Can anyone spare a couple of bucks? Ryan Seacrest and Dick Clark told me to be in Times Square by 7pm and I don't have the cab fare on me! I sure hope Hilary Duff doesn't wear the same outfit I have on. Happy New Year!
Saturday, December 31, 2005
Happy New Year!!!
Can anyone spare a couple of bucks? Ryan Seacrest and Dick Clark told me to be in Times Square by 7pm and I don't have the cab fare on me! I sure hope Hilary Duff doesn't wear the same outfit I have on. Happy New Year!
Friday, December 30, 2005
Trip Number Three to M.D. Anderson
Here is Jo with Dr. Anderlini and his assistant, Thuy, at M.D. Anderson in Houston, TX (pay no attention to the man in the mirror). Dr. Anderlini had just gotten back from seeing family in Italy where preparations for the Olympics dominate the daily news.
It will take a week or so to get results on Jo's bone marrow aspiration and biopsy, but based on Jo's blood counts and her continued need for transfusions, Dr. Anderlini is recommending that we initiate treatment soon and that we seriously consider a bone marrow transplant.
It is important to Dr. Anderlini that his patients make their own decisions regarding treatment. His favorite saying is, "Don't ask the barber if you need a haircut." He makes a living doing bone marrow transplants and he feels very strongly that based on Jo's situation, he can help her.
The option to a bone marrow transplant is a stimulation therapy called ATG, where Jo's immune system would be suppressed to a point that her bone marrow would be given every opportunity possible to get started producing blood elements again like it is supposed to do. ATG is a much less risky treatment for Aplastic Anemia, but historically, the results have not been as permanent as a bone marrow transplant. The NIH in Washington, D.C. is constantly doing research with ATG, which is one of the only options for a patient you does not have a bone marrow match. Ultimately, I suppose an ATG solution that provided permanent results would be ideal and my guess is that this is the charter of the research being done at the NIH.
If Jo were 20 years old, pretty much everybody would agree that a BMT was the way to go. If she were 60, everybody would agree on ATG. Because she is SOMEWHERE right in the middle of those two numbers, she is considered on the fence.
We have spent numerous days and nights going over the pros and cons of each option and the bottom line is that there is plenty of data to make a strong argument either way. Jo and I had an interesting conversation last night regarding the difference between making a decision and making a choice (as defined by Landmark Education). If you have never heard of Landmark Education, please go to their website and look them up - www.landmarkeducation.com. We have each spent significant amounts of time in their seminars and studying their material and we both believe that Landmark Education has had a significant impact on our lives - with or without the medical challenges we are facing.
Landmark Education distinguishes a "choice" as a situation where you weigh all possible considerations or reasons, but then you choose freely. In a "decision", the decision is made because of the considerations or reasons. For instance, when I decide to eat a hamburger instead of a salad, it is often because I like the hamburger better and it will make me feel more satisfied. The bottom line is that I have "reasons" why I decided on the hamburger. In effect, I didn't really make the decision - the reasons made the decision for me. The fact that I like hamburgers better than salad is what made the decision.
So, how does this apply to Jo? We are searching right now for some "reason" to decide between a BMT and ATG. We would love to find some glaring reason that just jumps out and clearly makes the decision for us. This sounds reasonable, but really what we are trying to avoid is taking responsibility for the decision just in case we might happen to make the WRONG decision. There is so much data to argue either option, we are going to drive ourselves bananas looking for that reason that clearly makes the decision for us. AND, if the treatment doesn't work out like we hope, we will kick ourselves over and over again for not doing the proper amount of research to find the real reason why we should have gone the other way.
The other option is to make a choice. Remember, Landmark Education distinguishes a choice as a situation where you weigh all considerations, but then you choose freely. Okay, so I like hamburgers better than salad, but salad is healthier, etc. In a choice, I weigh all considerations and then I throw all those considerations out the window and make a choice freely. Why did I choose the hamburger? I chose the hamburger just because I chose the hamburger. I don't have any reasons and I don't have any excuses!
As a freshman at the Air Force Academy I was taught that for 1 full year, the response to every "why" question would be "No excuse, sir." That was almost 20 years ago, but I think I finally get it.
It is almost time to quit weighing the considerations around Jo's possible treatment options and to make a free choice, a choice for which Jo and I will take 100% responsibility. The doctors won't make the choice, nor will the reasons make the choice. By taking 100% responsibility, there is also no chance of regret. Regret comes from letting a reason make your decision for you and then later in life thinking that you let the wrong reason make your decision.
We all have the opportunities to make decisions and choices every day and my hope is that by reading this entry, somebody might take the time to bring the distinction of choice vs. decision into their own life.
ANNA UPDATE - Anna rolled over from her stomach to her back earlier this week. She has tremendous technique - throw her head back, arch hard, kick and flip - sounds like her first attempt at dance choreography to me. Tonight, we were able to get her to roll from her back to her stomach. By the time we get back to Denver, she'll be rolling all the way down the hall!!!
Tuesday, December 27, 2005
A Question That May Never Be Answered
In very rare cases, Aplastic Anemia can be caused by pregnancy. This being known, there will always be a question as to whether or not Jo's pregnancy induced her condition. The answer will never be known for sure, but we had an interesting chat today that I wanted to share.
Jo's condition was diagnosed in November, 2004, approximately 8 weeks into her pregnancy. Her platelet counts were already at about 30,000 and dropping quickly. The timing all seems to point to a possible connection to getting pregnant.
However, in April of 2004, at the Pike's Peak Line Dance event in Colorado Springs, Jo remembers having a little cut that kept bleeding for an abnormally long time. Then, sometime in May or June, 2004, Jo woke up at home with an unusually heavy nose bleed.
In July, 2004, Jo was practicing a swing dance routine (for Swingtime in the Rockies) with Toby Munroe and she remembers feeling abnormally winded. For anybody that knows Jo, being winded by anything less than a 48 hour dance marathon (without food or water and carrying a 20 pound backpack) would be unusual. Finally, in September (about a week before getting pregnant) Jo was practicing another routine with Michael Kiehm and she had to take breaks to catch her breath much more often than normal. Yes, I know that a lot of women have trouble breathing when they dance with Michael Kiehm, but this was different!
So, there is some data that suggests that the Aplastic Anemia may have been coming on as early as the spring of 2004. If so, it's probably better that we didn't find out about it since the doctors would not have let Jo get pregnant until after the condition was resolved.
Tomorrow, we head on down to Houston where we will have a chance to see our friends, David and BeLynda, who inspired this blog. BeLynda grew up with Jo in East Texas and in September of 2004, BeLynda gave birth to triplets. She and David have done a wonderful job documenting the adventure of raising triplets on their blog - www.davidandbelynda.com.
