Happy New Year!!!

Can anyone spare a couple of bucks? Ryan Seacrest and Dick Clark told me to be in Times Square by 7pm and I don't have the cab fare on me! I sure hope Hilary Duff doesn't wear the same outfit I have on. Happy New Year!

Trip Number Three to M.D. Anderson

Here is Jo with Dr. Anderlini and his assistant, Thuy, at M.D. Anderson in Houston, TX (pay no attention to the man in the mirror). Dr. Anderlini had just gotten back from seeing family in Italy where preparations for the Olympics dominate the daily news.

It will take a week or so to get results on Jo's bone marrow aspiration and biopsy, but based on Jo's blood counts and her continued need for transfusions, Dr. Anderlini is recommending that we initiate treatment soon and that we seriously consider a bone marrow transplant.

It is important to Dr. Anderlini that his patients make their own decisions regarding treatment. His favorite saying is, "Don't ask the barber if you need a haircut." He makes a living doing bone marrow transplants and he feels very strongly that based on Jo's situation, he can help her.

The option to a bone marrow transplant is a stimulation therapy called ATG, where Jo's immune system would be suppressed to a point that her bone marrow would be given every opportunity possible to get started producing blood elements again like it is supposed to do. ATG is a much less risky treatment for Aplastic Anemia, but historically, the results have not been as permanent as a bone marrow transplant. The NIH in Washington, D.C. is constantly doing research with ATG, which is one of the only options for a patient you does not have a bone marrow match. Ultimately, I suppose an ATG solution that provided permanent results would be ideal and my guess is that this is the charter of the research being done at the NIH.

If Jo were 20 years old, pretty much everybody would agree that a BMT was the way to go. If she were 60, everybody would agree on ATG. Because she is SOMEWHERE right in the middle of those two numbers, she is considered on the fence.

We have spent numerous days and nights going over the pros and cons of each option and the bottom line is that there is plenty of data to make a strong argument either way. Jo and I had an interesting conversation last night regarding the difference between making a decision and making a choice (as defined by Landmark Education). If you have never heard of Landmark Education, please go to their website and look them up - www.landmarkeducation.com. We have each spent significant amounts of time in their seminars and studying their material and we both believe that Landmark Education has had a significant impact on our lives - with or without the medical challenges we are facing.

Landmark Education distinguishes a "choice" as a situation where you weigh all possible considerations or reasons, but then you choose freely. In a "decision", the decision is made because of the considerations or reasons. For instance, when I decide to eat a hamburger instead of a salad, it is often because I like the hamburger better and it will make me feel more satisfied. The bottom line is that I have "reasons" why I decided on the hamburger. In effect, I didn't really make the decision - the reasons made the decision for me. The fact that I like hamburgers better than salad is what made the decision.

So, how does this apply to Jo? We are searching right now for some "reason" to decide between a BMT and ATG. We would love to find some glaring reason that just jumps out and clearly makes the decision for us. This sounds reasonable, but really what we are trying to avoid is taking responsibility for the decision just in case we might happen to make the WRONG decision. There is so much data to argue either option, we are going to drive ourselves bananas looking for that reason that clearly makes the decision for us. AND, if the treatment doesn't work out like we hope, we will kick ourselves over and over again for not doing the proper amount of research to find the real reason why we should have gone the other way.

The other option is to make a choice. Remember, Landmark Education distinguishes a choice as a situation where you weigh all considerations, but then you choose freely. Okay, so I like hamburgers better than salad, but salad is healthier, etc. In a choice, I weigh all considerations and then I throw all those considerations out the window and make a choice freely. Why did I choose the hamburger? I chose the hamburger just because I chose the hamburger. I don't have any reasons and I don't have any excuses!

As a freshman at the Air Force Academy I was taught that for 1 full year, the response to every "why" question would be "No excuse, sir." That was almost 20 years ago, but I think I finally get it.

It is almost time to quit weighing the considerations around Jo's possible treatment options and to make a free choice, a choice for which Jo and I will take 100% responsibility. The doctors won't make the choice, nor will the reasons make the choice. By taking 100% responsibility, there is also no chance of regret. Regret comes from letting a reason make your decision for you and then later in life thinking that you let the wrong reason make your decision.

We all have the opportunities to make decisions and choices every day and my hope is that by reading this entry, somebody might take the time to bring the distinction of choice vs. decision into their own life.

ANNA UPDATE - Anna rolled over from her stomach to her back earlier this week. She has tremendous technique - throw her head back, arch hard, kick and flip - sounds like her first attempt at dance choreography to me. Tonight, we were able to get her to roll from her back to her stomach. By the time we get back to Denver, she'll be rolling all the way down the hall!!!

A Question That May Never Be Answered

In very rare cases, Aplastic Anemia can be caused by pregnancy. This being known, there will always be a question as to whether or not Jo's pregnancy induced her condition. The answer will never be known for sure, but we had an interesting chat today that I wanted to share.

Jo's condition was diagnosed in November, 2004, approximately 8 weeks into her pregnancy. Her platelet counts were already at about 30,000 and dropping quickly. The timing all seems to point to a possible connection to getting pregnant.

