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.

24 Nights? Make that 25

Jo's first day at home was also supposed to be her first night at home, but it didn't turn out that way. Due to a nose bleed that wouldn't stop, Jo and Meema were back at MD Anderson from midnight until 4am. If nothing else, it was a great practice run just in case we have a more serious situation that requires a rush trip.

Since the 11th floor at MD Anderson is staffed 24 hours a day and they are taking care of transplant patients every day, Jo essentially has a 24 hour hotline. A quick call to the charge nurse on the transplant floor and just about any question or concern can be resolved.

Home Sweet Home

Or should I say home sweet home away from home? It's not quite like our home in Denver, but considering the evening lows in Denver this time of year, our little apartment is not all that bad.

Jo spent 24 nights in the hospital and I don't think I can really convey how excited she was to leave. Fresh air! A change of surroundings! No chemo pole! Actually, remembering that the pole is gone may take a few days.

Jo's primary day-to-day challenge right now is her energy level and it could take a while to get back to 100%. I'm going to put her at 10% of normal right now. I know that sounds incredibly low, but that's a pretty good guess.

Winner, Winner, Turkey Dinner!

Jo's white cell count is up to 4.3 today and we have packed up her entire room in hopes of being discharged in the morning. I asked to have the bellhop sent up with a cart and they just looked at me funny. After 24 days in the hospital it's pretty easy to accumulate a lot of stuff.

For the next two weeks, Jo will come back to the hospital every day for IV fluids and medications. For the most part she just gets to sleep at home. Our buddy Gerry left this morning and he looked like a new man standing in the hall completely detached from his Chemo Pole. Gerry is staying in an apartment just down the hall from us so I doubt this is the last you'll hear of him. As for our other 11th floor friends, we hope to cross paths in the clinic.

Jo had a nice Thanksgiving meal from room service today. If you can remember back to when this all started in November 2004, this is the second Thanksgiving spent in the hospital. On the bright side, one is much less likely to overeat in the hospital than at a traditional Szymanski Family Thanksgiving.

We also had a surprise visit today from Jo's friend Tamra Hext from Dallas. She and her husband had gone to see her cousin at St. Luke's next door. Tamra was Miss Texas a couple years before Jo and was a strong role model for Jo during those years. Because of that we made a very brief exception to our no visitors policy.

Happy Thanksgiving!

Preparing for Transition

Jo's WBC Count was 3.4 today. That is higher than her typcial readings over the past 4 years. Keep in mind she has been getting Nupogen shots that increase blood counts. A little volatility in her counts going forward would not be unexpected.

Jo's counts are definitely high enough to transition out of the hospital. However, her IV pole still has about 5 or 6 different bags delivering medication and various nutritional elements. Before she can come back to our apartment she must have a total transition to oral medication, she must demonstrate that she can eat enough on her own and she has to have the physical strength to handle the daily trips back to the hospital.

Jo is not coming home tomorrow. Starting on Friday, we'll do a day-by-day evaluation. Our buddy Gerry from El Paso might go home tomorrow morning - he got his stem cells two days before Jo. He said it best when I asked him about it. He didn't say, "I get to go home tomorrow morning." He said, "If things go well between now and tomorrow morning, I get to go home." That's just the reality of a Stem Cell Transplant.

per-spec-tive (n)

Jo's white cell count jumped to 1.4 and she had a little more energy today than the previous couple of days. I asked her how tough the last few weeks have really been. She said the toughest part has been the boredom. Today is her 22nd day in the hospital. She doesn't have the energy to do much, but she feels okay so she is very present to the SLOW passing of time.

I asked her about the physical part and she said it hasn't been too bad and she immediately compared it to her ATG treatment 4 years ago at the NIH. If you don't know about that experience, go back and read our posts from February, 2006. Back then Jo was in the hospital less than two weeks, but every day was intense - blood pressure of 50 over 30, physically sick every day, serum sickness, etc. The time passed quickly because every day was an adventure trying to get the roller coaster of symptoms under control. To be honest, we came into this procedure expecting it to be similar to the NIH, only longer and it just has not been that way.

I remember Dr Alvarez saying that a transplant is just as much a mental challenge as a physical challenge and I am only now understanding what he meant. On Thursday I'm going to a class about life after the hospital. There are long lists of things Jo cannot eat, symptoms of graft vs. host disease, cleanliness practices, do(s) and don't(s) (no more "5-second rule"), managing a list of medications among other things. The recovery process is long and challenging. Fortunately, the physical part is not even close to the memories etched in our minds from 4 years ago.

Do you want to hear the really tough part? We don't know why but a couple of our 11th floor friends have had to get chemo AND ATG in the days leading up to their transplant. Talk about perspective!

Day +12 - Let the Recovery Begin!

Yesterday Jo's WBC count was 0.2 which isn't much different than 0.1. Rather than get anybody's hopes up, I waited to see today's count which came in at 0.7. This is definite evidence of engraftment, right on schedule with what MD Anderson told us to expect. If we follow the same pattern that we've seen with other 11th floor patients, she'll be in the mid 1s tomorrow and over 2 the next day.

