Mostly Medical Update

For those of you who get bogged down by the medical rundown in any given patient’s life, feel free to skip this. No hard feelings. :)

So, last night I was toast. Had a very long day. However, David sort of reinflated me this morning with words of encouragement and I was able to pull it together to take Zoe, yet again, down to CHB (Children’s Hospital Boston). Yesterday during Zoe’s cerebral-spinal-fluid flow test, she stopped breathing and had to go through the lumbar puncture twice, but made it out ok. The test so far shows that the contrast dye is NOT getting to everywhere that the doctors would like it to go, however, we went in this morning to take final photos and I haven’t heard the results from the full 24 hour test, so perhaps the end result will be different. Interestingly, the results may not matter so much, as I found out via a phone call to the oncologist. I asked, if the flow does not successfully go to the brain, then would we use only the Ommaya port rather than both the Ommaya (brain) port and the lumbar puncture? He said that they would use both anyway so that they can treat Zoe systemically as well as her brain particularly. While they were doing the lumbar puncture, they also took some spinal fluid to test that for malignant cells and we may hear that result early next week.

David’s going to pack Zoe in the car around 4:45 (a triple “f” hour Rach!) AM for an MRI to examine the fluid in her brain. Her neurosurgeon found it surprising that Zoe has been experiencing dizziness since the surgery. She said she’d like to see the volume and location of fluid in Zoe’s brain to see if that could be affecting her perception, balance, etc. Zoe’s come a long way since surgery regarding both balance and dizziness, but we still think she probably suffers from related issues occasionally, so we’re quite interested in the test results. Additionally, David and I have been asking for a proper ophthalmology test for weeks and, when David told Dr. Goumnerova (neurosurgeon) that Zoe doesn’t look downward, she ordered one. How anyone with a medical degree has been missing (or at least not elaborating on them when we bring them up) these rather obvious issues (dizziness, balance, not looking downward when appropriate) for six weeks is beyond us, but we are glad they’re finally addressing them. (The CATCH occupational and physical therapists noticed them immediately and asked us what our doctors were saying about them, and we had no response to that question.)

This afternoon, Zoe’s music teacher, Terry, visited with her daughter (the only friendly kid face Zoe has seen all week) and Grandma and Grandpa played instruments and sang and danced with Zoe and Cam which brought lots of laughter and fun for Zoe. I would love it if we could find some musicians/singers to come to Dana-Farber/Children’s while Zoe is in chemo next week. I may try contacting my alma mater, Gordon College, to see if some students would like to visit.

We have an updated plan, but keep in mind that no plan has ever actually taken place. We intend to spend Tuesday night in Boston so we don’t have to drive in Wednesday morning (Thank you, Sarita and Eric!). Wednesday, Zoe is supposed to have her portacath surgery (cancelled last Thursday due to fever), a bone marrow aspiration test, and her first chemotherapy infusion via a lumbar puncture (one chemical for only 8 minutes, another one for 8 hours). Thursday, in addition to more chemo infusions, Zoe is scheduled to have a kidney function test (cancelled Tuesday because, although they poked three of her four appendages, they could not get a successful line to insert the contrast dye). Friday, Zoe is scheduled to have a 48 hour chemo infusion. They’ll probably release us Sunday, but the oncology nurse practitioner said to expect to be readmitted to the hospital soon thereafter due to fever or other side effects (nausea, a common side effect with chemo, can easily turn into a life-threatening situation for Zoe due to her diabetes insipidus).

I’ll have to close here as Cam is calling, but I’d like to say thank you to Paula and Patti and Mommy for scrumptious, healthy, tasty, comfort foods (my fridge is bursting!), thank you to Libby for cleaning our place of peace and familiarity (although there’s nothing familiar about being able to see our kitchen counter at the end of the day – what a treat!), thank you Joanne and Jenn from CATCH, thank you to Phil and Tammy who gave us a photograph of our family that will mean a great deal to us forever, for the loving cards, helpful donations, strengthening words of scripture, the card-keeper binder from April Mentzer and family, and the grace you all have shown us.

Zoe should be home Friday after 4pm through noon Tuesday, so please feel free to visit if you’d like.


Catherine