Turning Over the Reins

News from the trenches is very slow these days and I fear my days as a blogger are coming to an end.  Without paint, a painter cannot paint.  Without stone, a sculptor cannot sculpt.  Without flour, a baker cannot make delicious carrot cake muffins loaded with creamcheese frosting.

Please check back now and then.  You have not yet heard the last from me, but for now, I must say goodbye.  Thank you all for your faithful support and your kind words of encouragement.  Until the events of life once again inspire me to put pen to paper, I leave you in the wonderful and very capable hands of my extraordinary wife:

www.timjoandanna.blogspot.com

The last 7 years have been absolutely amazing and I truly hope you have learned as much as we have about playing the game of life - about swinging for the fences no matter what kind of pitches are thrown your way.  There is no hurdle that life can put in front of you that you cannot cross.  Take full responsibility for your entire life, even the things that are seemingly not your fault and you will live an extraordinary life.

In case life throws you a pitch that appears less than perfect, I leave you with the Szymanski Prayer.  We say it every day as a family.  It is and has been a tremendous rudder for our family and if it someday helps you navigate the waters of your life, we feel privileged to have had the opportunity to share.

May God give you the STRENGTH to always accept the present

exactly the way it is and exactly the way it is not,

and the COURAGE to never give up on the future!

9 Month Checkup

Wait a minute. I thought we had Jo's 9 month checkup almost 4 years ago. Oh yeah, that was before we started over! Actually, most of the last 7 years seems like ancient history. Combine that with the worst two long-term memories you may have ever run across and you have the perfect formula for living an extraordinary life independent of circumstances - now that sounds like a book title if I don't say so myself. Hmmm?

Jo went to Texas last week to see the good Dr. Anderlini. We had been hoping to start weening off the Tacro, but that is not the case. Jo's body and Uncle Eddie's stem cells are still learning to get along. Some days that process goes well and other days it looks like the Democrats and Republicans trying to agree on what to do about the budget deficit - kind of ugly.

Jo hasn't had any horrible signs of graft vs. host disease, but there are some little indicators. Dr. Anderlini says that even though her platelet counts are good, they have been slightly on the decline for several months. He thinks this fact combined with some other minor stuff warrants an INCREASE in Jo's Tacro. Doh!

Not all was lost on Jo's latest trip to the humidity capital of the world. Dr. Anderlini said she can start eating more fresh fruits and vegetables. She had been pretty much limited to Watermelon, Avocados and other thick-skinned items. I bought her a delicious Colorado Cantaloupe, but she doesn't seem interested.

Jo did give a bone marrow sample while she was at MD Anderson. After 15 or 20 times, it gets a little routine. To try to make things interesting, she tried everything she could to stay awake and watch the procedure. She remembers going in. She remembers coming out. The rest is a mystery.

Rocky Mountain High

Jo, Anna and I all made our way back to Colorado in July and began the process of getting settled into our routines. Jo has seen Dr. Alvarez a couple of times. He, of course, remains very cautious. It's more fun to visit him now that the parting remark is "See you next month!"

Anna and I were sick last week for about 6 days and Jo was able to stay healthy the entire time, which is extremely encouraging. That just shows how hand washing and being careful can help you stay healthy. On the other hand, Anna and I using the same spoon to share ice cream is probably not the best idea.

Jo will go back to see Dr. Anderlini in September and again in December. The next big step we're waiting for is the process of weaning off the Tacro - hopefully this fall or winter at the latest!

A Short Tangent

Over the last 12 months I have been very fortunate to have the opportunity to do a small bit of work with the NASA community in Houston. Especially in light of having to be in Houston for Jo's transplant, being able to do some work has been a tremendous experience.

This morning at 4:00am I was able to go on site at NASA and join the NASA community at an early AM gathering as they celebrated the landing of the very last Space Shuttle flight for the United States of America. In my 43 years of walking this Earth, I have never met a group of people that so universally loved their jobs as much as the people I've met here.

