August 22nd, 2017 (Scott)
As of this week Maya is back to school, and the only way to really accurately describe her excitement level is, F#%$ING STOKED!
Maya has always loved school– she started before she was two years old in Miss Sally’s class, and the songs, routines, and relationships quickly became part of her identity. We’ve made many difficult changes during Maya’s treatment, and taking her out of school just as she turned 3 and joined the ‘Rockets’ was among the hardest– it’s just that important to her, so Sara and I are glad to be able to add that component back into her world.
Over the weekend, Maya got her first taste of back-to-school shopping which was off-the-charts awesome. She was allowed to pick out quite a few things on her own which led to some interesting results. She left the house excited about seeing the special “room at the store where they let you get naked” (dressing room), and she returned with an alter ego (see picture below)… that’s Fireflash… well actually it’s Fireflash Josephine Morrison. Anyway, Fireflash rocked that first day back at school like a superhero should… sparkly gold shoes and all.
Returning both kids to school is also unmeasureably stressful for us. The kids are handling everything fine– the normal sniffles (no fevers) are coming and going as they adapt to a more biologically diverse environment. For us, I think, it’s hard to break away from the safety and the routine of the home/bubble. As with any of the transitions we’ve faced along the way, we will adjust here too, and we will handle what challenges come our way together.
Maya’s most recent trip to the infusion center was just about a week ago. She hadn’t been for more than a month before that, so we prayed for ‘no surprises,’ just strong numbers. And for the most part that’s what we got– good counts for platelets and hemoglobin, clean liver function too. The one worry was that her ANC was higher than we’d like for Maintenance– around 4500 (we’re aiming at closer to 1000). There are a number of reasons this could have been high– fighting the new bugs that little brother brought home from school could do it, or the current dose of 6mp might be too low. Most likely it’s a combination of things, and I have to remind myself often that as we try to regulate and monitor her numbers, Maya is growing and changing before our eyes. She’s adding height and weight, her activity levels are increasing, and she’s going more and more places as we continue to expand outside the bubble. So, we are patient, and we take adjustments slowly– we’ll go back in a week for more labs and consider tinkering with dosages then. For now, we value the strength and energy our little dragon uses to re-engage at school, and we revel in the ease with which she adapts back to that environment.
Maya’s treatment end date remains at April 21, 2018– a date so near and yet so far. We have started to turn daydreams of celebrations into plans, so please keep your ears open for information on our ‘Aloha Chemo’ party (that’s the ‘goodbye’ aloha). We look forward to honoring Maya’s strength and the power of an exceptional community that has supported our little family through it all.
Good health and peace! Thank you.
This brings tears of Joy to my eyes, I’ve always said no news is good news and really the fact that your blogs are not coming in, one on top of the other is a blessing. I know I have hung on to these updates, I”m sure the same as everybody else, they have kept us connected. Sometimes it was a big “put your shoulders back” and read with hope. Then say a few prayers, but these last updates fill me with more happiness. Happy that you are feeling a little normal in your lives, Happy that Maya and Linco both are in school, and most of all, Happy and Grateful that I know one of the most inspiring families in Carson City. Love and white light.
Comments are closed.