Its been a long day for Zoë today. We stopped feeding her formula/breast milk at 1am, stopped her milk feeds completely by 2am, and then woke her up in time to depart the house at 5am for a CT scan at CHB for 7am. Spent the next hour after arriving at the hospital walking the halls of radiology trying to console a hungry baby who if she can't use her stomach will use her lungs. Finally cleared up the confusion about her CT scan/MRI and got her into her CT scan by 830. Picked her up from recovery by 1030 am where they also replaced her nephrostomy bag dressings and brought her over to the Jimmy Fund Clinic. There she met with her PCP and a couple of nurses. they drew some blood, changed her broviac cap and changed its dressing, too. I took a brief nap and when I woke up, they had already given her her chemo for the day. It was pushed through her broviac line and was not through an IV drip as some of her chemo drugs have been. after this, and more that I am missing in this update, we finally made it home more than 12 hours later. I heated up left overs from last night, feed my wife, who feed my daughter, and then I gave Zoë Ativan. and now Laura is trying to set up her 24 hour feeds. And with this constant stream of thought and no spell check, I am getting off the computer to help them both out. I hope you don't feel as tired as I am by reading this block of text. Maybe I'll return later, break it up into a few paragraphs, spell check and delete any repeat repeat words.
Zeppo Young finds joy in the simple things in life, such as digging around in his garden, and fermenting vegetables.
The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.