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.

Merry Christmas!

‘Twas the night before Christmas and although it was late
I made time to watch CNBC’s “Review of ‘08”

Merrill and Lehman, Bear Stearns and more
How did we survive this financial downpour?

Even at Church, mention was made
These trying financial times have everyone afraid.

Please remember it’s all in your head
If you look another direction, green might appear red.

To these financial problems, our family isn’t immune
But Jo’s health has us singing a very different tune.

For the first time in four very long years
The outlook for Jo’s health may bring you to tears.

The surgeries are finished and her blood counts look great
We’ll never forget the Christmas of ’08.

So, if your 401(k) has you feeling kind of down
Go to the nearest hospital and just look around.

I know it’s hard to lose what you’ve worked for so long
But you can’t take it with you after you’re gone.

Now, I’m not saying you should give up on your dreams
Many games are won by underdog teams.

We all face setbacks in this game we call life
And the most important lesson of all, I learned from my wife.

No matter what hurdles are thrown in your way
You can still choose to have an extraordinary day.

If you do this each and every day of your years
An extraordinary life is what eventually appears.

From our family to yours, may 2009 be out of sight
Merry Christmas to all and to all a good night.

Record Counts

Jo showed me her blood counts last night and I immediately assumed foul play. Platelets at 232,000 and white blood cells at 6.2. This had to be a hoax. Dr. Alvarez had hoped Jo's white blood cells would get to 4 before her most recent surgery. Jo's platelets haven't been over 200,000 in 4 years!

Jo swears the results have not been "doctored", but would Dr. Alvarez agree? Indeed these are truly miraculous numbers. They are also totally unexpected only 10 days after major surgery.

The only thing in our lives that has changed recently is the bone-chilling cold temperatures in the Denver area. Is it possible these freezing cold days have caused Jo's increased blood counts? If so, would it be beneficial to move to Alaska? Is there an igloo in our future? Stay tuned.

Anna's Tub-Side Manner

Jo stopped her pain medication today and switched over to Tylenol. The incision looks to be about the same size as the incision was on her left arm for anybody who has seen that - probably a good 6 inches.

The third day after surgery is always a big deal because Jo gets to take a bath or a shower. After supper on Monday night, I said to Anna, "Let's go and help Momma with her tubby." Well, Anna completely latched on to that idea. She ran to get a few toys for Momma and a bucket for pouring water over Momma's head. Anna washed Momma's hair and carefully rinsed her incision. When Jo's tubby was finished Anna said to her, "Even after you're better, we can still help you with your tubby."

Anna helped Jo with a tubby again tonight. This time, when the tubby was finished Anna said, "Okay, now you can play for five minutes."

The Home Stretch?

Jo came home from the hospital today and she is doing well. She's taking some hefty pain medication and she slept much of today. There is just something about this time that seems final. When we left the hospital today, it felt more like "goodbye" than "see you next time". P/SL has been great, but if we never go back there, I won't miss the hot dogs, the pizza or onion rings.

Last night I gave Jo a tour of the entire hospital from my perspective. In 8 trips, she had never seen the cafeteria, the gift shop or the surgery waiting area where all the furniture had been replaced since visit #7. We even tried to sneak a peak at the newborns on floor 3 and we were pleasantly surprised to find volunteers handing out bowls of clam chowder.

All things must come to an end. P/SL will still be near and dear to our hearts for the next 6 to 8 months as the last medical bills get straightened out and reconciled, but we are headed down the home stretch. Our two-year "partnership" with P/SL has been necessary and extremely beneficial. We will never be able to say "thank you" enough. At the same time, it's time for us to move on.

Eight is Enough

I know, I know. This was probably the most predictable title I have ever used. It just seems appropriate.

We got home from Japan on Tuesday night and Wednesday morning Jo went to see Dr. Alvarez to get the okay to head into surgery. Jo's platelets had dropped below 100,000 and her white blood cells had dropped to an unacceptable level for surgery. 9 and 12 hour plane flights definitely take a toll on the body and this will be something I will run past the NIH doctors when we see them this spring.

On our way to the hospital today, we stopped to get Jo's blood checked again and her white cells had come up to 3.8. Dr. Alvarez had wanted them to get above 4, but Dr. Kelly felt that 3.8 was good enough. At 1:45pm, Jo went into the operating room for her 8th surgery in less than 25 months. Dr. Kelly said that everything went perfectly and she expects a total success.

Jo's ball joint in her right shoulder had collapsed - think of taking your thumb and making a dent in a Styrofoam ball. Dr. Kelly scraped out the area of collapsed bone and replaced it with a metal "button". This button is a piece of metal that can be expanded to be the exact size of the area Dr. Kelly created and that small section of shoulder bone is essentially resurfaced. The end result is the shoulder bone once again having the proper shape to move normally in the socket.

Jo is expected to come home tomorrow around noon. She will have help from my mom for the next two weeks and then her mom until mid-January. By then we expect Jo to be completely pain free with somewhere close to 95% or more range of motion in all of her joints.

Two years ago, I remember sitting in Dr. Kelly's office and she told us not to think too far into the future. She said, "The reality is I could schedule you for 2 full years of surgery." At the time I didn't believe her. I believe her her now.

A Quick Trip to Japan and Now Back to Business

Over the Thanksgiving weekend, Jo and I travelled to Nagoya, Japan for the 15th annual Crazy County Dance Festival. Martha Ogasawara and the Nagoya C/W Dance Fans first brought us to Japan 11 years ago and this was now our 4th trip to teach dance in Japan. We had an absolutely fabulous time and we can't thank our Japanese friends enough for their never-ending hospitality. The entire weekend was first class!

We were joined in Japan by Scott Blevins from Chicago. He was the first American guest instructor 12 years ago at Nagoya's 3rd event. Scott and Jo have known each other for many years through the dance world and they are often considered mirror images of each other in terms of their wonderful choreography and technique.

On Friday, Jo heads back to the operating room at Presbyterian/St. Luke's Hospital for a pretty major surgery on her right shoulder. I'll explain the details of the repair on Friday. For now, just realize that she cannot lift her arm above her head, she cannot put it behind her back and she can barely reach across the front of her body.

For those of you who know Jo well, it's impossible to keep her down and the following video demonstrates that. Jo is dancing a beautiful new dance called "Feel", choreographed by Scott Blevins who is dancing alongside Jo. Keep in mind that this is all done with less than 50% range of motion in Jo's right arm. (No trick photography was used in the making of this video.)

Happy Veteran's Day!

There is something special about College Football just about anywhere you live, but the Service Academies are a truly unique experience. Before this weekend's game, an F-15 and two F-22s flew over the stadium. Each of the three planes turned on their afterburners directly over the stadium and zoomed straight up into the sky. The entire stadium shook and the crowd went absolutely wild. I was holding Anna and she was so scared she tried to dive to the ground. I was pretty spooked myself and I really have no idea how I held on to her.

