Day -1 am

On the scheduled for today is a lumbar puncture to check and see if she’s got leukemia in her spinal fluid. She’s also getting an bone marrow aspiration to check her current burden of disease. Finally she’s getting a PICC line placed so that the infusion and any rescue meds can be administered more effectively. Besides that she will just be chillin and recovering from the procedures.

We were told there was a chance the PICC wouldn’t be placed in the OR and might be done bedside. Becky our nurse told us it would be better if she didn’t go first thing as there was a great chance it would be bedside verses in the OR. So I went to bed knowing it would be an early morning, but prayed it would be too early.

Around 8 this morning our nurses Cailey and Jennifer came in to tell us it was time to get ready to go. They said that the PICC nurse would be up shortly to have consents signed. Huge sigh relief.

They took her back around 9:40 and just finished up around 11:40. While we were waiting my friend Tina, from Rock View came to hang with Kevin and me. She brought up a goodie basket from my friends at Rock View and helped pass the time. It was a nice distraction to have someone different to talk to while we waited. We’re also lucky our friend Kristen was able to bring Ellie up to for visit for a little while. Of all the kids she definitely misses having us at home the most.

When the PICC nurse came out she told us that they had some trouble placing the PICC in her left arm as planned because as they made it towards her shoulder there was some kind of obstruction that wouldn’t allow the line to pass. They’re not sure if it’s a blood clot or scar tissue. They don’t seem very concerned since she’s still on Lovenox and they were able to get the PICC through the right arm. About half an hour later Dr. Dunkin and Dr. Rabach came out to let us know that her spinal fluid was clear and the bone marrow came out nice and bubbly. Hopefully these are good signs that she still has a low burden of disease.

Our plan for the rest of the day is to spend some time with Ellie and keep AJ comfortable. I’ll try and write a post tonight about what we expect with tomorrow’s CAR-T infusion and all the things we’ll be on the lookout for over the next ten days.

Thanks for all the prayers. Please keep them coming.

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