On Thursday, we will see Dr. Anderlini at M.D. Anderson. Jo will have another bone marrow biopsy (under sedation, of course). We should have the results within a week.
P.S. Today is our 2nd wedding anniversary!!! Jo and I were married here in Lufkin, TX 2 years ago with our immediate families present. We met over 12 years ago and the past 4 or 5 years have been a concerted effort to slow our travels down enough to have a family. Every time I get Anna out of her crib in the morning or after a nap and she smiles with her big toothless grin, I realize how amazing the journey of the past 12+ years has been.
Jo's condition was diagnosed in November, 2004, approximately 8 weeks into her pregnancy. Her platelet counts were already at about 30,000 and dropping quickly. The timing all seems to point to a possible connection to getting pregnant.
However, in April of 2004, at the Pike's Peak Line Dance event in Colorado Springs, Jo remembers having a little cut that kept bleeding for an abnormally long time. Then, sometime in May or June, 2004, Jo woke up at home with an unusually heavy nose bleed.
In July, 2004, Jo was practicing a swing dance routine (for Swingtime in the Rockies) with Toby Munroe and she remembers feeling abnormally winded. For anybody that knows Jo, being winded by anything less than a 48 hour dance marathon (without food or water and carrying a 20 pound backpack) would be unusual. Finally, in September (about a week before getting pregnant) Jo was practicing another routine with Michael Kiehm and she had to take breaks to catch her breath much more often than normal. Yes, I know that a lot of women have trouble breathing when they dance with Michael Kiehm, but this was different!
So, there is some data that suggests that the Aplastic Anemia may have been coming on as early as the spring of 2004. If so, it's probably better that we didn't find out about it since the doctors would not have let Jo get pregnant until after the condition was resolved.
Tomorrow, we head on down to Houston where we will have a chance to see our friends, David and BeLynda, who inspired this blog. BeLynda grew up with Jo in East Texas and in September of 2004, BeLynda gave birth to triplets. She and David have done a wonderful job documenting the adventure of raising triplets on their blog - www.davidandbelynda.com.
On Thursday, we will see Dr. Anderlini at M.D. Anderson. Jo will have another bone marrow biopsy (under sedation, of course). We should have the results within a week.
P.S. Today is our 2nd wedding anniversary!!! Jo and I were married here in Lufkin, TX 2 years ago with our immediate families present. We met over 12 years ago and the past 4 or 5 years have been a concerted effort to slow our travels down enough to have a family. Every time I get Anna out of her crib in the morning or after a nap and she smiles with her big toothless grin, I realize how amazing the journey of the past 12+ years has been.
Thursday, December 22, 2005
An Update from Texas
Jo's platelets were down to 11,000 today, so she has to go into the hospital in Lufkin, TX tomorrow and get a transfusion. When Jo went to see the doctor today, the nurse that drew her blood was named Anna and it turns out that Anna was a ballet student of Jo's when she was in the 4th grade. Anna now has two girls of her own, ages 7 and 9.
Jo's white cells are also down to about 1.6. Normal is 4.1 and higher and Jo's have held pretty steady around 2.3 for the past year. White cells are what fight off infections, so the low white cell counts cause a fair amount of concern. When Jo got an infection a couple of months ago, her white cells dropped to below 1.0 and Dr. Alvarez was freaking out! Okay, maybe he was expressing deep concern. I guess doctors don't really "freak out".
Anyway, the doctor in Lufkin wants Jo to wear her mask more often. I don't know if any of you have seen the masks today, but they are quite nice. They have been ergonomically redesigned to fit the face better than the old days. The only weird thing is that the manufacturers have made them to look just like a duck bill. I'm a little concerned that over time, we will confuse little Anna and instead of "mama" or "dada", her first word might be "quack".
Jo's white cells are also down to about 1.6. Normal is 4.1 and higher and Jo's have held pretty steady around 2.3 for the past year. White cells are what fight off infections, so the low white cell counts cause a fair amount of concern. When Jo got an infection a couple of months ago, her white cells dropped to below 1.0 and Dr. Alvarez was freaking out! Okay, maybe he was expressing deep concern. I guess doctors don't really "freak out".
Anyway, the doctor in Lufkin wants Jo to wear her mask more often. I don't know if any of you have seen the masks today, but they are quite nice. They have been ergonomically redesigned to fit the face better than the old days. The only weird thing is that the manufacturers have made them to look just like a duck bill. I'm a little concerned that over time, we will confuse little Anna and instead of "mama" or "dada", her first word might be "quack".
Tuesday, December 13, 2005
More Platelets Today
Jo got a full batch of red cells and platelets last Friday, but for some reason, the platelets didn't stick around for long and she had to get more today. Jo joked with the nurses that the others must have been duds and she requested fresher ones for today.
The infusion center nurses, who see Jo quite often, gave her a wonderful, handmade shawl with a poem attached that one of the nurses had composed. As I read it, I must admit, I had to hold back the tears. They really did a nice job!
We are guessing that Jo may have to get more platelets this Friday in preparation for her big trip to Texas on Saturday. Anna and Jo will spend the next two weeks in Lufkin, Texas with Jo's family. I will join them on Christmas day.
We did get one good piece of news from Dr. Alvarez today. For the past couple of months, Jo has had to get IV infusions 2 times per week to lower her iron counts, which are elevated by the frequent blood transfusions. When Jo gets back from Texas, Dr. Alvarez is going to allow her to use a brand new "de-ironing" medication, which can be taken orally. This means 2 less "pokes" per week!!!
As long as we have luck on our side, I will most likely not have any major news until we see the doctors at MD Anderson on December 29th. Until then, we wish you all a very Merry Christmas and our heartfelt thanks for all your thoughts and prayers.
The infusion center nurses, who see Jo quite often, gave her a wonderful, handmade shawl with a poem attached that one of the nurses had composed. As I read it, I must admit, I had to hold back the tears. They really did a nice job!
We are guessing that Jo may have to get more platelets this Friday in preparation for her big trip to Texas on Saturday. Anna and Jo will spend the next two weeks in Lufkin, Texas with Jo's family. I will join them on Christmas day.
We did get one good piece of news from Dr. Alvarez today. For the past couple of months, Jo has had to get IV infusions 2 times per week to lower her iron counts, which are elevated by the frequent blood transfusions. When Jo gets back from Texas, Dr. Alvarez is going to allow her to use a brand new "de-ironing" medication, which can be taken orally. This means 2 less "pokes" per week!!!
