Wednesday and Sarah

Hello all.
Since Scott is not in this week, and all goes well, I believe I will be in the office for part of the day. If you need me, please stop and knock (or just stop by and say 'hi.'). I will be working on MWRTEC (what a surprise).

The second reason for this email, is to let you in on the latest developments with Sarah. She is fine, just a lot of big changes in her chemo therapy. We went to the hospital yesterday and came up with a number of surprises. I wrote a long diatribe on Facebook last night for friends and family and received a lot of interesting (and positive) comments from them. After thinking about it today, I thought I would cut and paste the comments that i wrote in FB last night for you to read. This should give you some insight on what we have been going through over the last seven months. What you are about to read is nothing new. We often ran into problems like this, just not so many all in one day. No comments are necessary. Just thought all would be interested.

The opening of the post is responding to a couple of previous comments from friends.

See some of you tomorrow.
M.

Facebook post (1/25/11):

"As to Sarah getting better, yes --whatever it takes! However, today was the worst possible day to throw this major curveball at us.

We had been up since 4:45 am to drive two+ hours on snow-covered roads. We walked into clinic, everybody was "a buzz" that Sarah was FINALLY at the maintenance mode. Got the tour of the new hospital. Sarah had a spinal tap and had one of her hardest times "waking up" from the Propofol. She was queasy and needed Zophran to calm her stomach. Vinchristine (chemo) was given through her port and she was deaccessed. The medicines were ordered at the pharmacy and ready to be picked up. We were minutes away from fighting the icy roads back home (only this time in daylight) when the PA came in and said the doctor needed to talk to us. When the doctor came in and sat down to talk to me "eye-to-eye", I knew something was wrong.

The two (fairly new) studies that were going on had sent a notice this morning to the hospital saying that the studies were closed and they had ALREADY come to their conclusion. The kids on Sarah's study, the normal way to treat A.L.L., needed to be switched to the new method. And with that, Sarah's group needed to "catch-up" with the other group, thus, they needed high doses of Methotrexate administered to them. She will need to have four, four-day (minimum) hospital stays over the next 2 months. She will have the drug (as well as several others, including more spinal taps) and stay in the hospital until it has exited her body. We decided that the best way to do it is go in at 8:00 am on Thursday for the spinal tap and not leave until Sunday (at the earliest).

MJ and I have moved "heaven and earth" to get us to this point, and the doctor agreed to let us start this on Thursday, 10 February. This allows us to be free for both the conference that I am putting on (MWRTEC), and, more importantly, Sarah singing in La Boheme. The other three dates for her stay are: Feb 24th, March 10th and March 24th.

As for clinic, they are convening ALL the children's oncologists and bone marrow specialists this Wednesday to discuss the results of the study. In the middle of their discussion is Sarah! She is on the crack of the study's results, so they need to brainstorm to see if this is truly the correct way to go (though our oncologist is fairly sure that they will go down this avenue). The bigger picture is, this changes a LOT of how they will treat all new A.L.L. patients. The biggest question, "how come the study came to a close so soon." I believe the doctors expected the study to go quite a bit longer.

The one interesting thing from this is, the overall time frame is still the same. Sarah will finish with ALL medicines on:
23 September 2012. Yes, they have a definite date for us (which I just found out today).

PS - the last time she was subjected to a lower dose of oral Methotrexate, she got sick and lost all of her hair. This time it will be given at even higher doses, thus the hospital stays."