Our Christmas Card

Make a Smilebox greeting

Ice skating in Houston

Gracie did great! Grant gave Chad and I an upper body workout keeping
him up! But by the end he was doing much better. If our feet hadn't
been throbbing and we convinced him to leave, he'd have been skating
alone soon.

Ice Skating Princess

Good news from Texas

We had a good meeting with Dr. McClain. He said the facial bumps
looked better than he thought from the pictures. We talked for a good
bit about his research. He has found +/-2000 genes that are abnormal
in LCH patients and a connection with a family history of thyroid
problems. He assured us that there is practically no chance of having
risk organ involvement (liver, spleen or lung) at this point. He said
because Dr. Rapkin has him on a year of maintenance that the
reactivation rate goes from 50% to 25%. He indicated that the threats
are more bone lesions, skin, lymph nodes, or possible pituitary gland.
It was interesting to hear of his research. He and a staff of 1 and a
part time person are the only people doing research. But he is
encouraged by this gene/thyroid discovery.
He is pleased with the treatment plan and the progress he has made. We
talked about treatment if he did reactivate.
We left and went to their dermatology department. Two doctors looked
at his face and say that it is Perioral Dematitis. They gave us a
cream and said it should clear up in a few weeks.
So overall, very good news!

Grant's first airplane ride

Here we go!!

Pnuemonia and flu it is

Grant has been coughing all weekend. This morning he was complaining of back pain. He then threw up at school. By the time I got to the school he had a 100 fever. I decided to go home instead of taking him to the pediatrcian because if his fever is 100.5 twice in an hour or goes over 101.5 once we have to go to Atlanta to have blood work and to check for bacterial infection in his port. Within 30 minutes his fever was 102.9 and I was quickly packing a hospital bag. We got on the road and made good time to the cancer center at Scottish Rite. We saw the PA in Atlanta and she said it is viral pneumonia caused by the flu. His counts are good enough that he can recover at home though. So we are getting IV fluids, antibiotics, a breathing treatment and tami flu before we leave. We will bring home the breathing machine, anibiotics and tamiflu. His fever is hanging around 100 on Tylenol. She said the pnuemonia + flu cases are worse, but he should be better by the end of the week. No school this week though.

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...

A little bit concerned

We went for treatment today and unfortunately Grant got a little sick. He hasn't been sick in several treatments. I wish we could figure out why sometimes he gets sick and sometimes he doesn't. He said on the way home, "my throat has cramps." The only time I can remember having "throat cramps" it was followed by yuck. But he didn't throw up. He has had a really upset tummy this afternoon. It is always hard to convince him to take more Zofran. He takes Zofran right before he gets his chemo. So he thinks it is the Zofran that makes him sick. He screams and cries, he ran from me today and I had to force him to take it. He doesn't have to swallow the chemo, so it isn't real for him. He does taste it though. Isn't that weird? They said that anything injected through your blood stream affects your senses. So he tastes it but he doesn't know what it is he's tasting since he isn't swallowing.
But we are a little concerned because last month Dr. Rapkin asked about the bumps on his face. I never would have thought it was anything, but he wanted us to watch it. After a week or so of trying to remember where the bumps were from day to day, I started taking pictures of his face. They are really funny, you can't see the bumps unless you zoom in big time. I NEVER would have been concerned. In fact, today, Melissa our PA said, "if he were a normal kid, this wouldn't be anything but dry skin and I'd think you were crazy for bringing him in. But he's not normal and we may need a biopsy." If you remember, LCH can manifest itself in the bones, skin and organs. Grant's is only in his bones. He had a head CT only about 6 weeks ago and it was great. So I find it odd (so does Melissa) that he would be developing new LCH in a new way without growth in the old places. Because of that, we aren't super worried. This week is his 5 day push of Prednisone. Melissa said to watch it this week and see if it gets better. If it gets better, that isn't good. Dry skin doesn't react to steroids, LCH does. So needless to say, the pictures are going to be very important this week! Here is tonight's picture...he looks perfectly fine doesn't he? You have to zoom in to see patchy eczema type flakes around his left nostril, eye and corner of his mouth.