As long as we have luck on our side, I will most likely not have any major news until we see the doctors at MD Anderson on December 29th. Until then, we wish you all a very Merry Christmas and our heartfelt thanks for all your thoughts and prayers.
Sunday, December 04, 2005
Hibernating Through the Winter
I hope everybody had a great Thanksgiving. Anna had several more Thanksgiving outfits and our digital camera is almost worn out. Thank you to Paul and Staci Giovino for having us over to their house for a wonderful Thanksgiving feast!!! And don’t worry. We did not make Anna wear the Turkey outfit to Paul and Staci’s house.
As for us, we are in hibernation mode, trying to avoid any colds or the flu. Jo had to get platelets the day before Thanksgiving and then again last Friday. Our next big doctor appointment will be December 29th at M.D. Anderson in Houston. Until then, no news is good news in regard to Jo’s health.
Our house is now going to be ready for us around the middle of January. As soon as we get back from our trip to TX for Christmas, we will begin making preparations for the move.
My mom flew back to Minnesota the day after Thanksgiving to help my father pack up their lake home for the winter and then drive back to Colorado. The week she was gone, we had a cousin of mine fly in from Minnesota to help us with Anna. Except for a trip to Arizona while Jo and I visit her family in Texas, my mom and dad will stay with us until we have some other form of help arranged.
As for us, we are in hibernation mode, trying to avoid any colds or the flu. Jo had to get platelets the day before Thanksgiving and then again last Friday. Our next big doctor appointment will be December 29th at M.D. Anderson in Houston. Until then, no news is good news in regard to Jo’s health.
Our house is now going to be ready for us around the middle of January. As soon as we get back from our trip to TX for Christmas, we will begin making preparations for the move.
My mom flew back to Minnesota the day after Thanksgiving to help my father pack up their lake home for the winter and then drive back to Colorado. The week she was gone, we had a cousin of mine fly in from Minnesota to help us with Anna. Except for a trip to Arizona while Jo and I visit her family in Texas, my mom and dad will stay with us until we have some other form of help arranged.
Tuesday, November 22, 2005
Whew! Some Great News!
Jo's tests last week proved one thing - absolutely nothing! The soft spots in the bones of her pelvis and her lower back are nothing more than just soft spots. Soft bone is not a normal condition, but it is most likely just a side effect of her Aplastic Anemia and it is expected to return to normal when Jo's bone marrow production returns to normal. The tests did show her blood production to be at about 5% of normal, which is where she has been for a long time.
All kinds of bad news could have come out of today's meeting with Dr. Alvarez and I think Jo and I both have been keeping our focus anywhere other than on the results of this test. We all sighed a collective sigh of relief when Dr. Alvarez told us the good news - all except for Anna, who was focused like a laser on finishing her bottle.
We did have a conversation with Dr. Alvarez about where we should go from here. Because Jo is feeling strong, looking good and dealing with very little pain, we decided to hold off on any major decisions until after the New Year. No offense to anybody in the medical profession, but the Holiday Season is not exactly the best time of year to get top-notch service at the hospital – you can’t really blame anybody for wanting to be home with family instead of at work.
Dr. Alvarez gave us the okay to travel to TX to see Jo’s family for Christmas, but since her niece and nephews are school-aged, he did ask Jo to wear a mask around the kids. I’m not sure how much luck I will have getting Jo to pose, but I’ll do my best to get some good pictures for the Blog.
(P.S. That last paragraph was very difficult to get through my editor. She says I’ll be finishing the basement of the new house to add another bedroom if any “mask” pictures show up on the Blog.)
All kinds of bad news could have come out of today's meeting with Dr. Alvarez and I think Jo and I both have been keeping our focus anywhere other than on the results of this test. We all sighed a collective sigh of relief when Dr. Alvarez told us the good news - all except for Anna, who was focused like a laser on finishing her bottle.
We did have a conversation with Dr. Alvarez about where we should go from here. Because Jo is feeling strong, looking good and dealing with very little pain, we decided to hold off on any major decisions until after the New Year. No offense to anybody in the medical profession, but the Holiday Season is not exactly the best time of year to get top-notch service at the hospital – you can’t really blame anybody for wanting to be home with family instead of at work.
Dr. Alvarez gave us the okay to travel to TX to see Jo’s family for Christmas, but since her niece and nephews are school-aged, he did ask Jo to wear a mask around the kids. I’m not sure how much luck I will have getting Jo to pose, but I’ll do my best to get some good pictures for the Blog.
(P.S. That last paragraph was very difficult to get through my editor. She says I’ll be finishing the basement of the new house to add another bedroom if any “mask” pictures show up on the Blog.)
Wednesday, November 16, 2005
Hey Doc! Can I Borrow Your Ball-Peen Hammer?
I took Jo to the hospital this morning at 7:15am. Since she was going to be sedated for her bone marrow biopsy, she was not allowed to drive herself to the hospital or back home. Her procedure was set to begin at 9:00am. Even thought she had gotten extra platelets yesterday, she needed more and everything was delayed.
It takes a couple of hours to have blood prepared for a transfusion, so things didn’t really get rolling until about noon. Again, today’s goal was to use a CT Scan to get a needle into a very specific spot in Jo’s hip and take a sample of the bone marrow. According to the doctor, the spot is about the size of a golf ball.
Jo was very relieved to find out she was going to be sedated. This was her fourth bone marrow biopsy and fortunately only one was without the aid of sedation. Jo said the worst (and funniest) part about today was when the nurse asked the doctor, “Are you going to need a mallet?” His response was, “No, but I will take a stepstool.”
Thank heaven for sedation. Jo remembers seeing the doctor up on the stepstool, banging away with his fist on the needle trying to get it through her bone and she remembers carrying on a conversation with him, but as for pain – nothing significant. She’s pretty sore tonight, but how could she not be? Do you remember Billy Crystal on Saturday Night Live contemplating stuffing a meat thermometer in his ear and pounding it with a ball-peen hammer? "I hate it when that happens."
The procedure took about an hour. The doctor and the nurses would push the needle in a little and then run to the other room to look at the CT scan to see if the needle was headed in the right direction. The end result was 3 half-inch long little red worms that were apparently bone marrow. The doctor seemed very proud.
The results of this test will not be given to us until sometime next week. Jo is scheduled to see Dr. Alvarez next Wednesday and I am sure we will get a full report.
Tuesday, November 15, 2005
Monday, November 14, 2005
"Gas and Go" Tomorrow
If you don't know what a "gas and go" is, find a NASCAR fan and ask them.
Tomorrow, Jo will get a platelet transfusion to get all pumped up before her bone marrow test on Wednesday. It is important that her platelet counts are high enough to avoid any excess bleeding from her test. The whole thing is a little bitter-sweet. Jo is not excited about the test, but we are all excited to get the results.
