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.

httpv://www.youtube.com/watch?v=lf0CbkS2qTE

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.

httpv://www.youtube.com/watch?v=xznla8k_ES0

What I’m Reading Tonight

Today was a stressful day as the start of our transplant process. Duke’s team couldn’t have been better, but I think there was really no way around our being a little tense at the outset of this.

Among the topics discussed was the possibility of a Reduced Intensity Conditioning regimen. Originally we had thought this was ruled out, I brought it up specifically at our transplant Q&A, but it has come up again. Through discussions with Dr. M and closely following Maya G’s story, as well as some discussions with other parents via email, we continued to stir the pot a bit about the possibility of Zoe being a candidate for RIC.

As it happens, Zoe was a big topic of conversation in the PBMT team meeting, and one of the docs had recently heard Dr. Filipovich speak on the subject. Between our agitating and this coincidence, we’re now back to considering this procedure.

There is a lot to learn, and we have a big decision to make if she is a candidate. We’ll know more later in the week and I will cover the details, but in the meantime I am working through two journal articles on the subject for those hearty travelers who wish to follow along:

The Use of RIC in HLH and LCH Patients (2008 study)

RIC and ASCT in children with malignant and non-malignant diseases (2008)

Invigorating reading, let me tell you.

The Work-up

This week will begin Zoe’s transition to the care of Duke Medical Center, specifically the Duke Pediatric Bone Marrow Transplant unit, or PBMT. We have a total of 19 appointments this week, so we shouldn’t lack for activity.

For the benefit of those following and potentially other parents wondering what to expect in each stage of this battle, I’m going to cover our schedule for the week. I’ll also be doing my best to document our time from here on in detail, including with pictures where appropriate.

There will be scary moments in the coming weeks and months, and there will be pictures that will not have Zoe at her best. We’re keeping this journal for a number of reasons: to manage our own emotions and to communicate with family and friends, but also to try and give a road map for others who may find themselves with a child fighting for life and not know where to begin with it all.

I’m trying to create what I would have wanted to find that first night, when I went home with the diagnosis and tried to cope by reading everything I could get my hands on.

Monday

Check-in at the PBMT clinic:

  • Vitals taken
  • First lab draw, 1/2 of the blood needed for pre-transplant lab work
  • Respiratory vital battery & nasal wash (to check for virus)
  • Medical history review

Meeting with PBMT coordinator for education session
Meeting with the PBMT Social Worker for evaluation

Tuesday

Check-in:

  • Vitals taken

Meeting with Dr. P, primary transplant doctor for discussion

Check-in:

  • Hearing test
  • Crying Vital Capacities — study of lung function
  • EKG (heart study)

Wedsnesday

Check-in at Pediatric Radiology:

  • Chest x-ray
  • CT scan of the brain, sinus, chest, abdomen and pelvis
  • Echo cardiogram (heart study)

NPO for today starting at 7am 😦

Thursday

Check-in:

  • Vitals

Check-in at Pediatric Radiology:

  • Kidney function test (GFR): dye will be injected into Zoe’s central line, then a tube of blood will be drawn at 1 and 3 hour intervals
  • Remaining pre-transplant labs drawn

Meeting with PBMT coordinator during GFR wait
Meeting with PBMT team at large
Meeting with Family Support Program
Meeting with Insurance Coordinator

Friday

Meeting with PBMT coordinator: Consents and Paperwork
Check-in at Duke University Eye Center for eye exam
Check-in at PBMT clinic for pre-operative screening consult

Future

After this week, assuming all goes well, we will have at least one additional day of meetings next week to review. At that point the admission date will be set to begin conditioning and the countdown to transplant.