The best part about Dr. Alvarez's Halloween costume is that it will also work next month for Thanksgiving!!!
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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