For all the Anna fans in the crowd, we have some pictures coming that will absolutely astound and amaze you all! Sometimes, even we forget that Polish children tend to develop much faster than most babies!
Tomorrow, Jo will get a platelet transfusion to get all pumped up before her bone marrow test on Wednesday. It is important that her platelet counts are high enough to avoid any excess bleeding from her test. The whole thing is a little bitter-sweet. Jo is not excited about the test, but we are all excited to get the results.
For all the Anna fans in the crowd, we have some pictures coming that will absolutely astound and amaze you all! Sometimes, even we forget that Polish children tend to develop much faster than most babies!
Tuesday, November 08, 2005
Just Another Day at the Infusion Center
Today was one of those long transfusion days - platelets and red blood cells. Overall, Jo was at Swedish for 7 hours. On the bright side, they do have nice, big, cushy chairs that recline, cable television, free lunches and really nice nurses. At the infusion center, Anna's picture is posted on the bulletin board and all the nurses call her the Million Dollar Baby. Many of these nurses have been seeing Jo regularly since last November.
Now we wait. A week from tomorrow, Jo is scheduled for her "directed" bone marrow biopsy to try to explain her MRI results and to see if there has been any change in her bone marrow since the last biopsy.
Anna has been working on Cha-Cha, Salsa and Cuban Motion in her daily dance lessons. When I looked in her diaper this evening and saw what I thought was guacamole, I thought that she had maybe made a trip south of the border for some cooking lessons too. Ay Caramba!
Now we wait. A week from tomorrow, Jo is scheduled for her "directed" bone marrow biopsy to try to explain her MRI results and to see if there has been any change in her bone marrow since the last biopsy.
Anna has been working on Cha-Cha, Salsa and Cuban Motion in her daily dance lessons. When I looked in her diaper this evening and saw what I thought was guacamole, I thought that she had maybe made a trip south of the border for some cooking lessons too. Ay Caramba!
Sunday, November 06, 2005
Thursday, November 03, 2005
A Six Poke Day
That's right. Six pokes to get the blood sample and to administer Jo's de-ironing IV medication. Normally, Jo's veins are great and the nurses have no problem starting the IVs, but today wasn't normal. The nurses told Jo she needs to drink more water, but don't we all?
Jo's platelet count was 15,000 and Dr. Alvarez is letting her wait until Monday to get a transfusion - Yippee! This will be Jo's first time to go two weeks without a transfusion since well before the baby was born.
On a lighter note, we had dinner tonight with two F-16 fighter pilots, both from my graduating class at the Air Force Academy. For anyone who wishes they could be a fighter pilot, just imagine flying a 12 hour sortie in a one man cockpit in the middle of the night over Iraq, eating candy bars and talking to anybody on the ground you can find in order to stay awake.
Jo's platelet count was 15,000 and Dr. Alvarez is letting her wait until Monday to get a transfusion - Yippee! This will be Jo's first time to go two weeks without a transfusion since well before the baby was born.
On a lighter note, we had dinner tonight with two F-16 fighter pilots, both from my graduating class at the Air Force Academy. For anyone who wishes they could be a fighter pilot, just imagine flying a 12 hour sortie in a one man cockpit in the middle of the night over Iraq, eating candy bars and talking to anybody on the ground you can find in order to stay awake.
Monday, October 31, 2005
The Waiting Game...
Today, we had a very interesting trip to the doctor's office. The entire professional building was in costume, even Dr. Alvarez! We saw Winnie the Pooh, a dalmation, a bumble bee, a disco diva and a bicyle rider who had just had a bloody run in with a tree.
Dr. Alvarez is still very optimistic. We have known for a long time that Dr. Alvarez is not a fan of Bone Marrow Transplants, unless absolutely necessary. He wants to give Jo every chance to recover on her own and he really believes that he sees small indications that her counts are improving and she is becoming less dependent on transfusions. The real question is how long do we wait?
Right now, the plan is to wait 4 more weeks, until November 28th. This will give Jo a good strong 6+ weeks since stopping her breastfeeding. At that point, if she is getting worse, we will schedule a Bone Marrow Transplant – probably in the middle of December. If Jo appears to be staying the same or getting better, then we have to reevaluate the plan.
Although it would be awesome to eventually have a natural recovery, continuing to wait brings more and more potential complications – cold and flu season (Jo’s counts are not high enough to get a flu shot and Dr. Alvarez wants her to avoid getting a cold if any way possible), iron overload from the transfusions and other difficulties that can come from ongoing transfusions.
On November 16th, Jo will have another bone marrow biopsy. She has had 3 already (one in Denver, one at the NIH and one at MD Anderson), and all 3 have shown similar results. A couple of weeks ago, Jo’s MRI showed some very soft areas of bone in her pelvis and her lower spine and this biopsy will be a very directed attempt to get some bone marrow from one of these isolated areas in an attempt to explain the MRI results.
Jo’s platelet count was 37,000 today and her last transfusion was one week ago. She normally gets transfused when they drop below 10,000 (normal is 150,000 to 450,000). If she makes it until next Monday before she gets another transfusion, it will be her first 2-week stretch between transfusions since having the baby. Jo’s level of transfusion dependency appears to be one of the primary factors that Dr. Alvarez watches.
Wednesday, October 26, 2005
New Digs - No More Stairs
The big, big, biggedy big news is now official. After living for 2 weeks as a guest in our own home (in the main floor guestroom), I no longer like the stairs and I think it is time to get a new home. Why is it that I can ride the Stairmaster at the gym for 30 minutes, but one trip up the stairs in our home and I have to sit down and catch my breath?
We hit the pavement hard last weekend and we have found a wonderful ranch floor plan that will allow us to have our “real” bedroom, the baby’s room, the washer/dryer and our home office all on one level. Most importantly, Jo will be able to go back to a fairly normal daily routine without having to worry about the stairs. Jo’s actually most excited about being able to once again peek in on Anna when she is sleeping.
We will close around December 12th, so stay tuned for information on moving day!
Tuesday, October 25, 2005
Preventative Medicine for Little Anna
Although Anna is 100% healthy today, there is some concern about her blood and our little baby has been prescribed daily preventative medication. Jo has become worried about the Polish nature of Anna's blood running through her little veins. To combat the negative effects of Polish blood on dance ability, Anna has been enrolled in her first dance class.