A normal WBC count is between 4.0 and 11. For the last 6 years, Jo's WBC count has usually been between 2 and 3. That is considered low, but not life-threatening.

Jo's hair has started to fall out, and over the weekend we shaved it off. Jo had been asking for us to go ahead and shave it all off just so she didn't have to muster up the energy required to wash it. Of course, Jo looks just as fabulous bald as she does with hair. She also has an absolutely stunning ability to accept "what is".

Waiting for Jo's WBC Count to Rise

About a week ago, Jo's White Blood Cell (WBC) Count got down to 0.1 indicating that her own Stem Cells had been all but destroyed by the chemotherapy. Until her WBC count starts coming up, every day is the same - it's all about keeping Jo somewhat comfortable. The chemo often causes sores in the patient's mouth or esophagus, making eating practically impossible.

Jo is also getting Nupogen shots, just like Eddie got before he donated his stem cells. The Nupogen causes bone pain that adds to the discomfort. Jo is getting pretty significant pain medication and nausea medication.

Within a few days, Jo's new stem cells are expected to "engraft" meaning they have worked their way into her bones and they will start producing new blood cells, the white ones being the most important. Those new white cells will repair the damage done by the chemo and they'll "clean up" the remnants of her old immune system.

As Jo's WBC Count increases she'll start to feel better every day and that is further enhanced by the emotional boost of seeing the WBC Count rise. It's somewhat hard to believe, but we are getting close to the home stretch of the hospital stay. Jo might not leave the hospital until early December, but once she gets to the point that each day is better than the previous day, it'll be quite a bit easier to see the light at the end of this first tunnel.

Changing of the Guard

Since October 31st, our very good friend Carol Morris from Denver has been with Jo on a daily basis. She helped Jo get situated at our apartment and then moved into the hospital. Every day she took notes on what the doctors and the nurses told us and every day she was by Jo's side encouraging Jo to take another walk around the block or go out to the lounge for a little social time. And yes, Carol has been responsible for all the Tweeting.

We have been very fortunate to have Carol with us these first three weeks and we are extremely grateful. Thank you Carol!

Last night my mom (Meema) flew into the Houston airport to take over the caregiving reins. As you know, she has been Jo's caregiver on many occasions over the past 5 years, but this will be the first time she gets to take care of Jo without also having Anna on her hip.

Day 8 - Knock On Wood

Is Jo having loads of fun? No. Would she rather be drinking girly drinks with umbrellas on a beach? Yes. Have the first 2 weeks been as bad as we had heard they would be? Absolutely not. Maybe Jo's side effects haven't been quite as intense as others may have experienced. Maybe MD Anderson is just that good. Maybe it's a bit of both.

Don't get me wrong. The nausea would have had me in the fetal position. Jo's a lot tougher than I am and MD Anderson is really good and proactive when treating her. Currently the toughest part is the mental exhaustion, often referred to as Chemo Brain. Focus is tough and conversation takes enormous energy. Still, if that is the worst of it, we'll take it.

So, I know y'all want updates and I almost didn't write this in fear of jinxing the situation. Do me a big favor and find some wood to knock on!

2 Miles into the Marathon

I've never run a marathon. I think I could handle the physical challenge. The mental challenge is another story. Most of us are addicted to mental stimulation. We can't go 10 minutes on a treadmill without our iPod playing our favorite tunes to help us pass the time. Unfortunately, most marathons don't allow the use of iPods.

Jo has barely begun her marathon and the mental challenge has started to ramp up. She is handling the physical part quite well. She spent a lot more time out of the room today than she has in the past week or so. Her energy is very low and is most evident in her thought processes which are currently very linear - just not enough energy to multi-task.

The mental marathon is somewhat different. Day after day is spent in the same room, the same hallways and the same lounge - all while pulling around the same chemo pole. In the not too distant future, we'll leave the hospital and quickly forget how long a day can be. For now, life has given us an amazing opportunity to practice patience. Nelson Mandela spent 27 years unjustly imprisoned. Surely we can survive another 10 to 14 days on the 11th floor of MD Anderson.

I'll Bet You Didn't Know...

As is true of most Minnesota kids, we ate a lot of corn growing up. Corn fields are quite abundant in Minnesota and we did our best to support the local economy. I always thought it was an extremely special treat when we had creamed corn. Just thinking about it today brings back great memories.

When we checked into the hospital 2 weeks ago we were told that for about 2 days after receiving her transplant Jo would smell like creamed corn. No way!!! Having a somewhat entrepreneurial mind, my first thought was, "Why hasn't Gucci thought of this?"

Jo did radiate the sweet smell of creamed corn for about 48 hours after her transplant, but maybe since it was Jo, I didn't think too much of it. However, now is a different story. We often walk laps for exercise on the 11th floor of MD Anderson and we occasionally run across the smell of creamed corn. Instantly, we look around to see if we can identify the patient who must have just got their new stem cells.

