A Serious "Pat Down" at DIA

Jo, Anna and I traveled from Denver to Texas today, narrowly escaping the remnants of the blizzard earlier this week that wreaked havoc on Holiday travelers trying to get out of Dodge for the Holiday. With many of those travelers trying to get rescheduled on flights this weekend, the lines for check-in and security were at all-time highs sometimes wrapping from one end of the terminal to the other and then around a corner and out of sight.

For many of the weary, this morning was an exercise in extreme patience. For the Szymanskis, it was an opportunity to see the glass half full instead of half empty. This was, of course, our first time to travel since Jo's hip surgery. The baggage guys must have noticed Jo trying to navigate the crowd on one good hip and one bad hip and me carrying the baby and all the luggage...or maybe Jo was secretly waving a much larger wad of money than I had in my hand. Either way, their gracious offer to take us straight to the front of the line was much appreciated!

Of course, with one bad hip, it would still be next to impossible for Jo to walk all the way from the main concourse to our departure gate. The only real option is a wheelchair...which does also mean that we cut straight to the front of the security line via the "airport employee/wheelchair only" security entrance.

Anna and I quickly jumped through security and began gathering our bags when the metal detectors started going off louder than I have ever heard. For a second, I thought that maybe Snoop Dogg or P Diddy had just tried to come through security after refusing to remove any jewelry. I turned around to see my lovely wife, lighting up the security machine like a Christmas Tree and a screening agent saying, "So, Mrs. Szymanski, what exactly are you hiding under your clothing?"

Oh well...all's well that ends well, right? To all of our other friends from Denver that I know had to battle those long lines this weekend at DIA, we (almost) felt your pain, but having a metal hip has to come with a few perks.

Merry Christmas everyone! We love you all!

A Tentative Date for Hip #2

Jo has decided to set a tentative date to have her second hip replaced - March 21st - the first day of SPRING! When we saw Dr. Kelly for Jo's follow-up appointment, Jo was given a perfect score on her report card. She does still need to gain weight, but having a point on the horizon to focus on is good motivation (to eat more ice cream).

Jo has her final appointment with the physical therapist tomorrow who says Jo is the strongest patient they have ever had. Dr. Alvarez thinks it will be 6 months before Jo has her next hip done. Good old Dr. Alvarez, always taking the most conservative approach when Jo's health is on the line.

Anna went to the mall to have her picture taken with Santa and she screamed her head off. Can you blame her? Without the ability to really understand Christmas, the big, fat man in the tight red suit is actually quite scary.

Since I am back into one-blog-per-month mode, I want to pass along our wishes for a Happy Holidays for you all! Have fun, eat a lot, be merry and watch out for fat men in red suits (Anna added that last part).

This is Going to Hurt Me More Than it Hurts You...

Here we are on the 3 week anniversary of Jo's surgery and, magically, she is almost as good as new. She is cruising all over the house with just her cane, she says she feels great and it's as if the last 3 weeks were just a dream.

I asked Jo, "Do you remember waking up in the middle of the night and begging me for more pain medication?"

"Nope."

"Do you remember going to Swedish Hospital in the ambulance."

"Not really."

"How about getting me up every 2 hours to help you out of bed and then back into bed."

"Hmmmmm........no."

These days, Jo sleeps peacefully. It is I who wakes up with the cold sweats, worried that if I close my eyes again I'll be back in the jungles of Vietnam, the bombs going off all around me. The Viet Cong are closing in on my location, while I lay beneath the waters of the river bed, breathing through a straw, hoping not to get caught...okay, maybe I was still in diapers when Vietnam ended, but I could have nightmares about Desert Storm, although I never did leave the comfort of my engineering office during the entire campaign.

Anyway, it's funny to look back over the last 3 weeks and realize that Jo remembers very little of it. Just today, she asked Emily who got her the get well balloon and bear. Emily had to remind her that she had gotten it for Jo herself.

Most of my concern centered around how much pain Jo had, but 3 weeks later she has almost no recollection of that pain. It makes you wonder...if Jo can't remember it, did it actually happen? In Jo's mind, or you might even say that in her perception of reality, it actually didn't happen.

Bring on the right hip!!!

No More Walker

Shortly after being released from Swedish last week, Jo came down with a terrible cold that really hit her hard. Her blood counts are still recovering from her surgery and the cold definitely took its toll. Yesterday and today she had to go to Dr. Alvarez' office and get IV fluids, but this evening things are starting to look up.

Jo is now walking around the house with just her cane, and she has been completely free from pain medication for about 3 days. Actually, the cold she had created headaches bad enough that it made her completely forget about any lingering hip pain.

Overall, it looks like the true recovery process is about to begin. Jo needs to gain about 10 lbs. and work on getting her full strength back in preparation of doing it all again after the 1st of the year. On Thursday, Jo and I are going to see Dr. Kelly for a follow-up and I am sure we will talk about a time frame for the 2nd hip.

Even in her weakened state, I have noticed how much easier Jo gets up and down from a sitting position and how much easier she gets in and out of bed. Already, I can see the new hip making a tremendous difference!

Happy Thanksgiving!

Has anybody seen a couple of Pilgrims? I have a dinner date and I don't want to be late.

Clean Bill of Health

Everybody seems to be back to 100% and Meema escaped completely. Supposedly, you are contagious before you even know that you are sick, so I feel sorry for all those kids at Kindermusik last week!

The Occupational Therapist visited Jo today and admitted there wasn't much more she could do to help. She asked Jo if she could take some video so she could create a short film to motivate her 70 year old patients to get back on their feet a little quicker.

And Then There Was One

Jo slept extremely well last night. How do I know? Because I was up being sick all night. Being the student of positive thinking that I am, I have told myself a million times, "I don't get sick." However, last night this little family bug slipped through the cracks. Anna is on the mend, Emily is on the mend and my mother is the last little Indian still standing. Although the doctors never found anything that they could blame Jo's high fever on, I feel that it is very possible that she got this bug that started with Anna and now spread to us all. Jo had a very different experience than the rest of us, but Jo also had very different care.

One thing that I think is important to note here is how well Jo's immune system was able to cope with a very tough situation. She did get a ride to the hospital and she did get medication to boost her white cell production in the hospital, but back before we went to the NIH, this is just the sort of situation that her body may not have been able to handle at all. Of course, it is not the kind of "test" that we want to volunteer for again, but there is some peace to be found in knowing that Jo's body (with some help) can fight off a very serious attack.

