Daily Dose: December 30th, 2020

I’ve decided to combine our CaringBridge updates and my blog posts. In some ways they feel very different. Caring Bridge being a more detailed account of facts and updates, the blog being more of a “this is where Betsy is currently at in a emotional way.” but the truth is, they are both the story. And I find myself spending too many cycles trying to figure out where to put what information. Is this a factual update? Or is this a story of what is coming to pass. Turns out, most often, maybe always….., it’s both. So I am going to have this section of the blog be for the updates, the dairy, the journal, if you will.

Here is the latest and perhaps last Caring Bridge Update.

There is still a lot of red tape/ insurance stuff/ study details to wade through but we are slowly and surely moving towards the CHOP trial. We are hoping that insurance will be approved within the next couple weeks at which point we will schedule a visit to CHOP to sign consents, meets docs, etc. In the meantime, both teams (at our home hospital and CHOP) have decided to go ahead and start one aspect of the process here locally. Next week the team will collect Beaudin’s t-cells for modification back east once things are approved. There are a handful of facilities capable of doing this procedure, and since Children’s Colorado is one of them, they were comfortable to do this part of the process now.

Moreover, if CHOP for whatever reason doesn’t move forward, we will need this same thing to treatment in Denver. So either way, it’s the next step. It both feels good to be moving forward and equally as scary as it feels like it makes things more real. No turning back now. Not that there was any turning back before this, but it feels more actualized when we have appointments on the books and are not just hearing the overwork, but actually reading the fine print.

 We are meeting with the apherisis team (tcell collection) tomorrow to assess the best access for Beau- pic Lines, powerwand, standard IV. Then next week 1/5 we have a host of appointments, a full day, with our team, the Bone Marrow Transplant team (that’s what this procedure falls under), he has to have a new ECHO to check his heart as a condition for entry into the study, etc. lots to do. If and when we get in to the study, I’ll detail what we are doing. It’s actually quite amazing science that we feel honored to move forward.  Then on 1/7, we will have the t-cell collection which is a long day, completely dependent on how things go but between 8-15 hours. Also depending on how things go, we will have to go back 1/8.  

Then, he will have interim chemo to keep things, and by things I mean cancer, manageable until we can get a spot in the study- slated roughly for mid-March.  Then 6 weeks in Philly. Or something.

Planning that far out seems laughable at this point. So I zoom back in, we have an appointment tomorrow, 9am, to assess Beau’s  veins. Daily bread. 

Beau continues to feel great and I continue to feel like I’m living in an alternate universe, talking through the procedure for a bedside pic line placement on the phone with nurses I’ve never met, while Jude chases Beau around the living room with a nerf cross bow. It’s odd. Alas, here we are. 

Please pray for peace for Beau coming up. He has grown bravery than imaginable since this all started and also love his routines. The next chapter will be filled with firsts and our prayer is that he move into this new land of unknowns with bravery and peace. He is nervous about his appointment tomorrow because he wants “nothing going in and nothing going out!!” In regards to his veins, which he told me giggling, and then went and hid in his room for 30 minutes.    

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