Every day, Jo sits with Anna in her lap and the radio turned up high. (Jammin' 92.5, I'm sure) Anna is currently learning to march in time to the music and to do basic steps like a kick-ball-change. I have not personally witnessed these dance lessons, but as far as I can tell, Anna's favorite step is the one where she pulls her leg up against her chest and sticks her toes in her mouth.
I asked Jo when I can start to teach Anna the Polish Polka, but I haven't gotten an answer yet.
Every day, Jo sits with Anna in her lap and the radio turned up high. (Jammin' 92.5, I'm sure) Anna is currently learning to march in time to the music and to do basic steps like a kick-ball-change. I have not personally witnessed these dance lessons, but as far as I can tell, Anna's favorite step is the one where she pulls her leg up against her chest and sticks her toes in her mouth.
I asked Jo when I can start to teach Anna the Polish Polka, but I haven't gotten an answer yet.
Monday, October 24, 2005
Low Counts, a Lot Less Pain and a Little Tease
Jo's blood counts were still okay today, but her platelet count was at 10,000. Tomorrow she will have to go to Swedish to get a platelet transfusion. Dr. Alvarez also put her on a low iron diet because her iron levels are getting too high due to the red blood cell transfusions.
On the bright side, Jo is getting very good with her crutches and I am not afraid to whip out the handicap placard everywhere we go and park right in the front row! On Saturday, we went to the grocery store and I even worked up the courage to ask for a key to one of the little motorized shopping carts. I was quite disappointed in the power and I was barely able to catch Jo as she cruised around on her crutches. She liked the little cart enough that I am worried about her giving it up after her hips are better.
The crutches are doing their job. Jo had almost no hip pain at all today. Now, that doesn't mean that the problem is gone. It just means that she is doing a great job of keeping the weight off her hips and giving them a chance to rest.
Last, but not least, we've got some big, big, biggety news coming later this week! Stay tuned! (Just like watching Desperate Housewives, eh?)
On the bright side, Jo is getting very good with her crutches and I am not afraid to whip out the handicap placard everywhere we go and park right in the front row! On Saturday, we went to the grocery store and I even worked up the courage to ask for a key to one of the little motorized shopping carts. I was quite disappointed in the power and I was barely able to catch Jo as she cruised around on her crutches. She liked the little cart enough that I am worried about her giving it up after her hips are better.
The crutches are doing their job. Jo had almost no hip pain at all today. Now, that doesn't mean that the problem is gone. It just means that she is doing a great job of keeping the weight off her hips and giving them a chance to rest.
Last, but not least, we've got some big, big, biggety news coming later this week! Stay tuned! (Just like watching Desperate Housewives, eh?)
Friday, October 21, 2005
A Little Taste of the Orient
Today was the first day in over a week that Jo didn't have to go to see a doctor. She got to spend all day at home with Anna (and my mom). The highlight of the day was reading a bit of Winnie the Pooh and doing Tummy Time.
We also got to have a little Chinese food at the house of our good friends, Eddie and Wendy Moy - The Annual Harvest Moon Party. We got to see a bunch of friends that we haven't seen in a while and everybody got to meet Anna. We just want all of you to know how much we love and appreciate you all!
Jo's next CBC (Complete Blood Count) - Monday, October 24th.
We also got to have a little Chinese food at the house of our good friends, Eddie and Wendy Moy - The Annual Harvest Moon Party. We got to see a bunch of friends that we haven't seen in a while and everybody got to meet Anna. We just want all of you to know how much we love and appreciate you all!
Jo's next CBC (Complete Blood Count) - Monday, October 24th.
Thursday, October 20, 2005
A Second Opinion on Jo's Hips and...Good Blood Counts!
Today we went to see another Orthopedic Surgeon, Tom Thomas at Swedish Medical Center. Dr. Thomas is a friend of Dr. Alvarez and he came into the office as soon as he got back from a hunting trip just to see Jo. The information was very similar to what we got yesterday, but Dr. Thomas was a little less optimistic. He feels that surgery is not at all an option until Jo’s blood condition is resolved, and even then, surgery would most likely only be possible on Jo’s left hip, which has not collapsed at all yet. The collapse in her right hip, even as minor as it is right now, would make surgery on that hip too risky.
Dr. Thomas explained to us that right now, the bone is dying and dead bone is hard. When the bone begins to grow back, the new bone will be soft and spongy and it will actually provide more opportunity for a collapse.
Overall, our visit was good. Dr. Thomas believes that Jo may need to be on crutches for a while (I thought he said 2 years – Jo says she heard “for a while”) to keep the weight off her hips until the bone has completely grown back. Even then, he feels that the collapse in the right hip will result in Jo needing a complete hip replacement at some point in time. When this could happen is a tough guess, but he feels confident that Jo will outlive her hip. Right now, the focus needs to be on minimizing any more possible damage.
Now for the good news! Jo’s blood counts are still very low, but they are actually higher than they have been in a long time. He white blood cell counts were dangerously low after she had an infection last week, but they have climbed back up to what we have been used to over the past year.
There is still a chance that Jo’s Aplastic Anemia is associated to her pregnancy. She stopped breastfeeding just over a week ago and her body is slowly returning to a true pre-pregnancy state. The doctors in Houston want us to wait 4 to 6 weeks to see if there is any recovery once the pregnancy and breastfeeding is completely over. Keep your fingers crossed!
Dr. Thomas explained to us that right now, the bone is dying and dead bone is hard. When the bone begins to grow back, the new bone will be soft and spongy and it will actually provide more opportunity for a collapse.
Overall, our visit was good. Dr. Thomas believes that Jo may need to be on crutches for a while (I thought he said 2 years – Jo says she heard “for a while”) to keep the weight off her hips until the bone has completely grown back. Even then, he feels that the collapse in the right hip will result in Jo needing a complete hip replacement at some point in time. When this could happen is a tough guess, but he feels confident that Jo will outlive her hip. Right now, the focus needs to be on minimizing any more possible damage.
Now for the good news! Jo’s blood counts are still very low, but they are actually higher than they have been in a long time. He white blood cell counts were dangerously low after she had an infection last week, but they have climbed back up to what we have been used to over the past year.
There is still a chance that Jo’s Aplastic Anemia is associated to her pregnancy. She stopped breastfeeding just over a week ago and her body is slowly returning to a true pre-pregnancy state. The doctors in Houston want us to wait 4 to 6 weeks to see if there is any recovery once the pregnancy and breastfeeding is completely over. Keep your fingers crossed!
Wednesday, October 19, 2005
Some Background - Part IV - Throw Your Hips Into It
About 2 to 4 weeks after the baby was born, Jo developed some pain in both hips. The pain was enough to make walking uncomfortable and dancing impossible. For several months, the pain gradually got a little worse. Initially her doctors thought she might have tendonitis, so Jo started some physical therapy.
