Roller Coaster

This piece is going to be a bit longer than most, but I decided certain things cannot be condensed to three or four paragraphs.

 

It has been quite a ride since I last wrote. A roller coaster ride. It had everything. Ups. Downs. Twists. Turns. The works.

After the surgery, of course, we came home. But on the 10th we went back for a check up and to get her set up for 5 weeks of radiation. They did a CT scan of both lungs to have a baseline before starting radiation and sent us home for the weekend. On the 12th Dr. Jaffe (Cammie’s first pediatric oncologist and head of the department at M.D. Anderson when we first arrived there in April of ’81) called to say that there appeared to be some small tumors in the left lung now. Two other physicians, one being her surgeon, said they did not think those were tumors, but rather granulocites. In any case, though, the consensus was that radiation was out for now and that we needed to start chemo right away.

On the 18th we had a consultation with the research doctor to discuss the trial drug options that Dr. Jaffe felt we ought to consider. Dr. Herzog, a clearly brilliant researcher, deftly laid out the complexity of choices. If you choose “A” (all of these drugs have names, but they are nearly unpronounceable), you will not be able to ever use drug “B” because of the nature of the trial. “C” which has relatively few side effects and has had some very good results was, for some reason, not in the offing . “B” might work, and even has a track record in two cases of having worked when “A” failed, but the tumor needs to be a certain size. Do you want to wait to see if the tumors (which may not be tumors…but which might) grow to the requisite size necessary to use drug “B” or do you want to go ahead with “A”?

Each choice was a Hobson’s choice.

Judy did most of the question asking. Things still seemed pretty murky to me, so, I asked what any father would ask: “Dr. Herzog, if Cammie was your daughter, which chemo would you choose?” There was a pause and she said, basically, “I have no idea. Let me look into it a bit more and I will get back to you.”

Along the way we have been blessed with many acts of kindness. One of them was in that room with us that day. His name is John Vitaliti, a friend, and the husband of Connie Vitaliti, with whom I went to school in India. Both Connie and John are M.D.s and live in the Dallas area. He had sent me an email on Tuesday stating that if he could ever be of help as an extra pair of ears in any medical consult, he would be happy to come with us. On Wednesday Judy called and chatted with him and gave him every excuse to back out of that offer. In fact, he insisted on it all the more. And so, John had driven down with us for this consult, an extra pair of medical ears on our behalf. He spent several hours on the way down reading up on the material we had researched off the internet as well as some of Cammie’s records. This was far a field from his field, but it was good to get his input.

And then on Sunday we went down again. We stayed with Bob and Linda Black. The Blacks are another one of those folks who have exhibited true acts of kindness through their generous hospitality. Bob is a former executive of Exxon Mobile and they happen to live about 15 minutes from the Medical City in Bellaire. The last time we were there they just gave us a house key and told us to make ourselves welcome–to come and go a we please.  So we have. Thanks Bob and Linda. (That spelt bread, by the way, was delicious, Linda).

On Monday our first meeting was with Dr. Jaffe. If ever there was a man who wears blue tights and a cape and has a red and yellow “S” on his chest it is Dr. Jaffe—Superhero for the Van Rooys. A South African, he continues to head the pediatric oncology dept. at M.D. Anderson and was away lecturing in Brazil when we were there the previous Thursday. He was the first doctor we saw in April of ’81 and has remained Cammie’s oncologist for over 22 years. The type of tumor Cammie originally had was a rare childhood tumor. The type she had when she had her recurrence nearly two years ago was in the same family—rhabdo. And the ones they removed from her left lung were a metastasis of this same type. So, even though Cammie is an adult, her tumor type keeps her in the pediatric side of things and that is why she still sees Dr. Jaffe.

Dr. Jaffe had a look at the CT scan on which there appeared to be some disagreement.  He then called the head of the radiology department who had a look and said he concurred that there were indeed three smallish tumors—2 to 3 mm. in size. Because of this, and because the size, though small, was measurable, Dr. Jaffe suggested a new drug called “liposomal vincristine” (the “C” drug mentioned above). This is similar to the vincristine she has had before, but it has fewer side effects (no hair loss, no nausea, less drastic blood count drop). It is given as a one hour infusion once every other week. It is part of a study (Phase II) and she is the 26th person to take it and, until just about a year ago, M.D. Anderson was the only place in the world that was testing it.

Several things. It is experimental. Although promising, there are no promises. We are praying for healing.  They are going to do three rounds (6 weeks) and then a CT scan to check the “tumors.” If they continue to grow they will discontinue the treatment, and we will go to something else. If it appears to be working they will consider a year’s worth of treatment.

We continue to be amazed by the Lord’s provision, acts of kindness by His choice servants, and humbled by the prayers of so many.

Love,

Steve and Judy