Some Pretty Good News!

Day +30 (D 168)



Fantastic news today! It seems that Ann is doing so good that her Doctor decided it was not only same for her to get the weekend off from the SCT clinic visits, but also for her to stop coming to the clinic every day of the week. Until future notice we will be going to clinic three times a week. She will still need to get her IV fluids on the days that we are not there, but they have made arrangements to give them to her in the intermate pumps ( "baby bottles" ) or by a portable Gemstar Pump.

They doctor and nurses again reinforced how well they think Ann is doing to allow her the extra slack in the tether that connects her to MDA. Most patients don't get this opportunity until much, much later on. Some as late as past their 100 day mark. Needless to say this has raised my cautiously optimistic meter another notch.

In other news today Ann had her BMA (Bone Marrow Aspiration) that will form the basis of her first chimerism study. Part of the marrow collected will be flown out to a lab in California for the chimerism test, which is to see exactly "who" makes up the marrow sample: Ann, Cord A or Cord B. The other part of the sample will remain at MDA for molecular testing to try to detect any residual leukemia. We have been through that before before the transplant and they have all come back negative. Also the doctor isn't worried about it because Ann was transplanted in remission with less than 3% blasts and no molecular evidence of leukemia. So the chances that any will turn up now seems to be extremely remote.

Her counts look pretty good: WBC 4.9 K/uL and ANC 3.87 K/uL. Because the ANC is still above 2.5 we will also get to skip neupogene over the weekend. It turns out that the new cord cells are very, very responsive to neupogene. Any hint of the stuff and Ann's counts jump up a point or two. File that under good news as well. I guess Ann's virtual "cookies and juice boxes" are working on the baby stem cells after all.

Tomorrow we get to sleep in for the first time in many, many weeks and we are both really looking forward to it.

Prime Time Part Deux

Day +29 (Day 167)

Today has been yet another really long day. I started out at the diagnostic clinic at 7am for a blood draw and it was a zoo. We were filing into the rooms 6 at a time and as soon as a few people were processed, several more were called in to take their places. The phlebotomists didn't miss a beat. Between patients they teased each other in a friendly manner.

Chris and I were surprised at the results of my blood work. My white blood cell count was 5.9 and my absolute neutrophil count was 4.7. This is yet again in the normal range. Go figure. I did get one neupogen shot yesterday, but we didn't think that it would spur my new cells into action so quickly. The APN didn't seem to be phased by this. She reminded us that the numbers would continue to fluctuate. I know it's still too early for me to be able to manage this amount of growth without the help of neupogen. Since my ANC was over 2.5, I get to skip the neupogen tonight. I'm guessing that my numbers will start to decline tomorrow or the next day. My hemoglobin was 7.4, so I had to get red blood cells. I've been getting really tired very easily over the past two days, so this was no surprise. We were in clinic until after 4pm.

I continue to retain fluids, but my medical team doesn't seem too worried. I got a small dose of lasiks two days ago, but this didn't help. They monitor my weight daily to gauge my fluid retention. Because Chris and I are both science nerds, we figured out that I'm retaining a little over a gallon of fluid. This makes my fat pants very uncomfortable and my face is very round. My doctor once let me go until I had retained over 10 pounds of fluid, before giving me lasiks. I sincerely hope that this won't be the case this time. I am pretty close to 10 pounds over weight, though.

Laren left for New York this morning. I really loved having her here. It was nice to have another girl to chat with and it doesn't hurt that she has a wicked sense of humor. She also kept me on the straight and narrow with exercise and hydration. Chris has his work cut out for him now that Laren has raised the bar. :) (In defense of my wonderful husband, he has been amazing during this entire ordeal and I couldn't be luckier to have him to love.)

I have another really long day tomorrow including a bone marrow biopsy. You'll hear all about it.

Not Ready For Prime Time

Day +28 (Day 166)

Ann counts today and yesterday have been dropping from the high points they achieved two days ago. Today's WBC count was 2.5 K/uL and the ANC was 1.85 K/uL. Whats the reason? Neupogene...aka G-CSF (Growth - Colony Stimulating Factor). We had been taking neupogene every day since before she was discharged from the hospital back on day +12. We where ordered to stop taking it on day +25 when her ANC advanced above 2.5 K/uL.

The 300 mg/day shot has been stimulating her new stem cells into action and from today's blood test results it's clear that they are still too immature to be a head lining act just yet. So today we are starting the neupogene shots again. Ann will proably be on it and off it periodically with diminishing frequency, until Ann's counts reach equilibrium.

