Nov. 12, 2016 326pm (Scott)
Since we began Maintenance at the end of October I’ve been searching for perspective on just how long these new routines will be in our lives. The final phase of treatment lasts eighteen months; Maya’s end date for chemotherapy is April 21, 2018.
Every evening from now till then we will give her one ml of 6-mercaptopurine; every seventh day five and a half tablets of methotrexate; every weekend four doses of bactrim; every thirty days a regimen of steroids over 120 hours; and once a month a lumbar puncture with intrathecal chemo. Just that, ring a bell, and we’re done. There is, of course, what comes next? But I think I’ll save that for the spring time.
Through the first eighteen months of her life Maya did quite a lot, as a busy-bodied first-born will tend to do. She sat up at 4 months, noticed she had a dog at 5, ate avocado at 6 months, and said Dada at 7. She crawled up the stairs at 9 months, danced with Mommy at 10, and on November 11th 2013 at just under 11 months she walked across an entire room (I have the video to prove it). At 15 months she had 75 words, at 16 she said Go Dodgers! (good girl!) and counted to ten, and by 18 months she had figured out singular vs plural. Over that short period of time she was also able to surgically unravel the finely tuned sleep patterns Sara and I had worked decades to perfect.
So we find ourselves together at the start of another very formative eighteen months of Maya’s life. I like to imagine what she’ll be like at nearly five and a half years old!
Our maintenance routines are developing well; it looks like we asked enough questions and spent enough time brainstorming to find the timing that will fit all these new requirements into our family life. Maya has been consistently spreading her wings with playdates and even a visit to the theatre to see WNMTC’s production of The Little Mermaid. Thank you Stephanie and WNMTC for making a dress rehearsal as magical as the real thing.
There are still daily challenges with constant worries about fever and constipation. Maya experiences tingling and pain in her extremities which is a common side effect of vincristine and probably some of the other drugs; this is especially troublesome at night and often wakes her up. There are times every other day or so where it’s clear she just doesn’t feel good–fortunately all it usually takes is a movie and some snuggling on the couch to work through it, and her energy returns later on.
Overall our little dragon is handling all of this as well as anyone could hope. She’s focused on growing up, being a kid (actually a threenager), learning, and having fun with her family–especially her best little buddy, Lincoln.
Thank you, Everyone, for your continued care, support, and love. Eighteen months is a long time, but it seems like we got here in the blink of an eye. Our world has changed and will continue to evolve; may we all remember to let kindness and love take the lead. It is what’s brought us this far. It is the only thing that will take us further.