Monday, July 7, 2008

Rough Outlines of a Plan

Day 7

We met with Dr. Kebriaei today and now have the rough outlines of a plan together. It's a six part plan with a few challenges along the way. We will have to get through each successfully get to the next step.


Step 1 (33% - 2 weeks remaining)
Get Ann into a stable remission. This basically re-induction chemo for a week, followed by a second round of steroids and chemo on the second week. Finally the last week is for observation and a bone marrow biopsy to check for leukemia in the marrow.

If remission is achieved then we move on to Step 2, if not then we will repeat Step 1 again.

Step 1a (2 Weeks)
On the assumption that Ann will attain remission, MDA will begin a new donor search. We are limited to either another Double CBT, or a 9/10 MUD. The doctors will conference and determine the best choice to emphasize the GvH/GvL effect.

Ann and I have both told Dr. Kebriaei that we would like to be as "rough" as possible, in the hopes that it leads to much better disease control than we got with the first two cords (e.g. lots more GvH).

Step 2 (2 Weeks for CBT or 6 weeks for 9/10 MUD)
Ann's chemo will continue through this step regardless of weather she is in remission. Stopping chemo could invite a relapse at this stage.

At this stage we should have a donor identified and once everyone (including us) are on board, then the donor will be activated. For a cord that means basically it gets thawed out. For a 9/10 MUD it means the donor gets a called and goes in for testing. Then if they don't have any problems (HIV, Hep C etc) that would prevent them from donating, they will either donate marrow or PBSC(s). Either will then be transported to MDA.

I think at this point me and Ann are leaning towards 9/10 MUD matches just for the added chance at a DLI (we had to fore go that this time because of the CBT - you can't get donor leukocytes from a umbilical cord), but we'll see how the recommendations come out.

Step 3 (2 weeks to 4 weeks)
Ann enters preconditioning for the BMT. Here once again we have asked that Dr. Kebriaei be as intense as possible. This is based on our belief that the harder we hit the disease when it's down the better our chances and the fact that Ann sailed through the pre-BMT conditioning last time. If we do have a 9/10 MUD the preconditioning will be different than the double CBT we did last year.

Then we are waiting for engraftement, which could take anything from 3 to 4 weeks.

Step 4 (10 weeks give or take)
During this period Ann will be monitored for GvH, and infections at the ATC clinic same as last time. The end of this time is the 100 day mark. After which we will be cleared to leave Houston and MDA behind.

Step 5 (Top Secret)
This step is under development...

Step 6 (the next 40 or 50 years)
Live the rest of our lives together and try to raise our adopted children to be smarter, better, and happier people than we are.


We have a big day tomorrow. Ann is scheduled to get out of the hospital and I have to go and meet with the charity apartment people. As last time we seem to have lucked out and an apartment has become available at the very last minute on the day Ann is due to get out of chemo. After that I need to go shopping and pick up supplies (food, toiletries, etc). We will also be picking up a ton of prescriptions, and that kills me. Ann has gone from taking 1 pill a day + supplement, back to what will probably be 20 or 30 a day.

Before I forget Dr. Kebriaei also gave us the official prognosis for another BMT...20% give or take about 9% (based on the NMDP data). At least it's not zero.

8 comments:

Anonymous said...

Chris and Ann

I like step 6 the best! I adopted a girl 8 years ago and it is the best decision I have ever made. I am heading into a BMT in two weeks. I wish Ann the best to fight this beast - I know that it can be difficult but we can and will beat this beast!

Jennifer

Susan Carrier said...

Yes, step 6 is definitely a winner. Like you and Chris, we are a Hapa-WASP couple and ended up adopting a beautiful Latina daughter from Mexico 19 years ago.

Anonymous said...

i only like step 6 n step 6 only.but since u cant skip the 1-5, i hope u will continue to doing great (if not physical,ur mental n emotional).

both of u will be in my thoughts n prayers
ml

pj said...

General,

Love the strategy. I salute you!

Anonymous said...

I am so happy to hear your plan is in place. I agree with the others....I like #6.

Anonymous said...

Is your National Transplant Assistance Fund account still open? Can people still donate? Let us know, I'm sure plenty of people would like to help out!
- Paige

Anonymous said...

I've recently stumbled onto your utube videos. I survived a BMT for AML last year (May 22) and I'm doing super-great. I was looking for resources for a friend fighting Burkitts and getting ready to have a transplant. What a gift you've given the world in letting us watch (and read about) your process.

I feel so akin to you both- I have always seen this as a journey with all the tests, treatments, trials, truimps and try-overs as part of the path back to vitality and good health.

Both of you have so much to do in your lives together beside this stuff! I already love both of you! Hang in there Ann and Chris. I will light candles for you every night until I know you are feeling better.

I'm know I'm not the only person holding you both in loving thoughts and pleasant dreams.

Be well-

Cassandra

Anonymous said...

I think Step 6 needs to be edited wit the part about adopted children who are "smarter.."

Ahem...no one is more smarter than Ann.

Carilou