About 2 weeks ago (early October), Dr. Alvarez decided to run some tests on the bones in her hips and we received some more frightening news. Jo’s bones in her hips were deteriorating and she was at risk of having her hips collapse.
TODAY (enough background already, eh?), we saw Dr. Ted Parks, an orthopedic surgeon at Presbyterian St. Luke’s downtown. Once again, we found that when you get to meet with a specialist, they are able to make things very “matter of fact” and overall, it is very calming.
Dr. Parks explained to us that Jo has a disease called Avascular Necrosis. What this means is that the bone inside the ball joint of the hip socket is dying. Eventually, Jo will be left with hollow eggshells as ball joints in her hips. This condition was most likely caused by the steroids Jo was prescribed, and took for a couple of weeks last year when her anemia was first discovered.
The good news is that the disease will eventually run its course by destroying all of the bone in the ball joint (femoral head), and then the bone will grow back. The disease basically runs out of bone to kill and then it goes away. The problem is that without healthy bone inside the ball of the hip, Jo is at risk of the ball in either or both hips collapsing. Actually, Jo does have one very small bit of collapse in one of her hips already.
What the doctor would like to do is a procedure called a “core decompression” where he would drill a pencil sized hole through her hip and into the ball of the hip. This decompression has a 66% chance of halting the disease in its tracks and allowing the bone rebuilding process to start.
Once again, the problem – Jo’s blood counts could very possibly be way to low for any type of surgery. Actually, Dr. Parks wants to go over this possibility in detail with Dr. Alvarez. If surgery is not an option, then Jo must let the disease run its course. She would be at a very high risk of further collapse in the hip, which would result in a much shorter life span of her natural hip. If the bone collapses, it loses its nice, natural shape and causes the cartilage to be worn away quicker than normal. Once the cartilage is gone, she would have bone against bone in her hip and then a hip replacement would take place.
Tomorrow, we will see another orthopedic surgeon. For now, Jo must use crutches to keep as much weight as possible off her hips. My mom and I have also banned Jo from using the stairs in the house. Jo and I have moved to the guest bedroom on the main floor and put mom in the master bedroom upstairs. We must also keep Jo from picking up the baby and walking around. For the most part, we want Jo sitting down and then we bring Anna to her. We have a unique opportunity right now. Jo has had minimal hip collapse and if we can keep the eggshells from breaking, eventually the bone will grow back. Sometimes it feels like we are going overboard, but then we remind ourselves that this is our only chance to save Jo’s natural hips.
When we found out the severity of Jo’s hip problems, we immediately asked my mom to fly out from Minnesota. She has been her a week already and I don’t know what we would do without her right now. Jo has been out of the house at least 5 or 6 hours per day with various doctor appointments each of the past 7 days. My mom is a “schedule” person and little Anna is finding that out in a hurry. Babies respond very well to schedules I have found. Anna has slept about 11 hours each of the past 5 or 6 nights and she is sleeping more and more during the day. There is nothing better in the morning that a baby girl who has just slept 11 hours!
About 2 weeks ago (early October), Dr. Alvarez decided to run some tests on the bones in her hips and we received some more frightening news. Jo’s bones in her hips were deteriorating and she was at risk of having her hips collapse.
TODAY (enough background already, eh?), we saw Dr. Ted Parks, an orthopedic surgeon at Presbyterian St. Luke’s downtown. Once again, we found that when you get to meet with a specialist, they are able to make things very “matter of fact” and overall, it is very calming.
Dr. Parks explained to us that Jo has a disease called Avascular Necrosis. What this means is that the bone inside the ball joint of the hip socket is dying. Eventually, Jo will be left with hollow eggshells as ball joints in her hips. This condition was most likely caused by the steroids Jo was prescribed, and took for a couple of weeks last year when her anemia was first discovered.
The good news is that the disease will eventually run its course by destroying all of the bone in the ball joint (femoral head), and then the bone will grow back. The disease basically runs out of bone to kill and then it goes away. The problem is that without healthy bone inside the ball of the hip, Jo is at risk of the ball in either or both hips collapsing. Actually, Jo does have one very small bit of collapse in one of her hips already.
What the doctor would like to do is a procedure called a “core decompression” where he would drill a pencil sized hole through her hip and into the ball of the hip. This decompression has a 66% chance of halting the disease in its tracks and allowing the bone rebuilding process to start.
Once again, the problem – Jo’s blood counts could very possibly be way to low for any type of surgery. Actually, Dr. Parks wants to go over this possibility in detail with Dr. Alvarez. If surgery is not an option, then Jo must let the disease run its course. She would be at a very high risk of further collapse in the hip, which would result in a much shorter life span of her natural hip. If the bone collapses, it loses its nice, natural shape and causes the cartilage to be worn away quicker than normal. Once the cartilage is gone, she would have bone against bone in her hip and then a hip replacement would take place.
Tomorrow, we will see another orthopedic surgeon. For now, Jo must use crutches to keep as much weight as possible off her hips. My mom and I have also banned Jo from using the stairs in the house. Jo and I have moved to the guest bedroom on the main floor and put mom in the master bedroom upstairs. We must also keep Jo from picking up the baby and walking around. For the most part, we want Jo sitting down and then we bring Anna to her. We have a unique opportunity right now. Jo has had minimal hip collapse and if we can keep the eggshells from breaking, eventually the bone will grow back. Sometimes it feels like we are going overboard, but then we remind ourselves that this is our only chance to save Jo’s natural hips.
When we found out the severity of Jo’s hip problems, we immediately asked my mom to fly out from Minnesota. She has been her a week already and I don’t know what we would do without her right now. Jo has been out of the house at least 5 or 6 hours per day with various doctor appointments each of the past 7 days. My mom is a “schedule” person and little Anna is finding that out in a hurry. Babies respond very well to schedules I have found. Anna has slept about 11 hours each of the past 5 or 6 nights and she is sleeping more and more during the day. There is nothing better in the morning that a baby girl who has just slept 11 hours!
Tuesday, October 18, 2005
Some Background - Part III - The Birth of Anna Claire
In March, 2005, Jo and I traveled to MD Anderson in Houston, TX to see the bone marrow specialists there. We met with Dr. Anderlini, who gave us some more good information on treatment options. Dr. Alvarez suggested that we visit MD Anderson because they do more Bone Marrow Transplants each year than any other hospital in the U.S. He also emphasized that a Bone Marrow Transplant is a 100-day marathon and to be in an area close to family could be very beneficial.