By the way...the 11th floor of MD Anderson has 52 patient rooms and every room has a bone marrow or stem cell transplant patient in it. They often have as many as 70 to 80 transplant patients at any one time and very soon, the transplant teams will get 26 more dedicated rooms on another floor.

Jo's status has not changed much and that is what we want to hear. She'll need another 1 to 2 weeks for her blood counts to start coming up and her strength to get to a point where we can take her back to our apartment. Any blog-worthy change of status before then would probably be a hiccup in the road, so keep an eye on the tweets over to the right, but don't be alarmed if there are no major health related blog updates.

Day 3 - Making Friends

Do you have problems? Would you like to know how to make all of your current problems disappear? Go out and get some bigger problems. If life hasn't handed you something like a bone marrow transplant, go out and take something on - raise a $1M for cancer research, reform the criminal justice system or find ways to help the homeless off the streets. If you can afford it, go to Africa and volunteer at an orphanage - if you live in Denver, I'll set up lunch with my client that has been to Africa and her stories will melt your heart. When you take on something really big, the small stuff disappears.

The most enjoyable part of our experience so far has been meeting our new friends out in the patient lounge. First there's Gerry from El Paso. Even behind a mask this guy has a smile that just lights me up! He is only on Day 5 and I can't even tell he's sick. I met his son today who is in medical school two blocks from here at Baylor School of Medicine.

Earlier today I met Temple, who Jo met in exercise class last week. Temple's mom gets her hair cut in Lufkin, TX by the same woman that cuts Jo's mom's hair. Temple's sister works with the mom of Jo's best friend in Lufkin.

Last night, one of the patients was walking exercise laps with her friend and they had their ipods cranking. They weren't really walking. They were dancing down the hallway and they didn't care one bit what anybody thought. On my way out of the building a couple of guys were watching television in the lounge and I commented on how good they looked. Their eyes opened wide and one guy said, "I've been here about 30 days and I'm getting out soon."

There have been plenty of others and one thing is common among them all. Every one of them has a positive attitude. They all have some pretty big challenges in front of them and it would appear as if none of them have any of the small problems that most of us struggle with daily.

So if it feels like you're walking uphill both ways to work every day, go out and find a mountain to climb. I'll bet your daily commute will start to feel like a walk in the park.

Don't Worry, It'll Get Worse

I was wrong in regard to the end of the chemo. Jo got a small dose of chemo today and she'll get a few more small doses on the 13th, the 16th and the 21st. Jo is one of the few people on the floor that still has hair and they want make absolutely sure it falls out!

Actually, the chemo has a different purpose. As Jo's new stem cells start producing white cells, the chemo is used to calm those new white cells. Without the chemo they would start running around like little warriors going crazy wreaking too much havoc on Jo's already beat up insides.

Jo told Dr. Andersson today that her throat is a little scratchy. In his soft, but authoritative European voice he reassured her, "Don't worry, it'll get worse." Unfortunately, everyone "in the know" seems 100% confident that Jo's comfort level will go down before it goes up.

Stay tuned. This movie has started a little slow, but those that have seen it before say the action picks up soon.

Day Zero - Happy (New) Birthday Jo!

Jo received her new stem cells today at about 11am. The entire process took only 5 minutes. When they pulled out the little bag of stem cells I thought for sure they had lost 3/4 of Uncle Eddie's donation. The nurse assured me that what we needed was in the bag.

Jo slept most of the afternoon, but she was up and about by dinner. Over the next 14 days, it is critical that she spend as much time as possible out of her bed while she is awake. Significant amounts of lying down creates an environment for pneumonia to develop. When we stand up or sit up, our lungs expand more when we breath and they stay cleaner and healthier.

The chemo has destroyed Jo's original stem cells, so right now she is not producing many white cells, red cells or platelets. For the first time in several years, Jo received a platelet transfusion today and she'll start getting red cell transfusions soon. White cells do not live long enough outside the host to be transfused. Sometime around Day 14, we expect to see Jo's new stem cells start producing white blood cells.

White cells are pretty important in our daily lives. They are the "helpers" that fight all the bad things that try to attack our bodies and they "fix" all the things that need fixin' as they say in Texas. That's what makes the next 14 days so critical. Without white cells, Jo's body just doesn't have the ability to fight off much of anything.

Looking at Jo right now, it seems like she'll be ready to go home in a day or two. It's hard to believe that is not the truth!

Bed Alert, Bed Alert

Just when I think I've seen it all, Jo gets put on "bed alert". Her bed has been physically alarmed so if she gets up, sirens go off and the nurses come charging in. That probably explains how "out of it" Jo has been today. Dr. Andersson, the attending physician, promised tomorrow will be better.

Jo started anti-rejection drugs today. Yesterday I made it sound like she takes these drugs for just 2 days. She'll actually take some sort of anti-rejection drug every day for the forseeable future.