When I was young I dreamed of being an astronaut or at least working for NASA. Somewhere along the line I lost track of that dream, but isn't it interesting that by chance I end up with a handful of new friends that work for NASA who give me an opportunity to feel like, in a small way, I was a part of the last couple of missions?

Consider that once you create a possibility for the future, that possibility never goes away. Over time you may lose track of your goals, but my bet is that your sub-conscious mind will be working on those goals day after day, week after week, year after year.

To the NASA community, I salute your efforts and I congratulate you on your tremendous success. Thank you for making the hair on my arms stand on end year after year with every launch. Thank you for being an incredible example of how to dream big!

Bye Bye Houston

Earlier this week, Jo saw Dr. Anderlini one last time before hitting the road. In 10 minutes, the various hospital employees used the words, "graft vs. host disease" (GVHD) about 40 times. We get it. GVHD is the primary concern going forward and we have to watch for anything and everything that seems abnormal. Trust me. We'll keep a close eye on Jo. I promise. Now bring me a margarita please!

Speaking of margaritas, I don't think I can really convey how much fun we've had with David, BeLynda and the Triplets these past 9 months. Okay, Anna and I probably had more fun than Jo, but Jo had a LOT of fun too! In the category of making the absolute best of a less than perfect situation, the Smith Family gets an A+. Thank you for sharing so much of your lives with us this past year! We love you and we can't wait to see what the future holds for our two families.

Jo and Anna flew off to Minnesota early Wednesday morning where they found the high temperatures to be very similar to the Houston winter. I heard it snowed in the Colorado mountains about 10 days ago, so I guess highs in the 60s isn't all that bad!

Do you remember...

A trip to Lufkin is always a trip down memory lane. This one I just had to share.

Headed Out of Dodge!

Jo and Anna left the Houston area last night on a 6-week trip that eventually ends up back in Denver. After 3 weeks in East Texas with Memaw, Jo will do one last visit to see Dr. Anderlini and then they're off to MN for 3 weeks with Meema. If you live in Denver, don't look for them until July.

There are a lot of things I'll miss about Texas. I'll miss knowing BeLynda has always taken care of the details. I'll miss making multiple trips per day with David to HEB. I'll miss Kaden's spontaneous dances in the middle of the living room. I'll miss Zander's dedication to the study of dinosaurs and the universe. I'll miss Montana's 80 lb. greetings at the front door. I'll miss Regina's homemade pizza every Friday night!

What I'll miss most of all is coming into the Smith home and going to look for Anna. More than likely I would find her with Addison and the two of them would be playing together in the Pink Room. Or maybe they would be swimming together in the pool or perched together atop the monkey bars on the swing set.

I know Anna very much enjoyed the boys, but I think it was pretty special to have a sister for 9 months. Yes, they fought like sisters now and then, but much more often they helped each other put on makeup, they helped each other dress their dolls and they practiced their gymnastics together. When Anna gets older, I doubt she'll even remember momma having a bone marrow transplant and I'd be shocked if she remembered anything about momma having 8 surgeries in 25 months. If she remembers anything from her first 5+ years of life, I think she'll remember the experience of having a sister.

9 Pokes - A New Record

Jo saw Dr. Anderlini today and he suggested that she start her vaccinations. She was given a brand new vaccination record book, just like every grade school kid brings in to the school nurse. Three more visits are required to complete the vaccinations.

Jo's day went sort of like this:

Poke #1: Blood Draw
Poke #2: IV in her hand for sedation
Poke #3: Bone Marrow Biopsy - the BIG needle!
Poke #4, #5 and #6 - Left arm vaccinations
Poke #7, #8 and #9 - Right arm vaccinations

I suggested a body piercing to get the day into double digits. Jo gracefully declined.

A Happy Easter in East Texas!