Overall, our trip was very informative and somewhat calming. It was also an opportunity to visit Jo's family in Lufkin and give them the pleasure of seeing Jo's ever expanding belly! (She did look quite radiant throughout her entire pregnancy.)
As we got closer and closer to Jo's due date, our planning became more and more intense. Jo's mom came to Denver a month before our baby was due to help Jo prepare. Dr. Alvarez and Jo's OB, Dr. Ross, made plans and contingency plans for the delivery. Jo was going to get blood transfusions on June 20th and then have labor induced. Dr. Alvarez didn't hold back when he told us how worried he was about the actual delivery.
Well, everybody was on board with the plan, except the baby! At 3am on the morning of June 17th, Jo woke me up and told me she was having some stomach cramps. Hoping they would go away so that I could go back to sleep, I told her to wait a few minutes and see if they got better. No such luck! By 5am, we had the car packed up (with a month's worth of supplies) and we were off to the hospital.
At the hospital, Jo immediately started getting blood and platelet transfusions. The contractions gradually got more intense as the day went on. Jo did not really have the option of an epidural because of the risk of excess bleeding.
Once again, I obtained a new level of respect for Jo. During each contraction, she would grab the bed rails and just shake. Fortunately, she was able to have a little morphine, which allowed her to sleep between contractions. We had taken classes for natural (unmedicated) childbirth and we had learned all kinds of cool relaxation techniques and breathing exercises with me as the coach. When it came right down to it, Jo slept between contractions and when she did have a contraction she (politely requested) that I don't touch her, breath on her, talk to her or eat anything anywhere close enough that she could smell it! So much for being a coach.
We were supposed to start "pushing" at 3pm. I was sent on one last errand to the car. On my way to the car, I ran into a mortgage client of mine in the hallway and that delayed me a few minutes. On my way back from the car, I ran into our friend Huong Hoang who is a PA at the hospital, again delaying my return. By the time I got back to the room, the nurse was chewing me out for taking so long.
At 4:17pm, Anna Claire Szymanski was born (6 lbs., 11 oz.) and things could not have gone better - Dr. Ross and Dr. Alvarez were both plenty relieved. Anna came out Viking Purple, but she quickly turned a beautiful shade of pink. It was an amazing experience; much more than I think either one of us ever expected!
Two days later, we brought Anna home on Father's Day and we immediately started wondering how we could survive without the nurses. My mom joined us in Denver that weekend and she stayed with us a month. With Jo having almost daily doctor appointments, we couldn't have made it through that first month without both of the grandmas around!
Overall, our trip was very informative and somewhat calming. It was also an opportunity to visit Jo's family in Lufkin and give them the pleasure of seeing Jo's ever expanding belly! (She did look quite radiant throughout her entire pregnancy.)
As we got closer and closer to Jo's due date, our planning became more and more intense. Jo's mom came to Denver a month before our baby was due to help Jo prepare. Dr. Alvarez and Jo's OB, Dr. Ross, made plans and contingency plans for the delivery. Jo was going to get blood transfusions on June 20th and then have labor induced. Dr. Alvarez didn't hold back when he told us how worried he was about the actual delivery.
Well, everybody was on board with the plan, except the baby! At 3am on the morning of June 17th, Jo woke me up and told me she was having some stomach cramps. Hoping they would go away so that I could go back to sleep, I told her to wait a few minutes and see if they got better. No such luck! By 5am, we had the car packed up (with a month's worth of supplies) and we were off to the hospital.
At the hospital, Jo immediately started getting blood and platelet transfusions. The contractions gradually got more intense as the day went on. Jo did not really have the option of an epidural because of the risk of excess bleeding.
Once again, I obtained a new level of respect for Jo. During each contraction, she would grab the bed rails and just shake. Fortunately, she was able to have a little morphine, which allowed her to sleep between contractions. We had taken classes for natural (unmedicated) childbirth and we had learned all kinds of cool relaxation techniques and breathing exercises with me as the coach. When it came right down to it, Jo slept between contractions and when she did have a contraction she (politely requested) that I don't touch her, breath on her, talk to her or eat anything anywhere close enough that she could smell it! So much for being a coach.
We were supposed to start "pushing" at 3pm. I was sent on one last errand to the car. On my way to the car, I ran into a mortgage client of mine in the hallway and that delayed me a few minutes. On my way back from the car, I ran into our friend Huong Hoang who is a PA at the hospital, again delaying my return. By the time I got back to the room, the nurse was chewing me out for taking so long.
At 4:17pm, Anna Claire Szymanski was born (6 lbs., 11 oz.) and things could not have gone better - Dr. Ross and Dr. Alvarez were both plenty relieved. Anna came out Viking Purple, but she quickly turned a beautiful shade of pink. It was an amazing experience; much more than I think either one of us ever expected!
Two days later, we brought Anna home on Father's Day and we immediately started wondering how we could survive without the nurses. My mom joined us in Denver that weekend and she stayed with us a month. With Jo having almost daily doctor appointments, we couldn't have made it through that first month without both of the grandmas around!
Monday, October 17, 2005
Some Background - Part II - Our Trip to the NIH
On the Monday after Thanksgiving, Jo and I flew to the NIH in Bethesda, MD where some of the best doctors in the world perform government-sponsored research. There we met with Dr. Sloand, a tiny little lady with a big punch.
Dr. Sloand wanted to take her own sample of Jo’s bone marrow. She brought both of us back to a little room with two nurses who really didn’t want to look us in the eye. Jo got up on the table and rolled over onto her side. Dr. Sloand put a little numbing medication on her hip and then pulled out the biggest needle I have ever seen in my life. She proceeded to push the needle through Jo’s hipbone so that she could get a marrow sample. I still am not exactly sure why they didn’t have me wait in the lobby.
As I said, Dr. Sloan is not a very big woman, but she knew a lot about leverage. She had one foot up against the wall and she was really leaning into that needle. I always knew that Jo had an incredibly high pain threshold and I have never seen her whine or complain, but at that moment, my respect for her went to a whole new level!
We spent the rest of the afternoon talking to Dr. Sloand and one other doctor about Aplastic Anemia and Bone Marrow Transplants. They both spoke about everything in a very “matter of fact” way. In a way, it was actually very calming. They told us that almost everybody in the waiting room was recovering from Aplastic Anemia. None of them looked all too bad.
Dr. Sloand gave us a ton of great information, but then she sent us home. She said that nothing could be done until the pregnancy was over. She told Jo that she could stop taking the steroids and other medications since they wouldn’t help.
