$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.

CONTROVERSY!

The following screen shot was submitted by Terry S. from Eagan, MN. Our expert team of forensic scientists and computer nerds are still working on determining the validity of this entry. As soon as we know more, we will be back in touch.

And the winner is...um...the winners are?

Oops! Apparently due to hanging chads, we had multiple emails last night claiming to be our next president. A full scale investigating into these matters will commence immediately and your winner(s) will be announced shortly. Thank you for your patience.

Cutting the Proverbial Umbilical Cord

Jo saw Dr. Alvarez today and she received big, big, biggity big news. She doesn't have to see him again for 2 months! She'll still pop by to get her blood drawn every 3 weeks or so, but that's no more inconvenient than a quick trip through the drive thru for McNuggets and a Milk. What more can I say? I think this chapter is officially closed.

Stay tuned for previews of next week's show!

We Need a New President...

No, this is not a political commentary. Within the next few months, we will appoint a new President of the Jo Thompson Fan Club. There are no duties involved and I doubt if the title will get you a discount on coffee at Denny's. However, there will be a nice prize package.

Our new president will get his or her picture posted on the blog. If the winner lives in the Denver area or wants to come to the Denver area, we will have you to our house for brunch at which time we will have a small inauguration ceremony. The new President will also receive one free hour of dance instruction with Jo. With no duties to be performed, that's not a bad deal.

So, how will our new President be chosen? At the bottom of this blog, we keep track of the number of visitors to our site - currently a little over 96,000. To be selected as our new President, all you have to do is be visitor number 100,000 - and you have to have physical proof. Take a screen shot showing the 100,000. If you don't know how to take a screen shot, take a digital photo. Send the picture to tim-and-jo@comcast.net. Once the authenticity of your picture is validated, we will contact you to get a picture for the press release.

Jo is doing incredible. The amount of PNH in her blood is less than it was last year. This could mean nothing or it could mean that her body is going to correct the situation over time. Only time will tell.

Jo is in Indianapolis this weekend at John Robinson's line dance event. People that see her dance absolutely cannot believe she had all those surgeries. In the next 5 weeks, we have 3 of our biggest dance events here in Colorado and Jo will be a major participant in all three. Next weekend is the Colorado Country Classic and then in July we have Pikes Peak Line Dance or Bust and Swingtime in the Rockies.

Colorado Country Classic

Pikes Peak Line Dance or Bust

Swingtime in the Rockies

Anna turned 4 earlier this week. She got a bicycle for her birthday and riding her bicycle is consuming her life.

Back from the NIH

Jo and I had a short, but successful trip to the NIH. I had time to make a couple of new friends in the clinic as we joked around about their upcoming un-sedated bone marrow biopsies. Ralph - you're a better man than I!!!

I had hoped to meet the coach of Olympic Swimmer, Dara Torres. He did have an appointment on the same day we were there, but our meeting was thwarted by the swine flu. When we arrived, Jo was asked if she had any cold symptoms. She said she had the sniffles. They immediately whisked us off into isolation. I guess you can't be too careful in a room full of people with somewhat compromised immune systems.

Really, there is nothing much to report. We will go back again each of the next two years and then we can cut back to every other year.

On a more interesting note, this weekend I attended a small gathering of Colorado PNH patients at Swedish Hospital. Jo was out of town teaching dance in Sacramento and she could not attend. The event was put on by a local hematologiest and cosponsored by the company that manufactures Soliris, the $480,000 drug used to treat PNH. I left my credit card at home.

I met 3 other people that have PNH and they are all using Soliris. I got to talk to two of the three for quite a while and they were both having significant difficulties caused by PNH and Soliris has been a tremendous help. One of the men has been on Soliris for 2 years and it is still working great. The other guy started to regress after being on the drug for 18 months. Unfortunately, I had to leave early before we got into the discussion of how to pay for it.

Jo's PNH does need to be monitored, but it is not disrupting her life. For now, we are happy that Soliris is available and every month that goes by means another month of real-world experience for the drug. We are excited about this "support group" and we look forward to future meetings. I learned more about PNH in those 2 hours on Saturday than I have in the past 3 years.

Next Up - NIH - 3 Year Checkup

In two weeks, Jo and I head to Washington, D.C. for her 3-year checkup. I had to check the calendar to make sure that was correct. It seems like about 10 years ago. We expect Jo to get great marks. At the same time, Dr. Alvarez has given us about 1000 questions to ask. Jo is doing phenomenal, but her "system" still a handful of little glitches. It's nice to know that Dr. Alvarez is always keeping a pulse on the small stuff, especially since we tend not to think about it at all.

We want to send out a special Thank You to Bullet Dawg. Random acts of kindness really are what make the world a better place. You have inspired us to look for places where we can go out and touch people's lives unexpectedly.

We'll raise up our glasses...

This morning, Anna and I were driving to Anna's school and on the radio, Toby Keith was singing...

We'll raises up our glasses
Against evil forces
Singing, "Whiskey for my men, beer for my horses!"

Jo was in her car driving right next to us and Anna was waving fast and furious. For the first time in 4 years (other than Colorado, New Mexico and Japan), Jo went to the airport to go and teach at a dance event. She will spend the weekend in Atlanta at the Peach State UCWDC event. For many years, Jo was the primary line dance instructor at this event that typcially brings in an extremely high number of line dancers.

It's often difficult to remember, but the past 4 years has, at times, been a bit inconvenient. As Jo drove off this morning, it really rang true that it is time to raise up our glasses and celebrate victory. 2009 has seeemed incredibly "normal".

Jo's counts continue to hold steady at the low end of normal and her shoulder gets better every day. She gets her blood checked every 3 weeks and her visits to Dr. Kelly are fairly rare. Her shoulder isn't quite ready for pull-ups, but pull-ups aren't much fun anyway.

So, if you're out and about this weekend, raise up your glasses and think of Jo. If whiskey is your thing, be my guest. Maybe slip a beer or two into your neighbor's dog dish. As for Anna, she'll probably go with a cold milk in a tall pink sippy cup.

Where in the World Should Jo Go?

Jo's shoulder is coming along fantastically! Last week, our good friend Wendy Moy was at our house. She had shoulder surgery back in August. Wendy and Jo were both on the floor practicing their physical therapy stretches. Pretty soon, Anna was on the floor also stretching her arm over her head. If I could have only gotten a picture!

Jo saw Dr. Kelly last week and everything looks great. Dr. Kelly asked Jo to come back in 3 months. THREE MONTHS??? Talk about separation anxiety! Dr. Alvarez sightings have also become much less frequent.

Since Jo is on the mend, she and I have talked about her possibly travelling to a few dance events in the next 12 months, but where should she go? We need your help. If you want to see Jo at an event in the next 12 months (or so) please let us know where you would like to see her. You can post your desires here on the blog or send us an email.

By the way...if you are a member of the "I hope Tim gets hit by a bus" fan club, your votes will not be counted.