We had a great time visiting with Jo's family over Easter. Anna and cousin Lacey Jo enjoyed playing with the bunnies and everyone loved the new additions to Uncle Eddie's farm...a baby donkey and a new Llama named Tony. Get it?? Tony Llama? I think you might have to be from Texas to get that one! Memaw Rita made her famous deviled eggs for the family get-together at Aunt Gaynell's house...lots of good food including Texas Bar-B-Que Brisket and chicken and dumplings! Yum!

Who are you?

This morning I signed up for a little triathlon in August and even as I sit here writing I’m filled with excitement. I thought about it much of the day yesterday and I couldn’t wait to get signed up. Yesterday was an awesome day!

Who are you?

When I was in my early 20s, I was doing graduate work at California State University in Sacramento. I’ve always loved school. I distinctly remember the beautiful walking bridge across the Sacramento River. I know this sounds pretty dorky, but I used to walk across that bridge after taking tests singing to myself, “My future’s so bright, I’ve got to wear shades!”

Who are you?

This morning was an amazing morning on the farm in Lufkin. The sun had not yet poked its way over the horizon. The donkeys, the horses and Uncle Eddie’s new llama were all anxious to say “good morning” as I made an early morning departure for Starbucks. It’s a good life!

Who are you?

I spoke briefly to Meema yesterday. Why is it that every year I get older and every year my parents get cooler? I can’t wait to be sitting with them at the lake this summer. Doing what? It really doesn’t matter.

Who are you?

My buddy Steve texted me a picture this morning of himself and his wife sitting at his brother’s house overlooking the Pacific Ocean. Later this summer, I’ll have some amazing bike rides with Steve, John, Mario and a bunch of others.

Who are you?

Preparations are being made for our return to Denver in a few months where we’ll be reunited with some of the best friends 2 people could ever ask for. If you live somewhere other than Denver (Monterey?) trust that just knowing you are in our future brings a huge smile to my face.

Who are you?

In 2013, we hope to make a trip overseas to one of our absolute favorite dance locations. You are all invited!

Who are you?

In the fall, our little girl starts 1st grade! Music, math, hooked on phonics and the occasional triathlon. Is there anything better than being a parent?

Who are you?

Consider that who you are has absolutely nothing to do with your past. It has nothing to do with the experiences you’ve had thus far in life, the schools you attended or the family environment you grew up in. It has nothing to do with the opportunities you’ve been given or the walls you’ve run into.

Who are you?

Consider that at this moment, I am defined by the future I’m living into and there are no circumstances or life events that could ever get in the way of that.
My buddy David in TX has become an incredibly important person in my life over the last 6+ months. Yes, David and BeLynda have taken care of our daughter and we will be forever grateful. That will be an act of generosity I’ll never forget. There is more to David that I want to share.

Who is David?

For me, David is the possibility of Rigor, Excellence and Discipline. Everything about him, everything he does, everything he says radiates Rigor, Excellence and Discipline. More importantly, he inspires me to have Rigor, Excellence and Discipline in my own life. These words are forever etched in my mind, but realize that words are just words. These specific words are powerful because I experience David living them on a daily basis. It is who David is. It is how he shows up for me every time I am with him.

Who is Jo?

For me, Jo is the possibility of Extraordinary Love. Love is many things to many people, but I distinguish love as acceptance. I accept you exactly the way you are and I accept you exactly the way you are not. When I see acceptance, love is always present.

People all over the world love my wife and it has everything to do with her way of being. When I watch Jo in life, I see love…even if I can’t hear the conversation. When I watch Jo get chemo in a hospital bed, I see love.

Jo loves life. She loves people. She loves to dance. She loves being a mom. She loves being a daughter. She loves being a sister and a friend. She loves the experience of being alive. Circumstances are irrelevant. I am touched, moved and inspired by the way she plays the game of life. Her way of being is also forever etched in my brain and my future is filled with the possibility of my being able to reproduce that love for my own life.

Who am I?

