Thursday

Day 125 (D -13)

I' m sorry that I've been out of the loop for the last few days, but I've been feeling out of sorts and appointments have kept us running. Tuesday night I had a little scare and had to be taken to the emergency room. This one was a real winner. I'd had my catheter replaced that afternoon and for the most part, everything went off well. The nurse that inserted the new catheter had problems with blood return on it and started getting a little agitated. It's important that you're able to draw blood from the line because it shows that the catheter has been place correctly among other reasons. After several trys, she was finally able to draw blood out of my lumens. I was also prescribed a magnesium intermate the same day and it was the largest amount of magnesium that I've been prescribed in one sitting. Well, Chris hooked me up when we got back to the apartment and as the night progressed, I kept feeling pressure building up on my chest. It was an unusual feeling. I could feel the tube inside my chest pressing against my skin while simultaneously, I could feel this intense pressure under my bandage. It was close to midnight when I finally looked at my bandage and I could see that there was an area all around the gauze under the bandage that looked like it had stretched away from my chest and when I poked it, it felt liquid. My natural conclusion was that the magnesium had backed out of the incision in my chest and was trapped by the tegaderm bandage.

I told Chris and we rushed to the emergency room at MD Anderson. We waited for an hour before we were admitted to a room. Here's my favorite part. I'm worked up about what's going on because the line leads directly into my heart and I'm exhausted because it's late and I haven't been getting more than 5 hours of sleep a night, so I'm more than a little cranky. When the doctor comes in to examine me, I'm ready to snap. He asks me what's going on and when I tell him he immediately puts both hands on my bandage and pulls. I'm freaked out because I'm thinking that there's pressure built up in my chest, not to mention the fluid that's already leaked under the bandage. As soon as the doctor pulled the bandage half off, the pressure released and I felt better immediately. There was no liquid and the catheter was fine. It turns out that the bandage was put on too tight and that was causing the feeling of pressure on my heart. The doctor looked at me like I was crazy and asked me if I was satisfied that that was the cause. I think I get a pass on this one since he's going to charge me a fortune for what literally amounts to ripping off a band-aid.

We didn't get home until after 2am and even then, we didn't get to bed until around 3, since Chris had to change the bandage that the nurse put on. It was pretty slap-dash. Chris did a great job, though.

So, I'm a few days out of being admitted to the hospital. I'm not looking forward to being in lock down for thirty days or more. I know it's something that I have to do and I'm slowly wrapping my head around it. It's strange to think that I'll be a newborn next Wednesday. My new immune system won't be acclimated to the world at large and I'll have to be incredibly careful. As the day gets closer, I get more anxious.

Bicycle! Bicycle!

Day 124 ( D - 14)

Ann has been talking to several BMT and CBT survivors lately and after making a comparison between their stories they have one thing in common...excercise. It seems that the survivors that had the quickest recovery spent a good portion of their time post transplant doing some sort of exercise routine to build their strength up as quickly as possible. It also turns out that while in the hospital transplant patients are "encouraged" quite strongly to walk around as much as possible.

Exercise inside the hospital is no problem. Its a protected environment, with lots of professionals on site if something goes wrong. But what about post transplant? Walking is OK, but doing so at our apartment complex is asking for trouble that we certainly don't need. The solution is the stationary bike that we got. It allows Ann to get a workout, at her own pace, in the relatively safe environment of the apartment.

Today Ann did about 4 miles on her new bike in about 45 minutes. She was really proud of her accomplishment and I was thrilled with her effort. Considering the amount of muscle atrophy that she has suffered over the past 124 days, she really had to set her mind to the achievement.

Tomorrow Ann has her 11th Lumbar Puncture. I think the stem cell clinic is doing it just to be on the safe side considering all of Ann's other LPs have come back clean. However, it means that Ann will get a big'ol bag of Ativan and then it will be nap time. Its hard to believe that Ann has 4 days before the mobilization chemo begins.

More tomorrow

Overtime

Day 123 (D - 15)

Sorry we have been out of touch with everyone for the past few days, but MDA has cranked the dial to 11. Just about every day has started before 6 in the morning and ended after 7 at night.

Before I get on to the details of test results and appointments, I do have something pretty cool to share with everyone. Ann's eyebrows are growing back (as you can tell from the photographic evidence). She lost them about two weeks ago, but now they are starting to grow back with the texture of a newborn's hair. Even though facial hair has nothing to do with leukemia, I like to think it is a small improvement that marks the apogee of our time here.

