It's All in the Details

So as we all know, things do not always go as planned (understatement of the century!), and indeed, plans have changed rather suddenly with regard to the timing of John's stem cell transplant. Wednesday we learned that though John's stem cell collection went exceedingly well last week, his kidneys had an adverse reaction to the mobilization drug that he was given over a 5-day period. As the doctor explained, this could be an indicator of how John's kidneys will react to the very extreme "conditioning" chemo regimen that normally precedes the actual stem cell transplant. That "conditioning" regimen consists of two days of ultra high doses of a very powerful chemotherapy drug that conditions the bone marrow to accept the stem cells back into the body. But the drugs are also exceptionally hard on the body, even under the best of circumstances. The fear is that John's kidneys are in such a delicate state it would place undue, and perhaps significant, stress on them. Thus it was decided that it would be prudent to postpone the transplant for some period of time to give his kidneys time to recover from the stem cell collection process.

During this hiatus, John will get a lower-dose of chemo, taken orally, which is very effective at reducing the amyloid production in the bone marrow, but safer for the kidneys. In other words, this is a good Plan B option that provides much less risk than transplant at this time. John will be under the supervision of the Mayo-trained amyloid doctor in L.A., who works closely with Dr. Gertz here in Rochester.

We will meet once again with the transplant team at the end of next week to discuss tentative schedule for our return trip to Rochester to perform the stem cell transplant. Though this was an unexpected bump in the road in terms of timing, we feel lucky that the medical team saw this possible complication prior to transplant rather than after. This is why Mayo Clinic is the gold standard of the medical field; their attention to detail and compassionate guidance for their patients is unparalleled. We know that staying flexible with regard to possible treatment options is a must, because as with all complicated medical conditions, the process is highly fluid and changes almost daily.

We'll know more next week, but for now we are looking forward to being home soon! And of course we are looking forward to being back in Rochester in the not-too-distant future. Thanks to everyone for your cards, letters and good wishes throughout our Rochester adventure. As always, we'll keep you posted!

A Big Week

Late Friday we got John's schedule for this week and we are zooming forward! Each day we are one day closer to our goal. Tuesday we have a day of further consultation with the lead doctor of John's medical team, Dr. Gertz, who is Chair of the Department of Internal Medicine at Mayo Clinic here in Rochester. He is considered to be the leading Amyloidosis expert in the world and is directing every detail of John's treatment. We will have more information on Tuesday, but we do know that John will undergo Step Three of the stem cell transplant process, known as conditioning, on Wednesday and Thursday. Friday, Dec. 9 will be the day we've been waiting for: the day of the actual stem cell transplant. More on conditioning and photos from the transplant floor at Mayo to come! (Illustration/Google Images)