I spotted a small, for lack of a better word, "blotch" on Ann's stomach and thought it might be early onset of GvH. After we altered the PA to it, she was pretty skeptical that it was, but cautioned us to keep an eye on it. GvH is like wildfire and it can spring up suddenly and disappear just as fast. Despite this MDA has reduced Ann's level of the anti-rejection meds prograf and cell-cept.

The nurses are still very positive about Ann's progress. I guess they have all gotten used to how good she looks and how much energy she has, despite their expectations for the performance of a CBT. It's still no surprise to me. I have spent the last 13 years deeply in love with her and I know how tough she is.

Making Progress

Day +26 (D 164)





Hello everyone, I have some good news. Ann's counts have jumped up to normal levels as you can tell from the above embedded charts. Her WBC and ANC count reached the normal range for an adult human being for the first time today, and she has been taken off of neupogene until further notice. Hurray!

Most of the doctors, PA and nurses we ask about our relative progress continue to express skepticism about cord blood engrafting so quickly. Patients are normally at day +40 or +50 at the point we are at now. I'm not going to jump to conclusions as Ann might be an outlying data point. But it would be really great if the expanding technique that was used for Ann transplant really help give lots of people chances they wouldn't have had before. A doctor acquaintance (not from MDA) is expecting SCT to be an exciting feild to be in based on our experience.

Tomorrow Ann will be starting the CMV study and there is no word on weather we will be getting mabavivar(sp) or a placebo. However, MDA is going to be drawing extra blood each week and doing a high resolution molecular study to look for any occurrence of CMV. The benefit of which should be that we get a very early warning of the virus if it shows up. Which means we will have a chance to treat it early before it reaches the point that it might endanger Ann's new cell graft.

Tomorrow is more of the same, clinic visits, IV Fluids and more magnesium, but we are making progress.

Lazy Sunday

Day +25 (D 163)

People keep asking me how it feels to be out of the hospital. I'm grateful not to be trapped on the 11th floor in the BMT ward anymore, but it's hard to let go of some of the habits that I developed there. I wake up every two to four hours expecting my nurse to come in and change my IV fluids or a CNA to come in to take my vital signs. Then I realize that I'm not in the hospital and try to go back to sleep. I also have to resist the urge to report how often I go to the bathroom. I actually had to keep a record of how often I went and how much there was for the nurses.

We have clinic visits every day. This means that for between four and six hours, I'm hooked up to an IV pump, receiving fluids and medicines. It's like being in the hospital all over again.

Today my appointment was for 7am. I had a blood draw, then I got hooked up to receive some magnesium and electrolytes. It's important that I stay hydrated to keep my kidneys healthy. I'm retaining about four pounds of fluid. I'm hoping that I can have something done about that tomorrow. It's making finding pants that fit hard. In addition to receiving magnesium at the clinic, I also have to take a large supplement, and when I'm at home, I have to get hooked up to a magnesium intermate. The immuno-suppresive drugs that I'm on leach magnesium out of the body. It makes it very difficult for me to maintain regular levels.

My white blood cell count is 3.6. My WBC count dropped yesterday, which scared me a bit. I've been reassured that this was expected. My counts will flip flop for quite some time. Today's numbers were a significant increase. My absolute neutrophil count is above 2, which is great. When it reaches 2.5 and stays there, I can stop getting the neupogen shots. My red blood cell count continues to drop, but at a slow rate. I'm encouraged by this. I know I'll have to get a blood transfusion this week.

All things considered, I feel well. I still get tired very easily and have to have a nap. I usually sneak it in while I'm at clinic. I'm staying positive and know that we're looking at the home stretch. I've been warned that it could be a few years before my immune system is able to cope with the outside world. I'll have to continue to wear a mask around crowds and wash my hands compulsively.

We're waiting for signs of GVHD. I get checked daily by the APN at the clinic. She's looking for a rash. I have to be on the look out for GI problems like uncontrollable vomiting. So far so good.

First Day at The New Clinic

Day +22 (D 160)

Small Degrees of Freedom

Day +21 (D 159)

This is going to be an uncharacteristically short, but we are both tired and have to get up for labs early in the morning.

Ann got discharged from the hospital today and walked out under her own power. She was so proud, and was smiling from ear to ear behind her mask.

Her labs look good and both her WBC count and ANC continue to rise towards normal levels.

Tonight she gets to engage in some small freedoms like eating something not from the hospital menu, sleeping in a real bed and not being woken up every 4 hours.

Tomorrow we start our new daily routine at MDA with hope for a brighter future.