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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Thursday, December 18th

The Make-a-Wish people came by Tuesday night. They were very nice. They talked to Nicholas for about an hour. I think he is going to go with a trip to Disneyland. He specified Disneyworld, but that is because a nurse at the hospital told him Disneyworld was better. He has no idea of the difference. He also said another thing he would wish for is the Ninja Turtles Sewer Lair playset. The kid has no clue what is a "big" thing and what is not. It's kind of funny. (And as a side note to you zealous grandparents and aunts and uncles, please don't rush out and buy the Turtle Sewer Lair Playset. He asked Santa to bring it, so he'll probably get that from him.)

They asked him about his likes and dislikes. They are going to look into options and give him a presentation in early January. Things they are looking into include whether Universal Studios or any amusement park near one of the Disneys has Ninja Turtle characters whom he could meet, and finding a hotel with a pool. Because of his central line, Nicholas hasn't been swimming since his chemo started. He hates to take baths because he has to put this big plastic sticker thing over half his chest to protect the line. It hurts to pull it off, and it doesn't seal perfectly. He's always worried that water is going to get inside. It doesn't have to be a perfect seal because we put this other waxy stuff over the ends of his lines, where it really needs to be protected. In fact, it always leaks a little bit. He gets pretty upset when it does and usually gets out of the tub as soon as he notices any water inside. Anyway, he told the Make-a-Wish people that was one thing he really wanted to do, stay in a hotel with a pool and a hot tub.

As for getting the central line out, we don't have a firm date on when that will happen. We are trying to schedule his last scans, (for some reason, the hospital keeps trying to schedule stuff right around Christmas day) and it looks like that will be on the 29th. They will also do some blood work. When the results are all in on the tests, (and if they are all negative, which we kind of expect since the ones in November were), then we will schedule an operation to remove his central line. It should be in the first week or two of January.

After his line is out, he can start kindergarten. As you might imagine, he is a little apprehensive about that. He has been out of school for six months now, and has been kept away from any sort of crowd for most of that time. Going back to school will be a big step for him. Stephanie has purposefully avoided talking to the school, in case something goes wrong. She says it'll kill her to enroll him again and then have to unenroll him again, so she's just going to wait until the doctors give the final okay.

Tuesday, December 16th

We took the kids to see Santa this weekend. We've had a family tradition of going downtown to the Nordstrom's Santa and riding the carousel and the monorail and having lunch at the Seattle Center. This year, we weren't sure if we could do that. Nick's counts are bouncing back, but they are still not up to normal, and standing in a crowded line for an hour seemed kinda risky. Fortunately, Nordstrom's hooked us up. They have a special Santa set-up for kids in Nicholas situation (or with other special needs, I suppose). We made an appointment, something which you can no longer do with the public Santa. We showed up on the 5th floor, there was no line and no crowd. It seems like Santa spent a long time with the kids, but I think it just felt that way because we didn't have to wait in line, and there weren't a hundred people behind us waiting for their turn.

Maddie asked Santa for Barbies and Barbie clothes, and Nicholas asked Santa for Teenage Mutant Ninja Turtles action figures and Deluxe Sewer Lair Playset. They were going to ask Santa some questions, like how does he make all those toys and how do his reindeer fly, but they got distracted by the bucket of candy canes beside his chair and forgot.

We did brave some crowds. We went downtown and rode the monorail, then walked through Westlake Center over to Nordstrom's. We worried the whole time, but Nicholas didn't get sick, so hooray! We skipped the carousel this year, because of the crowd issue. Still, it was nice to keep the tradition alive, even with Nicholas' health problems. It put us in the Christmas spirit and made life seem pretty normal for a while.

Wednesday, December 10th

Nicholas is home from the hospital, possibly for good. His counts are almost up to, if not normal, let's say "high enough." He never had a fever at the hospital. He is feeling pretty darn good. So we are all happy. In the hospital, they wouldn't let us put up Christmas lights in his room, but instead they let us paint his window. He painted this snowman with some trees and "Christmas bushes" in the background. It was a lot of fun. Stephanie and I both helped him paint. Leaving the snowman behind was the only bad thing about getting out of the hospital.

