Mayo prep and gratitude


We've settled into this somewhat new normal of food tracking, medication adjustments, and a variety of appointments.  We've made some dietary changes again and are anxious to see what his weight is on Thursday as I *think* he might have managed to stay the same--but I'm not holding my breath either!  

Tom has been trying to be slightly more active walking around the block or using our walking pad trying to get his energy and stamina back up.  He still gets worn down quickly after running errands or longer visits or appointments. 

Scarlett is having a new experience this week attending ISU Volleyball camp.  There was a ton of girls 8th-12th graders at check in and when I talked to her tonight, she's so tired and her feet hurt!  They played for about 4.5-5 hours today, she'll have 7 hours tomorrow, and another 4.5-5 hours on Thursday 🏐 It's a good thing she loves it and is pretty good at it!    

Some of you have heard Vivian started her training at ChildServe this past week and has been enjoying it.  It's been fun for me to see her starting in healthcare and help her navigate through some of the training systems, answer questions about what we do/how we do things, and see her grow.  She's pretty amazing!  

Tom and I have had a busy week with pre-check in visits with Mayo.  We've meet with the nurse navigator via phone to go over lots of details before our trip next week and then do a pre-op check in with anesthesia via telehealth.  Within a few hours of both visits, we already had visit summaries available in the portal for reference.  We are counting down the days and very excited to hear what Mayo says for next steps and a plan to move forward!  

We do have a small glitch and that is our insurance has given us a partial denial for one of the imaging scans ordered.  Dr. Truty had ordered both another CT and PET scan w/MRI--the CT has been approved, the PET scan was denied, but the MRI portion was approved.  At this point, the PET/MRI has been cancelled completely.  I have spoken to 5 different people in the last 2 days between Mayo and our insurance company to try to see if it can be approved still or appealed.  The surgeon had already submitted a peer to peer request that was denied a 2nd time. We did have the appeal paperwork sent to us from the insurance company that we can send in if we decide to.  We've also reached out to the surgeon's team for their thoughts and I spoke with the surgeon's nurse today.  At this point, they didn't feel like Dr. Truty was concerned about not having the PET scan for this visit as the CT gives them a better visual of the blood vessel involvement.  We did chat for a bit about potentially ordering a PET scan in the near future (he last one will be right at 2 months next week) so it may just be closer than insurance would approve.  She was planning to check with Dr. Truty, but feels like we'll have a good plan with his labwork, CT, and exploratory look around 😉

Genetics results came back today and we'll be getting a paper copy in the mail as well--but good news/bad news, is there's no genetic reason Tom got pancreatic cancer and all his genetic markers are clear.  So the girls shouldn't be a higher risk for any future cancers (or at least not from him)  

Beyond that--I continue to be amazed by the love and support we get from each and every one of you.  The calls, texts, cards showing up in the mail, things at my office, and showing up for us is overwhelming at times (in a good way) I included a collection of some of our cards below, including one made by the daughter of a friend of ours 💖 One of our neighbors has taken to mowing our front yard when he mows his, we've had several of you provide meals, gift cards, snacks, entertainment in the form of visits with Tom, and lots and lots of love.  We are so very grateful to you.    


                      
                                                                                                                                                                       
 



 
  

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