We are less than a month from surgery #8. The date has been set for December 5th, but just in case of any last minute changes I have purchased an S-CDS (Surgery Change Date Swap). It's very similary to a Credit Default Swap except that it insures me against any financial losses incurred should the surgery date have to be moved. I learned this technique by studying the business practices of AIG. I'm not quite at $62 Trillion, but I'm on my way.

In case you are wondering what Anna was for Halloween...


I had to chase Prince Charming off with a baseball bat.

Combating the Rising Cost of Healthcare

I cannot be sure that either of the Presidential candidates will come up with a reasonable solution to the rising cost of healthcare. For that reason, we have taken matters into our own hands. At just 4 months past her 3rd birthday Anna has started her medical training. How old was Doogie Howser when he got his MD?

Dr. Kelly - Did you miss us?

After a nice hiatus away from the operating room, Jo is back on Dr. Kelly's schedule. She will have surgery on her right shoulder on Friday, December 5th. Jo's left shoulder feels tremendous. The bone graft that was implanted into her left shoulder has been an incredible success.

As Jo's left shoulder has gotten better and better, her right shoulder has started to deteriorate. About 45 days ago, she had shooting pains in her right shoulder for about 3 days. Dr. Kelly took some x-rays, but couldn't find anything. About 3 weeks ago, Jo started to have trouble with her range of motion. As of this morning, she can get her arm over her head, but it is not pretty.

Last week a CT Scan (or maybe it was an MRI) confirmed that Jo's shoulder has started to collapse and it is cracked. My first thought was that it is time for another bone graft just like the left shoulder. Unfortunately, the body does not take well to a second graft. Somehow, the body knows about the first graft and tends to reject follow-on grafts.

Dr. Kelly will be going into Jo's shoulder and again "cleaning out" any pockets of necrosis. Then she will install a "button" on Jo's shoulder bone that is supposed to prevent further collapse and give her back her range of motion. I'll have to find out the technical name for this surgery and get back to you on that.

For the next 70 days or so, we will baby that shoulder and try to prevent any further collapse. There is good news...nothing else hurts and Jo only goes to get her blood checked every two weeks.

Aplastic Anemia Hits the Olympic Swimming Pool

This past weekend, Jo and I were able to catch a bit of the Olympics on television. Did you see Michael Phelps win one of his races by 1/100th of a second? Did you see Dara Torres lose her race by 1/100th of a second? Unbelievable!

Just before Torres' race, the announcer mentioned that her coach was not able to be with her. He was in a hospital bed in Bethesda, MD being treated for a life-threatening blood disorder. I couldn't believe my ears. I ran to the computer and typed "Dara Torres Coach" into Google. Sure enough. In late July, he was diagnosed with Aplastic Anemia at the age of 58.

"It's really, really bad," Lohberg said by phone to the Miami Herald late Thursday. "They told me I might last only weeks, or maybe even days. It's bad. I knew something was wrong because I was very tired and out of breath, but I thought it was from my herniated disk and all the stress. Turns out it's a disaster. I have nothing left in my blood, and I have to get to the specialists by 8 a.m. Friday because without treatment, I might not make it to Monday."

Three days later Lohberg was interviewed from the NIH and it sounded like Dr. Young, Dr. Scheinberg, Dr. Childs, Dr. Sloand or Olga had helped him understand that yes it's bad, but the NIH is really, really good at what they do. I was able to find his blog and as of today, he is still at the NIH recovering from his ATG treatment.

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Jo saw Dr. Kelly last week for a quick shoulder checkup. Jo's left shoulder is doing awesome and she says it feels great. Dr. Kelly says the bone graft is healing perfectly and she considers the surgery a 100% success.

Jo's right shoulder is still a bit of a problem. Dr. Kelly says the bones actually look very good, so it may soon be time to get the arthroscopic guy to take another look. I think the real problem is that the left shoulder feels so good that Jo is constantly reminded that the right shoulder is still not quite right.

Living Passionately

A Zen poet said, “A person who is a master in the art of living makes little distinction between their work and their play, their labor and their leisure, their mind and their body, their education and their recreation, their love and their religion. They hardly know which is which and simply pursue their vision of excellence and grace, whatever they do, leaving others to decide whether they are working or playing. To them they are always doing both."

At Church last Sunday, the congregation was treated to a special musical performance by a group called Selah. They were phenomenal, but what really touched me was the passion displayed by the pianist. Every note he played seemed as if it were the most important note ever played on a piano. His body language told the story of the music in such an incredible way that even the deaf would have “heard” the music.

I started taking dance lessons over 15 years ago and I remember an early teacher telling me that my goal was to dance in such a way that somebody who couldn’t hear the music would still know exactly what the music sounded like. I must admit, this is still tough for me to accomplish today.

When I met Jo almost 14 years ago I was introduced to a level of “passion” I had not experienced before. I specifically remember watching Jo line dance to Scooter Lee’s Honky Tonk Twist. I was absolutely shocked how clearly her movement told the entire story of the song.

Of course, Jo is in the entertainment business and all entertainers (to some extent) try to bring this level of passion to their performance. The difference is that Jo doesn’t have to “bring” anything to her performance. It’s her natural way of being. How do I know this? Because I see that same level of incredible passion in her everyday life.

I’ve been asked many times over the years, “What’s Jo like when she isn’t ‘on’”? If you’ve had the pleasure of spending time with her outside of her professional career, you know what I know. There is no “off”. She has an incredible way of bringing intense passion to practically every moment of every day. I’ve seen her do this when she’s planning a baby shower, when she’s making greeting cards, when she and Anna are planting flowers or when she’s decorating the house. It seems like every single day she sees an opportunity to take an ordinary experience and make it extraordinary.

About 5 years ago I saw a wonderful presentation by a man named Charlie “Tremendous” Jones. All professional speakers bring passion to their presentations, but this man was different. This man’s passion cut straight through to my core. I saw Tremendous Jones in the hallway later that day and before I even introduced myself, I was drawn into him and I gave him a big hug. It was like he had some sort of magnetic pull like a black hole drawing people into him.

I know some of you have spent time with Jo away from the dance floor and you know that her passion for life creates this same sort of magnetic pull no matter what she’s doing. I still don’t comprehend exactly how she does it, but I sure am glad I caved in and agreed to take a line dance lesson back in the spring of 1993. I could have never guessed the path that would lead to just a little over a year later.

Goodbye 2, Hello 3

Anna turned 3 today. Can you believe it? This is Anna's first non-weekend birthday so it was pretty quiet. We put 3 candles in a Blueberry Muffin and sang Happy Birthday. Maybe we'll get a cake for the neighborhood kids this weekend.

Jo's shoulder is recovering nicely. This past weekend it was put to the test at the Rocky Mountain Swing Dance Convention. My spies let me know that Jo actually danced a few songs with a couple of the best guys. They were under specific instructions to only lead moves that didn't require the use of her left arm. Overall, her shoulder held up pretty well.

