August 15, 2014


Day 7: a different zero

I know that we promised everyone bone marrow results but the new doctor has a new protocol. Instead of a bone marrow, they did a lumbar puncture. Still news, just not the one we were looking for.

We met Scarlett’s new doctor. He was very nice and patient as Scarlett was not in the best mood (the fact that she has to wear pull ups again is less than thrilling for her). We discussed her protocol and the plan for the next three weeks. Her platelet level was low, which increased her risk of bleeding so she had a transfusion. The doctor then performed the lumbar puncture and infused another dose of chemo straight into her cerebrospinal fluid. After she woke up, she got her 2 chemo meds. The results of the lumbar showed that she does not have any leukemia cells in her spinal fluid. So we still got the “zero” that we were hoping for!

We were pleased with the change to St. V. The first person we met in the waiting room reassured us that we’re making the right decision. The nurse was very nice and spent most of the day with us. One of the benefits is that Scarlett stays in the same room all day. She gets her medications, infusions and procedures done right there in the room. And Brock and I are able to stay with her through all procedures. The clinic is small so we will meet all of the doctors and nurses.

We are very much looking forward to Scarlett finishing her prednisone. She has been quite crabby lately. She was so upset today (over nothing) that we had to regress back to her nunnie. There are times when she can’t seem to sit still and she sweats all night. Her cheeks are starting to get rounder (although she has always had chubby cheeks) and her belly will get nice and round too. But if it helps her kick this thing, we will deal with all the side effects.

She is such a great patient. Every new doctor or nurse comments on how well behaved she is during procedures. She studies everything they do. She likes to take her own temperature, take off her blood pressure cuff and watch her IVs and blood draws. Except for her one meltdown she is the ideal patient!

We will get a bone marrow next week for sure. I was finally able to ask what her initial bone marrow results were. I needed a starting point to know if/how well she is progressing (back to that gratification thing!). At diagnosis, she had 24% leukemia cells in her bone marrow. After asking where that is on the spectrum, the doctor said that normal is 0-4% and he has seen patients with 100%. So I guess comparatively, she started off in a good place. Now I know where she started so I can see how far she has come. We can already see progress in that she is walking with very little limp and she is using her arm again without even thinking. Even without test results, we can see progress.

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