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”)
Sunday, August 29, 2010
Saturday, August 28, 2010
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.
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.
Wednesday, August 25, 2010
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!
Saturday, August 21, 2010
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?
Tuesday, August 17, 2010
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.
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.
Wednesday, August 11, 2010
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 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...
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