Jo sees Dr. Kelly next week for a checkup and hopefully she'll be able to start more aggressive physical therapy.

A Rare Talent

At church this morning, the band and a small group of singers performed a mellow, but very powerful song. As soon as the band began to play, the tune immediately had me dancing in my head. You almost have to know West Coast Swing to really understand. This was the kind of song that would have been played at about 2am.

I don’t know if I can really explain what goes on inside me when I hear a song like this. Over the past 14 years, I’ve danced to songs like this with Jo more times than I could possible count. Normally I’m good about sharing Jo with all of the other guys that want to get a dance with her, but every now and then a song comes on that I have to have and I pull out my “husband card”. This is the card that basically says as long as I don’t abuse the privilege, I get to cut straight to the front of the line any time I wish.

As I sat there this morning, tears formed in my eyes. These are the tears that come from life experiences that seem absolutely perfect. This might be the birth of a child or some other significant event in your life or it might be a dance with Jo when the right song comes on.

Unless you’ve danced with Jo, you may find this hard to comprehend. If you have danced with her, you know she can make life seem completely perfect for the length of that song – if it’s the right song. The birth of a child is rare. Really good songs can be purchased and then played over and over again.

As this song at church began to head down the home stretch, a couple of people in the middle section felt compelled to stand. Within seconds, the entire congregation (probably 1,500 people) was standing. I was already in an amazing place, dancing with Jo in my head. Add the energy of 1,500 people being overcome by a powerful musical performance and I almost lost it.

I know this Blog tends to chronicle the difficulties Jo has experienced with her health lately. Keep in mind that if I did a Blog of all the amazing ways we’ve been blessed in the last 14 years it would probably be 100 times as long.

Shoulder Update

Jo and Anna have been in Texas for two weeks doing extensive shoulder rehabilitation consisting mostly of swatting East Texas bugs all day. They will be home next week just in time for Swingtime in the Rockies.

Jo says her shoulder feels pretty good. She'll be doing some teaching and emceeing at Swingtime, but her shoulder will not be ready for any serious dancing. Sorry guys. As you all know, we always have great intentions with our fancy dance moves, but now and then a lead goes astray and we end up apologizing as our partner grimaces in pain and says, "Oh don't worry about that. It was my fault." Or does that only happen to the women I dance with?

We Have a Winner

According to Jo, every year after the Miss America Pageant, Miss Texas has a big hot dog in the Philadelphia airport on her way back to Texas. Congratulations go out to Jill and Anthony Martini. I have already seen your prize - absolutely beautiful. Can you believe that she has gone 21 years between hot dogs? She says she doesn't have anything against them. She claims to just not have had many opportunities.

Jo's shoulder is doing well. The bandages have all worked themselves off and the incisions appears to have healed nicely. She doesn't say anything about being in any pain, but I can tell that she is pretty careful with that arm.

A Clue

Jo saw Dr. Kelly today and they took a look at an x-ray of Jo's shoulder. Everything appears to be healing well. Jo's pain level is getting better every day, but Dr. Kelly says she has to take it easy for at least 6 weeks.

Yes, 21 years ago was the Miss America pageant that Jo competed in and the correct answer does have something to do with that time frame. More specifically, it has something to do with an activity after the pageant was over, but before she returned to Texas. Apparantly, this was a tradition for every Miss Texas upon leaving Atlantic City. Before your mind heads into a Casino, keep in mind that what she did was considered very "All-American".

Guesses will continue to be accepted.

For the First Time in 21 Years...

Like she normally does, Jo has worked hard to transition from the heavy pain killers to Tylenol as quickly as possible. I can tell she is in a good amount of pain, but every time I ask she says, "It feels pretty good."

This was quite a bit bigger incision than any of Jo's previous shoulder surgeries so a longer recovery is only natural. I have not seen any sign of her abandoning her sling. We are approaching a week and for the previous shoulder surgeries, the sling was long gone by this time.

We have Meema for another 2 weeks here in Denver and then Jo and Anna will head on down to Texas for a little R&R with Memaw Rita. Anna is in 7th heaven because she and Meema have ice cream together every night.

Oh yeah, you probably want to know about the 21 year streak that has come to an end. This past weekend, Jo did something that she has not done in 21 years. Now that I think about it, why don't we pause and take a moment to hear from the viewing audience. If you think you can guess what Jo did this past weekend for the first time in 21 years, leave your guess as a comment on the blog. The winning guess (closest guess) will receive a set of hand-made gift cards from Jo this summer. If you didn't know this, Jo took several craft classes a few years back and she makes the most beautiful hand-made gift cards you have ever seen.

Kill Ratio Below 25%

It's not even 5:00pm and Jo has been cleared to go home. We should have time to stop at the Cherry Creek Grill on our way home for a quick order of Spinach Dip - exact same Spinach Dip we get at Houstons. If you think I'm kidding then you don't know Jo. She may nod off a few times while bringing a chip to her mouth, but that is not nearly as dangerous as when she drinks hot tea in the morning.

Our nurse's name is Cindy. This is at least the 3rd time that Cindy has taken care of Jo in the last 18 months. Today we found out that Cindy goes to the same church as us and she even goes at the same time. Last year she went on a cruise sponsored by the church with two of our very best friends, Gary and Kathy Weimer. Small world, eh?

You are probably anxiously awaiting my explanation of the "kill ratio". Jo's morphine pump will allow her to give herself a "shot of happiness" every 8 minutes. The machine keeps track of how many total shots she gets and it also tracks the total number of attempted shots. Jo successfully gave herself 25 shots of morphine. She pushed the button trying to get a shot 107 times.

Sadly, Jo's morphine pump was taken away from her this morning. They said something about the button being worn out. She is on oral pain killers. I have already checked the Internet and I have found nothing that suggests any problems that can occur when pain killers are mixed with spinach.

The Morning After

Jo had kind of a rough night. She has a morphine pump for her pain, but in the middle of the night she couldn't stay awake long enough to push the pump. She would wake up in tremendous pain and then fall asleep before she could push the pump. There are pros and cons to being a good sleeper.

Dr. Kelly mentioned that the shoulder pain could be even more than what Jo experienced with her hip replacements. We'll have to wait until Jo feels better and see if we can get her to give us a comparison.

The piece of bone that was transplanted into her shoulder was described as the shape of a mushroom with the top being about the size of a half dollar. The reason the surgery took so long is that the hole that the new bone goes into has to be created very slowly and carefully so that the new piece of bone fits as well as possible. The last thing you want to have happen is to put the new bone in the hole and then find out the hole was too big!

Jo is resting in her hospital room. She is expected to come home tomorrow night or Saturday morning.

