Thursday, February 28, 2008

Catching Up Is Hard to Do

From Bonnie on 12/13/07

We so hoped for a conclusive diagnosis today, but it still isn't in. According to the doc, a sample of bone marrow has now been sent on to the premier bone marrow pathologist in the nation, Kathryn Foucar at the University of New Mexico. Unfortunately, he still suspects Jordan has either ALL or AML, not the B-12 autoimmune deficiency. Jordan was discharged from the hospital on Monday, but will return if the diagnosis of either leukemia is confirmed. Until it is, I guess he will be treated with antibiotics and blood transfusions. He had his first transfusion last Friday, and will likely have another this Friday. Counts improved for about 3 days, and are heading down again. Platelets went from 38k on Monday, to 28k today. HGB went from a low of 6.6 last week pre-transfusion, to 10.something on Monday. But now they're at 8.8.

From Bonnie on 12/17/07

I hoped the doctor was making a mistake in suspecting leukemia, and he apparently was. But that didn't turn out to be good news. The nationally known pathologist thinks this may be a metastatic rhabdomyosarcoma (RMS). Jordan will have a CT/PET scan Wednesday to investigate further, and another appt with Dr. Z. We are just now reading about RMS. It occurs mostly in children younger than 10 years of age, and has a 70% cure rate if caught early. The outcome is poor if it has become metastatic, as this appears to have done.

Because Wednesday's PET scan was negative, and rhabdomyosarcoma usually presents with a primary tumor site, Jordan's medical data was sent on to Stanford University for evaluation by a second pathologist. A very slow pathologist, it turns out.. Appointment after appointment, we heard, "Sorry, still waiting on Stanforrd." From Dec. 17th to Jan. 10th, we waited for that report. As a small diversion, the possibility of neuroblastoma was raised, sending us on another fruitless hunt. John, from the CLLC Friends site even sent us an article he found on rhabdomyosarcoma mimicking acute leukemia, which we passed along to the oncologist way back on Dec. 17th, but I can't say if it ever saw the light of day.

At long last, Stanford's report arrived, with an article referenced in the footnotes which led Dr. Z to confirm the diagnosis of rhabdomyosarcoma. Ironically, the article in question, Hematologic masquerade of rhabdomyosarcoma, is very similar to the one we had offered 3 weeks earlier.

The first two rounds of chemotherapy, while uncomfortable and difficult, have brought about marked improvement in the bone marrow's production of red and white blood cells and platelets. Transfusions are becoming necessary less frequently, and our hopes rise as the blood counts creep upward. It's true that Jordan has spent more time than he'd like in the hospital, but on two occasions, he was given a four-hour pass for a change of scenery. He requested a drive in the mountains, and Dan made it happen. I tucked a borrowed sled into the car, just in case Brianna could be coaxed into giving sledding a try. For a girl who grew up in southern China, this would be monumental. It took only a little arm-twisting, and a lot of courage, and she was off! Better yet,, Jordan followed suit! And now, friends, we're all caught up. :)