Day 1 visit - 1 year anniversary

A few things to provide updates on, all overdue. First an update on Chris' trip to California last week. This was a first big test for her as to how she would be able to handle the travel, the crowds, the time zone, etc. and overall she did amazingly well. We were heading out for Stephen's Junior Elite Triathlon Championships in Oxnard - 60 miles north of LA, for 4 days, and despite incredible troubles getting there, she did great. We finally got to bed at 2:30 am (5;30 eastern of course) and while I thought she might be exhausted from the delays, rerouting, and general trouble, she was up the next morning and taking long walks along the beach. I think she even surprised herself. She enjoyed getting away, we had a great suite right at the triathlon site on the beach, and enjoyed the great company of the other athletes and parents who also came out. For me, it was proof that she really has come a long way to getting back to normal and can easily deal with the normal bumps in the road - something we could not even fathom a year ago at this time. Chris continues to walk daily and go to the gym or yoga almost every weekday. And with three kids "mostly" home this summer, she is very busy trying to keep order in the house.

So this was the status going into our first day of three at the BY Amyloidosis Center for her one year check up. We have been so busy we really didn't spend much time preparing ourselves - for either good or bad news. We know in general she has been doing very well, but as stated, we need to know what the numbers say. Day 1 overall was reconfirmation of what we thought, but these were all based on conversations. She had her blood work done (11 vials) and her 24 hour urine collection, but we will not get those numbers back until later in the week. We are of course looking at the free light chains in the protein in the urine as the critical bio-markers.
We met with two doctors including Dr. Sanchorawala. Both evaluations were very positive. Chris has no major issues that can be observed other than an occasional bout with GI problems that occur randomly. She explained that she generally feels great, exercises often, is gaining weight. She was told last summer when she was around 92 lbs. that her ideal weight she should target is 115. Yesterday she was 114.9 - and thus she felt good about getting a Dairy Queen Blizzard on the way home (doctors orders!).

Melissa joined us all day and found the whole process interesting, the discussions with the doctors, the conversations with the other patients (including the brand new, clueless, dear in the headlight folks - we used to be them), and all the testing they do. As a graduating nursing student next summer, it was another opportunity to see more medicine in action.

So we finished the day with two major realities. First is that unless we see surprising good numbers later in the week, it is clear that Chris did not get the Hematologic Complete Response (HCR) that we were hoping for. Dr. Sanchorawala ultimately decides at the one year mark whether a patient had an "HCR" and she told us that she doubted she would be able to identify that as the result for Chris. Her numbers all need to be within normal range and as stated in previous posts, they aren't. Yet they are close. Normal for free light chains is 15-26 and she is in the high 30's (from over 400 last summer). As such, she had a 94% response and as discussed earlier, the big question is "what is the tipping point" for action? If it was a 99.9% response, probably we would d nothing. If it was a 40% response, we would jump on the next course. But what do we do at 94%? Of course I asked that question many times and it is becoming clear that the answer is frustratingly the same as before - "let's wait and watch it". I told Dr Sanchorawala that I would predict the course of action prescribed at the end of the week - I predicted "come back in 3 months for more tests and evaluation". She smiled and nodded as she knows that is exactly what we will here. That however is frustrating but also good. Frustrating in that we want to take action, "out damn spot" as Lady Macbeth would say, let's finish this thing off. Yet good that right now no action is required - "no news is good news". Thus we have the raging battle of bad quotes.

The other major outcome of the day was a new awareness or insight that her heart is getting better and stronger. The thickness of the left ventricle wall (septal) has decreased (less stiffening) from 17 mm to 12 mm. This is really surprising and good to hear. Also her BNP number (used to measure the amount of protein produced by the heart) is way down (this is good), but still above normal levels. This is heading in the right direction and is confirmation that her heart is getting stronger - no doubt to her commitment to exercise. Yet the most surprising element of this improvement is that unlike what we had heard before, Chris might be able to tolerate a second stem cell transplant. We had been told earlier "no way" as her heart would not be strong enough. Yet now, that may in fact be an option. Of course we have no idea what the future plans are until we get the numbers back later in the week and the BU team discusses options.

We will go back today for more evaluations and the famous support group discussion every Tuesday. Based on who we met yesterday, I think many people will be looking at Chris and saying "wow, she looks great" and will get a dose of hope and optimism they need.

More updates tomorrow. Thanks for being interested and caring.