Chemo Complete

Jo got her 4th and last dose of chemo this morning. We all know somebody that has cancer who maybe had chemo off and on for many months. This is a little different. Jo got 4 hefty doses over 4 days and we hope never to experience chemo again. A cancer patient has cancer cells potentially throughout their body that need to be killed. For the most part, Jo does not. Jo's chemo is designed to attack and kill cells in her body that are actively dividing and multiplying. This is primarily in the bone marrow.

Unfortunately, chemotherapy is a lot like sending a laser guided missile to destroy a weapons factory hidden in the middle of a residential neighborhood. No matter how good the technology, the neighborhood is going to suffer some damage. Jo is starting to feel that now.

I asked the doctor how the chemo knows not to destroy other things like our heart or liver. He said those organs don't have many cells that are actively dividing. Unfortunately, the stomach does. I guess this is why the chemo causes pretty significant nausea.

I asked Jo how to describe her current status. I gave her the options of "slightly unpleasant" or "moderately unpleasant". She smiled and came back with "rather unpleasant". We've seen a lot in the last 6 years including a few times where a smile was physically not possible, so I have to say we are doing pretty good.

Tomorrow and Tuesday Jo will get anti-rejection drugs to get ready for her new Stem Cells on Wednesday. A lot of people have asked for the date of Jo's "surgery". There is no "surgery" involved with any of this. Everything is done through Jo's blood stream.

Wednesday will be referred to as Day 0 as we count the days Jo has lived with her new Stem Cells. Every patient is different and there is no universal magic number, but 100 Days is the goal everybody keeps their eye on. At 100 Days, each patient is considered to have crossed over a fairly significant hump.

Jo - 1, Chemo - 0

Round 1 goes to Jo. She had her first batch of Chemo this morning. When I saw her between 9am and 11am, she felt great. Jo's Nurse Practitioner's name is Tracy and she used to work for Dr. Alvarez back when Jo was first diagnosed 6 years ago. Tracy did say that Jo may not start to have side effects until next week. I'm very happy that she'll be comfortable for this Saturday's BIG Air Force / ARMY football game!

I took the shuttle bus from our apartment to the hospital for the first time last night. Only one other lady was on the bus with me. Her husband had just received his Stem Cells earlier in the day. Believe it or not, they live in Parker, CO...no more than about 15 minutes from us!

Rain Delay

With the World Series ending earlier this week, I'll bet you thought my baseball analogies were over. Not so fast!

It did rain all day in Houston, but that is not what caused the delay. When Jo checked into the hospital last night she had a slight fever. Anna had been sick on Sunday and Monday and Jo more than likely got a little bug from Anna. Jo has gotten antibiotics for the last 24 hours and her chemo has been pushed back to tomorrow.

The schedule for the next 7 days goes like this: 4 days of chemo, 2 days of anti-rejection drugs and then the Stem Cells go in. Right now, Day Zero is expected to be next Wednesday. Day Zero is the day the patient gets the new Stem Cells and many patients refer to Day Zero as their 2nd Birthday.

Extraordinary Greatness

Have you been watching the World Series? Don’t you wish life was like batting practice instead of the real game? In batting practice, your coach throws “cupcakes” right down the middle, you hit almost every one out of the park and all your buddies tell you how awesome you just hit the ball! In the real game, the opposing pitcher throws a curve ball on the outside corner and then a slider high and inside. At that point, you’ve got two choices… 1) go back to the dugout and whine and complain about the terrible pitches you’re getting…or…2) hit the ball out of the park anyway.

On October 1, 1932 in Game 3 of the 1932 World Series, Babe Ruth pointed to the center field bleachers, letting the Chicago Cubs know where he was going to put the next pitch. On the very next pitch, Ruth blasted a 440 foot home run to the deepest part of center field. Jo checks into the hospital tomorrow night and the pitches start coming on Wednesday. As I sit here today, having considered all there is to consider…I’m pointing to the center field bleachers.

We have the very best transplant facility in the world. We have a perfect bone marrow match. We have the absolute best situation for Anna. We have tremendous support from the great city of Denver and dancers all over the world. We have incredible family support. But most of all…we have Jo. Anyone who doesn’t see the next pitch being hit to the center field bleachers just doesn’t know Jo.

Donkey Kick to the Chest

Jo got her CVC put in today and afterward I asked her how she felt. She said, "I feel like one of Uncle Eddie's donkeys just kicked me in the chest." By the time we talked, Jo had taken some good pain medication, so we actually had a pretty good laugh. The doctor had told her that every now and then the CVC goes up into the neck instead of down into the heart where it belongs. If that happens, it has to be taken out and put back in. Of course, after he said that Jo was absolutely sure she could feel it going up into her neck. An x-ray later confirmed it was where it needed to be.

Tomorrow Jo gets a very small mini-dose of chemo and then she has her blood drawn every hour for the next 10 hours. They do this to make sure she doesn't have any reactions like swollen hands or numb-tongue (as was experienced by Capt. Kirk in the new Star Trek movie that I watched 8 times last weekend).