As for the new hip, Jo is still using her walker a lot, but she can definitely get around with just her cane and even no help if necessary. The biggest struggle is the fatigue that sets in when you combine some physical exercise with strong pain medication, but progress can be seen every day.

Scratch the Email Idea

Things seem to be changing around here faster than my father's predictions for the Minnesota Vikings' season. After 36 hours in the hospital, not one single thing had turned up to indicate why Jo's temperature may have spiked, and Jo actually looked ready to head on back out to the dance floor. My mom and I walked into her room this morning and she was walking around without even using her walker.

This afternoon, we returned home again - so, scratch that email idea I had yesterday. Once we got home, things got a little tough again. They aren't so bad that we expect to go back to the hospital, but the picture isn't as rosy as it was at Swedish. Some of that is due to the difference between Jo getting pain medication delivered directly to her blood stream vs absorbing the medication through her stomach. Even though it is a bit more of a struggle, Jo would much rather be at home.

Send an Email to Jo in the Hospital

Jo's temperature has come back down to normal today. So far, the cause of the high fever has not been determined. She is expected to be at the hospital for another 3 or 4 days. While she is there, please feel free to email her by clicking on the link below. Volunteers at the hospital will deliver emails to her daily.

If you do email her and you don't live in the Denver area, please include your city, state and/or country. I know that dancers all over the world read this blog and it will be fun for Jo and the volunteers to see where the emails are coming from. Jo is registered at the hospital under the name of Jo Thompson Szymanski and her room number is 7-121.

(Link removed becuase Tim may have jumped the gun.)

Jo's Temperature Hits 103.9°

Today started out really good. It looked like we were over the hump. Anna scarfed down some eggs for breakfast and Jo's temperature had come down to almost normal. A little after noon, things started to go downhill fast.

Jo's temperature started to rise and it quickly got to over 101.5°, which is the point at which we had been instructed to call the doctor. After a quick call to Dr. Alvarez, the decision was made to make a trip into his office. By the time Jo got to Dr. Alvarez' office, her temperature was 103.9° and she was in terrible shape. Dr. Alvarez arranged for an ambulance to take Jo over to Swedish and have her admitted via the Emergency Room.

After 5 hours in the Emergency Room, Jo is now resting easy in a room at Swedish. Her temperature has come down to 101° and the pain medication that they have given her is working well. Dr. Alvarez said he may keep her there 3 to 5 days to make sure she is properly cared for.

The number one concern is that of Jo getting an infection that her body would not be able to handle considering the history of her immune system. The obvious worry is that her incision could become infected, but actually her incision looks extremely good and everybody that looked at it said they would be very surprised if it was causing the problem.

I am sure that by the time Jo leaves the hospital, Dr. Alvarez will have run every test known to medical science and hopefully we will know exactly what has caused this scare.

Never Trust the Patient

Last night, the patient tricked the caregivers into a double dose of pain medication. Of course, Jo did not do it intentionally, but we learned a valuable lesson - never trust the patient. Jo had gotten into bed for the night and I had given her some pain pills. After dosing for a few minutes, Jo woke up and asked Emily if it was time for some medication. I have a new understanding of why hospitals have a system for everything.

Today will be a day filled with visitors. The home care nurse is already here to draw blood and check Jo over. Later today the physical therapist and the occupational therapist will come by. Then tonight, the reserve forces get called into action. Meema is flying in from Minnesota to help out for a week. We really need Emily for another year, and preserving her sanity will help us make that possible. Thanks Meem!

M*A*S*H 10950

How do I even begin to describe the recovery process? Maybe I wasn't paying attention, but I never heard anybody say how difficult these post-surgery days would be. Jo is in some intense pain. She is taking very strong pain killers, but even then, she is never anywhere near pain free.

On top of that, Anna has developed some sort of stomach virus and an ear infection. She is having trouble sleeping, she doesn't want to eat and what she does eat doesn't stay down for long. Emily has put in a request for combat pay and hazardous duty pay. She is now threatening to ask for disability pay due to the mental anguish she suffered when she had to leave Jo at home alone with her pain killers, while she took Anna to see the doctor.

I'll see what I can do to come up with some good news tomorrow.

Back Home Again, Pharmacy in Tow

Jo was let out of the hospital today around 1pm. I know she was excited just to get home, take a shower and lay in her own bed. Just walking from room to room in our house is going to be great exercise. I'll bet tomorrow's lunch money that by next weekend, she will feel so good that she will be begging to go back in and have the right hip replaced sooner than later.

Other than the obvious pain associated with having your hip sliced open, Jo says the primary pain she still feels is her right shin. According to my chiropractor (who, by the way, is awesome if anybody in Denver needs a chiropractor), hip problems can lead to shin pain. I don't know how or why, but I do know that Jo's left shin is not bothering her any more now that she has a new left hip. Interesting, eh?

Emily spent this evening trying to get Jo's medications sorted out and organized. She is already feeling the strain of taking care of 2 instead of 1. Fortunately, I think the elder will regain her independence extremely fast - the younger is going to take some work. One of Emily's toughest tasks will be keeping track of the 40 or so pills per day that Jo is taking. Many of those are still connected to her Aplastic Anemia and the rest are primarily pain pills.

Intense Physical Therapy, Followed By Complete Exhaustion

Emily, Anna and I went to see Jo this morning and she was doing great. She was energetic and upbeat. I was amazed at how well she was doing and I started to think she might come home sooner than I expected. We took Anna back home for her nap and I came back by myself later that afternoon. In the meantime, physical therapy had come by.

Evidently, the therapy people put Jo through some pretty tough paces. By the time I saw her again, she was completely worn out and fairly disoriented. The nurse said that Dr. Kelly has some pretty aggressive goals for Jo so that she can come home as soon as possible. By 7:30pm, she was sleeping pretty hard with the help of some pretty strong pain medication.

Jo, since you won't remember any of this, but I know you will eventually read the blog, I do want to tell you the funniest thing you said. You came out of the bathroom and asked me to get you a swimming suit out of your swimsuit drawer. For a couple of minutes I tried to figure out why you had brought a swimsuit to the hospital until it finally dawned on me that you must have thought you were at home.

By the way, a lot of people have asked how Jo's lifestyle will be affected by having artificial hips. Dr. Kelly did say that we should do less mountain climbing and more swimming in tropical island locations, we should do less skydiving and have more massages, we should run fewer marathons and possibly drink more margaritas. I told her the limits of my sacrificial spirit run very deep!

Enough Resting Already, Let's Get You Back on Your Feet

Physical and Occupational Therapy wasted no time getting Jo back on her feet today. She is walking with a walker, but she made several trips back and forth across the room, practicing various movements and proper technique for getting on and off the bed. I must admit, it was humbling to see one of the most graceful people I have ever known, now reduced to steps of no more than 4 to 6 inches in length.

