Up and Down

Well, 3.5 days into the 5-day steroid pulse, and we're feeling it. But, all in all, it's going quite well. Mollie's energy level is up and down and she's having dramatic mood swings. Everything about her can change (and does) at the drop of a hat.

It seems like she really struggles to express herself while she's on the dexamethasone. Sometimes she's full of insight, and then a few minutes later she's trying to explain something she can't find the words for. From there, it's a downward spiral.

I am really glad my mom is here to run interference right now. With Lucy teething and Mollie's moods, the days are really challenging.


It is official

Today is Day 1 of Interim Maintenance (IM). Mollie is "scheduled" to be off therapy 2 years from today. I can't look that far ahead yet, but it feels good to know that we've come far enough for the doctors to already be mentioning the end of therapy.

Clinic went well but we had a long wait. Mollie was walking all over the office today, chatting everybody up. Matt remarked that when this all began, and Mollie was very shy and defensive around the medical staff, that Dr. V said, "Just wait a few months and she'll be running around here like she owns the place." So true.



Tomorrow (Weds) Mollie starts Interim Maintenance (IM) if all goes as planned. No spinal tap (yay!), but she will get IV and oral chemo, including methotrexate by mouth. This will be her first time taking oral methotrexate so we don't know how well she will tolerate it. She will also start a 5 day "pulse" of steroids. This is basically going to be a little taste of the long term maintenance (LTM) regimen she'll be on for about 2 years.

Consolidation was a breeze and we are hoping Mollie will tolerate this next phase just as well.

Requests: The child life specialist at the clinic said that she has a hard time finding "girl" toys to keep available because 1) they need to be able to be sanitized between kids (so no soft surfaces or wood) and 2) they can't be choking hazards. She's found a couple of "Dora" toys and Mrs. Potatohead, but not much more than that. Any ideas?