Pre-op with Doc R

We had our pre-op appointment with Doc R today. Alan enjoyed the trip out to the Medical Center (despite not napping this afternoon) because he has been housebound by the cold snap. We have also finally turned his car seat around to face forward, so he was quite tickled by his new view. He laughed and kicked his feet every time the rain or water on the road was kicked up and hit his window.

It felt like deja vu being back in Doc R's office for a consultation. We were here back in November and ready to move ahead, before the visit with Doc W, the orthopedic surgeon, scared the living daylights out of us and we decided to get a second opinion. Things have settled down a bit in terms of our expectations and fears, and we had a few more educated questions to ask.

Doc R was very reassuring as well as being realistic. The MRI taken right after Christmas showed that the tumor has continued to shrink slightly and that there has been no visible change to the bone. Since he has not had any chemotherapy since the middle of October, this shrinkage may be due to the dead tissues being reabsorbed by the body, rather than live cancer cells dying. Pathology reports after the surgery should give us more information.

Alan was running around and very active in the spacious exam room, and Doc R was pleased to see how well he was moving. With that in mind, he anticipated a very easy recovery for Alan. He will be using the incision he made last April for Alan's biopsy to remove the tumor, lengthening it slightly for more access. He will remove all the soft tissue tumor he can without risking any of the bone, muscle, organs or nerves. This should give us a good, representative sample of the tumor for the pathologists to examine.

Really, this is a biopsy writ large. We had asked him why the other doctors (the orthopedic surgeons Doc W and and Doc L) seemed so reluctant to take this intermediate step. Certainly, putting a little guy like Alan under general anesthesia isn't something to be taken lightly (though within the larger scope of his treatment, we have come to see this as a commonplace). Doc R shared the opinion (which we have heard from friends who are in the medical field) that some surgeons are extremely conservative and will head directly to the option which will definitely remove any threat - which in Alan's case is mutilating surgery to remove all affected bone.

The oncologists (Doc P and Doc A) have case history on their side where there have been patients that have been successfully treated with chemotherapy only. Because sarcomas (both the wide category of sarcomas and specifically Infantile Fibrosarcoma) can arise in almost any part of the body, the successful treatment of it can take many forms. Certainly, that has been shown to be true in the small group of fellow IF babies we have met and talked with. Of the six other families, three had chemotherapy and surgery, one had surgery only, one has started treatment with chemotherapy so far, and we don't have any information on the last.

Doc P and Doc R have assured us that they would not hesitate to recommend any surgery they feel necessary to Alan's complete recovery, up to and including amputation. How strange to call that reassuring - but it is, because one of our fears during the process of seeking a second opinion was that we would choose an option out of emotion. Knowing that our oncologist would have no problem recommending any course of treatment necessary makes it easier to lean on his expertise.

Alan will go to the hospital on Friday for a blood draw to type and cross match, as well as do counts. Other than that, we will work in some family fun and errands this weekend before moving on to the next step of Alan's treatment.


Alan loves Strauss's "Blue Danube"! Here he is listening to it along with watching space travel visuals from Stanley Kubrik's "2001: A Space Odyssey"