For the most part, though, today was still a day of half finished sentences. Jo would start to say something and then she would fall asleep before she could finish. She would reach for her Starbuck's cup and then fall asleep with the cup only half way to her mouth. No matter how hard she fought it, her eyelids would get too heavy to hold up. 3 or 4 seconds later, she would wake back up and wonder how she had lost yet another battle with the sleep monster. Jo now has a much deeper understanding of my entire college experience.

A New Left Hip

Jo went into surgery at about 11am this morning and Dr. Kelly told me to expect 2 .5 hours, but to give her 3 just to be safe. She ended up using the full 3 and then some. Jo's time in the recovery room was about double what we expected also. According to Dr. Kelly, the operation went very well, but it was a "struggle".

Dr. Kelly said that when she got the hip opened up, everything was inflamed and that made everything a bit more difficult. Walking around on broken body parts for 12 months really took a toll on the entire hip area. I can only imagine how much pain Jo has really been in the past 12 months based on Dr. Kelly's description of what she saw on the inside. Actually, the best any of us will every be able to do is imagine, because one thing I do know about Jo is that she will forever downplay it and say it usually wasn't all that bad.

Jo was pretty predictable throughout the evening. She would try to hold a conversation, but then she would fall asleep while she was talking. She said it reminded her of being in labor with Anna - not the painful part of labor, but the falling asleep between each contraction part.

Yesterday, Jo had an MRI on her knee, shin and ankle. She has had some pain in those parts of her legs. Hopefully the shin pain is associated with the hip problems (which can happen), but of course, we worry about necrosis showing up in the other joints. We should have some data from that test next week.

Dr. Emily

Anna's favorite part of every week is gong to "My Gym" where she sometimes plays the roll of a traffic cop, making all the little kids line up and go one by one into the ball pit. These hand motions will also come in very handy when she learns Jo's dance, "Don't Stop".

Just when I decided to end my blog procrastination, things have started to change fast enough that yesterday's news is already out of date. Jo will now get a red cell transfusion on Wednesday to get her ready for her surgery on Thursday.

The other big news is the ever-expanding duties of our wonderful nanny, Emily. Jo has been on coumadin to thin her blood for quite a while now, but she has had to stop taking it to prepare for surgery. However, in order to combat the risk of clotting due to the PNH problem, she has been switched to a medicine that must be given as a shot in the morning and another at night. That's where Emily comes in.

Emily was trained by Dr. Alvarez' staff this morning on how to adminster the shot and she is doing extremely well. According to Jo, the only part of the training that seems to have escaped Emily is the part about inserting the needle "quickly". Well, tomorrow is another day to further refine her technique.

The Stars Begin to Align

Only 3 more days and a wake-up before Jo's surgery and it looks like any potential hurdles have been removed. This past Friday, United Healthcare and the Health One Hospital Network came to a resolution, which is a huge monkey off the shoulders of our doctors. We now know for sure that Jo will have her hip surgery at Presbyterian St. Luke's in downtown Denver, the hospital her Orthopedic Surgeon normally works out of. All of the contingency plans for using other hospitals can be tossed to aside!

Jo's surgery is schedule for 10am on Thursday morning and she should be recovering by noon. For anybody familiar with hip replacements, you know that this surgery is considered very easy. When the doctors talk about replacing a hip, the conversation doesn't sound much different than a conversation about changing a light bulb. The only thing that might make Jo's procedure a little tricky is her blood situation - and even that appears to be a non-issue.

There was a lot of talk about Jo getting transfusions in the week prior to surgery to get her counts up to where they need to be, but even that is not going to happen. Her platelets had gone up to 114,000, but they are now back down in the 90,000 range and her red blood cells, which still have the PNH problem, have come up high enough that she won't need any red cell transfusions before she goes in on Thursday. Of course, she will get whatever she needs once she is in the hospital, but not needing transfusions prior definitely gives us a nice feeling of independence.

A Date is Set for Surgery #1

Jo was actually supposed to have her first hip surgery last Thursday, but due to several factors, most notably the feud between United Healthcare and the Health One Hospital Network in Denver, things have been delayed. Jo's first hip surgery is now scheduled for November 9th. It's hard to believe that in barely over 2 weeks, the process or regaining mobility could begin.

Of course, Jo has the most amazing attitude you could ever imagine, and she would probably never admit the truth, but for the sake of accuracy, I will share with you how tough her hip problem has become. From a standing position, Jo can bend down toward her feet no more than about 45 degrees. Try putting your socks on while only bending 45 degrees. It cannot be done.

Jo uses a cane to get around the house and that helps a lot. When she goes outside of the house, she still uses her crutches, which come with their own hazards. Yesterday, we were at the Park Meadows Mall, taking Anna for a little walk. Jo's crutch slipped on the marble floor and Jo was instantly headed for the floor. Fortunately, before coming to a rest on the floor, she landed partially on our new nanny, Emily. We were all scared to death, but when it was over, Jo was okay - a little more sore than normal, but no pain that would indicate bone damage.

Some of the toughest things for Jo are getting in and out of the car, getting in and out of the bath tub and picking something up off the floor. Back in February, when we were at the NIH, they gave us a bunch of "tools" to help with daily activities and we are now becoming more and more dependent on those tools.

Jo's blood counts are very good and they are holding steady. She is still taking Cyclosporine, which is an anti-rejection drug normally given to transplant patients. She will not be completely off of the Cyclosporine until sometime around August of 2007. It's amazing how non-threatening Jo's life-threatening blood disorder seems compared to the problems she has with her hips.

Our nanny, Emily, came to live with us from England at the beginning of October and she and Anna are already best friends. Emily has been absolutely tremendous and we are extremely lucky to have been put in touch with her. Emily is a very good friend of Rachael McEnaney, one of the top line dance instructors in the world and a very good friend of Jo. Thank you Rachael for getting us in touch with Emily.

We are coming up on 2 full years under the care of Dr. Alvarez and to commemorate this anniversary, we have something very special in the works for him. Believe it or not, The Pussycat Dolls are working on a remake of one of the hit songs that will be dedicated to him on the two-year anniversary. I have personally volunteered my time to try to make it possible for them to come and sing to him in person. Stay tuned...

