Prison Break

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

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

Entering the Home Stretch

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

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

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

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

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

All is Quiet on the Eastern Front

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

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

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

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

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

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

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

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

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

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

Another Tough Night

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

ATG Part 4 of 4

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

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

ATG Part 3 of 4

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

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

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

Dr. Childs and Some Statistics

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

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

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

ATG Part 2 of 4

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

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

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

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

ATG Part 1 of 4

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

"PICC" a Peck of Pickled Peppers?

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

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

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

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

We Arrive at the NIH

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

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

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

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

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

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

Plans for the NIH

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

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

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

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

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

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

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

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