Jo and Eddie got a tour of the Stem-Cell Transplant floor today. Jo said everybody looked like they were doing pretty good. It appears the anticipation of a transplant may be quite a bit worse than the transplant itself. Let's hope so.

The Gift of Life

Eddie spent most of today hooked up to an apheresis machine. As is typical for members of the Thompson family, Eddie went well above and beyond the call of duty. When the final tally was complete, Eddie had donated over 16 MILLION stem cells. I hope he has a few left for himself!

Tomorrow is a big day for Jo. She'll have a Central Venous Catheter (CVC) inserted into her chest. Similar to the PICC line she had almost 5 years ago, this device will be used to administer medication and draw blood over the next several months.

This Sunday, we'll move into an apartment just down the street from MD Anderson. As soon as we are settled in, I will post a local address where notes and cards can be sent.

Kirk to Enterprise...Beam Me Up

For all you husbands out there, if your wife has not yet determined her Halloween costume, I highly recommend the Lt. Uhura outfit from Star Trek. Does this look like a woman 10 days away from being admitted to the hospital for a Stem Cell Transplant?

Where Have all the Merry-Go-Rounds Gone

Eddie starts taking Neupogen shots tomorrow, twice per day. He'll take shots for 4 days that cause his stem cells to jump out of his bone marrow and into his blood stream. On Tuesday, he'll go through a 4 to 6 hour process where blood comes out of one arm, goes through a swirly machine and then back into his other arm. The stem cells are separated from his blood via cetrifugal force, much like the merry-go-round Anna and I rode in Salina, KS, just before she crashed on her bike and looked like a baseball player that had slid head first into home plate. Those stem cells are then thrown in a big freezer, possibly next to a few pints of Ben and Jerry's with my name on them, until Jo is ready for them in a couple of weeks.

Jo doesn't have to go back to MD Anderson until next week. For now, the focus shifts to tomorrow's big pumpkin carving party and a visit from Eddie's family who have all driven down from Lufkin to spend the weekend with us.

So, Anna and I really did play on the Merry-Go-Round in Salina and that is the first time I can remember seeing a Merry-Go-Round in many years. Does your local park have one? I'll bet not. Have they been deemed unsafe? Have they been banished to protect us from hurting ourselves? No more Merry-Go-Rounds. No more riding in the back of the pick-up truck. No more drinking out of the waterhose. No more sticking our tongues to the flagpole in the middle of a Minnesota winter. Today's kids might be safer, but we did have a lot of fun back then.

Uncle Eddie to the Rescue!

I imagine few (if any) experiences in life can compare with the opportunity to save the life of another. Without Eddie's bone marrow, we would have had to rely on the worldwide repository where finding a match is not guaranteed and even then, an unrelated match is never as good as a sibling match.

Jo and Eddie spent most of today at MD Anderson doing tests and paperwork. Tomorrow Jo has her favorite procedure - the dreaded bone marrow biopsy - and yes it is with sedation. I'll see Jo tomorrow at the hospital so I'll get more details.

Stress & Anxiety Start to Build

Jo was in Chicago last weekend for the Windy City Line Dance event and she had a fabulous time. She is all settled in here in Houston with Anna and she has started getting 7-day reminder emails from MD Anderson. Eddie will join us on Monday and Tuesday we hit the ground running.

How is Jo? As calm and peaceful as ever.

How am I? Well, I'm a nervous wreck and I'm starting to buckle under the stress... Several people have commented on how much they like my writing and I'm terrified that I won't be able to perform this time around. It's been over 18 months since Jo's last major surgery. What if I'm not funny this time around? What if I've lost my mo-jo? Yeah...I hit the ball out of the park the last couple of years. So what? The Minnesota TWINS won the 87 and 91 World Series. That's history! Currently, they've lost TWELVE postseason baseball games in a row and their fans (me included) have all but given up on them. What if I disappoint my fans just like the TWINS have disappointed all of us Minnesotans?

With the TWINS early exit from postseason baseball, you're probably wondering what Jo will now be doing on November 3rd? I really don't know. All I do know is we won't be watching the Yankees.

Anna's New Routine

Last night, Anna and I galloped into Texas and life changed in a major way. One can only imagine going from being an only child to being one of FOUR!

To keep tabs on Anna, visit www.DavidAndBeLynda.com

A Few Key Dates

October 11th - Anna Starts Kindergarten with the Triplets in Houston

October 12th - Jo Arrives in Houston

October 19th - Jo and Eddie Start Testing at MD Anderson

November 2nd - Jo Checks in to the Hospital at MD Anderson

November 3rd - Jo rests peacefully as she watches the Minnesota Twins win the 2010 World Series with a grand-slam home run in Game 6 which goes down in history as the greatest World Series game ever played!