Who I am is the possibility of extraordinary being - the possibility of people living extraordinary lives. If there was a gift I could give to the world, I would share with every one of you the amazing people I have run across in my life. People that play the game of life full out. David’s Rigor, Excellence and Discipline. Jo’s Extraordinary Love. Paul’s Compassionate Leadership. John’s Unstoppable Generosity. And many others…

So, who are you?

Consider that who you are is determined completely by the future you’re living into…and consider that this is tremendous news. Yes, we all have to learn how to put the past where it belongs – in the past. But once you do that, the future is a blank slate and you can create anything. So live big, play full out, create a HUGE future…and never let circumstances stop you.

Muddy Trails Bash

Yesterday we spent a wonderful afternoon outside at the Muddy Trails Bash. For full video coverage of the race, visit the Triplets website here. For pictures, click here.

In the picture above is our friend Tim who Jo met at MD Anderson Orientation back in October. Tim had Leukemia and he received a Stem Cell Transplant very similar to Jo's. We saw Tim and his wife, Miranda, a lot in the Medical Center and now they just happen to be living down the street from The Triplets with Tim's mom for a while before they head home to San Antonio.

Congratulations to Miranda who took 2nd place among all women in the Muddy Trails 5k!

Jo on Lufkin Television

Click below to see what Jo is up to on Spring Break!

The Lufkin Daily News

KTRE - Lufkin Channel 9

Day +127 Spring Break

This week is Spring Break for Anna and I voted that we go to Cancun!!! Being the ever cautious, Jo had another idea. For the first time since last October, Jo will see her family in Lufkin. Anna is thrilled to get to spend the week with Memaw Rita.

Jo saw Dr. Anderlini last Thursday. All her counts were very good, especially her platelets at 115,000. Dr. Anderlini says he looks at the platelet count the most to determine how well the patient's bone marrow is doing.

In my mind, the next big milestone is for Jo to work her way off Tacro. When does that happen? It's kind of a fuzzy science, but we have heard more than once that the weaning process can start as early as the 6 month point. Because of that, I'm somewhat focused on Day +180!

Day +105 Cutting Another Cord

Jo got out of the hospital on Monday and yesterday we went back to see Dr. Anderlini in his office. Some very good things came out of her hospital stay.

When you have an infection, it's very common to see your WBC count drop extremely low, even if you haven't had a transplant. Jo's WBC count got down between 1 and 2. In the hospital she was given Nupogen shots to get her body to boost her WBCs and her counts shot up into double digits. Dr. Anderlini said this is a very good sign. Her new bone marrow displayed plenty of "reserve" horsepower by responding so strongly to the shots.

Secondly, it was just a good test. We would prefer not to test her new marrow, but a test is a test and Jo responded well to all treatment. By Monday she was feeling great!

Dr. Anderlini said it was okay to schedule her next appointment in THREE weeks! That sounds like great news, right? When he said it, I could see Jo's face get just a little pale. She had to ask a couple of times if he really thought that was okay. I've seen similar reactions from some of our other transplant friends. There is a great sense of comfort when you're just minutes from MD Anderson and never more than a few days away from your next office visit.

Jo's reaction reminded me of when I was a kid. I had to hold back the tears every year as I waited for the school bus on the first day of school. "Over there" often seems scarier than "right here". I always survived that first day of school and every day it got a little easier to be away from the safety of home. Jo too will do just fine being away from her doctors for 3 weeks, then 3 months and eventually 3 years. It's all part of the process.

Day +100 Yeah!

Today is Jo's 100th day post transplant and congratulations have been coming from all directions. Even the doctor poked his head back into Jo's room this morning to ask her if she knew the significance of today.

To celebrate this occasion, Jo and her friend Carol are kicking off a world-wide online bone marrow donor drive with a goal or registering 100 donors in 100 days! To take part or to just learn more, please visit:

www.teamjoandfriends.blogspot.com

By the way...Jo's fever is coming down and she will hopefully head back to our apartment Monday morning.