A Belated Goodbye Message to Mamaw

Yes, I am a delinquent blog poster. Jo's health has been pretty steady and there hasn't been much to write about. Her platelets went up over 100,000 for a couple of weeks and then they dropped down to 86,000 or so. For the most part, we are waiting to see if the new hip resurfacing technique is going to be an option or not. The hope is still to have one hip operated on before Christmas and the other after the first of the year.

I do have to say (a belated) thank you to Jo's mom, referred to as "Mamaw" by the grandchildren. The chill in the air today made me think that it wouldn't be a very good day for strolling. Jo's mom was here from April until the beginning of September and she took Anna strolling around the neighborhood multiple times per day, every day. Everybody in the entire neighborhood knows Anna pretty well after this summer.

I am not 100% sure that Mamaw knew exactly what she was getting into, but she handled it like a champ. Anna was pretty close to 20 lbs. by the time Mamaw came to Denver, and lifting a 20 lb. sack of potatoes a hundred times per day will wear you out. I know because on Sunday nights I was exhausted and all I could think about was getting to my office Monday morning so that I could get a little rest.

The days of carrying Anna all over the place are quickly diminishing. Anna is in love with her new walking skills and I am sure running is only a few weeks away. For now, she is trying to master going up and down some small steps.

Thanks for spending the summer with us Mamaw. You were a tremendous help and I know that Anna absolutely loved having you here!

One last cute story. Just a couple of minutes ago, two of the neighborhood girls (about 5 or 6 years old) came to the door and asked, "Can Anna come out and play?" This has happened 3 or 4 times per week all summer long. Kids are amazing. Age really doesn't mean much to them. To these girls, Anna is just another kid on the block.

Would you rather have The Luck of the Irish...or a little Polish Persistence?

First of all, Jo's health is holding steady. The big news is that for the first time in almost 2 years, Jo will only be getting her blood checked once per week instead of a minimum of twice per week Yes, Dr. Alvarez gave her his official blessing to cut back to weekly CBCs. Considering the amount of time a little trip to the Doctor's office actually takes, this is wonderful news for Jo!

Enough of that though. Let's get on to the juicy stuff! Last night Jo's mother, Rita, was informed by somebody in Texas that just recently, this person saw Colin Farrell being interviewed on some late-night talk show program and the host asked Colin about his first job. He mentioned that he learned how to line dance in Ireland from Jo Thompson and then he taught line dancing for about 8 months.

A search on Google revealed the following from March, 27, 2005:

COLIN FARRELL revisited his embarrassing past on comedienne Ellen Degeneres' chat show in America when he had to teach the host and three audience members linedancing moves.

The movie star used to teach country dancing in Ireland when he was a teenager, and Ellen insisted he gave a demonstration.

Embarrassed Farrell told her, "There was a craze for a year when I was 17.

"This bird came in from Texas and taught us all how to linedance and then she went back to Texas and we linedanced and went around Ireland teaching people how to linedance."

The Irishman was left red-faced when he tried to recall his skills.

He said, "This is mortifying... We've had enough. I'm dying here, man."

It makes you wonder, doesn't it? Mr. Farrell has achieved significant fame and fortune in his life, but does he know how close he was to one of the most valuable treasures ever found on this earth? Well, Mr. Farrell, enjoy your money and everything that comes with your life in the fast lane, but always remember...you met Jo Thompson first, but I married her!

What do you want first...the good news or the bad news???

Let's start with the good news. Last week, Jo's platelets hit 94,000 - an all time high! I was naked and ready to run down the streets of Highlands Ranch hootin' and hollerin', but Jo slammed the door shut just as Anna had gotten her diaper undone and was about to join me.

Yesterday, Jo talked to Dr. Young and he was very pleased with the results of her bone marrow tests. He said overall, Jo's bone marrow looks good. However (that usually signals the bad news, right?), her PNH problem has increased. Back in February, 30% of her red blood cells were defective due to the PNH clone issue. This time, 80% of her red blood cells showed the PNH problem.

Even though Jo's bone marrow is producing more red blood cells, the cells are bursting as soon as they enter the blood stream. When the cells burst, they leave "garbage" (i.e. cell membranes) floating around in her blood stream, which increases her chances of having blood clots. According to Dr. Young, the miracle drug (code name: eculizumab - Alexion Pharmaceutical) is supposed to be approved by the FDA within a year and it should prevent the red blood cells from bursting. In the meantime, until the drug is available, Jo will have to take Coumadin to thin her blood to prevent blood clots. When you think about that, it's kind of ironic - Jo's bone marrow wasn't producing platelets, which meant she would have trouble clotting and now she has to take a medication to prevent clotting. Hmmph?

Today, we saw Dr. Kelly (the orthopedic surgeon here in Denver) again. She has been waiting for us to get permission from Dr. Young to move forward on Jo's hips. Dr. Young didn't exactly say, "yes, go ahead", but he did say he understands Jo's situation and he feels she will be fine to go ahead. His hesitation is easy to understand. Hip surgery will put a good deal of stress on Jo's body. The way Jo sees it is that if Barry Manilow can do it, she can do it.

Dr. Kelly is getting trained in late September on how to do a new hip resurfacing surgery as compared to the existing total hip replacement surgery. She wants to wait until after her training to make any decisions so she can find out from the experts if Jo is a candidate for this new technique which would give her more strength and flexibility than the traditional total hip replacement. Dr. Kelly did agree that it is reasonable for us to expect to have one hip surgery complete before Christmas and the other hip done approximately 3 to 4 months later.

We also questioned Dr. Kelly on the pockets of necrosis that are forming in Jo's shoulders and her knees. She said that there are a lot of options for the shoulders and the knees, but (sort of the same as "however", eh?) nothing can be done until the hips are fixed. After that, things can be done to try to stop or reverse the damage to the other joints.

NIH - 6 Month Checkup

Earlier this week, Jo and I traveled to Bethesda, MD for her 6 month checkup Tuesday morning at the NIH. It's hard to believe it has been 6 months since we were there for her ATG treatment! The primary physicians were not in town, but we did get to see one of the attending fellows and Jo did have a bone marrow aspiration and biopsy. We should have the results by the end of next week.

The fellow, Dr. Aliu was a very interesting "fellow". He claims to have just gotten over malaria, but it wasn't that big of a deal to him. He says he has had malaria a hundred times. Dr. Aliu said that he was very pleased with all of Jo's blood counts, but only Dr. Young or Dr. Scheinberg had the authority to label Jo as "responding" to the ATG and give us the green light for Jo's hip surgeries. We are pretty sure they wouldn't have given us the permission we are looking for until after they had a chance to see the bone marrow results anyway.

