Humility

When I arrived at Zoe’s bedside this morning, she looked great. She still lies flat, but she was jabbering and smiling and super happy to see her brother and Grammie. We snuggled and played a game on her ipad and, after being cleared that she isn’t going to have to have a minor surgery today (that was a possibility), her bed was raised a bit and her father fed her a tiny lunch of sorts. It’s great to hear her voice, see her smile, and watch her pet Cam and say, “Cute baby!”

Last night, after writing (venting), the oncologist and I talked about Zoe’s MRIs for about an hour and I gained a great deal of perspective (so easily lost!!). To us, having only seen Zoe’s MRIs, the increase in fluid seemed “substantial” whereas to the doctor who has seen a great many of these, Zoe’s fluid increase seemed “minimal,” especially given that it took 5 weeks for that buildup to occur (he said he has seen children create that volume in just a couple of days). The spots on Zoe’s MRI are all clustered together in the center of her brain. The brain matter had been pushed to the rim due to the tumor, and the matter is returning to the center of her brain space. Well, in the very center of that, which would be where the outskirts of her tumor were, are the lit spots. This area would have been hit by the radiation therapy whether there were lit areas there or not, but now we’ll have an additional MRI to see if these spots are growing.

Communication is tricky. Zoe has several specialty teams and her point person changes with each change in crisis. When we were admitted, the crisis was that she had a tumor in her brain, so the neurosurgical team had our point person. When her diabetes insipidus became the main issue, Endocrine became our main contact. When Zoe needed last Friday’s MRI, it was scheduled by neurosurgery, so that is the team that should have reported the results to us. Now that she is on chemo, Oncology has the point person. If and when Zoe’s brain matter (tissue or fluid) becomes the crisis again (fluid or surgery or infection), neurosurgery is again in charge. The doctors on all these teams meet every week and discuss the case, but there is no one liaison from that conference table who then gets up and delivers us a report of anyone’s findings or intentions or concerns.

So, humility on all fronts is key. Thanks to all of you who are gracious to me in this challenging season of my family’s life. I’m going to go cuddle Zoe now. :)

Catherine