Progress Report Letter

Dear family,

Today I spoke with John Greer, Director of Hematology and Stem Cell Transplantation at Vanderbilt. Dr. Greer is a highly regarded hemotologist/oncologist at one of the excellent cancer centers in the country. Robby put together a case history on Mark for Dr. Greer to read, and then Dr. Greer and I had a lengthy conversation in which he told me his thoughts about Mark's situation. He obviously has not been working on Mark's case and is therefore limited in what he knows. He also inserted caveats here and there. But, all in all, I left the conversation feeling A LOT more optimistic than I was at the beginning of the conversation. This is what I learned:

First, I think we are lucky to have a physician in the family to help us and especially Mark understand what is going on. We have seen how ad hoc this process can be. Most cancer patients and families of cancer patients don't have the luxury of having a physician in the family who can help them feel relatively less frustrated and discouraged about the surprises around every corner. It makes me feel more secure and confident when I get updates from Robby and know he is on the same page as Mark's medical team. It is especially reassuring when objective outsiders like Dr. Greer confirm what I am hearing from Robby.

Second, Mark's medical team is first-rate. Dr. Greer said he knows of the team at LDS and said repeatedly, "He is in good hands." The tenacity ofMark's infection has been frustrating. I am personally anxious to get the show on the road so we can get the transplant over with. I admit to wondering on more than one occasion whether the physicians treating Mark are getting it right. Dr. Greer assured me that they are. He knows of the Dana Farber protocol and thinks it was right to enter Mark into it. Based upon the info he read, he thinks Dr. Asch made the right call to stop the protocol when she did. And, he thinks they are proceeding the right way now­ working to fight the infection while vigilantly guarding the central nervous system from relapse, routinely testing remission/relapse, and keeping Mark on Glevic.

Third, he wasn't surprised by Mark's infection. He said one of the drugs they often use in the protocol induction is a heavy dosage of PegL-asparaginese. He said it can lead to pancreatitis and infection. In fact, he said one of the top problems cancer patients face is infection of one stripe or another. Survival depends upon patients' ability to prevent infection and to fight it off if they get it. He was very clear that Mark must get healthy in order to transplant and getting healthy is largely a function of Mark's own ability to get his mind and body strong.

Fourth, he is optimistic that Mark will make it to transplant. He said if Mark fights, his body will likely get strong enough to resolve the infection problem. He said it might take a while. When I told him I worry about relapse if it takes too long, he said glevic is remarkably successful at keeping the cancer at bay, Mark is lucky to be young and strong, and Mark's physicians will do everything they can to make sure the cancer stays out of Mark's central nervous system. Dr. Greer said Mark has suffered a terrible set back in the process of getting the bone marrow transplant he needs to stay in remission permanently. However, he seems to think of it as a temporary delay and remains confident that he will get through the infection to the marrow transplant. I feel a lot more confident knowing that Mark's medical team is on the ball and feel reassured knowing that there is a path to transplant if Mark works really hard to strengthen his body and mind.

Robby adds the following:
Most medical doctors are trained very very similarly. In fact, all M.D.'s trained in America take the same general boards twice. Then they go on to train at hospitals, some better than others but nevertheless, the same"medical gospel" is taught over and over like an onion. Even after a specialty is chosen, those physicians cross train with other specialties, especially within the general confines of Medicine and Surgery. Emergency Medicine is unique in that we train within both major branches of medicine and surgery and are required to get a strong general knowledge of both. Then the subspecialization takes place where Medicine doctors decide to become"Hematologists and Oncologists" etc. or Surgeons decide to become Cardiothoracic Surgeons etc. The onion-type layering of over-training continues because of the overlap. But by the time one reaches a sub-specialty they're deep into their sub and mastering very sophisticated levels of nuances of the cutting edge of their sub-specialty. The major teaching hospitals (where most of us train) are the ones that do the research that gives birth to the "protocols" "trials"and "methods" that the Standard of Care picks up and deems as such. The variances from those Standards is very rare and subtle. In fact in most work-ups (diagnosis and treatment patterns), there is a pretty common-to-physicians algorithm that is followed if one is thorough. So the only breakdown is if someone isnt thorough, is aberrent or is stupid. The last two dont last long because they usually dont get boarded, or get thrown out. In Intensive Medicine, Critical Care and Hem/Oncology, there are some pretty bright people because of the amount of material they must master to keep people alive. I would put my trust in any well trained physician in his or her field but would feel really good about a well trained Hem/Onc doctor especially at a reknown institution, ESPECIALLY if they were deemed worthy to work with Harvard's Dana Farber to produce a very important protocol for treating Adult ALL (Leukemia). Through this experience with Mark, I've shared many phone conversations and many, many emails with Dr Julie Asch and occasionally the others on her team. I can't tell you how many times I've made suggestions #1, #2 and #3 and she quickly says "done that", "done that" and "thought about that but didnt do that, we did this for these reasons..." So you see its common among us to think of the first second and third things one well trained would think of and they are not only on task with that but will nuance their work-ups and treatments to best use their knowledge and experience to fight what ails Mark.

Lastly, it's always difficult to cope. To help Mark is difficult since he needs both love, nurturing, help and encouragement at the same time. Its hard to know whether to give him empathy or a shot in the arm. I think all are doing a great job on that. His body needs to fight this disease. Its his immune system that at the end of the day will fight off infections. Its his brain that directs his Neuro Endocrine system which fights disease. The doctors are trying to keep the sharks away so he can swim across the channel. But at the end of the day, he has to swim. His immune system has to fight off the infections and with the best medical care, his system has to accept the BM transplant and stay in remission. I think we're on the right track, its just a frustrating journey with alot of chess moves along the way. I knew from day one it was going to be a very very bumpy road. Families and patients get discouraged every day all over the country fighting similar fights. I've seen it alot.

Brett V. Benson