So, we hope to get good news next week and get official permission to take the next steps. Speaking of next steps, Anna is just about ready to walk. She pushes her walker all over the house at break-neck speed and she will stand for several seconds without holding on to anything before plopping down on her homper (that's Texan for dupa - which is Polish for buttocks).

Does Anybody Remember Anthony Carter?

Anthony Carter was one of the greatest wide receivers ever to play football. He played for the Michigan Wolverines in college and then his best years in the NFL were spent with the Minnesota Vikings. He wore the number 81. Well, place your bets now for the Vikings to win the Super Bowl this year!!! Jo's platelets were 81,000 today. It's got to be an omen!

Yes, Jo's platelets hit 81,000 today - the highest they have been since she was diagnosed with Aplastic Anemia. This is tremendous news. Her white cell count was 3.6, a full point higher than last week. Her other counts were also very good, although most of them I cannot understand well enough myself to try to explain to anybody else.

The news is not as excellent on the hip replacement front. Dr. Kelly has asked Jo to consider holding off until at least October to schedule any sort of hip surgery. This is actually comforting news to Dr. Alvarez. When Jo told him that she was ready to move forward with her hip surgery and she asked for his blessing, he was hesitant. He said, "I feel my daughter is asking me if she can go to the prom." Being the "blood guy" he would like Jo to wait as long as possible for her counts to stabilize, but he also knows that it would be unrealistic to hope for his daughters to wait until they turn 21 to start dating.

Dr. Kelly also took an x-ray of Jo's shoulders and they are also showing small pockets of avascular necrosis. Jo's shoulders and her knees all ache, but don't present nearly the problems caused by the hips. The hips are the primary weight bearing joint and the compromised bone really takes a beating just from normal, every-day activities.

Anna is on the verge of walking, which is actually making things easier around the house for Jo. If need be, she can take Anna by the hands and walk her from one room to another. Our trip to the NIH is scheduled for August 15th and 16th, and Jo will have a bone marrow biopsy while we are there.

Listen Up Anna, Just 230 Years Ago...

Anna is anxious to see fireworks for the first time, but I am not sure how she (or I for that matter) will be able to stay up late enough to see them. We may have to ask mom to take some video.

Jo's platelets are holding steady in the low 50s. This week, we hope to move our NIH appointment up to August 15th and then get a date on the caldendar for the first hip surgery. Assuming a 6 week recovery period for each hip, our goal remains to have Jo back to full mobility by Christmas!

Anna Already Earning Her Keep - Is It Too Early to Say "Supermodel"?

So, many of you may not know that Anna has already had her first "paying" modeling job. At the tender young age of -1 week, Jo and Anna posed for an advertisement for St. Anthony's Hospital. That ad has just now shown up on a billboard in Denver. If you are in the neighborhood, you can take a look for yourself at the corner of Speer and Federal.

On the Jo front, the NIH has said that we must wait until after Jo's 6 month checkup in August before we move forward on any type of hip surgery. So, for now, we wait.

The Little Girl Turns One and Mommy Gets a Hip Update

It has been an eventful week. Anna turned one over the weekend, and we had all of the neighborhood kids over for cake. Anna was more fascinated by all of her guests than she was by the cake. Our neighbors need to get busy making more babies so that Anna isn't always the youngest kid on the block. We actually have a few neighbors without kids, so I don't think Anna will be the youngest for long.

Last Thursday, Jo and I went to visit Dr. Cynthia Kelly. Dr. Kelly politely denied being the Colorado "expert", but she did admit that she does more work on patients with Avascular Necrosis than anybody else in Denver. I must admit that talking to her was much like talking to the doctors at the NIH. She was very precise with her thoughts and really left very little doubt in our minds as to what needed to be done.

The ball joints in Jo's hips have both "flattened" more in the past several months and there is a good chance that both hips will need to be replaced. Replacement is most probably the only choice on the right hip. Dr. Kelly mentioned that when she gets into the left hip and takes a look, it is possible that she would put a metal covering over the hip bone, which could buy several years before needing a total replacement. She said to think of this option the same way we might think about putting a cap on a tooth.

Both of Jo's knees also showed small pockets of Avascular Necrosis. Jo does have some discomfort in her knees that comes and goes, but nowhere near as bad as her hips. The next time we see Dr. Kelly, we will have to ask Dr. Kelly what she thinks will happen to Jo's knees.

Jo has sent an email off to Olga at the NIH, asking her to get official word from Dr. Young as to when we can pull the trigger on hip surgery. As soon as we hear from the NIH, I will let you all know.

Holding Steady

Jo's platelets are holding steady at about 53,000. Due to an eventful weekend, she did have red cell transfusions last Friday to get her energy levels up. Jo's red cell counts and her hemoglobin counts have been hovering just high enough to not need transfusions, but low enough that her energy levels are just not where they would normally be.

The next big event on the medical calendar is to meet again with an orthopedic surgeon to evaluate Jo's hips and propose a plan of action. Once the plan is agreed upon, we can press the NIH for approval on a timeframe.

NIH - 3 Month Checkup

This morning, Jo and I were in Bethesda, MD at the NIH for her 3 month checkup. Her platelets had dropped to 43,000 and I wasn't expecting good news.

We spent about 15 minutes with Dr. Young and he had nothing but positive things to say. His first words were, "You are clearly responding [to the ATG]." His second sentence was, "Your bone marrow is definitely producing blood cells." He explained to us that the patients that show this type of response by 3 months or 6 months are the patients that experience the best long-term results.

Dr. Young also explained that Jo could live for the rest of her life at the levels she is currently at. A level of 40,000 to 50,000 platelets is nowhere near normal, but it is a level that does not require transfusions. The only time she would need to be transfused is before any type of surgery, such as is required on her hips. He did say that Jo should start working with the orthopedic surgeons on a plan for her hips that could be implemented as soon as September!

Dr. Young went way over my head with a brief explanation of all the other things in Jo's blood that we are keeping an eye on. There is a lot of stuff happening that isn't considered life-threatening, but it must be watched. The bottom line is that he was extremely pleased with the progress so far and we'll just have to wait and see what happens between now and Jo's 6 month checkup.

The PNH Clones are still in Jo's blood and many of her red blood cells are bursting after they are created, but Dr. Young didn't feel this was a major issue right now. By year's end, a new "miracle drug" will be released that Dr. Young (and Dr. Childs) both believe will control the PNH problem.

And, in the 11th Month, God said...

"Let there be mobility!" This past week, Anna started crawling pretty good. Fortunately, she is not too fast yet, but the amount of effort needed to keep up with her is growing exponentially.