$12,423.40 Raised at Jo's Kickoff Party

We expected a great party. We expected a lot of people. We expected some incredible dancing. We didn't expect exceeding all expectations!

Thank you to all who came and also to all who supported us from afar. We are touched by the overwhelming generosity and kindness we have seen in the past few weeks and we are forever grateful.

Transplant Kickoff Party - Huge Success!

Last night we had the biggest party Centennial, CO has seen in probably a very long time. We did shut it down at midnight, but I'm sure the neighbors were starting to wonder what was going on. Just a few of the preliminary numbers:

Roughly 350 people

7 DJs

An army of volunteers

80 lbs. of chicken

35 lbs. of green beans

27 lbs. of fried rice

10 lbs. of lo mein

4 sheet cakes

By the way...not a single pound was gained by any attendee. Putting that many people into a moderately sized dance area kept the air conditioners working overtime. Temperatures still rose to almost 80 degrees at times allowing each and every guest to sweat off every calorie consumed during the dinner hour!

Jo's new line dance, Shanghai Surprise (choreographed with Rachael McEnaney) was a huge hit. We had an amazing demonstration from Jordan and Jessica and even a surprise performance from a barbershop quartet. Dancing went from 2 in the afternoon until just after midnight and Jo got to show off her new "do".

We have many, many people to thank: Scott and AJ, Scott and Bonnie, Eddie and Wendy, Patti, Dave and Ivory, Farrell, Tom, Monty and Kristin, Troy and Emily, Jim, Erin, Robin, Vern and Judy, Pat and Kevin, Jordan and Jessica, Taami, Dana, Kimberly, Vicki and more. A special thanks to the army of volunteers that helped with setup, teardown, food preparation and fundraising.

I also want to specifically thank all of the professional dancers and instructors that came. We had a tremendous amount of talent in one location for a day and that is a key reason why the event was so successful. We appreciate your friendship and your support!

As soon as our number crunchers are finished doing what they do, I'll have more statistics for you regarding the fundraising and I'll even see what I can do about posting a picture of Jo's new haircut for all to see.

Save the Date... Saturday, Sept. 18th

Jo Thompson Szymanski Bone Marrow Transplant Kickoff Party!

2:00pm – 5:00pm - Line Dance Party with Jo

5:00pm to Closing - Full Dinner Buffet Provided

5:00pm to 6:30pm - Social Hour

6:30pm to 7:30pm - Jo Teaches “Shoes of Another Man” WCS Line Dance

7:30pm to 10:30pm - West Coast Swing, Salsa, Country Open Dancing

- Multiple Dance Rooms with Multiple DJs
- Special College Football Social Room for the Non-Dancers!

Recommended Donation: $20 per person
Stay as Long as You Like

Jo’s transplant will require a 4 to 6 month stay in the Houston area. Proceeds will be used to help cover her expenses. Any proceeds not used for Jo’s medical expenses will be donated to the Aplastic Anemia & MDS International Foundation (www.AAMDS.org)

Location:

Centerstage Starz Dance Studio
8150 S. University Blvd. Unit 120 - Centennial, CO 80122
NE corner of University Blvd. & County Line Rd.
(Next to “Pump It Up”)

Decision Made...No Looking Back

We did get the results of the MD Anderson bone marrow biopsy. Monosony 7 showed up in 50% of Jo’s cells. 50% is really the same as 60%, which isn’t much different really than 20%. Jo’s bone marrow is moving in the wrong direction.

On Friday, Jo saw another Hematologist/Oncologist here in Colorado. We had met this lady one time before when she was covering for Dr. Alvarez at one of our local hospitals. She appears to be somewhat close to Jo’s age and she has a wonderful connection when she speaks to you. She looked at Jo and said, “You have flawed bone marrow that is now again showing signs of breaking down. I think you will have to get a transplant eventually no matter what you do today. If it were me, I’d do it now.”

There was much more to this conversation than just the words. There was a woman to woman connection. Her words seemed to go right to Jo’s heart and I could tell Jo’s decision making process was coming to an end…the anxiety of having to make a tough decision had been replaced with the peace of having made it.

Our schedule is still being worked out with MD Anderson in Houston, but our hope is to start Jo’s transplant in mid October and be back in Denver by February or March. MD Anderson does roughly 600 transplants per year and they are considered some of the world’s foremost experts. Jo’s family is just 2 hours north or Houston, which is a huge help when it comes to the support necessary to get through a procedure like this.

And what about Anna? Anna is going to live in the Magical Kingdom at Disney World the entire time we are in Houston. Of course I’m kidding, but it’s not actually that far from the truth. Our wonderful friends, David and BeLynda who live about 30 minutes north of MD Anderson have volunteered to keep Anna while we are in Houston. Now to the Disney World part…

David and BeLynda have TRIPLETS (2 boys and 1 girl) that are just 9 months older than Anna and they also started Kindergarten earlier this month. Having triplets requires a lot of structure, discipline and a bit of help. David and BeLynda make that part look easy. In addition to that they are two of the most loving and creative parents we have ever met.

