Dec 21, 2016 10:08pm (Scott)
Today we started our third month of maintenance and another five days of steroids. Sara and I are getting used to the symptoms now–extra sensitivity, enhanced appetite, sleeplessness and sleepiness. These five days will be an adventure, but we’ll all be together with the holiday cheer as a welcome cushion.
Today Maya got another dose of vincristine, oral methotrexate, decadron, and sometime later in the evening she will have her her daily ml of 6-mp. She handles taking all these meds like a champ and rarely complains. Bowel care becomes a special concern when layering all these drugs together, so we often give miralax and colace (which is just awful… imagine grapefruit juice and baking soda shaken together with dish soap and some cheap scotch).
It would be easy, I think, to let all these procedures and medications, their schedules and their side effects take center stage in your life. But Maya moves past them like mile markers, focusing instead on the experiences with the people that color her daily life.
There’s power in community, and it isn’t just the security of the helping hand. There’s power in seeing those you trust and admire work and dream and achieve–power in wanting to be part of the strength that allows for achievement. There’s power in continually meeting new friends and families who overcome challenges in the same way and bond together to improve the lives of those around them.
Today we met a young woman named Marin who, along with her brother, had decided to donate some of their own prized possessions to the kids at Renown. Maya received a baby Rapunzel doll (she’s sleeping with it next to me as I type) and a treasured princess book which will be carefully placed in the ‘library’ next to her bed. It’s inspiring to see kids exploring the idea that their most valued possessions might be even more fulfilling in the hands of others. Thank you, Marin, for taking this step. In doing so you expand your community, strengthen yourself, and strengthen those around you.
Tonight the WNC Community said goodbye to a dear friend, Prof. Renee Magrini, who passed away on December 8th after a long, courageous battle with cancer. Renee was a very private person, but she made strong connections with people, and she empowered students (including Sara) to strive for their goals in the sciences. Renee reached out to me early in Maya’s treatment encouraging me to embrace the support groups at the children’s hospital. She said, “It’s hard to explain, but if you go, you will see that it will make a big difference to talk to “people just like me”. It will make you stronger to help [Maya] through the road ahead.”
It’s about the people–Renee knew that, and Maya seems to understand it too. Thank you all for being there–for being a community with so much to celebrate. Warmest of holiday wishes, and merry Christmas to all.