Anna is having a little trouble sleeping. The past 2 days, when we put her down for her nap, she has fallen asleep sitting up in her crib. Her little head bobs up and down and sometimes bangs the side of the crib. However, being able to sleep sitting up is a good skill to develop for when she has to take some of those less-than-useful "core" requirements in college.

Jo's platelets are at 51,000. She really hasn't had any major changes to her counts in several weeks. In just over a week, Jo has her first checkup at the NIH. We are very excited to go back and touch base with the doctors and see what they think of Jo's improvement so far.

April Showers Bring May Flowers

Jo, Anna and Mamaw Rita come back to Denver on Wednesday. Jo has only had her blood checked once in Texas and her platelets were at 47,000.

Bye Bye Meema

This morning, I took Jo, Anna and my mom to the airport. Jo and Anna are headed to Texas for 10 days and my mom is headed home for good. When Jo comes home from Texas, her mom will come with her for the summer.

My mom was here with us for over 6 months and for that we will be forever indebted. The first 3 of those months, she lived in the upstairs bedroom at our previous home, taking care of Anna who also had a bedroom upstairs.

Then came the move. We were 95% moved and unpacked in 8 days. My mom is an organizer and her persistence got the job done fast and got us back to a peaceful state of being in a tremendous hurry.

For 6 months, my mom gave and gave and gave. She watched Anna every time Jo went to the doctor, she took Anna with her to Minnesota when we went to the NIH, she got Anna on an awesome schedule and I never once heard her complain about anything we needed her to do. Mother Theresa would have been proud!

In 6 months, my mom and I may have spent more time together than we did in the past 20 years. It was sad to see her go this morning, but the Minnesota summer awaits and if you have never been to the lakes of Minnesota during the summer, you have really missed out.

Thanks for everything mom! I love you.

57,000 Platelets!!!

On Thursday, Jo's platelet count was 41,000 and I must say I was getting a little tired of hearing 40,000 or 41,000 every time Jo had her blood checked. Then on Friday, the counts came in at 57,000. Now, that's progress!

Happy Easter!

Happy Easter everybody! Jo's platelets have dropped a little, but they are holding steady around 40,000. When they hit 50,000, we had just spent two days in Colorado Springs which is higher in altitude than Denver. Apparently, blood production is enhanced in thinner air.

Jo had red cell transfusions last Thursday, but she has still only had a single platelet transfusion since we came home from the NIH at the end of February. Our next trip to the NIH is rapidly approaching for Jo's 3 month checkup on May 23rd.

Anna Update - 2 teeth and almost crawling. I did see her go from a laying position back up to sitting for the first time today. Supposedly, her Meema taught her to do that earlier this week, but I got the feeling today that she was inspired by my coaching.

50,000 Platelets!!! Deal...or No Deal?

We have been expecting a big jump in Jo's counts and today we finally got it! Dr. Alvarez has had one other Aplastic Anemia patient and based on his experience, we had been hoping for this day to come. Jo had actually dropped to 30,000 last Friday and her red cells were low enough that she had to negotiate her way out of getting a transfusion. In the words of Howie Mandel, "Jo Thompson, you made a great deal!"

As for Jo's MRI, we don't have much news. Everything is about the same as it was before Christmas.

33,000 Platelets!

Jo's CBC this morning showed a whopping 33,000 platelets, up from 28,000 last Thursday. Her platelets seem to be growing by about 1,000 per day. The rest of her counts have been holding steady and no transfusions have been necessary.

Today, Jo had an MRI of her hips and knees. She has had some discomfort come and go in her knees. She has always said that "I make her weak in the knees", but this seems to be different.

Once Jo's platelets get up over 80,000 or 90,000, she will be eligible for some sort of treatment for her hip pain. In about a week, we will have the results of her MRI and we'll be able to see if her Avasular Necrosis is...

1) Getting Better
2) Staying the Same
3) Getting Worse

I'm starting to sound just like Dr. Alvarez, eh?

Happy St. Patrick's Day!

Anna has been searching for 4-leaf clovers, hoping they might bring a little luck for her mom. Anna has also been practicing biting the shamrocks with her FIRST TOOTH!

Jo did have to have transfusions last Saturday, so it's kind of tough to know exactly what her counts are doing. The transfusions drive the counts up, making it impossible to know what would have happened without them. While Jo's platelet counts seemed to be coming up, her red blood cells had dropped far enough to require a transfusion. After ATG, it is not uncommon to see the different components of blood production respond at different rates.

Jo will see Dr. Alvarez on Thursday for the first time in over a month. It will be interesting to get his comments.

Progress!!!

I hate to jinx anything, but we do have news that we have not had in over 16 months. Last Thursday, Jo's platelets were 14,000. On Friday, they were 15,000 and today, they were 21,000. Although these are very exciting numbers, we are not yet quite ready to run naked through Larimer Square as did Bronco fans after the 1998 Super Bowl victory. However, if you live in Highlands Ranch, you may want to peek out the window now and then...

Back Home Again

Jo and I came home from the NIH on Saturday night. Little Anna and my mom came back to Denver from Minnesota on Tuesday morning. It is great to be home and we are all settling back into a routine.

Jo is getting close to being back to full strength. She will now send blood samples back to the NIH every week and we'll fly back to Bethesda in 3 months for our first checkup. Every day she takes cyclosporin, which is a drug that suppresses her immune system and gives the ATG a chance to do its job. With a little luck, we will hopefully see improvements to her blood counts within a month or so. Stay tuned!!!

Prison Break

With Dr. Herndon's permission, we made a dash for civilization this evening and we had a nice farewell dinner at Houston's. The Spinach dip was excellent!

Jo will spend one last night here in the hospital. Tomorrow morning, she will get her PICC line removed and she'll get discharged. You wouldn't believe the stuff they have given us to take home. We have a shopping bag full of medications and another bag full of canisters for shipping blood samples back over the next 3 months. We may need to stop at the post office on the way out of town and ship half of it home.

Entering the Home Stretch

On December 6th, 1941, somebody probably looked out over Pearl Harbor and said, "All is clear in the harbor". We all know what happened the very next day. Well, that's kind of how yesterday went.

Not more than a couple of hours after I made yesterday's blog entry, serum sickness struck Jo pretty hard. She slept through most of the evening and then fought with side effects again in the middle of the night. The good news is that because she is still here with her PICC line, they are able to give her lots of medications to immediately combat the sickness.

By early afternoon today, Jo was feeling pretty good again. The doctors have actually started arranging for us leave the hospital on Saturday. Depending on how Jo feels, we may hang out here for an extra day or two, but the doctors said that as soon as we are discharged, we are free to fly home.

