Post-transplant Work-up

Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the “scream” test for pulmonary function, full blood draws and x-rays. We did not have to have another CT scan, nor did we have to do the nuclear kidney/liver function test. Zoe’s Creatinine and Bilirubin (markers of kidney and liver function) give us no reason to believe she isn’t recovering or fully recovered from her cyclosporine treatments.

The good news is that everything came back just fine so far. Zoe is a fine screamer, her pulmonary test came back better than it did pre-transplant, her xrays looked fine, and her blood counts were almost all in the normal range. The great news is that she did not need “G”, her WBC count is up to 5.6 on it’s own. She’s gone 2 weeks now without a boost, and the counts went up not down. We’re optimistic this means she’ll never need it again.

The visit felt very much like a cap to our experience at Duke. Most of the same tests, only this time with an eye toward making sure everything is fine so we can go home, rather than being fine so that she can be admitted and subjected to chemotherapy. The feeling was entirely different.

Zoe still has a bit of thrush, but given her newfound love of spitting out her medications, we decided to pursue the nuclear option to clearing it up. They gave her a purple dye-like medication that coats the inside of her mouth and throat and suppresses the thrush. The upside to this is it only takes 3 applications over 3 days, the downside is that it is really strong dye.

It’s permanent on pretty much everything except skin I’m told, so Zoe has to wear a little bib for the next few days, and everything she puts near her mouth will end up purple. As we were finishing up the application of it, the nurse lifted Zoe up to a sitting position a little too quickly and she spit up a bit. In a heroic attempt to save her clothes from the purple menace, I caught the spitup in my hand, and was rewarded with a purple hand for my troubles. The dress still didn’t make it. After that, we put on her bib and I gave up any hopes of joining the secret service.

There was a bluegrass band playing in the lobby for the duration of our visit, giving an interesting soundtrack to our Family Circle trek all over the hospital for our tests. There were definitely more smiles than usual everywhere we went, as a result. All in all, a great day.

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.