The next day things got a little more interesting than we had expected. We got back to the airport in D.C. and checked in for our flight to Denver. As we came up on the security checkpoint, I lost track of Jo. I quickly looked around for her and I saw her back at the entrance to the security line, holding on to a post, looking like she was going to faint. I went over to her and put my arms around her and she immediately collapsed. I’m normally a pretty calm and stable guy, but as I started looking around for help, it seemed like every single person in an airport uniform just happened to be looking the other direction. I remember this being one of the scariest moments of my entire life.
I got Jo to her knees and she collapsed again. I got her to the ground and put her head on her travel pillow. She was out cold! By then the airport personnel were swarming and calling for the paramedics. By the time the paramedics got to us, Jo was already feeling a little better. They checked her over for about 15 minutes, had us sign a release, got us a wheelchair and sent us on our way. The airport people were nice enough to put Jo up in first class with a nice meal and by the time we got home she felt much better.
We learned a valuable lesson in D.C. – you must ease yourself off steroids or you’ll end up on the airport floor wondering where you are and how you got there.
Over the next several months, we settled into a routine. Jo got her blood checked twice weekly and received platelet and red blood cell transfusions every 10 days or so. The primary concern was that if her counts got too low, the baby may not get enough oxygen to develop normally or Jo would possibly start bleeding internally.
Back in Denver, Jo continued to teach dance lessons and other than lots of doctor appointments, we tried to live our lives as normal as possible. All things considered, the pregnancy was about as easy as it gets. Jo never had a single day of morning sickness and I never got sent on any midnight runs for ice cream or KFC. Jo did mention that at one point she had Jamba Juice 5 days in a row, but I don’t think that qualifies as a craving. Who wouldn’t want Jamba Juice 5 days in a row?
Dr. Sloand wanted to take her own sample of Jo’s bone marrow. She brought both of us back to a little room with two nurses who really didn’t want to look us in the eye. Jo got up on the table and rolled over onto her side. Dr. Sloand put a little numbing medication on her hip and then pulled out the biggest needle I have ever seen in my life. She proceeded to push the needle through Jo’s hipbone so that she could get a marrow sample. I still am not exactly sure why they didn’t have me wait in the lobby.
As I said, Dr. Sloan is not a very big woman, but she knew a lot about leverage. She had one foot up against the wall and she was really leaning into that needle. I always knew that Jo had an incredibly high pain threshold and I have never seen her whine or complain, but at that moment, my respect for her went to a whole new level!
We spent the rest of the afternoon talking to Dr. Sloand and one other doctor about Aplastic Anemia and Bone Marrow Transplants. They both spoke about everything in a very “matter of fact” way. In a way, it was actually very calming. They told us that almost everybody in the waiting room was recovering from Aplastic Anemia. None of them looked all too bad.
Dr. Sloand gave us a ton of great information, but then she sent us home. She said that nothing could be done until the pregnancy was over. She told Jo that she could stop taking the steroids and other medications since they wouldn’t help.
The next day things got a little more interesting than we had expected. We got back to the airport in D.C. and checked in for our flight to Denver. As we came up on the security checkpoint, I lost track of Jo. I quickly looked around for her and I saw her back at the entrance to the security line, holding on to a post, looking like she was going to faint. I went over to her and put my arms around her and she immediately collapsed. I’m normally a pretty calm and stable guy, but as I started looking around for help, it seemed like every single person in an airport uniform just happened to be looking the other direction. I remember this being one of the scariest moments of my entire life.
I got Jo to her knees and she collapsed again. I got her to the ground and put her head on her travel pillow. She was out cold! By then the airport personnel were swarming and calling for the paramedics. By the time the paramedics got to us, Jo was already feeling a little better. They checked her over for about 15 minutes, had us sign a release, got us a wheelchair and sent us on our way. The airport people were nice enough to put Jo up in first class with a nice meal and by the time we got home she felt much better.
We learned a valuable lesson in D.C. – you must ease yourself off steroids or you’ll end up on the airport floor wondering where you are and how you got there.
Over the next several months, we settled into a routine. Jo got her blood checked twice weekly and received platelet and red blood cell transfusions every 10 days or so. The primary concern was that if her counts got too low, the baby may not get enough oxygen to develop normally or Jo would possibly start bleeding internally.
Back in Denver, Jo continued to teach dance lessons and other than lots of doctor appointments, we tried to live our lives as normal as possible. All things considered, the pregnancy was about as easy as it gets. Jo never had a single day of morning sickness and I never got sent on any midnight runs for ice cream or KFC. Jo did mention that at one point she had Jamba Juice 5 days in a row, but I don’t think that qualifies as a craving. Who wouldn’t want Jamba Juice 5 days in a row?
Sunday, October 16, 2005
Some Background - Part I - It All Begins
On November 15, 2004, Jo went to her OB for her 8-week pregnancy checkup. She was pretty sure she was pregnant and we were very excited to have it confirmed. As a routine part of that checkup, her blood counts were checked and, to our surprise, they came back critically low. Her platelet count was 31,000 – normal is anywhere from 150,000 to 450,000. Her red blood cell counts and white blood cell counts were also very low, but the platelets were the primary concern. Jo knew she had felt winded and tired, but she felt it was just a normal part of being pregnant.
Jo was immediately put in touch with Dr. Raul Alvarez, a hematologist in Highlands Ranch, CO. Dr. Alvarez began running tests and giving her all the normal medications for somebody that is anemic. On November 21st, Dr. Alvarez had Jo checked into Swedish Medical Center where she spent a full week over the Thanksgiving Holiday. (I did manage to sneak her in some very nice Thanksgiving deserts, compliments of our close friends, Thuy Nguyen and Huong Hoang.)
On November 24th, Jo’s platelets had dropped to 13,000 and she received her first blood transfusion. We still didn’t know what was really going on or how it would affect the pregnancy. Dr. Alvarez had requested that I come to meet with him and Jo on at least 2 or 3 different occasions. He seemed as scared as we were. He very slowly and methodically explained to us what was going on and the severity of the problem.
Aplastic Anemia is a very rare blood disorder where the bone marrow fails – usually for no known reason. We have found some very sparse data that suggests that pregnancy can cause Aplastic Anemia, but there will never be any way to know for sure if this is the case for Jo.
Jo does want me to mention that she had a bone marrow biopsy while at Swedish. Since she was admitted as a patient (and things were slow over Thanksgiving), they sedated her for the procedure (sticking a long needle into her hip bone to extract some bone marrow) and things went pretty smooth – this will be important when you hear about the next bone marrow biopsy.
The results of the biopsy were not good. Dr. Alvarez drew some diagrams for us showing how Jo’s bone marrow was working at about 5% of normal. He again emphasized how serious this was and requested that we go to Washington, D.C. to visit the specialists at the National Institutes of Health (NIH).
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