So much to be thankful for

I took James to Atlanta to see the oncologist today. Katie and Carrie joined us and we had a good day.

When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"

James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)

I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.

Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.

I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.

We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!

We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.