday or Tuesday. After that, Nicholas' blood counts will drop, and he may get a cold
like last time and end up in quarantine for a few days. Then his blood counts will come up and be normal
around mid-December. If he doesn't have any problems, they will probably take out his central line right
before Christmas. After that, there will be monthly blood draws and scans, tapering off to semi-monthly
and then whatever comes after semi-monthly in decreasing order of frequency. But the days of long
hospital stays and complicated medication regimes and line and dressing maintanence are nearing the end.
It is really something to be Thankful for on this day of Thanksgiving.
Tuesday, November 25thNicholas is doing well. He is scheduled for his chemo
round on Friday. I am skeptical that his blood counts will be high enough for him to start on that day.
He has lots of energy at times, but after about an hour of intense play outside or at the park, he
will have a crying fit over some bump or disagreement over the rules of a game. He will then go to his
room and lay quietly or nap for an hour or so. I think this is a sign that his blood counts are low,
hence my lack of faith in the start of the chemo schedule.
Stephanie has recovered from the whole quarantine thing of last week. It was like some twisted
Mystery Science Theater 3000-type experiment designed to see how much Cartoon Network a grown woman
could watch before going stark raving mad. I would have guessed the answer to be around a couple hours,
but Stephanie is living proof of the surprisingly deep reserves of strenght in the human spirit. And
now she can tell the difference between Ed, Edd, and Eddy, too, so I guess there is some good to come
out of all of this.
Monday, November 17th Wow, I can't believe it's been a week since we
updated this. A lot has happened, and I try to stay more on top of keeping you informed. Part of the
problem is that I've been sick as a dog, not getting out of bed for a couple of days. Let's see,
I guess we last left off with Nicholas going back into the hospital.
We had a very nice private room, but we were basically quarantined. Nicholas couldn't leave the room,
and we weren't supposed to, either. If we wanted something from the refridgerator, we had to get the
nurse to fetch it for us. I use the terms 'we' and 'us' liberally, as it was Stephanie who was at the
hospital almost the whole time. She and Nicholas were both going a bit stir crazy by the end. They
couldn't go for walks in the halls or down to the playroom or anything. There's only so much Cartoon
Network you can watch before you start to go nuts.
Nicholas was feeling better on Wednesday. He had an appetite and energy and he felt fine. His blood
counts were very low, so they didn't let us go home. His ANC count is supposed to be over 200 before
they want you to go home. Nicholas' ANC bounced around between 14 and 20 for a couple days, so they
weren't eager for us to leave (though we were eager to go home). Finally on Friday, his ANC got up to
140, and they let him come home with a portable IV pump and some antibiotics for us to administer.
While Stephanie was in the hospital with Nicholas, I got a bad cold. I spent Thursday at home in bed,
and when Madeline came home from daycare, I packed her off to Grandma's house. She was feeling very
neglected. She had a slight cold, and couldn't come to the hospital. She was missing her mom and acting
out quite a bit. Going to grandma's house gave her the attention and affection she was missing out on.
Friday morning rolled around, and the doctors were discussing sending Nicholas home. However, Stephanie
woke up with a very bad sore throat. She couldn't stay at the hospital with Nicholas and all the other
immunosuppressed kids in the hospital. We had to scramble to find someone close and healthy to come
stay with Nicholas. He got to come home and spent much of the day at his Auntie's house, while Stephanie
and I layed around being sick.
So Stephanie and I are still a little stuffed up, with coughs. Nicholas is home and getting twice-a-day
antibiotic infusions through his IV line. When his counts get back up, he will go in for his next chemo
round, but judging from what they were on Friday, I doubt it will be this week. More likely, he will go
in the day before Thanksgiving. But it will be his last round, so we are very excited. It's been a long
last few months, but the end is finally in sight.
Tuesday, November 11th All the blood tests came back negative from the
bruising incident. Apparently, once your platelets bottom out, your body reacts by producing lots of
them, so they bounce back quickly. Nicholas got quite bruised for a couple days, but after that, he
stopped being so vulnerable. That's great, and most of his bruises are almost healed, so we don't look
like abusive parents anymore.
Nicholas woke up with a slight fever today. Not surprising when you figure that Madeline and I both
have had minor colds in the last week. But the fever didn't go away after a few hours, and more
alarmingly, Nicholas was acting sick. The last two times we've had to go into the hospital with a fever,
the temperature was the only symptom. Nicholas felt fine and had lots of energy. Not so today. He was
acting very sick. He was hot, lethargic, had chills, no appetite and complained of both a sore throat
and a pain in his ear. So we ended up back at the hospital. They have admitted Nicholas for a couple
The doctors have repeatedly told us not to give Nicholas Tylenol when we see his temperature going up,
because the Tylenol would relieve the symptoms, but mask the extent of the underlying problem. So the
poor guy was feeling pretty bad all day until the doctors were finally finished examining him, taking
blood and mucus samples (that last one was really fun) and discussing courses of action. Then he
could take some Tylenol, which he did and promptly felt much better. His fever dropped and he perked
right up. Hooray for Tylenol!
The good news is that when you have a cold, you are contagious, so you can't share a room with other
immunosuppressed kids. We have a luxurious private room. We also have our favorite nurse, Christiana.