Lucky Number 7

Last week, Jo got a call that a bone was available for her shoulder. We were given about a day to decide if she wanted to go forward with this bone or if she would pass. We decided to go for it and plans were put in motion. Yesterday, Meema flew to Denver to help with Anna and Jo went into surgery about 4:30pm today. Dr. Kelly says this surgery could take 4+ hours, so forgive me if I don't update the blog tonight.

Dr. Kelly will take a piece of bone out of Jo's shoulder and replace it with the donor bone that is about the size of a half-dollar. The new bone will be pinned in and over time it should give Jo's shoulder the shape needed to relieve her pain and also give her more range of motion.

Jo is expected to be in the hospital for 2 or 3 nights. Today we joined the hospital's Frequent Flyer Program. For $15 per year, Jo always gets a private room if one is available and I get $6 credit per day at the cafeteria. They do make a great Bacon Cheeseburger! Actually, I'm not sure that I have ever had a bad Bacon Cheeseburger.

NIH - The Rest of the Story

When Jo and I went to the NIH 2 weeks ago, there was actually a fair amount of concern stirred up when we talked about what has been going on the past year. Everybody was extremely concerned about the blood clot Jo had in her head last March shortly after her 2nd hip replacement. A blood clot in your head is very serious. It could lead to a stroke and irreversible brain damage. What surprised us a bit was that it seemed like ancient history to us.

Well, a blood clot is often an indicator used to by the NIH to make a decision to have a bone marrow transplant done, especially in a case like Jo’s where she has a perfect match donor. A bone marrow transplant is extremely difficult and has its own set of risks and jumping to transplant is never a decision made lightly. In Jo’s case, there is enough data to blame the clot on, that we have decided that we can continue down the path we are currently on and keep the bone marrow transplant as a backup plan.

Jo’s treatment for Aplastic Anemia is considered a tremendous success. Her bone marrow is producing good amounts of blood and most importantly, she does not require any blood transfusions. However, Jo also has the PNH problem where her red blood cells have a tendency to burst creating a bunch of cell garbage in her blood that puts her at high risk of clots. For that reason, she is on blood thinners at all times.

Blood thinners create their own problems. Jo has had to have several major surgeries and she will require a few more. When you have surgery, you cannot have thin blood. About 4 to 5 days before any surgery Jo stops taking Coumadin, her primary blood thinner. Coumadin stays in your system about 4 to 5 days, so she has to stop it in time for it to be completely out of her system before surgery. During that 5-day stretch, she gives herself shots of Lovonox, which only stays in her system about 12 hours. As long as her last shot is 12 hours or more before surgery, she can go into the operating room without any blood thinners in her system.

After surgery, Jo starts back on Coumadin, but it takes 5 days to build up. She again gives herself Lovonox shots for 5 days to “bridge” the gap until the Coumadin is built up. This “bridge” is extremely important. A total hip replace is a very significant surgery with a large incision and a lot of potential for bleeding. Jo’s surgeon, Dr. Kelly, had an extremely delicate job to do in managing Jo’s recovery because thin blood was necessary to prevent clots, but keeping Jo’s blood too thin could also cause problems with the healing process of Jo’s wound.

After checking as many records as possible, it appears that Jo was given 2 Lovonox shots in the hospital after that hip replacement. It is very possible that she went through a short period of time where her blood was not as thin as her hematologist would have liked it and this could be when the clot was formed. We’ll never know for sure, but the NIH doctors agree that there is enough data to suggest a reason for the clot. The other scenario would be to find that the clot happened even though Jo was fully “juiced-up” on blood thinners – Dr. Alvarez calls that “therapeutic”. I have no idea what that means. If that were the case, we would already be making plans for a bone marrow transplant.

Yes, Jo does have the PNH problem, but relative to other PNH patients she has it easy. She does not require any transfusions, she only had a handful of hemolytic episodes in the past year (lot’s of red cells bursting) and most of her hemolytic episodes have been fairly light. Therefore, after 2 weeks of discussions we have chosen to stay the course.

The other thing brought up after we talked about the blood clot was the possible use of Soliris – the “miracle drug” that was approved by the FDA last March. PNH patients that take Soliris do appear to experience blood clots less often than patients that do not take it. On the other hand, Soliris also has its issues. First, it is a probable commitment for life and there is no data yet on the long-term effects of taking it. Dr. Alvarez knows of one patient taking it here in the Denver area and after a couple of years now, that patient is beginning to have mixed results. Secondly, the drug costs $480,000 per year. Thirdly, most of the people (maybe all) have PNH problems more severe than Jo’s.

The question becomes this, “If Jo’s blood clot can be blamed on her level of blood thinners after her surgery, is her PNH condition bad enough to warrant the use of Soliris?” I will tell you that the opinions are not unanimous.

Considering Jo has felt tremendous the past 12 months, it seems odd to even have had this discussion over the last 2 weeks. It has made us realize how narrow the tight rope really is. We are very fortunate to have the medical advisors that we do have. Primarily because of how good Jo is doing, we have decided to push forward without any major changes. There are some minor changes and I’ll explain those later.

On a side note, have you ever seen the 1976 Movie, “The Boy in the Plastic Bubble”? John Travolta played the “Bubble Boy”. (I know that most of you are probably more familiar with the Bubble Boy episode from Seinfeld.) The bubble boy was the son of hematologist at the NIH and he developed Aplastic Anemia. The progress made with this disease over the past 30 years has been absolutely incredible. The really neat part is that we found out that Dr. Alvarez was a resident at the NIH 30 years ago and he was actually assigned now and then to take care of the Bubble Boy! Small world, eh?

Happy Easter!

Today we had a "big adventure" for Easter. Last night the weather turned cold and snow began to cover the grass. It appeared that our trip to Coors Amphitheater for our church's Easter service could be in jeopardy. We woke up this morning to clear blue skies and very cold temperatures. We decided to take the risk of severe frostbite and venture out.

We decided to only drive half way to church. For the second half of the journey we jumped on the train. This was Anna's first experience with the Denver Light Rail and she loved it! After a short walk, we found our seats among the other 13,000 people at Coors Amphitheater.

As the sun began to rise and the choir began to sing the entire place warmed up fast. The energy was incredible! Anna's favorite part was the end when hundreds of balloons were released into the sky to the strains of the Hallelujah Chorus.

After Church, we enjoyed a wonderful brunch with our good friends, Gary and Kathy Weimer and their family. Three dogs were present which kept Anna busy the entire afternoon. Overall, today was just one of those perfect days where you can't help but be greatful to be alive. Happy Easter everybody!

NIH 2-Year Checkup

Yesterday, Jo and I were in Bethesda, MD for her 2-Year checkup. When we were there 2 years ago, construction had just begun on a brand new welcome center. It is now almost complete. This was our first trip to Bethesda without crutches since Jo's initial consultation in November, 2004. We found ourselves walking places where we were not used to walking and doing things we were not used to doing. It took a while to realize that we had never before walked around Bethesda with this much mobility.

