Saturday, November 29th

Friday, November 28th

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

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

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

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

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

Tuesday, November 4th

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

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

Thursday, October 30th

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.