Random Melvinness and update on treatment

Grant will be coloring, working on a school assignment, making a tower of blocks, anything, and he will ALWAYS say, "so far so good. How do you like it?" EVERY TIME! It is hilarious!
Another goofy "Grantism," tonight he came into the den after watching tv in the living room alone and said, "mom, do you want to trade your old gold for cash? They just smoosh up old necklaces and stuff and give you money!"
Gracie has really amazed me lately in her prayers. She is so thoughtful and is really speaking to God instead of reciting a nighttime prayer. Oh how that delights me!
We went to see Dr. Rapkin yesterday. I had emailed Dr. McClain (the LCH world expert, who is in Houston, TX) last week about Grant's facial rash. Dr. McClain said we needed a biopsy and more than likely it was LCH and that he would escalate his treatment plan based on this new organ involvement. Dr. Rapkin agrees that it is likely LCH. He doesn't want to do a biopsy because he is going to treat it as LCH regardless. He wants to do steroid creme to treat the rash. He says that this disease doesn't respond to dose intensity, but dose duration is more important. He doesn't want to scar his face with a biopsy and doesn't want to do systemic treatment with escalating his chemo when a steroid creme should work. Our only question and doubt with that is that this is a new organ involvement. From what we understand, new involvement always involves escalation and "failing" of the current treatment. We had a skeletal survey yesterday. Grant's bones look great! He is growing back in the skull lesions and the rib. The spine is stable and not growing. So clearly the treatment is working with bones. But why not the skin?
We were at the dr. for 7 hours yesterday and had a great open conversation with Dr. Rapkin He seems to have taken an new interest in LCH and really has more of an interest in the disease than he did when we started with him. That is a nice change. But we can't help but wonder why Dr. McClain thinks differently. Our dear friend Brad reminded me of a very important point, Dr. McClain is a researcher and needs "lab rats" for his research. A very good point.
So with all that said, Dr. Rapkin is sending all our records to Texas and we are going Nov. 23. Our reason for going is not because we doubt Dr. Rapkin or that we are unhappy with him. It is because we want to make sure we are making an informed decision regarding his treatment and we want to establish a relationship with Dr. McClain because there is a good chance we may need him again in the future and the more informed he is of Grant's case, the better. At this point, it is going to take a pretty good bit of information to convince us that we need to escalate chemo, but we are interested in hearing why he says this. We have also decided that we will do the biopsy with Dr. McClain. It may scar. But it is 2 stitches. I know his face is perfect and beautiful - but what 5 year old boy makes it to 10 without having 2 stitches on his face? So we are going to do it. I'd hate for us to go through all this for dry skin or a fungus.
Dr. Rapkin is more than willing to work with Dr. McClain. But he did tell us to expect a fight and a "difference of opinion" if Dr. McClain requests that we escalate treatment. He said unless he has a very good case as to why, we may be having to travel to Houston for this treatment if we decide we want to do that.
I feel quite certain that we are going to struggle with this decision. But I think it will be better to have more information when making the decision.
We are going to Houston Nov. 21-25 and then will head to NC for Thanksgiving. And back to Atlanta for treatment and follow up and/or fight with Dr. Rapkin on Nov. 30.
These are the pictures that we sent Dr. McClain...