busy past week

We've had several hospital and Dr visits during this past week off chemo. Elizabeth had to go get another MRI last Monday because there was miscommunication about the pre-chemo MRI and they only did a part of her spine, instead of the entire spine. I even questioned at the initial MRI when they gave us the time for the scan (because it seemed way too short), but I should have pushed harder and insisted they call the Dr to check the order. Poor Elizabeth...she still never complains. The good news is that both MRI's looked clear. We were so relieved and thankful! Elizabeth was able to get in for an afternoon of physical therapy at Neuroworx last Wednesday. Her first post chemo labs showed a very low hemoglobin, so it was back to the hospital on Friday for a blood transfusion. We felt so blessed to find our dear friends, Jared and Tamra, coming out of clinic just as we were walking in! They came and hung out with us while we waited for the nurse to come get Elizabeth's IV going to send a blood sample to lab for her type and screen. (We wait an hour after that is sent for the right blood unit to be sent up to the floor for Elizabeth.) Elizabeth hates having her port accessed and always opts for an IV when getting blood products. The oncology floor nurses almost never start IV's and usually call IV team, but for some reason they were telling her they couldn't get IV team and she'd have to use her port... Blah. Thankfully, our favorite nurse, Lauren was working that day and came to the rescue. Lauren convinced the "most experienced" IV nurse to try getting an IV on Elizabeth and it worked on the first try. She told us after that she hadn't done an IV in over a year, so we were glad it went perfectly! Yay for Lauren and this nurse! I am always thankful for anything that makes Elizabeth just a little bit more comfortable. Yesterday was more blood work and she just barely scrapped by on her platelets... Hopefully they have hit the low and are coming back up now. 🙏 Another medical hero of the week was Christina at our insurance company. Sorting out medical bills is seriously a (miserable) part time job. I was feeling really frustrated with getting bills for huge amounts I know that I didn't owe, but it's so hard to fight medical companies. I called our insurance for some help in one messy charge and Christina dug deep with me, spending over an hour getting all the documents straight and then called the medical office with me to inform them that they not only had been paid already by the insurance, but they had charged me over the allowed amount and owed ME money. I was SO thankful! I got Christina's direct line and she is my go-to person for medical bills now! A huge blessing! This morning we met with Dr. Anderson in Cleveland. I was a bit discouraged by the lack of progress on the clinical trial. Dr. Anderson didn't have any significant updates to share. I have been contacted by the lab saying that they had orders from Dr. Anderson, but Dr. Anderson didn't have any updates on the progress of where the lab work was at. He told us that he has submitted everything he needs to for the clinical trial and that we should "pray that all involved parties will quickly negotiate" because these clinical trials get stuck when all parties are determined to act in their own best interests. We will definitely pray hard... for Elizabeth and for all the other individuals suffering from this terrible cancer. We are trying to stay positive and focus on the good things that we can control. Elizabeth gets to go to Neuroworx tomorrow and we have some fun things planned this weekend before she goes back to chemo next week. Love you all! Thank you for the continued support and prayers!!!