Jo had a bone marrow aspiration, which is always the highlight of the trip. We did get to talk to Dr. Young, Dr. Scheinberg and Dr. Childs and I found out some interesting history. According to Olga who runs the hematology clinic at the NIH, Dr. Young has been doing research on Aplastic Anemia for 27 years. If you remember, Jo had 4 doses of ATG when she received her treatment, which made her very sick. Back in the old days, patients used to receive 31 days of ATG!!! I cannot even imagine how sick they must have been. Dr. Young and Dr. Childs are going to Vietnam next week to help set up a bone marrow transplant clinic of some sort.

As of today, Jo has officially stopped her Cyclosporin, the immunosuppressant drug she has been taking for the last 2+ years. She will be monitored closely for the next couple of weeks to make sure that she does not experience any sort of relapse after stopping the Cyclosporin.

Van Thompson 9/11/1928 - 3/4/2008

This will probably be the hardest blog I have written yet. Sadly, Jo’s Father Van Thompson, Sr. passed away unexpectedly on Tuesday, March 4. We were in Texas for the funeral last weekend. Jo and Anna were able to stay until today.

I was blessed to have known Van for 14 years and grew to love and respect him greatly. He was a graceful man in many ways. Whether it was rounding up his herds of cattle, playing with his grandchildren, or dancing with his wife of 47 years, Rita, he was a gentleman in the true sense of the word. He was the real deal.

Jo told me she remembered that her "Daddy" was the person who first taught her to dance. At about age 5 she would stand on top of his feet and hold his hands as he taught her to do a waltz box. He obviously did a great job! Van lived a full life of almost 80 years and touched many people’s lives along the way. He will truly be missed. Please send out your prayers for the entire Thompson family as they remember a great husband, father and grandfather.

Jo and I will travel to the NIH tomorrow for her annual bone marrow check up. We are expecting good news and are looking forward to being able to taper Jo's medications. For those of you keeping track, we are now in month 25 of Jo's 18 month taper. Of course, we are also looking forward to our favorite meal of Spinach Dip and Grilled Chicken Salad at Houston's Restaurant which is right down the street from the NIH.

The Prospect Bone Fails Inspection

The bone that was hopefully going to allow Jo to have surgery later this week has failed inspection. Several tests were run to determine if it would be an appropriate bone for Jo's shoulder and for some reason it will not work. Jo and I are scheduled to do her annual visit to the NIH on March 18th, so the shoulder surgery will be put off until at least the end of March.

Throw Me a Bone

Jo got a call from Dr. Kelly's office yesterday letting us know that a bone has been located for her left shoulder partial bone transplant. We will get confirmation on Monday whether it's a "clean" bone that passes all the tests and if so, they will do surgery next Friday the 29th. I hope there isn't anything superstitious about having surgery on February 29th!

A New Plan

Earlier this year, Jo was given some news that we had kind of hoped would somehow resolve itself. Her left shoulder continues to hurt and we have known for a while that it had not healed just quite right. Jo was scheduled for knee surgery in early April, but that surgery has now been put on the back burner.

Jo's next surgery is going to be another surgery on her left shoulder - the third surgery for this shoulder. Dr. Kelly is going to take a piece of bone from the shoulder of a donor (no volunteers please - I think the donor has to be dead) and pin that piece of shoulder into Jo's existing shoulder. Over time this piece of new shoulder should grow together with her existing bone and prevent any further damage to the cartilage.

The ball of Jo's shoulder has collapsed slightly and it is rubbing against the cartilage causing pain and limited range of motion. Dr. Kelly says that there is a 90% chance that the bone transplant will take care of the pain and give Jo back her range of motion.

We are now on a waiting list for a bone donor. Once a match is made, Jo will have to have surgery within about 4 weeks. The recovery is expected to take a little longer than the previous shoulder surgeries with Jo being in a sling for 8 to 12 weeks.

The Light at the End of the Tunnel!

Jo saw Dr. Kelly today and she received the stamp of approval to fly to Texas tomorrow for the Holidays. She needs to be on crutches a few more weeks, but her knee is coming along perfectly!

More importantly, Jo asked Dr. Kelly to x-ray her ankles and her elbows and it appears that no surgery will be necessary. All four joints looked great! She isn't 100% happy with Jo's left shoulder, though - the one that has already been operated on twice. We may need to revisit that shoulder again in the future.

Overall, this is the best news we have had in a long, long time. The idea of maybe being close to finish line should make the next knee surgery a lot easier.

By the way, Jo's platelets are up to 190,000! That's well over the bottom end of normal - 150,000. We are scheduled to go back the NIH in March for Jo's 2nd annual checkup. She is now in month 22 of her 18 month protocol for treatment of her Aplastic Anemia. Yes, I typed that correctly. The math doesn't quite work, does it?

Deja Vu

Wow, the past couple of days have really brought back some memories that actually seem like years ago! Jo's knee surgery has definitely been more similar to her hip surgeries than her shoulder surgeries. There is no shortage of Percoset in the house!

Jo took her bandage off yesterday and she was able to shower today. Her knee is very swollen. She has had a tough time sleeping, but today she is starting to feel a bit better. I seem to remember Dr. Kelly saying that they went into her knee in 5 places and from the looks of it, that is very possible.

In some ways, this is the toughest recovery yet because Jo is not allowed to put weight on her knee. She was using crutches, but today we got out the walker. When she had her hips done, she was able to put weight on her hips very quickly and she walked with both feet. With the knee, she only puts weight on her one good foot. On the bright side, the incisions are considerably smaller than the hips, so that part of the healing process is expected to be much quicker.

On a Holiday note, you should hear Anna sing Jingle Bells. Talk about precious! I'll ask Meema to try to get a good video for the blog.

Do You Remember "Groudhog Day"?

We are hoping to schedule Jo's next knee surgery for February 2nd, Groundhog Day. Do you remember the Bill Murray movie? Maybe some you remember Andie MacDowell more than you do Bill Murray? It sometimes feels like we are living the same day over and over again.

Jo's surgery had a slight weather delay. We left the house at 5:45am and snow was falling. Anna was in her Christmas dress ready to take a picture with Santa at school today. Jo and I felt a bit like reindeer with Baby Santa perched in her seat in the back. Everybody at the hospital was talking about how long it took to get to work. Dr. Kelly seemed a little flustered from the 3 to 5 mph average commute speed.

Jo did see her shadow and we are expecting a very short winter...I mean the surgery went as expected. Dr. Kelly says her cartilage looks great and she did inject some stem cells into one area of necrosis. The knee is a more complicated joint than the hip or the shoulder and getting to certain areas would require doing damage to other areas.

Okay, the truth is that I was pretty tired this morning and I didn't understand some of the things Dr. Kelly told me and what I did understand, I have already forgotten. Jo will have a follow-up with Dr. Kelly within the next 10 days and I'll make sure that better notes are taken!

