One Tube Down & Other Notes

Zoe is down to her central line only now, down from a peak of 4 tubes to manage attached to her at all times. Her oxygen and heart rate monitor came off today, she’s been off oxygen for a couple days and is finally holding steady right where she should be. I’m sure she must feel better and we’re certainly glad she’s getting that much closer to normal.

Dr. B’s visit brought news that her IL-2 level is at 11,000, where normal is 3,000. This is not necessarily bad news, just the first level we’ve received news of so we have something to base progress off of. This along with Ferritin will offer us a way to track disease activity without a bone marrow biopsy.

We discussed our next steps, and Dr. B feels that it is in the realm of possibility that Zoe will be able to go home the end of next week or the following week. We have to reduce her steroid dosage gradually and make sure she holds up without it, and obviously ensure other symptoms do not reemerge in the meantime. If we are able to take her home, she’ll still be coming in regularly for her Etoposide regimen and we’ll be administering her other 2 chemotherapy medications at home, but at least she’ll be out of the hospital. Progress is progress.

Zoe has also gone down slightly in weight, 13.8lbs down from 14.11 the day before, which I take as a positive sign. We attribute it to coming off the iv fluids, which she had been on at the same time she was breastfeeding. For a while there I thought we were going to need the Willy Wonka juicing machine.