Visit with Dr. Ansari

At 2:00 today we had a little sit-down with Dr. A. I am still working 0ut the details of my "I heart Rafat" tattoo.

Basically, he reviewed the details of the plan presented to us by Dr. House yesterday over the phone. He filled in the blanks on the chemotherapy regimen. He also told us that in the past he dealt with these HAI pumps a lot. Unfortunately, when the pumps came out there wasn't really a chemo agent available that made the pumps worth the effort. He was happy to report that now there are a few promising drugs on the market specifically for metastatic liver disease from the colon.

Because of these new drugs, he anticipates seeing a resurgence in the use of the HAI pumps. I'm glad it is available, because I have read a lot about them and they seem like just what the doctor ordered (pun intended).

The only thing that was a surprise was the amount of chemotherapy. We thought it would be once a month, but actually it is every two weeks. He will receive a pump fill and systemic chemo at each visit. I tried to get a duration of chemo out of Dr. Ansari, and all he would say was, "We will do scans and they will tell us." OK, well, that's clear as mud. What I have read from my online research is that chemo is usually 4-12 months. Most people have it for 8-12 months. I'm hopeful that we will be on the shorter end of that timeframe, but lets not kid ourselves . . . there is a mess in his liver that needs to be cleared up. I don't care how long it takes, I just want it gone!

We are waiting for a call from Dr. House's office (AGAIN!) but really don't expect to hear anything until Friday. We would like to get the surgery scheduled as soon as possible. Obviously. We do have to wait until at least after February 1st because of the previous chemo. The Avastin has to be out of his system for 6 weeks, otherwise the colon will have a hard time healing after the operation. We are also waiting for an appointment to be schedule with Dr. O'dea for the tattoo.

WHAT? I haven't mentioned Johnny's latest tattoo? Oh this is my favorite part of this whole stinkin' ordeal. When we saw Dr. House in Indy, he told us that Johnny would require a tattoo so that he will be able to identify the lesion from the outside of the colon. Since the ulcer is so small, he won't be able to feel it from the outside during surgery and it needs to be marked somehow. The tattoo will bleed through the mucosa of the colon and he will be able to see the ink on the outside.

So Dr. O'dea will go in to Johnny's cute little booty and tattoo the INSIDE of his pooper. We are thinking about a heart with a ribbon through it that says, "MOM". That was my idea.

It really does feel good to have a plan in effect. I will be content when we have a date for the surgery. And as soon as we have that date, believe me, I will post it for all of you.

Johnny's blood pressure still isn't coming down . . . we have added an additional BP med to Johnny's regimen and hope to have that under control before he is bombarded with more chemo. Although, the Avastin was what caused the high BP, so with that no longer in the picture it just may be an issue of a little more time.

I do have another prayer request, if you all have the time:

Jake has been plagued with migraines for the past couple months. He was started on Inderal (a blood pressure medicine, commonly used for migraine treatment in children) two weeks ago. It still isn't working, and he is missing a significant amount of school because of these near-daily migraines. I feel so bad for him. I am a migraine sufferer myself, and I can't imagine having the number of them that he has had. I called his doctor today, and we are starting on another medication. Hopefully, this will start working for him.

To add insult to injury, his leopard gecko died today. Rest in Peace, Edmodius. We really loved that little bumpy gecko.

Quinn seems to be doing OK. Thank goodness for that.