However, in April of 2004, at the Pike's Peak Line Dance event in Colorado Springs, Jo remembers having a little cut that kept bleeding for an abnormally long time. Then, sometime in May or June, 2004, Jo woke up at home with an unusually heavy nose bleed.

In July, 2004, Jo was practicing a swing dance routine (for Swingtime in the Rockies) with Toby Munroe and she remembers feeling abnormally winded. For anybody that knows Jo, being winded by anything less than a 48 hour dance marathon (without food or water and carrying a 20 pound backpack) would be unusual. Finally, in September (about a week before getting pregnant) Jo was practicing another routine with Michael Kiehm and she had to take breaks to catch her breath much more often than normal. Yes, I know that a lot of women have trouble breathing when they dance with Michael Kiehm, but this was different!

So, there is some data that suggests that the Aplastic Anemia may have been coming on as early as the spring of 2004. If so, it's probably better that we didn't find out about it since the doctors would not have let Jo get pregnant until after the condition was resolved.

Tomorrow, we head on down to Houston where we will have a chance to see our friends, David and BeLynda, who inspired this blog. BeLynda grew up with Jo in East Texas and in September of 2004, BeLynda gave birth to triplets. She and David have done a wonderful job documenting the adventure of raising triplets on their blog - www.davidandbelynda.com.

On Thursday, we will see Dr. Anderlini at M.D. Anderson. Jo will have another bone marrow biopsy (under sedation, of course). We should have the results within a week.

P.S. Today is our 2nd wedding anniversary!!! Jo and I were married here in Lufkin, TX 2 years ago with our immediate families present. We met over 12 years ago and the past 4 or 5 years have been a concerted effort to slow our travels down enough to have a family. Every time I get Anna out of her crib in the morning or after a nap and she smiles with her big toothless grin, I realize how amazing the journey of the past 12+ years has been.

We wish you all a very Merry Christmas!!!

An Update from Texas

Jo's platelets were down to 11,000 today, so she has to go into the hospital in Lufkin, TX tomorrow and get a transfusion. When Jo went to see the doctor today, the nurse that drew her blood was named Anna and it turns out that Anna was a ballet student of Jo's when she was in the 4th grade. Anna now has two girls of her own, ages 7 and 9.

Jo's white cells are also down to about 1.6. Normal is 4.1 and higher and Jo's have held pretty steady around 2.3 for the past year. White cells are what fight off infections, so the low white cell counts cause a fair amount of concern. When Jo got an infection a couple of months ago, her white cells dropped to below 1.0 and Dr. Alvarez was freaking out! Okay, maybe he was expressing deep concern. I guess doctors don't really "freak out".

Anyway, the doctor in Lufkin wants Jo to wear her mask more often. I don't know if any of you have seen the masks today, but they are quite nice. They have been ergonomically redesigned to fit the face better than the old days. The only weird thing is that the manufacturers have made them to look just like a duck bill. I'm a little concerned that over time, we will confuse little Anna and instead of "mama" or "dada", her first word might be "quack".

Hey, has anybody seen a reindeer with a red nose? I've got a flight to catch.

More Platelets Today

Jo got a full batch of red cells and platelets last Friday, but for some reason, the platelets didn't stick around for long and she had to get more today. Jo joked with the nurses that the others must have been duds and she requested fresher ones for today.

The infusion center nurses, who see Jo quite often, gave her a wonderful, handmade shawl with a poem attached that one of the nurses had composed. As I read it, I must admit, I had to hold back the tears. They really did a nice job!

We are guessing that Jo may have to get more platelets this Friday in preparation for her big trip to Texas on Saturday. Anna and Jo will spend the next two weeks in Lufkin, Texas with Jo's family. I will join them on Christmas day.

We did get one good piece of news from Dr. Alvarez today. For the past couple of months, Jo has had to get IV infusions 2 times per week to lower her iron counts, which are elevated by the frequent blood transfusions. When Jo gets back from Texas, Dr. Alvarez is going to allow her to use a brand new "de-ironing" medication, which can be taken orally. This means 2 less "pokes" per week!!!

As long as we have luck on our side, I will most likely not have any major news until we see the doctors at MD Anderson on December 29th. Until then, we wish you all a very Merry Christmas and our heartfelt thanks for all your thoughts and prayers.

Hibernating Through the Winter

I hope everybody had a great Thanksgiving. Anna had several more Thanksgiving outfits and our digital camera is almost worn out. Thank you to Paul and Staci Giovino for having us over to their house for a wonderful Thanksgiving feast!!! And don’t worry. We did not make Anna wear the Turkey outfit to Paul and Staci’s house.

As for us, we are in hibernation mode, trying to avoid any colds or the flu. Jo had to get platelets the day before Thanksgiving and then again last Friday. Our next big doctor appointment will be December 29th at M.D. Anderson in Houston. Until then, no news is good news in regard to Jo’s health.

Our house is now going to be ready for us around the middle of January. As soon as we get back from our trip to TX for Christmas, we will begin making preparations for the move.

My mom flew back to Minnesota the day after Thanksgiving to help my father pack up their lake home for the winter and then drive back to Colorado. The week she was gone, we had a cousin of mine fly in from Minnesota to help us with Anna. Except for a trip to Arizona while Jo and I visit her family in Texas, my mom and dad will stay with us until we have some other form of help arranged.