A lot of things have happened/changed overnight, so we’re updating early.


  • WBC: 1.1 (+0.4)
  • ANC: 740 (+200)
  • Platelets: 85 (+75)

One more day of a rising ANC count and she will be deemed “engrafted!

Last night, they received news that her liver was enlarged (her common hepatic duct was still functioning properly) and contained lots of fluid.

With Veno-Occlusive disease the blood vessels that transport blood through the liver become inflamed and blocked causing the liver to swell.

They said she has moderate VOD and want to be proactive rather than reactive.

Therefore, the call was made to start her on Defibrotide. Just approved 3 years ago for treatment of VOD, it has a very high success rate.

Her nurse said it’s the quickest and earliest she’s ever seen them start the medicine. But, as normal with Avery (thanks to Mom’s advocacy), they caught the VOD early!

Additionally, the IR team was going to change her Central Line (it was beginning to pull out) and add a small stint into her side to help drain some of the fluid.

BMT DAY +14 going down to IR for central line replacement
Because she’s leaving the BMT unit, the sheet draped over her bed going to IR is to help alleviate germs.

They’ll drain a small amount during the procedure and then slowly over the next few days.

The medicine regimen can last up to three weeks, but can be stopped when she begins to show improvement.

They were also able to restart her anti-itching medicine again last night with the Mucositis gone.

She slept PEACEFULLY from 9pm-4am. Up for an hour to play, then back to sleep until around 9:30am.

BMT DAY +14 sleeping with oxygen and Ellie

Everyone got some much needed rest!

Finally, her poor little face.

Wound Care says there isn’t much they can do at this point. It can’t be covered because it needs air to heal. They’ll keep applying the antibiotic cream and watch it.

Her left nostril has a blood clot from a scratch yesterday, but they won’t touch it due to low platelets (blood clotting cells).

We’ll update this evening if there is anything new through the afternoon.

Thank you all again for the loving support. It’s been an emotionally draining week and we’re glad to have y’all here.

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