For now, just think of a football player on the sidelines with his knee wrapped in ice. That's pretty much what we have going on here today.

On Track for Wednesday

Anna has now finished her third Thanksgiving weekend, but this one was special because she took on many of the cooking duties. She seemed to be inspired by her new hat!

We are on track for an early morning show-time with Dr. Kelly on Wednesday morning for Jo's first knee surgery. We are hoping that the knees are similar to the shoulders and Jo is allowed to come home without staying overnight.

Our plan is to get Jo through two weeks in Denver and then send her and Anna down to Texas through Christmas and New Year's. Right now, Jo is being told that she will need to be on crutches for 4 to 6 weeks, but she was also expected to be on pain medication for more than 24 hours after each shoulder...

Shoulder Progress

Jo's shoulder is coming along nicely. The pain is slowly going away and she says that her range of motion is up to about 75% of normal. She went Salsa dancing with the girls two nights ago and that was a good test. She was able to get through the night pretty good. There are a lot of Salsa moves that take both hands over your head, so she definitely put her shoulder through some paces.

Jo's first knee surgery has tentatively been set for Wednesday, November 28th.

Happy Halloween!

Anna has been waiting for weeks and Halloween is finally here! She was sleeping hard last night and I had to go back into her room to put her pajamas back on. I asked her, "What day is tomorrow?" She was so tired she could barely get the words out, but she replied, "Quack Quack."

Jo had her follow-up appointment with Dr. Bazaz on Monday and he was pleased. He pushed her arm in all directions and she responded with multiple shreaks of pain. He seemed to think that meant she was right on schedule. Sometimes it is hard to keep in mind that the surgery was only a week ago. Jo came home from the hospital at noon on the day of her surgery and she was on pain medication for only one night. Dr. Bazaz expects her to see significant range of motion improvement within a couple of weeks.

Jo scheduled her first knee surgery for early December. Whether or not that happens will all depend on how well her shoulder does over the next few weeks. Dr. Bazaz will have to give her the "okay" to go ahead on the first knee. She will be on crutches after her knee surgery and everybody wants to make sure her shoulder can handle it.

P/SL - Take 5

In the past month or so, Jo's left shoulder has been our primary focus. She has had a limited range of motion and some fairly significant pain. The MRI didn't show anything conclusive, so Dr. Kelly referred Jo to Dr. Raj Bazaz and this morning, Jo just completed her first arthroscopic surgery (at P/SL - Presbyterian/St. Luke's Hospital).

Dr. Bazaz just showed me the pictures from the inside of Jo's shoulder and they were amazing! He showed me Jo's biceps tendon, her rotator cuff, the cartilage and a bunch of other stuff that I can't remember. The amazing part is how clear everything is on the pictures.

It turns out that the biceps tendon and the rotator cuff look perfect and the cartilage really looks pretty good. There was no exposed bone and he didn't need to "shave" back any bone. The offender appears to be what Dr. Bazaz called a classic "frozen shoulder".

Many of the pictures showed very red, inflamed tissue. Dr. Bazaz kept referring to it as "angry" tissue that all needed to be cleaned out. Of course, I had to ask how it gets "cleaned" out. He said it is actually more like a little BBQ action. He uses a heat probe to "cook" the tissue. His analogy was that the really rare parts need to be cooked down to about a medium to medium-well state.

Since Jo was under anesthesia, Dr. Bazaz was also able to really take Jo's shoulder through a full range of motion. Due to the pain, there is no way to do this in a conscious state. By moving the shoulder through the full range of motion, he is able to "break up" the pieces and parts that have been "locked down" due to the inflammation.

Overall, Dr. Bazaz felt that what he found was definitely on the low end of severity compared to all of the possible things that could have been causing the pain. When she gets out of the recovery room, she will be in a sling, but he said she can get rid of that as soon as she wants and he will not ask her to limit the use of the shoulder at all. He said that it will only take a couple of weeks to know if what he did today relieves the pain and brings back a significant range of motion.

As for Jo's knees, Jo will need to have surgery on each knee. She does have pockets of necrosis and they need to be fixed. Fortunately, the necrosis is in areas that are not at high risk of further injury, but Dr. Kelly said she would not want Jo to go more than about 6 months before having that necrosis addressed.

We do not know when Jo will have her knee surgeries. Dr. Kelly said that she will need to use crutches for several weeks after each surgery and that will put stress on her shoulder, so we kind of need to wait until Jo's shoulder is fairly well healed.

Follow-Up With Dr. Kelly

Jo saw Dr. Kelly today and she came home with a report card of straight "A"s. Dr. Kelly is extremely pleased with how the right shoulder has turned out. She also said there is a good chance that Jo's knees will not need surgery. The x-rays do shows small pockets of necrosis in her knees, but it is in an area that does not bear weight, and therefore, is not at much risk of further injury.

Next week Jo will get an MRI on her left shoulder and her left knee. The MRI will do a much better job than the x-ray at identifying any necrosis in her knee, so a final decision on the knees has been put off for a bit. Jo requested the MRI on her left shoulder because of the lingering pain. Overall, Dr. Kelly's thoughts were extremely uplifting.

For anybody that really remembers the details of Jo's visit to the NIH, her protocol included taking an anti-rejection drug called Cyclosporin for 18 months after her treatment and her dosages were supposed to be tapered down to nothing over the 18 month period. We are actually 19 months post-treatment and Jo is still taking Cyclosporin, but her dosages are very small. It shouldn't be long and that part of the journey will be complete. If you could see the size of these "horse-pills", you would know that they will not be missed.

I do want to shout out to my Uncle Howard and my Uncle Lenny in Minnesota. Both of them recently spent time in the hospital. Lenny's stay was pretty quick and Howard's stay was pretty serious. Jo and I know from experience that no amount of time in the hospital is much fun. We are very happy that you are both back in the comfort of your own homes. Please know that our thoughts and prayers are with you.

The Easiest Recovery Yet

Two nights ago, I asked Jo how her shoulder felt. She did a big "roundhouse" 360 and she said, "It feels great!" I was actually a little shocked. I think it may be just a bit early to be doing cartwheels on that new shoulder.

Yesterday, Jo mentioned that her surgical shoulder already feels better than her left shoulder that was done in June. On Friday, Jo will go to see Dr. Kelly for a follow-up visit and there may be more discussion about the left shoulder than there will be about the most recent operation. My guess is that the left shoulder is just going to take make time because of the crack that has to heal.