We talked with the doctors about scheduling Nicholas' last round of tests and an operation to remove his Hickman line. Our options were Christmas Eve or sometime between Christmas and New Year's. We chose the latter. We just didn't want to have to go to the hospital that close to Christmas. As Nicholas said the last time we went in for a chemo round, "Here we are at Children's Hospital again. I hate this place." No offense to anyone at Children's, they do great work. It's just that Nicholas has been thouroughly conditioned to associate that place with painful and scary things happening to him. It's just not a place to be on Christmas Eve, if you have a choice.

So, we are done with chemo, (probably) done with inpatient stays, and we have a pretty solid time frame for being done period. Great news all around.

Monday, December 8th

Well, despite hanging out at the hospital a bit, I forgot to ask about the Oxycodone/Oxycontin thing. Sorry, I'll try to remember tomorrow. Nicholas woke up at 3 am crying. His stomache hurt, he was feverish and had chills. We took his temperature and it was 101.8, well above the threshold where we go to the emergency room. So we packed up a bag and Stephanie and Nicholas were off to the hospital. They didn't get much sleep. 7 doctors and nurses came by and checked Nick out in the emergency room over a period of about 4 hours before Nicholas was finally admitted to the ward and they were given a room. Oh, and, by the time they had gotten to the hospital, Nick's fever had dropped down below 100.

So Nicholas is receiving IV antibiotics. He has to stay in the hospital for 48 hours after his fever is gone, so he is in there at least until Wednesday morning. He had a lower fever on Sunday morning, so we the temperature seems to come in the early morning. We will see if it recurs Tuesday morning. If it does, he will be there another couple days. Nicholas is in isolation (it's properly referred to as isolation, not quarentine, as I have been calling it) so neither Stephanie or Nicholas can leave the room. Not fun. They can have visitors, so don't hesitate to come by if you are in the neighborhood. It really helps to break up the monotony of isolation.

Nicholas is feeling much better now. After a rough morning of being really tired and having some stomache pain and generally feeling crappy, he is pretty much OK. They even discontinued the oxycodone and his throat pain seems to be gone. We are in the middle of his post-chemo cycle, where his blood counts drop and then come back up. It can take 2-4 weeks, and we expect to see side effects like this. Since the effects are cumulative, we expected to see the worst side effects right about now, and we are. We are really lucky because we really haven't seen that much from the big laundry list of bad stuff that they told us might happen.

Well, that's the news. I'll update tomorrow with a better idea of when Nicholas will get to come home.

Friday, December 5th

As some of you pointed out to me, Oxycodone is the drug to which Rush Limbaugh is addicted. I didn't realize we were feeding Nicholas such a strong narcotic until he started acting all funny on me. About 15 minutes after he takes the medicine, he usually goes to his bed to lie down, saying that he feels dizzy or that his head feels funny. He will lie in bed for a while and talk and talk, rambling on about whatever crosses his mind. It's very cute, and the best thing is, as long as he is taking the medicine regularly, he doesn't have any problem with his throat. His appetite is back (I don't think it ever went away, he just stopped eating because his throat hurt) and he is in great spirits. Thank you, modern medicine!

UPDATE: Someone else has pointed out that Rush was addicted to Oxycontin, not Oxycodone. I don't know if there are any similiarities between the two drugs outside their purpose (pain relievers) and the sounds of their names. I'll ask at Nick's next appointment.

We decorated our Christmas tree tonight. A good time was had by all, and our tree looks great. I sometimes wonder if we are pushing ourselves too hard to have our "usual" Christmas. This time of year is always hectic, but now, with a few hours every day spent just getting Nicholas the proper pills or shots at the proper time, it seems even worse. Yet we are plowing on like it's a normal year and we are trying to have everything perfect. Stephanie was talking about Christmas cards today, and I started thinking that we should send out an extra-large batch with thank-you's to all of you who have been so supportive to us these past few months. Then I thought "What am I thinking!" We shouldn't even be sending out any Christmas cards this year. We are so stressed out and so much of our time is still taken up caring for Nicholas that we should be cutting back and doing less this year, not more. I don't know if we are in denial, or we so want to be done with everything that we act like we already are or what. It's a little odd, but that's the holidays for you.

Thursday, December 4th

Now we have the chemo side effects. These are the worst we've seen. They have told us that the effects of chemo are cumulative, and the worst would be at the end. Well, the end is near and the worst is here. Nicholas has very bad sores in his mouth and throat. It is painful for him to eat, or even take the many medicines he needs every day. He could hardly gag down the prednisone before, but now it is physically painful as well. The doctors prescribed some Oxycodone to fight the pain, but they think he will probably be back in the hospital before the weekend is over. In the hospital, they will be able to give him intraveneous pain medication, which should be more effective.

