Thursday, December 2, 2004

Thursday, December 2, 2004 5:16 PM CST

Nathan went to the oncologist today. We had to wait a really long time, but other than that it was a good appointment. They took his blood, but I didn't get any blood counts before we left. I am sure they are fine though. They also took his urine to do the usual test on that. We weren't really due for the test for a few weeks, but now it is out of the way. The only thing about it was that Nathan had some cookies last night with vanilla and vanilla can affect the results. If they are off we will just repeat when he has his other scans. We talked about those and agreed to do them the first or second week in January. We discussed how long we would scan at 3 months intervals. Per the antibody study he will do three month scans until Dec 2005. His doctor felt that for him we should continue every three months until summer 2006. He has a high risk of relapse right now and for the next year to year and a half. After that the risk will diminish somewhat.

It is a good oncology appointment when there is a long discussion about hair and not tumors. His doctor noticed that Nathan's hair is not normal. It has grown in very thin on top and the hair itself is very coarse. Luke refers to it as "down" (as in duck feathers) because it is impossible to get wet. All the other cancer kids I know have normal looking hair, but for some reason Nathan's hair has not grown back normally. It is hard to say why. The doctor had no explanation but was interested about it. He said he had another neuroblastoma patient years ago whose hair grew back in a pattern resembling male-pattern baldness. He sent the child to a dermatologist and no cause was found. Anyway - hair is not important. I do hope it continues to fill in. It would be better for Nathan if his hair does not look abnormal when he get to the age where kids will tease. The poor kid already has a mouth full of silver teeth and hearing aides.

We decided that Nathan will go to the clinic about every 6 weeks - basically once in between every scan cycle. We also discussed Nathan's physical strength because although he is so much better than he used to be - he is still far less energetic and physical than his peers. The doctor felt it would just take more time. I also wonder how much if it is mental. We go to preschool and other kids take off running down the hill to the classroom and he just plods along. I think that sometimes he just doesn't have a freeness of spirit because of all he has been through.

All these things being said, I am very thankful to be asking his doctor about these non life-threatening issues.

The three of us are still sick with bad colds. Julia and I are the worst with raspy voices and coughing. Nathan just has a runny nose.

Luke returns late tomorrow night. Unfortunately he has to travel again next week. I am searching for a babysitter who can watch the kids until 10:30 on a school night for a choir practice.

On Saturday, very early, we are going to "shop with a cop" where the kids will get to pick out presents for Luke and I at Kmart with the help of a police officer. I think we are also getting breakfast. I then have a 3 hour rehearsal for choir. We may try to decorate our tree Sunday afternoon.

We are finally going to meet with the make-a-wish people in a few weeks. We have been putting them off because of our busy schedule going back and forth to New York. Now comes the hard part - figuring out what Nathan wants. We asre open to anything - so it will be interresting to see what he comes up with. He deserves anything he can come up with!

So - nothing more medical until January 3, when he has his next oncology appointment just prior to his scans. That is a wonderful thing!

Until next time....