December 1, 2014


Interim maintenance

We are on to step three of six! We are currently waiting for Scarlett’s counts to recover. Her ANC must be above 750 and platelets above 75 to continue treatment. Last Friday, her platelets were at 40 and her ANC is down to 68. So now we wait…

Everyone told us that the first cycle was the worst. The prednisone just sucks. The newness of the diagnosis sets on you. But it seems to me that every step seems to get worse for us. This last cycle (consolidation) was really hard with that infection that forced her into the hospital for two weeks. The second half was transfusion after transfusion. Now the challenge of scheduling is going to hit us hard.

Interim maintenance is divided into two options. Studies are showing a slightly (very slightly) better outcome with the “high dose methotrexate” arm than the “capisi” arm. So we chose to proceed with the HDM protocol. The down side of this is that Scarlett will be admitted to St. V for 4-5 days every other week for eight weeks. She will have lumbar punctures with intrathecal methotrexate every other admission. She will also get vincristine and leucovorin. She will take oral chemo (6-MP) every night for the entire eight weeks. The goal is to destroy any leukemia cells remaining in her blood or marrow.

It will be an extremely difficult eight weeks. Our plan was to delay treatment for one week so that she would be home for thanksgiving and Christmas. But, as we know all too well, things don’t always work out. Based on her labs on Friday, we are doubting that she will be ready to go this week. If she starts the week after that, we are back to being in the hospital for Christmas. Luckily, our kids are too young to really know when Christmas is so we could potentially postpone it a week of we have to. One day at a time. Although I can’t say that I’m not counting down these eight weeks and marking the calendar. I will appreciate boring old normal days for the rest of my life!

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