Jo will then come back to the NIH in 3 months, again in 6 months and then every year on her anniversary of the treatment for checkups. One important part of the government research is to follow how their patients respond in the long term.

We were given marching orders to take back for Dr. Alvarez. Jo will still see him a couple of times per week, shipping blood samples back to the NIH on a regular basis. The NIH will also be actively involved if anything major comes up, like an infection.

All is Quiet on the Eastern Front

Jo has felt very good both today and yesterday. We have been hoping to get a day pass from the hospital to go to our favorite restaurant, Houston's (walking distance from my hotel), but no such luck. The doctors have said that Jo is recovering well, but it will take a while for her to get her stamina back.

According to Jo, the expectation of getting sick turned out to be worse than the actual days of being sick. As soon as the doctors feel comfortable that Jo is past the normal window of opportunity for "serum sickness", they will let us come home.

PNH..."Pure Cane Sugar, That's the One."

Does anyone my age (37) remember that commercial jingle from our childhood? "C&H, pure cane sugar, that's the one!"

Jo's been sleeping all day, so I've been surfing a bit trying to understand this PNH issue. As far as I can tell, PNH Clones are red blood cells with defects. The defect causes the red blood cell to break down, which in turn causes an anemic situation.

The presence of PNH Clones is not always an issue according to Dr. Childs. The severity of the problem is determined by the percentage of red blood cells with defects and the percentage without defects. Due to the Aplastic Anemia, Jo's bone marrow is not producing the proper numbers of red blood cells, so there is no way to know right now if the PNH Clones will cause future problems.

Right now, the focus is on getting Jo's bone marrow back up to livable production levels. Then we can determine if her bone marrow produces enough good red blood cells or if it just produces more and more PNH Clones.

The PNH Clones definitely complicate things a bit, but they do not change the worst case scenario. The worst case scenario is that Jo's bone marrow is beyond repair and she will need a transplant. If she receives a bone marrow transplant, she would receive an entirely new blood cell factory from her brother and we know his factory is producing a good product.

For more information on PNH, please visit http://www.emedicine.com/med/topic2696.htm.

I will have to get an update from Jo tomorrow. She looks pretty content to sleep right on through the evening.

Another Tough Night

About 10pm last night, Jo was done with her last bag of ATG and she was hoping the worst was over. Then things went downhill fast. She had a pretty rough night with all the normal side effects - fever, chills, rash, nausia, etc. On the bright side, there is no more ATG. The staff has been working through the night and into this morning on getting the side effects under control.

ATG Part 4 of 4

Jo got her last bag of ATG today without any significant problems. Her blood pressure and her pulse both remained near normal. She is extremely worn out from the past 4 days, but she is resting well.

Jo will stay in the NIH hospital for the next 7 to 10 days as she regains her strength. ATG is a very powerful drug and it takes a toll on the patient's body, much of which is hidden to the onlooker (me). So far, we are right on track and if we stay on track, we should be home by March 1st.

ATG Part 3 of 4

It's 6pm and Jo's 3rd bag of ATG is about 1/3 gone. I haven't talked to Jo much today. She has been sleeping all day. She did tell me that last night was not pleasant at all. Within 36 hours of first getting her ATG, she had gained 20 lbs. from all the fluids she had been given. I can't imagine there is any way to gain 20 lbs. in 36 hours and physically feel good.

In order to keep Jo's blood pressure up today, the doctors significantly reduced her medication for the side affects. The good news is that her blood pressure has been good all day. The bad news is that the ATG will remain a "little unpleasant" for a "little longer".

Little Miss Anna is enjoying her first Minnesota Deep Freeze. My mom took her back to Minnesota the same day we flew to D.C. According to Yahoo Weather, it was -18 degrees Fahrenheit in Minnesota this morning.

Dr. Childs and Some Statistics

Jo has told me several times over the past couple of days about Dr. Childs. Tonight, he stopped in to say goodbye before he went home. Dr. Childs is one of the primary members of the Aplastic Anemia team, but more importantly, he oversees all of the bone marrow transplants done for Aplastic Anemia patients at the NIH.

Jo also has a separate blood disease that has to do with PNH Clones in her blood. Dr. Childs is going to bring me some articles on PNH Clones so that we can better understand exactly what that means. He said 10% of Aplastic Anemia patients also have the PNH clones and they actually tend to respond to ATG better than people without PNH. However, after responding, the PNH problem could get better, stay the same or get worse (interesting - these are the same three possibilities Dr. Alvarez has mentioned a million times - the next time you see Jo ask her to do her Dr. Alvarez impersonation). If it doesn't get better, it could cause problems that would still require a bone marrow transplant even if the Aplastic Anemia is handled.

According to Dr. Childs and Dr. Young, 2 people per million get Aplastic Anemia in the United States every year, compared to about 6 people per million in Asia. PNH Clones affect about 1 person per million every year. I always knew Jo was "1 in a million".

ATG Part 2 of 4

It's 5:45pm on the East Coast and Jo's 2nd round of ATG is being hooked up as I type. The past 24 hours have been spent managing the various side effects of the ATG. The primary road block to getting started today was Jo's blood pressure.

Rest assured that nothing has happened here that we were not previously told to expect. As far as the NIH goes, we have not come anywhere near uncharted territory. However, through the night and this morning, Jo's blood pressure dropped to 50-something over 40-something. In most hospitals, that would warrant a trip the ICU as blood pressure that low is considered a life-threatening event and most hospitals are not equipped to handle life-threatening events on the main patient floors. The NIH, of course, is plenty well equipped, probably just about everywhere.

To get her blood pressure back up, Jo received 6 liters of fluid, platelets, red cells and antibiotics (approximately 15 lbs. of fluids) and the doctors joked that most people would have blown up like a balloon. Jo looks as beautiful and radiant as ever.

We have been told to expect an easier time with day 2 compared to day 1, especially with the horse ATG. The official forecast has been downgraded from a "little unpleasant" to "slightly uncomfortable".

ATG Part 1 of 4

Yesterday got away from us and Jo was not able to start her ATG until this morning. They started giving it to her at about 10:45am and it just finished now at 5:15pm. The afternoon was definitely a "little unpleasant", but Jo is sleeping a bit now. According to our nurse, Jo did extremely well with the first batch compared to most people. ATG normally has a lot of side effects - fever (Jo hit about 103.5) , chills, nausia, etc. However, as you all know, you'll never hear Jo complain about anything.

"PICC" a Peck of Pickled Peppers?