Can you believe that all of this started almost 3 years ago? Back then, Popcorn Lung wasn't a health threat, we still gave Brittney Spears a chance to make it as a mom, and I don't think YouTube even existed. Well, it does now. Jo has had to take a couple of crash courses to catch back up with modern technology and she has gotten straight "A"s. To check out Jo's latest dance choreography, click on the link below:

Jo's Dances on YouTube

A Refurbished Right Shoulder

Yesterday, Jo was first on the surgery docket at 8:30am. By noon she was out of the recovery room and up on the 6th floor, resting peacefully with her morphine pump. I really thought there might be a chance of her going home the same day, but about 8pm, I gave up. She said something even funnier than the swimsuit comment from her first hip surgery, and I tried to make a mental note, but I just can't remember.

Of all of Jo's surgeries, this may have been the toughest from a pre-op perspective. So far, every surgery has relieved some source of pain. This time, there was no pain. We even joked with Dr. Kelly in the pre-op room about maybe doing one more quick x-ray to make sure Jo's shoulder really did need surgery. Even though there was no pain right now, with dead bone in the shoulder, the surgery had to be done.

On the bright side, this surgery has definitely been the easiest from a post-op perspective. Jo said today that she can already tell that this shoulder feels way better than her left shoulder felt at this time. If you remember, her left shoulder had a crack in it and that crack is still not fully healed.

Jo stopped her pain medication this morning, less than 24 hours after her surgery and switched over to Tylenol. She says she may take some percocet tonight to make sure that she sleeps well. I would hate for her to feel alone, so I may do the very same thing!

Again, two thumbs up for the entire Presbyterian/St. Luke's experience. Everybody still treats me like it is our first trip there, but I know my way around pretty good. The registration nurse is the only that really remembers us. She gave Jo a big hug, asked her how Anna was doing and then told her that we really needed to quit meeting like this.

Surgery Gets Delayed

Due to a minor sore throat and some other "cold" symptoms, Dr. Alvarez recommended that Jo push tomorrow's shoulder surgery out another week. We are now scheduled for Thursday, September 13th. With this weekend being opening weekend of the NFL season, this short delay is possibly a blessing in disguise!

Jo's blood counts are a little off due to her cold, but for the most part they have been pretty good. Her platelets have been in the 150 range which is the bottom end of normal and her red blood cell measurements have been holding just below the bottom end of normal, but overall not too bad. Dr. Alvarez has sent a blood sample out to have Jo's PNH issue measured. Hopefully, we'll get results from those tests next week.

Jo Returns to Teaching

The event was only 36 hours ago, but already I am way behind on reporting the big news. Yesterday, Jo made her first real appearance on the dance floor as a teacher in about 2 years. Yes, she has emceed a couple of events and she has even taught a few dances with the help of a "demonstrator", but yesterday she was back on the dance floor as if she had never left. Don't forget that less than 1 year ago, Jo could not put her own shoes and socks on.

This event was put on by two of our very best friends, Scott and AJ Herbert of Colorado Springs (http://home.earthlink.net/~theherberts), who also brought in Joanne Brady from the East Coast. I can remember stories about Joanne for as long as I've known Jo. I can't think of anybody better to help Jo back onto the floor.

Scott and AJ always put on first-class events and they always know how to make sure Jo receives the care and attention she needs. (I must say that they also take very good care of me!) I do want to send out a very gracious "thank you" to Scott and AJ and also all of our other Colorado dance friends and colleagues. Jo is not quite "back" yet, but the rehabilitation process has begun and everybody in Colorado has been tremendous with their understanding and their support.

Over the next year or so, Jo will participate in more Colorado events to work on building her stamina and "testing" her physical abilities. Jo still has another shoulder surgery later this week and then we need to sit down and talk to her orthopaedic surgeon and see just how everything looks. I'll have more on that in the next couple of days, but today I just want to focus on how good it was to see her back on the floor.

So, you may be wondering when Jo will make her way outside of Colorado again. That is tough to say. She still has some physical challenges ahead and then there is Anna. Having a 2-year old is really cool and missing even a single weekend never sounds like fun.

The Dog Days of Summer

This Friday, Jo has a follow-up appointment with Dr. Kelly. Her surgically repaired shoulder is still hurting some and it will be good to get Dr. Kelly's thoughts. We will also confirm that we are still on track to have the other shoulder surgery done on September 5th.

Day-to-day life is really pretty normal. Two weeks ago, Jo started back to Jazzercise, which was a huge milestone! Other than "babying" her left shoulder a bit, she lifts anything she wants to lift and does anything she wants to do. Anna has started a pre-school/day-care 3 day per week program, so Jo is trying to catch up on a lot of lost time from the past 30 months or so. In only 3 days of school, Anna has already learned how to say "stop it" and "mine".

Baseball, Hot Dogs and Apple Pie...

With the 4th of July just around the corner, it is time for us to say farewell to Memaw Rita for the third summer in row. Jo's mom has been with us for a little over 6 weeks and she has been a tremendous help getting us through Jo's first shoulder surgery. Thank you Memaw for all you have done for us!

Speaking of summer, the 4th of July and Baseball (The Great American Pastime), how about those Yankees? At 3 games under .500, this could be the worst start in Yankee Town in recent memory. Jo actually received a call from the Bronx Bombers this week. They heard that her shoulder was feeling so good, they were hoping she would consider pitching (left handed) in their starting rotation. Ultimately, Jo's decision came down to this...

Roger Clemens - $22M
Jo's Offer - $10M
Being a Mom - Priceless

Believe it or not, I voted that she take the job.

Jo has about 95% of her range of motion back in her left shoulder. She does still have a bit of soreness and her incision is a little tender, but overall, the shoulder recovery continues to be incredibly easy.

We have made an appointment for Jo's right shoulder surgery on September 5th which will be here quicker than we can imagine. She could have done it sooner, but to be honest, we chose to take the summer off!

Child's Play

I know that I have a duty to entertain my reading audience, but this shoulder surgery has given me absolutely no material to write about. I asked Jo to give me the real scoop on the pain and she replied, "It's no worse than a paper cut." If the next shoulder is this easy, I may have to take a sabbatical from the blog.

Jo spent one night in the hospital and she was home by noon the next day. She took pain killers for about 48 hours and then she switched to Tylenol. As long as she doesn't move her arm in a lateral motion, she really doesn't feel much pain at all. The lateral movement must be limited for 4 to 6 weeks.

Just before going in for surgery, Jo did have another CT Scan of her head and the blood clots in her brain are completely gone! On the PNH front, Dr. Alvarez thinks that things look good enough right now that we will put any further discussions of Soliris off until we go back to the NIH in February for Jo's annual checkup.

Remember, life is all about perspective. If you have to have shoulder surgery, go have lunch with somebody who just had a total hip replacement. If you have to have a hip replacement, go have lunch with somebody that just had open heart surgery. If you have to have open heart surgery, go have lunch with somebody that just changed Anna's last poopy diaper!

A Refurbished Left Shoulder

Jo's first shoulder surgery this afternoon went completely as expected. Dr. Kelly drilled a hole into Jo's shoulder, through which she scraped out all of the diseased bone. The space was then filled with a mixture of a special putty and bone marrow that was taken from Jo's hip. I did instruct Dr. Kelly to make sure she got bone marrow and not metal shavings.