Ok onto medical stuff. Today we had another appointment with Dr. Alousi and he told us that the total number of CD34+ cells harvested during apheresis was 3.8 Million. Thats short of the 5 Million target, but he said that was enough for them to work with. Ann's stem cells will now go through a gene threapy treatment. They will then be mixed with mouse antibodies that have been "trained" to attack cancer cells. The idea is that they will filter out any remaining cancer cells in the harvested cells and, those same cells will form a "life boat" if the cells from the umbilical cords don't engraft correctly.

We had some pretty good news too. The pathology results for Ann's last bone marrow biopsy came back. The number of blast cells in her marrow were 1% out of 400 cells sampled, the normal range is between 1 and 5%. The 1% number is good, because it means that she is still in remission. What is better is that the pathologist didn't detect any traces of leukemia in the sample, or to put it another way the sample showed "no evidence of residual disease".

So this puts Ann in a pretty good position going into the transplant. I t does not speak to how easy her leukemia will be to eradicate with the mobilization chemo. Or necessarily how much trouble her new bone marrow will have in locating and killing off any thing that survives mobilization. Although the thinking is that the less evidence of leukemia there is prior to transplant and if there is some GVHD then there is less of a chance that the cancer will be able survive post transplant.

Ann also had to see the Ophthalmologist Dr. Kim today. Interesting side note: Dr. Kim attended high school in the magnet program at Baton Rouge High. It's a small world. Anyway, Dr. Kim checks all the allogeneic transplant patients over prior to transplant. Mostly to evaluate them before any optical GVHD occurs so it is clear exactly how bad it is and how it should be treated. Dr. Kim's conclusion after looking Ann's baby browns over is that her tear production is below normal and she should watch out for side effects like what she had with Cytarabine, but they are otherwise looking good.

We also passed the last sign post on the road to the CBT today. Ann got her apheresis double lumen CVC swapped out with a new triple lumen CVC. The triple lumen CVC is used for transplant patients here at MDA so that blood products, cells and medicine can be administered all at the same time. The good news is that is didn't hurt and Ann sailed through the procedure. The bad news is that this CVC is as large as or larger than the double lumen. At least she only has to have it for the next 4 months.

Jambalaya

Day 120 (D - 18)

Thank you Lawrence, Edith, and Josh D. and everyone involved in the jambalaya fundraiser. You guys are amazing! I know it took a lot of time, effort, and hard work. Chris and I really appreciate it and love you guys. Josh, you know it's true love when you let a girl paint your nose red. :)

Today we had an early blood draw and apheresis. I must say that I'm a little disappointed that the number of stem cells they're able to collect from me continues to fall. Since Monday, they've only collected 2.9 million. The goal is 5 million and any extra is bonus. Dr. Alousi increased my neupogen dosage to 1200 mg a day to see if this would help stimulate growth. I haven't really had any bone pain since I started the neupogen again. Every now and again my joints will ache for a few minutes and I'll get a little headache. The only major side effect so far has been that my knuckles are swollen and it hurts to straighten out my fingers.

My platelet count was low today, as was my magnesium. I was able to get a magnesium IV while my stem cells were being collected. Unfortunately, I had to get platelets at the ATC bed unit. It's a hit or miss here. Either you wait forever, or you go right in. We got to go in after waiting for half an hour. I must say, I spent over eight hours in bed today hooked up to IV's. This also means that I got to take multiple naps while Chris tooled around on the computer.

We got back to the apartment after 5pm and other than a touch of food poisoning from lunch, nothing eventful happened. I wish I had more to write, but I'm still fuzzy from all of the pre-meds I get before transfusions. I promise to be more lucid tomorrow.

Apheresis Day Four

Day 119 (D -19)

Here we are one more day closer to being able to get our lives back. We got up at 5 AM to go in for lab draws and blood work and then were back in the Apheresis clinic at 8 AM. Ann's results from yesterday were in, and turned out to be a slightly disappointing 0.49 Million. I say slightly disappointing because our total collected so far is 2.97 M. That leaves us 2 Million short of the 5 Million total CD34+ cell goal.

However, this may not be a problem. I have been assured that other institutions have performed transplants with only 3 Million cells, so maybe the other 2 M are "just in case". Then again I'm hoping that we won't need these cells anyway. After all they or ones closely related to them were the reason Ann got leukemia in the first place. Statistics show that Autologous transplants are roughly three times more likely to relapse than patients treated with from an Allogeneic source. Which is exactly what the cord blood units are.

