Bad News/Good News

The scans came back yesterday and the tumor was the same size. It was impossible not to be discouraged. I was really thinking it would be different since he has done so well and they were so good last time. However (it's nice to know the right people) I called my friend Kristin and talked with her for awhile. She said she would call Dr. Hawkins and have him stop by today, even though it was not his assignment to be on the inpatient floor. He came by and said the exact things I needed to hear. The first, which I already knew, was that they don't typically do scans this early with most kids. They usually don't do them till week 12 in which case we would be happy with where he is at and wouldn't have known that it shrunk initially and then didn't. Kristin had said there is no pattern to the way these tumor respond, they don't shrink exponentially. The other thing Dr. Hawkins said was that there is no difference long term between kids whose tumors initially shrink partially, completely or not at all. That seems hard to believe, but is the truth and good news since most kids do really well with this treatment. The only news we have left to hear is the integrity of the tumor. Apparently, they can sometimes tell from the scans that even though it hasn't shrank in size, parts of the tumor are dead. We're hoping to find that out. Dr Hawkins said he would get back to us.

Another thing we found out yesterday was that we no longer have to give him shots. They have approved a new medicine that does the same thing, but only has to be given once after each chemo. So, he will get one shot from the nurses in clinic. I'm glad that it is now their responsibility. So that was one bright spot from yesterday.

I know a lot of people read this that we don't speak to often. I thought I would include some info. that may not be clear. Radiation starts the end of February and will go 5-6 weeks 5 days a week. He will get his chemo then too. It will be modified during that time. He will come in for 3 chemo drugs every three weeks. Typically we come in every Friday for one of the drugs and every third Friday for the 3. We'll start back on that schedule after the radiation. His treatment goes until the middle of September no matter how well he responds. We appreciate and enjoy hearing from so many of you. Thanks for encouraging us.