Day +99 A Little Speed Bump

Jo had a minor fever and chills last night. Because she is on Tacro to suppress her immune system, her fever required a trip to MD Anderson where we found out Jo would be admitted to the hospital for a few days. Dr. Anderlini came by and saw her this morning and he said not to worry, this is just a minor speed bump. However, Jo does have to stay in the hospital until her fever is gone for 48 hours.

Big news coming tomorrow!!!

(No, I am not going to be on the cover of the next GQ magazine. I am not going to be a contestant on the next SURVIVOR. And I have not been contacted [yet] by the Obama administration to straighten out our country's financial woes...but go ahead and keep guessing!)

Day +93 Goodbye Meema

Today we said "goodbye" to Meema for about the 12th time in the past 6 years. Meema has been by Jo's side for almost 3 months and this just might be her LAST extended stay as a caregiver. Do a quick Google Search on "the perfect mom" and you'll see a bunch of pictures of Meema.

For almost 3 months, Jo and Meema have been "stuck like glue". Her leaving does, of course, signify that Jo no longer needs a 24/7 caregiver and that's great news! Not only that, Meema and Boppa will be reunited in Las Vegas this afternoon which they are both very excited about. As hard as I try to see otherwise, my world still seems to revolve around me and I'm sad to see her go...so I'm going to be sad and grumpy for a while...at least until lunch.

Thank you Meema. You really are the best mom ever!

Address Change

In a couple of weeks, Jo will be moving to an apartment closer to Anna for the remainder of her stay in Houston. If you wish to send Jo mail in Houston, please use the following address from this point forward:

Jo Thompson Szymanski
2323 Clear Lake City Blvd.
Suite 180-253
Houston, TX 77062

This is a huge transition. Dr. Anderlini was very clear last summer that for the first 100 days it was more important to be close to him than is was to be close to Anna. I remember Jo saying to him, "I'm prepared to be away from her the entire 100 days if you think that is what is best." The doctors are very lenient these days when it comes to patients with children, but we could tell Dr. Anderlini was very happy about Jo's willingness to make short-term sacrifices for the long-term good.

Anna will remain with the Triplets throughout the spring and Jo will be able to integrate into daily activities at her own pace. We want to say thank you again to Zander, Kaden, Addison and their wonderful Mommy and Daddy for allowing us this luxury. You have made a life-long impact on our family. We love you!

Day +76 Survivor Class

We all attended Survivor Class today and what I got out of it was this...while on Tacrolimus (anti-rejection drug) Jo needs to take every precaution you can think of. "Tacro", as the cool people say, suppresses Jo's new immune system (from Eddie) to keep it from taking any violent action against its new surroundings.

A supressed immune system makes ordinary, every-day activities somewhat dangerous. I'm talking about everything from working in the yard, walking barefoot, un-protected sun exposure, eating fresh fruits, vegetables or raw seafood, social functions with groups of people, home renovations, being around children that may have received "live" vaccinations, etc. Because Tacro suppresses her immune system, her body is extremely vulnerable to a lot of things...wait a minute...isn't that what Dr. Anderlini said last week?

The bad news is that any sort of infection or even a common cold while on Tacro probably results in a trip to the Emergency Room.

Here's the good news. The average patient takes Tacro for 6 to 9 months and then tapers off of it. Once Jo is off Tacro for good, she'll start getting re-vaccinated - all baby shots and all childhood shots have to be redone. It'll take about 2 to 2 1/2 years to get all those vaccines and to get her immune system back to full strength. At that point, the list of trouble activities is virtually eliminated.

The other big thing I heard several times was to watch out for the temptations that come with feeling as good as Jo feels right now. On a daily basis, Jo can tell she feels great, but she can't tell how suppressed her immune system is. We even ran into some friends on the shuttle that went through a transplant 3 years ago. The lady told me the best advice she could give us was to be extra careful about everything for the first couple of years.

After Survior class we felt the need to celebrate...with Spinach Dip!

