Jo on Lufkin Television

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

The Lufkin Daily News

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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?

One Thousand Origami Cranes

Thanks to Hiro Suzuki and Tokyo Crazy Feet Line Dancers for their amazing Christmas Wish! 100 Line dancers in Japan danced over 50 of Jo's dances to encourage her and to pray for her quick and complete recovery at Go Jo Go Country Dance Party Dec. 12, 2010. They also made 3000 paper origami cranes which arrived on Christmas Eve.

http://en.wikipedia.org/wiki/Thousand_origami_cranes

Jo Visits Us for Christmas!

One of Santa's helpers showed up at The Triplet's house on Christmas morning and surprised the kids. Jo has been feeling great and her counts have been very high and extremely steady. It was definitely a tiring day, but well worth every moment!

Click here to see all the day's activities.

Straight from the Horse's Mouth

Jo got the results of her bone marrow tests today:

The patient has a history of myelodysplastic syndrome with abnormal karyotype, and is status post bone marrow transplantation. There is no diagnostic morphological evidence of myelodysplastic syndrome or acute leukemia in the current biopsy.

It can't really get much better than that! The tests show that 99% of Jo's blood cells are being produced by Eddie's stem cells. As David (father of the Triplets) likes to say, "The other 1% is nothing more than a rounding error."

Jo goes to the clinic on Thursday and then she doesn't go back until Wednesday next week. That's almost an entire week off - still taking 3 hours of fluids every day via her CVC and just trying to avoid any infections.

What's Up With These Counts?

On Wednesdays, Jo gets to see Dr. Anderlini and today he asked her when was the last time her platelets were over 250,000. That is a question for which we do not know the answer, but it was over 6 years ago. I also know the last time her platelets were that high neither one of us knew what platelets were!

Why are Jo's counts so high? The majority of Jo's blood cells are being produced by Eddie's stem cells. The bone marrow test results we are waiting for are supposed to tell us roughly how much of Jo's blood is being produced by Eddie's cells vs. remnants of her own stem cells, but it's safe to say right now Eddie is in control.

Unified in Prayer

Over the last 6 years we've been shocked how many times people from all over the world have told us that they and their friends have been praying for us. We appreciate each and every prayer that has been said on our behalf, not only by our friends and followers, but also by the hundreds, if not thousands of fellow believers that have prayed for us just because one of our friends put us on the prayer list at their church.

We do believe the power of prayer can be multiplied many times over when people unite to pray together. Over the next 3 days, a world-wide effort has been organized to pray for Jo's speedy recovery. If you would like to participate, please visit D4D - Jo Prayer for details.

This effort has been organized by Scooter Lee, Jo's long-time friend and co-founder of Dancing for The Dream. Scooter has provided tremendous support and friendship to our family over the years, not to mention some wonderful dance opportunities on various cruise ships and other tropical locations! Thank you Scooter for all you have done for us!

How Does Jo Do It?

I was recently asked the question, "How do you explain Jo's ability to be joyful and have such a good attitude regardless of what happens?”

Rather than answer this myself, I thought it might be insightful to find out how a few of Jo's close friends would answer. Little did I know that one explanation would be as eloquent and heartfelt as what you are about to read.

Earlier this year, our very good friend Staci Giovino gave the following invocation at her Rotary club.

Jo is a former Miss Texas, a world renowned line dancer and choreographer, a wife, a mother and my very dear friend.

Jo has been afflicted with what some would consider devastating health problems, all the while carrying herself with grace, never complaining – even when her bones could not support the weight of lifting her infant daughter – and always, always caring more about others than herself.

One night at dinner with friends, we asked her how she could manifest such peace given all the adversity she faced. She told us that every morning she woke up and chose her life exactly the way it was, and exactly the way it wasn’t. That may be a little hard to wrap your head around, so I’ll say it again: She chose her life exactly as it was, and exactly as it wasn’t. In doing so there was no room left to feel sorry for herself or to dwell on how things “should” be, and gave infinite possibility to being present and available to others.

As Rotarians we commit to “Service above Self,” but how many of us have already complained about something today? This is a gentle reminder to choose what is, get present, and create ample space in our hearts and minds for all of those people and causes whom we are privileged to serve.

A Visit From Anna!

For the first time since November 1st, Jo and Anna spent the day together. Jo's counts are all better than they were before she left Denver and as long as Anna is healthy, ocassional visits are much enjoyed!

Jo did get to stay home from the hospital this weekend. On Saturday afternoon a nurse came by our apartment and showed Jo how to use a portable pump to self-administer her fluids. Not having to go into the hospital makes for a very relaxing weekend at home.

Tomorrow Jo gets her first post-transplant bone marrow biopsy (with sedation). Her counts are great and over time her bone marrow test should show strong, healthy marrow.

November 2010 - In the Books

November 2010 is a month we'll never forget. This is the calendar Jo, Carol and Meema used to mark off ever day as it passed by. Many years from now, we'll look back at this month as one of the most important months of Jo's life.

Jo is doing great. Her counts are up, her appetite is coming back and her energy levels are increasing slightly every day. Slowly but surely, the damage the chemo did to her esophagus is being repaired. That's all exciting news, but what she's really looking forward to is the return of her taste buds. You'll know when that happens because I'll post a picture of us eating Spinach Dip from Houston's.