Apr 14, 2016 10:57pm (Sara)
We have been taking advantage of this week and loving it. The weekend with a belly bug definitely made for some really poopy times…but it was really pretty short lived and we got to move on. We have had some wonderful things to celebrate (Happy Birthday BaPa Lance!) and Maya has been feeling awesome. This week Maya tried lobster for her first time as we enjoyed celebrating BaPa Lance’s 70th. We are so thankful for the great food, great wine, great company, and great spirits! Plus we enjoyed the world’s greatest key lime pie (thank you Chef John at Glen Eagles). It was all wonderful…in reflection, it is very good timing that we did not introduce lobster to Maya during induction phase when she was on so many steroids. I would have needed a second job to cover the grocery bill!
We are closing in on the last of days of Consolidation. We had no lumbar puncture this week. When Dr. Salo called this phase “wussie-chemo” I never knew I would appreciate it as much as I do today.
Maya did have to endure an arm poke yesterday. It has been a while since she had a peripheral lab draw and unfortunately…it didn’t go so strong and calm-ly. It was more strong and dragon-like….fierce. It was actually a little more heart breaking than I thought it would be.
We brought Lincoln because Maya wanted to show him how strong she was. Well… the phlebotomist used a different style of needle. There was no pokey butterfly and that (I think) really made her uneasy. We always try to prepare her for what is coming and we had talked about the pokey butterfly, not this weird looking large needle thing. The phlebotomist said it is sharper and works better but…Maya jerked away and made every one a lot more on edge. We had just told this woman that Maya is fine and she didn’t need to bring in an assistant. Maya finally let Scott and I hold her arm (we hate restraining her) and Maya looked into Lincoln’s eyes as she yelled “use my Boodah button!”. In hindsight, I’m not sure if it was a good idea to bring Linco. He watched her get her IV placed in the ER and now…well shit, we might just be traumatizing him. He seemed fine. I think he was actually happy to be with Maya. It’s really hard to know what to do with this whole situation…and how to parent in between these wild experiences.
After the poke, she was 100% fine. In fact she really enjoyed handing out her orange Maya bracelets to some of the staff. It was pretty cute. I always wonder what they think about this little girl coming in sometimes weekly, sometimes cancelling. Daniel (one of the phlebotomists) is very nice and I think knows she has leukemia because he drew her blood when she had all the bruises. But really, I doubt anyone really knows the story behind the girl with the thinning hair, wearing a hello kitty mask.
Even though the arm poke really sucked, the lab results were great! Dr. Salo gave us an option to skip labs this week but I cannot imagine not having any idea of where she is. Her numbers swing drastically. One week we saw her ANC drop from 5000 to 1030. It’s really enough to make a Moma (and daddy) crazy.
Recently, I find myself telling people “we’re trying to hold on to these great days…” when they ask how Maya is doing. I don’t mean to be sad about it. It’s just that reality is that these weeks are probably the best we’ll have for a while and we want to breathe them in as much as possible. We want to breath them in so that they might sustain us in the coming weeks. The coming months. I know I will need to pull from the stamina we feel now. So I take a lot of videos of her running.
This summer will be like no summer I’ve had. I’ve had wonderful summers. So many I can’t even really pick my favorite. I spent summers riding my bike all over the neighborhood I call home today and countless sleep overs with my best friend, April (we lost at 14 years of age from a brain tumor – glioblastoma…but that is a very different journal entry). Some of my favorite days were during summers lifeguarding at the Carson Aquatic Facilty where I met my amazing Love, Scotty. One summer I lived on Kauai with my girls Megan and Nikki. That summer gave me so many life lessons and an amazing amount of fun. I’ll never forget summer’s in Los Angeles riding my bike with Gen and Megs to Venice beach for happy hour. Or taking myself to Dodgers games. One summer I got married…on the beach…in Hawaii…and spent 3 weeks on my favorite spot on Earth with my favorite person. Summer of 2012 I spent feeling kicks and flippy doos of my little dragon baby moving and dancing while wading in Lake Tahoe. Summer of 2013 I spent in my life changing dietetic internship. Summer of 2015 I spent nursing my baby boy and fingerpainting with my little dragon.
This summer will be different. It will be trying but I have faith the Dragon will keep us flying. She is amazingly strong and I know as difficult as this will be, we will get through it and it will be one of those “summers” I reflect on. Maybe it will end up being my favorite. Maybe it won’t but at least I know it will eventually turn to Fall. The leaves of this phase will turn and eventually fall to grace the ground with burnt orange and maroon …then blow off in the wind.
Motherly assessment: Hgb 11.9 (almost normal!), WBC 4.1, platelets 408, ANC 2600. She still has the moon face but is doing amazing. She runs. She dances. She sings. She plays. She cries. She jokes. She throws 3 year old tantrums. She learns. She loves. She flies. Love is life.