Thursday, December 18th

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

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

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

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

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

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

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.