Nicholas' Health Update

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 29th

I 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 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 28th

Surprise, 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 as Monday.

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 27th

So, 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 dinner.

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 25th

Nicholas 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 days.

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 previous ones.

Wednesday, November 5th

Nicholas 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 4th

A 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 2

Just 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.

Hospital Info
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 allowed there.
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 @ 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.