Day -5: Checking into PBMT

Zoe has had a big day so far today. We’ve just checked into the Duke Pediatric Blood & Marrow Transplant unit (PBMT), known here as 5200.

We started off this morning with two alarms to wake us up: one at 3:30am, and one at 5am. The first was to get Zoe’s last feeding in before her NPO starts and she isn’t allowed to eat, the second to get us up in time to make a 6am surgery check-in. We didn’t actually make it in until 6:30 am, but who’s counting.

The procedure went as well as could be hoped for. Zoe got a 2nd Central Line put in (installed?), and now has 3 tubes dangling from her little chest. One from the original Broviac, and 2 from the new one, which is what’s called a double lumen. She is recovering just fine, other than a little flush we didn’t notice any major changes to her temperament or condition after the surgeon was done.

Later in the day Zoe is due for her last dose of Fludarabine. Fludarabine week has flown by, we’ve seen little or no reactions whatsoever, so when they say it’s a well-tolerated medication they aren’t kidding. The next few days should get more intense as we finish up conditioning and knock out the rest of her bone marrow. She will have no immune system left by the end of day Monday, so between now and then we will see how things go.

A little about the PBMT unit, or 5200.

The Pediatric Blood & Marrow Transplant unit is a self-contained portion of the hospital reserved specifically for transplant patients. It has 16 beds, a common room for kid’s activities (including siblings), a kitchen and laundry for parents’ use, and a room to store workout equipment and large toys.

Each room, with the exception of two (which are a suite of sorts, sharing a bathroom when siblings are being treated), has it’s own bathroom reserved for the occupying child’s use, or in the case of infants the live-in parent’s use. Rooms also have a small TV, refrigerator and “couch” that folds down for the live-in parent to sleep on.


The unit itself is on a separate air system and is what’s called positive pressure. This means that all air enters the unit from it’s own system and only exits the unit. Outside air doesn’t enter to prevent airborne contaminants or infections.

To enter you go through a large hospital door into a room akin to an airlock. Only one door is allowed open at a time. Visitors enter, put covers on their shoes (or change into “clean” shoes from lockers that each room has) and wash. Then they can enter.

So far we’ve met several parents here, all very nice of course. One family from Wisconsin here with their 3 year old who just arrived pre-transplant, and another family 1 month post-transplant with both their 9 week old and their 2 year old, who had the same condition and are using the shared suite.

Finally, I didn’t get it up yesterday, but here’s a short clip of Zoe playing last night before we were admitted.


Day -6: Steady as She Goes

So far so good with Fludarabine. No reactions, she is taking it about the same as she would a hydration drip, we have seen little to indicate she is even on a chemotherapy med this week.

Her counts have been ticking down a bit, but not as precipitously as they did on Campath. Fludarabine as mentioned previously is a general fast-growing cell suppressor, so it should be reducing all of her blood counts somewhat. Her white has been going down and that’s the primary marker the doctors appear to be tracking. Her Lymphocytes are holding at 2-3% depending on the day, and her platelets have remained high so far.

We’re a few days out now, and what we expect to be the worst of the conditioning lies ahead. Tomorrow Zoe is admitted, goes into surgery, and has her last dose of Fludarabine. Saturday & Sunday are Melphalan, the sore-inducing med, and Monday is Thiotepa, which requires 5x a day bathing to prevent chemical burns on the skin.

We’re hoping that things continue to go as well as they have. Zoe has been wonderful, and while we can’t quite expect an easy ride, we remain optimistic that the Reduced Intensity Conditioning will allow her to meet her count goals without major pain. After that, we’ll be focused on getting those counts up in the wake of the transplant on Wednesday.

Update: Counts back

[spoiler name=”Click to show counts”]

  • WBC: 1.2
  • Hemo: 8.9
  • Platelet: 513
  • Lymphocytes: 0
  • Creatinine: 0.2
  • Bilirubin: 0.5


All in all we’re exactly where we should be. Liver and Kidney markers are good, Lymphocytes mostly gone, WBC down where it should be.

Day -9: Fludarabine Starts

Today we start Fludarabine, which is Zoe’s 2nd major chemotherapy medicine in the Reduced Intensity Conditioning (RIC) regimen. Fludarabine is designed to eliminate fast growing cells, any fast growing cells. Cells in the bone marrow are very fast growing so they are what will be most affected. Campath is a drug that specifically targeted Lymphocytes (virus fighting cells that are part of any normal immune system), whereas the Fludarabine will eliminate everything in the marrow. It may also finish off the last of her hair, but Maya was nearly bald until she was a year old, so we’re used to that.

It’s considered a well-tolerated medication, so we are hopeful that we won’t see anything at all this week, other than a drop in cell counts and perhaps some fatigue. So far that’s been the case.

Zoe’s counts came back up a bit over the weekend:

[spoiler name=”Click to see counts”]

  • WBC: 2.9
  • Hemo: 9.5
  • RBC: 3.12
  • Platelets: 730
  • Lymphocytes: 3%


We’ll continue Fludarabine until Friday. Also on Friday Zoe will get an additional Central Line placed, which means surgery. Hopefully the last major one.

We’ll be admitted to 5200, the Pediatric Blood and Marrow Transplant ward on Friday after surgery, and we will then begin the last medications before the transplant itself next Wednesday.

Zoe is handling all of this as well or better than we are. She’s a fantastic baby.