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.