A brand new sister and 2 brothers is pretty “Magical” for a 5-year old, but there is a lot more to this story and I’ll let that unfold as we head into the fall.

For the record, Jo’s Monosomy 7 is the primary concern right now. Since the bone marrow produces our blood elements, all malfunctions are considered very serious. However, there is still a spectrum of bad to really bad. Aplastic Anemia is at the left end of that spectrum. It’s bad, but it’s nowhere near the end of the world. Monosomy 7 and some other things starting to show up in Jo’s marrow indicate that Jo is moving to the right. The stuff in the middle is not good, but on the far right is Leukemia. We’ve talked to the best doctors in the world, and the consensus is that with a perfect bone marrow match, the time to transplant is now.

Waiting...Waiting...

Last week, Jo saw Dr. Anderlini in Houston and we really didn't learn anything we didn't already know. MD Anderson pulled their own bone marrow sample from the opposite hip from where the May and July marrow was pulled. When we get the results of that sample back, we'll have news. Until then, we are just trying to get settled into the Kindergarten routine!

Kindergarten Starts Tuesday!

Anna starts Kindergarten on Tuesday. She learned a lot in pre-school, but probably the most important thing she learned is...

"You git what you git and you never throw a fit."

Doesn't that pretty much say it all?

A Comforting Story

Yesterday, Jo and I talked to a 52-year guy in Denver who, on the phone, sounds like a non-stop bundle of energy. 14 years ago, he was diagnosed with Stage-4 Leukemia and he was given a 6% chance of survival. He did an autologous bone marrow transplant (his own marrow) and it worked! 3 years later he relapsed and had Stage-4 Leukemia again. He then got an allogeneic transplant (using his brother's marrow) and again it worked! Today he takes a little medication for cholesterol, but nothing that would be considered related to his transplant.

The story gets even better. He says he was told by many people how tough the proceure was going to be. He said he did get some graft vs. host disease and one time his temperature hit 106 degrees, but overall neither time was as difficult as he was led to believe. He said that if he had to do it again, he could do it standing on his head!

Many people think walking around on broken hips for two years would be an extremely tough experience. For me, it probably would have been. For Jo, she made it look like a cake walk. So much of life is a matter of attitude and the circumstances put before us are rarely as grave as we make them out to be. If I had to bet on anybody setting the new all-time bone marrow transplant recovery timeframe record, I would bet on Jo.

We did see Dr. Anderlini today at MD Anderson in Houston and Jo is scheduled for more tests tomorrow. More details to come...

By the way...Dr. Anderlini has not aged a single day in 5 years...neither has Jo.

Monosomy 7

Jo’s results have come back from the NIH and 60% of her cells are testing positive for Monosomy 7. As expected, the NIH is recommending a Bone Marrow Transplant. HOWEVER, Jo’s day to day life is extremely normal and quite pleasant, so there is NO rush. In other words, we’re not “freaking out” and we request you also remain calm. (One of these days, I have to get a video of Anna telling a story where she says something like…”I was riding my bike down the street and a dog came up and I was ‘freaking out’. There’s something very cute about a 5-year old thinking she was freaking out.)

Jo is in a very unique situation right now. Think of it this way…how many of you have had a bone marrow sample taken recently just so tests could be run to check for chromosomal abnormalities? I’m guessing…none. Jo’s yearly tests have allowed us to find the problem before it has gotten bad enough that it affects her daily life. The gives us time to explore options and do some research.

Next week, Jo will head back to MD Anderson in Houston and talk to Dr. Anderlini. Do you remember him? His famous quote was, “Don’t ask the barber if you need a haircut.” Dr. Anderlini is a BMT specialist at MD Anderson, which is considered one of the leading BMT locations in the world. We fully expect Dr. Anderlini to recommend a transplant. The point of the trip is to let MD Anderson do all of their preliminary tests and to get reacquainted with their procedures.

Will Jo get a transplant? We are not 100% certain that she will, but we have been told to restart our communication with the various BMT options – MD Anderson, Dr. Childs at the NIH, etc. If Jo does get a transplant, when will it be? Again, we don’t know the answer. Because her bone marrow is doing a good job of producing the blood elements necessary to sustain life without transfusions, nobody is rushing off to the hospital yet.

And then there is Dr. Alvarez. A transplant is a very serious decision and once you go down that road you never look back. Dr. Alvarez has not yet recommended a transplant. If he did, we would probably be making arrangements right now. Dr. Alvarez is a firm believer that every alternative should be explored before deciding to transplant and he is doing that research now. We are extremely lucky to have him in our back pocket. His recommendation to the NIH was a tremendous recommendation 6 years ago and if there is any alternative that merits consideration today, Dr. Alvarez will find it.

I'll report back after I hear what Jo finds out in Houston...

