Mar 12, 2016 (Sara)
Today was one of a kind. Maya has been more…shall we say playful? This is all very relative but I’m trying to be positive. She has requested visiting the play room more often and I think Bapa Pat read her at least 4 books today. She let me braid her hair again and we actually had a movie night tonight. While the last couple days have been mostly filled with lethargy and some tears, the days contained many sweet moments and some giggles too.
Auntie Megan and Liam came for a visit yesterday and Maya loved watching the boys play. Auntie brought some treats and food. Maya ate so much lemon ice in the hospital we all thought she would jump for joy with “auntie-made lemon ice”…well decadron had other plans…like crying. We re-named the Lemon ice “lemo-licious” but it still took some time for Maya to warm up to the ice. So weird how these steroids are. Tonight we requested not only auntie’s yummy soup but a big helping of lemon ice. I also enjoyed some (okay two servings) of lemon ice.
Back to today. Today was a lab day. I find myself living in a strange limbo: “lab day, no Lab day, no lab day, Lab day, no lab day…etc”. Then on lab days I’m glued to my phone waiting to hear from the clinic. Our new life is one that we cannot be surprised to hear we must spend our Friday evening at Renown getting a transfusion. But..not today.
Today Maya followed her amazing channel of greatness with strong lab results. All of her blood counts have increased and are showing wonderful “blood recovery”. This increase indicates that her bone marrow is clear enough of leukemia now that it can produce a more healthy amount of hemoglobin and platelets on its own. It’s fantastic news.
At first, I got pretty nervous to see the jump in blood counts. I just keep hearing the doctor’s voices in Oakland saying they were happy seeing her counts drop. That it means the chemo is working. The clinician in me knows that she probably bottomed out but the perfectionist mother in me wants to see zero or something. WBC @ 0.3 wasn’t low enough for me?!?! The natural optimistic mommy in me had to talk the scared mommy in me out of freaking that it might mean the chemo isn’t working.
The roller coaster is almost too much sometimes! I spoke with the clinic RN and she assured me that the jump in counts are exactly what we want to see at this point. Phew.
Her white blood cells (WBC) increased as well and contribute to an ANC of 588!!!! This is technically out of isolation! This means that Maya actually has some line of defense if needed to fight infection of some sort. This means the dragon is getting stronger and is harnessing her fierce fire. She has broken ground on her new castle and the scaffolding is set. This means mommy can take a breath too….
Motherly assessment: Hgb: 10.2, platelets: 105, WBC: 2.1, ANC: 588!!! Liver enzymes continue to be slightly elevated but stable. Appetite…still very good but I dare say slightly decreasing. Pooping is way more frequent and appears comfortable…though with as much food as this child is consuming, I wish it was 5 times a day (yep, I went there…Imma dietitian). Belly continues very distended. The last girth measurement I took was 64cm. This is a 5cm increase. Her face fills out more and more each day. I ask her every morning if she is “full moon yet?” And she says no. We are really looking forward to a nice long break from the decadron. The picture i posted is our MAR… medication administrations record. I don’t know how other people keep track. It is hard.
We are so happy that she is going into the weekend and her procedure with these numbers! Now we want some good news next week too!!!
P.s… I texted with Heather. Alicia’s mommy. Wonderful news came from their world. Alicia’s results showed that she had 0.01% leukemia in her blood. This means remission with standard risk! Im sure they are all celebrating this weekend. I certainly celebrate for them.