Nicholas has been pretty miserable whenever he gets hungry, because he knows eating is painful. Still, he ate a lot of ramen noodles and yogurt yesterday, despite the pain. Part of that appetite may have been inspired by fear. We told him up front about the worst case scenario. If he can't eat because of the pain, he will go back in the hospital and have a feeding tube stuck down his nose and into his stomache. He is understandably terrified of this. Which would lead many of you to ask,"Why the hell would you tell a 5-year-old about that!?" Welcome to the wonderful world of parenting a cancer kid.

This is a line we have been walking from the get-go. How much do we tell Nicholas? Do we not tell him about some of the possibilities because it might scare him? If we don't, how will he react when we spring it on him that something really bad has to happen? We decided pretty early on that we had to be honest with Nicholas. We feel he needs to be able to trust us, or every time we go to the doctor, he will be worried about something we may be concealing from him. This wasn't an easy choice. During the first week of treatment, shortly after Nicholas' Hickman line was installed, we told him he wouldn't have to have a poke to draw blood anymore. Well, the next time we went into clinic, they sent us down to have blood drawn by poke. This was a mix-up, he was supposed to get it through his line. We asked the phlebotomist about it, but he said he was supposed to take the blood from Nick's arm. Nicholas was furious, and yelled at us during the procedure. He called us liars over and over again. After that, we decided to be very up front about everything.

We feel bad that he has so much to worry about, but these things are very real possibilities, and he needs to feel like we are being honest with him. Unfortunatley, cancer puts a heavy burden on his little shoulders, and as much as we want to take on that burden for him, we can't. He's the one who may have to have the tube in his nose, and not telling him about it doesn't really shield him from it when it goes in, it just makes him feel betrayed.

You know, being a parent is hard. You always wonder if you are being too easy on the kid or too hard, if you are spoiling him, or being to strict. When you throw in a serious illness with lots of painful procedures, it makes you question how you handle things even more. We have been spoiling him (and so have many of you, too). He gets lots of presents, just about any toy he asks for, gets to eat whatever he wants, etc. We worry about that, but when he has to be in the hospital for a week, or get shots every day, or have really bad mouth sores, maybe it balances out. He should get to the fun that he can because he doesn't have any choice about the painful stuff.

Nicholas has become somewhat rude, especially to doctors and nurses. He will watch TV or play video games and not acknowledge them when they talk to him. This bothers me a lot, but as Stephanie pointed out, he's a scared 5-year-old, and whenever someone comes into the room to talk to him, likely as not they are going to have something painful or scary for him. If he copes by ignoring them, then more power to him. I, on the other hand, feel that just because he's sick shouldn't mean he gets to be rude. But we see each other's points and try to reach a middle ground and tell ourselves it'll all be over soon and we can go back to raising him in a more or less normal manner. Cancer sure complicates parenting.

Well, this has been a depressing update, so I will end on a cheerful note. Here is a picture of the family's ice cream party on Nicholas' last night of chemotherapy. We had fun for a little bit, as you can see, and we are so very glad to be done with that.

Monday, December 1st

And we're done! No more chemo! Woohoo. We should have a party or something, but Stephanie and I are just too exhausted to do anything. I brought some ice cream by the hospital last night, to celebrate our last night inpatient. The medicine was making Nicholas' stomache hurt, and he couldn't eat any of the ice cream. Stephanie and I were both worn out, as we don't get much sleep when we're in the hospital. And Madeline was whining the whole time about how she wanted her mommy at home. It was not at all festive. But we came home today, and we get to stay home, and that means a lot.

Nicholas has a big medication regime now, with yucky medicine and shots. This will go on for the next two weeks, as Nicholas' blood counts drop and then climb back up. He was a trooper tonight, getting the first Neupagen shot in a few months. The last two rounds of chemo did not require the shots like this one and the first two rounds. Nicholas hates and fears the shots, but they are necessary to help his blood counts rebound.

We picked out our Christmas tree tonight. It was fun. The tree meets Stephanie's rigid Christmas standards, and it looks great in our living room. We have no decorations on it yet. That will come tomorrow. But the house already has that nice pine smell.

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.