We nearly got thrown out of the apheresis clinic today for laughing and cutting up. Ann had started surfing the net on her laptop and ended up on a couple of very non-PC websites. The subject matter was for the most part unintentionally hysterical, and we both laughed so hard it left us gasping for air and wiping tears from our eyes. I can't remember the last time we laughed like that, and it felt really good just for that moment to forget about transplants, cancer, and all the other worries that we are carrying around these days. You have to fight really hard to maintain your love and connection to each other, or the treatment will grind it to dust. I had assumed our sense of humor had been demolished already. What a wonderful surprise it was to find out today, that its just been hiding and is otherwise unharmed.

After this round of apheresis I should be able to take Ann home to rest, and I will be able to attack the mound of laundry that has been building up since our schedule got so busy.

Last but not least Happy Birthday Tina! I hope you get more Cowbell!

Apheresis Day Three

Day 118 (D -20)



Today's transfusion is notable because its the first time Ann has gotten blood from Louisiana while here, but then again she has not needed as many transfusions as some other patients in rougher circumstances. Many thanks to the A Pos donor that decided on 4/25/07 to give blood at the Lifeshare Blood Center in Shreveport. I don't know who you are, but you and everyone else who gives blood and platelets are our heroes.

Apheresis Day Two

Day 117 (D -21)

Today we are back in the apheresis lab for Ann's second day of collection. It was actually a bit of a surprise start for the day because MDA called us early this morning and asked us to come in. Normally the apheresis clinic is packed, not because there are lots of patients, but because each collection can take upwards of 4 hours. So getting here early is really a bonus because we won't have to wait until after 6 to get back to the apartment.

Dawn, our apheresis nurse, told us that yesterday's collection looked really good. MDA's labs confirmed the collection of 1.6 million CD34 cells (aka stem cells) out of the target of 5 million. We also found out another very interesting side effect of neupogen...in addition to rotten bone pain it causes fevers! Well low grade fevers anyway, but it still freaked me out when Ann's temp registered at 100.5 F today. I was ready for the apheresis to be aborted and have her check into the hospital for a week of IV antibiotics. However, Dawn put my mind at rest and said Ann is not having any other symptoms (chills, sweats, trouble urinating, etc, etc) and neupogen causes fever spikes sometimes. Especially at the levels she is taking (900 mg per day). Sure enough 30 minutes later her temperature was back down to 98.7 F and then a hour later it was all the way down to 97.4 F.

From a technical POV the collection process is pretty interesting. The apheresis filter is really a collection of peristaltic pumps and a high speed centrifuge. Blood is drawn from the patient (Ann who is currently being impossibly cute) and pumped into the centrifuge. There the angular velocity causes the blood to separate based on relative density. RBCs are the most massive and settle to the bottom. Plasma is the least massive and ends up on the top layer. WBCs and Platelets occupy the layers in between.

In this middle area is a small band where the CD34 Cells fall out. A tube and trail and error are use to siphon them off. The positioning of the different blood layers is controlled by adjusting the speed the centrifuge is rotating at since the collection tube is mounted statically in the incoming blood from the patient. Once gathered the stem cells are mixed with a preservative (DMSO) and pumped into a collection bag. Funny that so much fun is poked at engineering by the Docs over here when this collection of PDPs, motors and feed back controls is relied on so heavily to treat cancer patients.

The apheresis lab is incredibly cold most of the time, probably to keep down the chances of damaging the blood stem cells being collected. So in the 4 hours or more that a patient (and her husband) will be there it is necessary to dress like its January in Main and not May in Texas. In this picture you can see Ann has about 4 blankets piled up on top of her while she passes time watching MPGs on her laptop.

To help keep the patients warm the apheresis lab has blanket warmers. These can hold up to 50 clean blankets and heat them up to about 90 F or so. The effect is just like grabbing clothes just out of the dryer and they seem to do the trick for helping the patients keep warm.

For everyone who ever wondered what blood stem cells/bone marrow looks like, the picture on the left should satisfy your curiosity. This is a picture of the cells that they collected from Ann yesterday.

One last thing...I discovered today that MDA has installed cellphone scramblers at various points of the building to protect their telemetery from some labs and wireless data systems. So if anyone has been trying to call us while we are at MDA and gets dumped to voice mail then that's the reason. The problem is compounded with some sort of screw up Sprint is currently having, which messed up my aircard and put a big delay on our voice mail notification. Which is also if you haven't guess is the reason this post is so late.

Anyway more tomorrow. Night everyone.