This morning, Jo passed her allergy test to see if she would have any allergic reaction to the Horse Serum. Personally, I'm still a little jet lagged, so I didn't make it over to the hospital until 9:30am. Jo said that at 8:30am, about 15 doctors came into her room. Most of them just watched while Dr. Childs spoke with Jo. He is the transplant expert here at the NIH, but he also plays a lead role on the overall Aplastic Anemia team.

Dr. Young has also been by to visit. Dr. Young is the lead guy for the entire research team. He is considered one of the foremost experts on Aplastic Anemia in the world. We have heard is name many times in our various travels over the past year and it was neat to finally meet him.

Jo will get her PICC line about noon. PICC stands for Peripherally Inserted Central Catheter, a clear plastic tube, about 20 to 24 inches long that will go up her arm and into one of the major blood vessels leading into her heart, used to administer medication and retrieve blood samples. For the first time in over a year, Jo will be able to go a full week or more without getting poked.

Later today, Jo will receive her first dose of the ATG. Dr. Young described the first day or two as a "little unpleasant". We'll be the judge of that!

We Arrive at the NIH

Happy Valentine’s Day Everybody! It was really tough to come up with a Valentine’s outfit for Anna. Cupid outfits are just not easy to come by.

Jo and I flew into Washington D.C. yesterday and made our way to the NIH in Bethesda, MD. Last night we had a nice, romantic Valentine’s dinner in Georgetown. Other than the freezing cold weather and the snow piled on the streets, it was a great way to start our trip.

This morning we caught the 6:55am shuttle to the NIH – 4:55am Denver time, by the way. We saw several of the doctors in the morning and by about 11am, Jo was getting another bone marrow biopsy WITH SEDATION. Just like our last visit to the NIH, I was allowed to stay in the room and watch the procedure.

Dr. Sloand performed Jo’s procedure and she let me know that the NIH pays $250 to anyone who will donate bone marrow for their various experiments – no sedation provided. She said they will kick in an additional $30 if I donate blood. Jo suggested that I give some bone marrow each day we are here. I’ll have to give that some thought.

Around 5pm, Jo was admitted to the NIH hospital and we were told she would receive the Horse Serum ATG. The building is state-of-the-art and Jo’s room is actually very nice. Her TV doubles as a computer with Internet access. What more could you ask for?

ATG is an immunosuppressive therapy – it suppresses the immune system in order to give the bone marrow a chance to start working again. One thing we learned today was that it should take between 3 and 6 months to determine how Jo responds to the ATG. If she does not respond by 6 months, the NIH doctors all agreed that Jo should then begin a transplant and she would be eligible to have that done at the NIH.

Plans for the NIH

First of all, our condolences to all those Bronco fans here in the great state of Colorado. Everybody is busily gearing up for this afternoon's Super Bowl festivities, but the season ended for the Broncos 2 weeks ago. Take it from a hard core Minnesota Vikings fan - life must go on, no matter how bad our teams embarrass us.

Secondly, a HUGE THANK YOU to everybody who helped us with our move. We have only been in our new house for 10 days, but we are already about 98% "moved in". Jo is straightening the office as I type, but other than that, there is not much left to do. Having Anna's room on the main level of the house has been an absolute joy.

Lastly, our trip to the NIH is in progress. We will fly to Bethesda, MD on Monday, February 13th, Jo will be seen once more by the doctors on the 14th, and she will be admitted to the NIH hospital on Wednesday the 15th to begin treatment.

Jo will be put on one of three paths, chosen at random. Since this is research, several people have asked if there is a "placebo". There is not. Jo's path of treatment will be made know to us when she is admitted, but she is not allowed to request one path over another.

Each treatment path is a slightly different form of immunosuppressive therapy. The medication will suppress Jo's immune system, hopefully allowing her bone marrow to recover.

Each treatment path would also require a slightly different length of stay, but 10 to 14 days is what we have been told to expect. The longest they have had anybody stay recently was 3 weeks. We have been told that the first couple of days will be like the worst flu you have ever had times 10, but Jo's body will quickly get used to the treatment and by the end of the first week, she should be allowed to leave the hospital during the daytime to see movies or do light sightseeing.

Jo will stay at the hospital each night until we return. She is then required to make an overnight trip back to the NIH to see the doctors at 1 month, 3 months, 6 months, 12 months and once a year for the first 5 years.

We are extremely excited about finally having the opportunity to take action toward a solution. Jo and I both feel very confident that the results will be positive. The NIH has made great strides over the past 10 to 15 years with Aplastic Anemia and we feel very fortunate to have their services as an option.

A Quickie Update

I know I have been slacking with my updates, but things are plodding along kind of slow. We are trying to work our way into a clinical trial going on right now at the NIH. We have been working with all of our various hospitals to get as much data out to the NIH so that they can officially "accept" Jo into their clinical trial.

The NIH will be accepting new patients every Monday until they get enough patients to fulfill the goals of their study. We found out today that we cannot get started on the 30th like we had hoped, so it is looking like we will head out to Maryland sometime in February. Due to the doctors having other commitments, they are only accepting new patients on 3 of the 4 Mondays in February.

If you would like to read about the NIH's clinical trial, please visit the following link on the NIH web site:

http://www.clinicaltrial.gov/ct/show/NCT00260689?order=10.com

Bone Marrow Results and a Firm Moving Date

Jo's bone marrow biopsy results are back and the news is a bit confusing. One of the tests indicates that the cellularity of her bone marrow is at 25% of normal, compared to earlier test that showed 5% of normal. That sounds like great news, right? However, there are two other tests that showed 5% and "suboptimal" respectively. Then there is Dr. Anderlini in Houston who warned us not to get too excited about an increase in the cellularity since Jo's blood counts are still no where close to what they should be.

On the other hand, there is Dr. Alvarez here in Denver. He thinks that these results are a very good sign and he is greatly encouraged. The one thing that everyone agrees on is that it is time to start some form of treatment.

We are trying to schedule one more trip to the NIH - maybe next week. We know Dr. Sloand wants to see us out there, but getting past the scheduling pit bulls is a bit of challenge. They just want to make sure that Dr. Sloand has an opportunity to see all of the data before getting us to commit to a trip to Maryland.

We will be moving to our new house (sans stairs) here in Denver on January 28th. Please email me at TimSzymanski@comcast.net if you are able to help us with the "Extreme Makeover - Moving Edition". Our goal is to have everything moved and put away in 1 day. Our motive is to eliminate any temptation for Jo to lift anything that she shouldn't be lifting and thus endangering her fragile hips.