Home Sweet Home

We're home. Only happened 2 days later than planned, but we made it! We could have left on Monday afternoon, but Charlotte was still in so much discomfort that we felt professional monitoring would do us all some good. (What good is being home if you are going to be terribly anxious the whole time?!)

We could see an instant shift in her demeanor. She was clearly not feeling 100%, but the comfort of her things & her own space was what she needed. We got a thumbs up and some exhausted smiles in agreement!

Charlotte relaxed with a warm bath and allowed me to brush her hair before bed. (This never happens - she has to do it herself!) I tried to soak it up, as I know we won't be able to replicate that in the near future. We got her situated and had alarms set for anti-nausea meds in the middle of the night.

While there was a victory in coming home, we did get another less-than-ideal update right as we were being discharged. I saw a notification come through via MyChart and not thinking better of it, went to look. There was an addendum to Charlotte's original CT scan. In a tumor board review, which is customary practice, a 2nd viewing of the scan showed a 3mm nodule in her lung. It is too small to know precisely what it is, it wouldn't have changed the course of treatment, and it will be something we monitor going forward. (Hhmm... where have we heard that before?) We know the ups & downs are inevitable, but it sucks to be riding the high of going home to getting news like that. Via MyChart, too! Dr. Brittany was VERY apologetic that we saw that before she had a chance to call us and she said she would be providing feedback to the tumor board on how those addendums are communicated to families.

We have a couple of weeks before we are admitted to the hospital again for the next chemo med - methotrexate. We will do that two weeks in a row and then we're back to the beginning with the doxorubicin/cisplatin combo. Between now and then we'll have a handful of appointments at the hospital: checking labs, weight, a surgical meeting, and Charlotte will start physical therapy.

It continues to be a lot. And it's only the first week! Here is hoping it gets a bit easier with each dose!