We received confirmation late yesterday of scans being scheduled, so now that we have dates, scanxiety is starting to set in. We will be in Michigan a little longer this time since we have added a PET/CT scan into the mix. This should give us a little more information and what we are messing with. We have already scheduled Renucci House, so thankfully that is taken care of.
Here are the dates, so I know many of you like to know what's happening, so you know how to send out your love and thoughts on those days. And when you can wear your Emily Gear.
Tuesday, January 21
--11:00 a.m. – Clinic appointment labs/infusion
--12:30 p.m. – DX-MIBG Injection
Wednesday, January 22
--8:30 a.m. – DX-MIBG Scan
Thursday, January 23
--9:00 a.m. – PET/CT
--12:30 – Clinic appointment w/Dr. Sholler – scan review
We have been spending a lot of time reading on the T Cell and all that is involved. Searching and reading. If any of the parents that have already gone through this read this, I would love to speak with you. Even though we had our phone consult it is always so much better hearing from others what they went through and the side effects that their children went through. Thank you would love to hear from you.
Although we feel really good about this promising trial, we are still looking into other trials at St Jude and other locations. We always keep an open mind. But the hope is that since this is something new that she has never had that it works.
Just a quick update of where things are and scans being scheduled.
We did keep Emily home from school yesterday because of her nosebleeds. She ended up having one yesterday morning, but hasn't had one since. So we hope it stays that way for the rest of the weekend.
Have a good Saturday. It's a rainy day here, so we are being lazy, but enjoying time together.