No surgery is ever fun, but today's procedure was really a piece of cake compared to the hip replacements. I haven't seen it yet, but supposedly, the incision is only an inch or two long. Compare that to a 12+ inch incision for the hip, the total amputation of the femoral head, AND a fairly good size prosthesis inserted into her leg. Jo will experience some bone pain in her shoulder for a while, but with the hips so fresh in her memory, I can't imagine her having any problem handling it.

Due to the complications Jo experienced last time, only a general anesthetic was used today. There should be no chance of a repeat of the headaches from April.

Since the surgery got just a little bit of a late start, Jo will spend the night in the hospital tonight and most likely come home tomorrow.

Please Stop and Pay the Toll

I have a little bit of bad news for all of you Internet Surfers. This will be your last chance to visit Jo's blog for free. Starting tomorrow, you will have to pay a toll every time you visit Jo's blog, just as you would every time you use your favorite toll road to get across town. Please write your congressman if you have any concerns.

In addition, we will now be charging for photographs with Jo at events and we will be selling "minutes" of conversation time that can be used very similar to cell phone minutes. However, these minutes will be used for face to face conversations, as well as phone conversations. Fees for written responses to email are still pending final approval.

Lastly, I (Mr. Give Until It Hurts) have volunteered to "sell" every inch of visible skin on my body for advertising space. Paul Giovino of Lithia Chrysler/Jeep has already reserved my forehead for his new 4-Door Jeep Ad.

Why the radical changes? The pricing for the PNH "Miracle Drug" has been released. We now understand why it is a miracle drug. It would be a miracle if any insurance company ever agreed to pay for it! The drug, called Soliris, costs $489,000 per year! I am ashamed that just two weeks ago, I was complaining about the cost of Starbucks at the Denver Airport.

I did make Jo double check that figure before I would believe it and according to the NIH, it is accurate. Of course, this changes things a "leetle" bit. Fortunately, Jo's PNH problem is small compared to some people with PNH. Jo has had two hemolysis "episodes" (that we know of) where her body destroyed red blood cells at a very rapid rate. We have talked to doctors who have patients that have episodes every week. This is another reason why Jo was probably never a candidate for Soliris last year before it was approved by the FDA.

The good news is that Jo's PNH problem isn't anywhere near as bad as it could be. The bad news is that we aren't going to start Soliris anytime soon. Don't forget that as demand goes up, prices normally come down, so if you happen to run by a drug store this weekend, pick up a bottle of Soliris to throw in your medicine cabinet. Actually, what if we all buy Soliris on Thursday of this week AND we all boycott gas stations on the same day. I'll bet if everybody that reads this blog emails a copy to at least five friends, we'll have the price of soliris down under $485,000 by the weekend!

Or then again, maybe not.

"Put Your Head on My Shoulder"

Name that artist and the year that the song was released as a single. The first person to correctly log their answer as a comment will receive a gift certificate for one free hour of private dance instruction with Jo, redeemable soon.

Jo and I went to visit with Dr. Kelly yesterday and her hips both look tremendous! Her legs are almost exactly the same length, for which Dr. Kelly took full credit. I had to remind the good doctor that after Jo's 2nd surgery, Jo thought her legs were actually different lengths. It was I who suggested she jump up and down on the new hip to cram it down a little further into her leg bone, thus accomplishing a "self-adjustment".

Once the celebration settled down, Dr. Kelly decided to pull us both back to reality. She very politely asked Jo when she wanted to get going on the first shoulder operation. I think we were kind of focused on enjoying the summer and we had forgotten about the shoulders.

Both of Jo's shoulders have fairly large pockets of necrosis, which can clearly be seen on her x-rays. The good news is that both shoulders are still shaped appropriately and there appears to be minimal collapse. The bad news is that her left shoulder is cracked, which explains why her left shoulder has been bothering her. Dr. Kelly believes that this crack brings about a sense of urgency.

Dr. Kelly would like to do what is called a Core Decompression on each of Jo's shoulders, one at a time. This is a procedure where she would drill a hole into Jo's shoulder and then scrape out all of the diseased bone. New cells are then put into the diseased area to promote healthy growth. There is even some stem-cell research being done where stem-cells are harvested and then transplanted into the affected area. Dr. Kelly is researching the options right now.

Jo could be back in the operating room within 2 weeks. Fortunately, the shoulder surgeries will be child's play compared to the hip replacements. Based on Jo's incredibly fast recovery from the hips, she could possibly be an outpatient for the shoulders. She'll keep her arm in a sling for a week and then she'll need to limit her range of motion for another month.

Jo's blood counts are doing great. She had her counts checked today and her platelets were somewhere in the 150s. I'm still anxious to meet with Dr. Alvarez and see what he has to say about the new medication that is available for Jo's PNH problem.

Emotional Highs and Lows

Has anyone else noticed that air travel seems to be getting more and more cumbersome all the time? When was the last time you sat on an airplane with an empty seat beside you? What's up with Denver's airport not having a Starbucks? The last time I checked, we were in the 21st Century after all.

The other day I was flying to Texas to rejoin Jo and Anna and my flight left from DIA out of gate B81. Gate 81??? The highest numbered gate I had ever seen was about 51. How could there possibly be another 30 gates in that direction? Well, at the end of the terminal, there was a secret passageway around the corner that did lead to another 30 gates or so. However, the most exciting part was that right around the corner, there was a Starbucks!!! I knew it was going to be a great day...or so I thought.

As I took the last swig of my 20 oz Venti Latte, the United Airlines gate agent came over the PA system and said, "Houston passengers, please be advised that the lavatories on our aircraft are not working, so please prepare yourself as best as possible for the 2 hour flight." Just when I thought I had experienced everything the airlines could throw my way...

By the way, Jo is doing well. Recovery is slow, but steady. We anxiously await upcoming visits to Dr. Alvarez and Dr. Kelly to get what should be very good status updates.

Daily Progress

Every day, Jo feels a little better. She is now telling me that she is between 80% and 85% of normal. Her headaches slowly went away over the course of about 4 weeks and her hips are really starting to feel good. After a year of hobbling around, she is having to concentrate pretty hard on walking "normal" again and it will still take several months for her to regain her strength, especially in her legs.

Jo has been in Texas for the past couple of weeks and that makes it tough to get any news regarding her blood counts. The TX doctors send all the results back to Dr. Alvarez and unless we make a call to Dr. Alvarez, we are kind of out of the loop. The way I see it, if Dr. Alvarez doesn't call us, everything must be okay.

Jo and Anna will be back in Denver next week. Dr. Alvarez should have information on Jo's ability to take the new PNH drug and Jo's 8-week post-op appointment with Dr. Kelly will be coming up. Currently, we are just enjoying our time away from the doctors and the hospitals.