Stephanie walked into the cancer ward, looked at the board with the nurse assignments, and gleefully
said, "Allright! We won the good nurse lottery today!" Now she said this while she was standing next
to the nurses' station, so, while it further endeared us with our favorite nurse, I'm not sure all the
other nurses within earshot appreciated being declared second-rate. Not that that was Steph's intention,
but I could see that being interpreted as a slight by some. Christiana assured us that just as we have
favortie nurses, so the nurses have favorite patients, and we fall into the latter for most nurses.
I hope she wasn't just saying that to make us feel better.
Anyway, Nicholas is in the hospital tonight, and Stephanie is with him, while I am home with Madeline.
So this means a few days apart for the family, which is a bit of a bummer. Still, the end is in sight
now. One more round of chemo to go. So this little speed bump doesn't feel as stressful as some of the
Wednesday, November 5thNicholas went to the hospital today for routine check
on his blood counts. The doctor was concerned that his platlet count is relatively high, so we shouldn't
be seeing the bruising that Nicholas has. They took some blood to run tests. When we first started
the chemotherapy, they went over this big list of bad things that can happen with chemo. Most of the
stuff is pretty rare, but it does happen. I tried to forget most of the stuff (everything from impotence
to causing a new form of cancer), but apparently, one of the things chemo could possibly mess up
is Nicholas' platelets. The doctor isn't ready to say that's what's going on, but they are concerned
that something weird is going on. We'll know more in a few days.
Tuesday, November 4thA bit of new stuff happening with Nicholas. His platelets
are down, moreso than the during the last few chemo rounds. Those are the things in your blood that make
it coagulate. So he has a sort of temporary, chemo-induced hemophilia. We have to be careful of
nosebleeds and the like. We first realized this new problem had arrived when we were changing him into
his jammies after a day of playing with his friend. We had him take off his sweat pants and his legs
were covered with nasty bruises. His arms are starting to match his legs now. Every time he bumps into
something, it leaves a bruise. We called the doctors because we were concerned. They said it was normal,
but to keep Nicholas' physical activity to a minimum. No wrestling or jumping around or things of that
nature. Which is what he did all weekend. Oops. We'll be careful from now on.
Nicholas' hair is starting to grow back. I'm surprised, as I thought that wouldn't happen until he was
all done with chemo. I'll have to ask the doctor to be sure, but I guess we are done with the medicine
that makes your hair fall out. There is not much there yet. Stephanie says it looks like his head is
just dirty. But if you look up close, you'll see the peach fuzz.
Saturday, November 1st
Well, we are going crazy getting Nicholas some quality
fun time. He's been out of the hospital 3 days and it's been non-stop fun. He went to the Nintendo Halloween
party, then we carved pumpkins, then the next day was Halloween. Stephanie took the kids to University
Village mall to trick-or-treat. Then we had pizza at Auntie Rachel's house. Today, Nicholas' soccer team
had their award banquet. Nicholas ate pizza with his friends and got a trophy. Then, his friend Daniel came
over to the house to play for the rest of the day. So after a week of chemo and being tied to the IV tree and
not doing much besides watching TV and playing video games, Nicholas has had 3 days on the go with basically no
TV or video games.
His blood counts have dropped off quite a bit, and it's starting to show. Nicholas gets pretty worn out. This
can lead to some crying fits over minor things. He fell asleep on the 10-minute drive home from dropping Daniel
off. But he doesn't feel sick or otherwise uncomfortable. Stephanie and I have bounced back pretty well from
our greuling experiences this chemo round. We've been going to bed early every night and trying to sleep late
(Madeline won't let us, though), and have caught up on some much needed rest.
Thursday, October 30th, part 2Just a quick note to say we got the results
from Nicholas' biopsy back today. No trace of cancer in the skin on his back. Good news. All the tests
they can do now show Nicholas to be cancer-free! Yeah!
Thursday, October 30th
Okay, after all the depressing stuff of the last few entries,
here is some fun stuff. Nicholas got out of the hospital on Wednesday morning, and Wednesday afternoon, he
got to go to the Nintendo Halloween party.He and his sister had
a great time. It was the debut of Nicholas' Ninja Turtle costume, made by me(Lark!). Madeline went as a spider,
and that costume was made by Stephanie. It is actually a costume she made 2 years ago for Nicholas, but Madeline
found it in the closet and decided she had to be a spider for Halloween. So here she is. The costume is cute and
it fits perfectly.
The kids got to meet Pikachu and Mario and get treats and cookies and stickers and balloon animals. It was fun.
It was very obvious that Nicholas was thrilled to be out of the hospital. Despite chemo-induced fever off and
on all day, he was full of energy and excitement. We were glad it worked out that his release from the hospital
coincided with this special event.
After the Nintendo party, we went home and carved pumpkins with the family. We had chili and cornbread for
dinner, and Nicholas and Madeline ran all over the house together. It sure was good to have everyone home. The
pumpkins turned out nice, even if the kids didn't do much carving. They drew pictures of the kind of face they
wanted, and daddy did the rest.
Nicholas was asleep less than 5 minutes after his head hit his own pillow in his own bed. It's great to be home.
|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.