Jo's PNH Numbers

Over the past 4 years, we have seen Jo's PNH figures drop to the point that she will now start working her way off her blood thinner, Coumadin. The NIH tracks "PNH Clones" as a percentage of the total number of cells in her blood. They look at Red Blood Cells and Neutrophils, which are the most abundant type of white blood cell.

4 years ago, 43% of Jo's Red Blood Cells and 86% of her Neutrophils had the PNH problem. Last year, those numbers had dropped to 39% and 63%. This past May those numbers dropped again to 19% and 43%. The doctors at the NIH say that once you go below 50% blood thinners are not necessary.

Back to the NIH

Back in May, Jo and I visited the NIH for her 4-Year Checkup. Every time we go, they take a bone marrow sample and run a multitude of tests. One test is to identify how many of Jo’s red blood cells have the PNH clone. Another test they do is to look at 20 of Jo’s cells and analyze the chromosomes of each cell. “20 cells” doesn’t sound like a lot, but evidently, it’s enough and it’s a “laborious” process.

About 3 weeks ago, Jo got a call from Dr. Sheinberg at the NIH. The good news is that Jo’s PNH clone has dropped below 50% which means it is okay for her to start working her way off Coumadin. This was tremendous news! Once she is off Coumadin, she would be literally “drug free”. The bad news was that he wanted us to come back to the NIH so they could take another bone marrow sample.

4 of Jo’s cells (20%) were missing Chromosome #7. The doctors referred to this as Monosomy 7. Her doctors want the bone marrow tests done again to confirm the results of the last test. As Dr. Alvarez would say, “Three things could happen.” 1) The chromosomal abnormality could go away. This does happen in a certain number of people. 2) The chromosomal abnormality could come back at 20% again. If this is the case, we’ll go back in 6 months to have her bone marrow checked again. 3) The chromosomal abnormality could increase. If this were to happen, the NIH would most likely recommend a bone marrow transplant.

Don’t forget that Jo’s brother is a perfect bone marrow match. The NIH considers this Jo’s “Ace in the Hole.” In just the 5 years that we have been going to the NIH, they have made amazing advancements in their bone marrow transplant research. They are not shy about telling us that if Jo ever needed a transplant, they feel she would do extremely well.

The doctors were very clear that they are not fans of Monosomy 7. They were also very clear that they were surprised that Jo’s bone marrow looks so good considering the chromosome abnormality. We should have the results of this latest test in about 2 to 3 weeks.

4-Year Checkup at NIH

Jo and I just got home from Washington, D.C. Denver greeted us warmly with a May snowstorm to make the trip from the airport just a little more exciting that we would have wished for. We want to express a special "Thank You" to our wonderful neighbors Debbie & Thompson and their family (especially Christie) who once again took care of Anna for a few days. Fortunately Anna was sleeping when we picked her up, otherwise she probably wouldn't have wanted to leave!

When Jo had her initial consultation this morning, the word "normal" was used about 14 times. They are extremely happy with Jo's progress and they even referred to her as "the poster child for Aplastic Anemia".

After a sedated bone marrow biopsy, we went back up to the clinic to see Dr. Young and Dr. Sheinfeld. We had hoped they would tell us we could put off our next NIH visit for 2 years, but that is not the case...and oddly enough, that is actually good news.

Jo's PNH clone percentage has been decreasing each year and they expect this year's numbers to be even better - it'll take a couple of days for those tests to be completed and the results to be added to Jo's file. Dr. Young wants Jo to come back next year because he thinks there is a reasonable chance that her PNH clone will decrease enough that she may eventually be able to stop taking Coumadin. After we get this year's numbers, I'll explain the PNH measurements in more detail.

The Jo Thompson Fan Club

After 3 months of intense research and a little help from various government agencies, we have determined the winner of our contest to find the next President of the Jo Thompson Fan Club. We had three people claim to be the winner. As it turns out, Terry S. from Eagan, MN ended up being my brother. I can't believe I didn't figure that out earlier.

Now, regarding the other two claims...I have no idea how this can happen, but we did have two people capture screen shots showing that they were visitor number 100,000. My first idea was to have a tie-breaker - maybe something like a fire starting contest like they do on SURVIVOR when they need to break a tie. Jo, being the eternal ambassador of good-will suggested a much easier solution. Since one winner lives in the U.S. and one winner lives in Canada, we will have a President of the U.S. Chapter and another president of the International Chapter. Of course, I will personally remain president of the Polish Chapter.

And the winners are..........

U.S. Chapter

Betty Sethman
Nacogdoches, Texas

Jo met Betty and her sister Mary on a trip to Lufkin, TX for Christmas. Mary's niece, Yalonda is Jo's sister-in-law.

International Chapter

Deb Grimshire
Winnipeg, Manitoba Canada

Jo and I first met Deb at several dance events we attended at the Shooting Star Casino in Northern Minnesota back in the late 90s. The Shooting Star would pick us up at the Fargo, ND airport in a stretch limo and drive us an hour to the Casino. The dancing was always fun, but the parts we remember most are the endless hours laughing with Deb and her dance partner Glenn.