Day +69 Another Big Surprise

Today was Jo's 84th day with her 3-pronged CVC hanging out of her chest. Tonight is her first night post-transplant without it. Dr. Anderlini tried to create as much suspense as possible and eventually he said, "I can't think of any reason not to take it out." Jo and Meema just about came out of their skin!

The Real Scoop

Yesterday I went with Jo to see Dr. Anderlini. Things have been going so well, I was worried my chances to see him might be nearing an end. Probably not the case.

We can't imagine Jo doing any better than she has already done. At the same time, her counts have all dropped for 4 straight measurements going back a few weeks. Dr. Anderlini is not concerned. He used the word "fragile" to describe the counts of a patient post transplant and he said it'll be that way for quite a while.

We also asked several questions about life after Day +100. He said there is nothing magical about Day +100 and it is just something they give patients to focus on. He said to Jo, "You are extremely vulnerable to a lot of things for a long time." This is why you may hear transplant patients talk about the "new normal".

In a couple of weeks we'll go to the Survivor Class and we'll learn a lot more, but here are a couple of interesting tidbits. No international travel for 2 years. No cruise ships for a year. Driving is strongly discouraged while on the anti-rejection drugs, which could be 6 months or more. No applying for the television show SURVIVOR ever! No getting upset with your husband for watching too much football - it's important to keep stress levels low.

So, Jo is doing awesome and the "new normal" seems fairly normal already. Crowded public places were never my favorite thing anyway.

Big Surprise - Clinic Graduation!

Jo got a huge surprise today. She has officially graduated from the clinic! When the nurses found out today would be Jo's last day in the clinic they all came to her room and sang a rousing version of, "Na, na, na, na...Na, na, na, na. Hey, hey...goodbye." It was a lot like when the waiters at a Mexican restaurant find out it's your birthday.

Not only is Jo done with the clinic, she is done with her daily fluids at home. Her magnesium levels are holding steady and Dr. Anderlini said he can no longer find any reason to keep her coming to the clinic. The most exciting part of stopping the fluids is that Jo will not be using her CVC at all...meaning it can only be a matter of time before it comes out!

On her way out of the clinic, the nurses presented Jo with the graduation ribbon below. Going forward, she will just go in on Tuesdays to get her blood checked and to see Dr. Anderlini in his office.

Day +55 What's Next?

This is the view from my parents home in Minnesota where Anna spent the entire month of July last year. Many mornings Anna would get up and see the lake completely calm. She would say to my father, "Boppa, the lake is like a sheet of glass. We have to go for a boat ride."

Jo's transplant experience continues to be as smooth as glass. Her daily fluids have dropped by half to 500 ml and her visits to the clinic are only twice per week. In a couple of weeks or so, she'll stop going to the clinic altogether and she'll just go in on Wednesdays to see Dr. Anderlini.

Day +100 is talked about a lot with a Stem Cell Transplant because that is when Jo hopes to have have her CVC removed. One of our friends here in the building got her CVC out a couple of weeks ago on about Day +92. She had Leukemia and she first got her CVC back in May when she arrived at MD Anderson.

Jo takes Tacrolimus to suppress her immune system and decrease the risk of rejection. She'll have to take Tacrolimus at least 6 months and maybe longer. Some people do have to take anti-rejection drugs for many years or even their entire life, depending on their individual experience with Graft vs. Host Disease.

All Stem Cell Transplant patients are told to expect a full year to pass before getting back to full strength. "Full strength" for Jo probably means getting back to the dance floor. Right now I'd be happy with half strength which I'm hoping means a trip to Houston's for Spinach Dip!

One last update from Dr. Anderlini. Last week he told Jo that she can now start her subscription to Men's Health magazine. Her cells are almost all from Eddie and her chromosomes show an X and a Y chromosome. So...is she still my wife or is she now my "Bromance"? Will she continue to go by Jo or will she change her name to Joe? Can you tell I've been studying comedy with a very popular Clownfish here in Houston?