Mar 31, 2016 12:30am (Scott)
Consolidation is a little like the ‘eye’ of the storm. We’re into the second week having completed two lumbar punctures with intrathecal chemo therapy and daily doses of 6-MP. None of the current therapies seem to be causing unbearable side effects, though Maya’s hair loss has accelerated–mine probably has too.
Today’s visit to the clinic was as smooth as we could hope. We arrived at 830am and were leaving just after noon. Maya walked from the clinic to the elevator, down a flight of stairs, and through the gardens in the middle of the medical campus. Her energy has started to flow at a more normal rate, and her desire to play, explore, and create is quickly overtaking her sense of being sick.
We met with Dr. Rafael today who was covering for Dr. Salo. We were all chatting when Maya’s morning labs came back: WBC total 7.3, hemeglobin 10.1, platelets 495, and ANC 5000. . . five thousand? Dr. Rafael looked up and quickly assessed the dumbfounded looks on our faces. . . “This is what we want,” he said. “These numbers are normal. What you’re used to is not normal. This is exactly what we want to see.”
Works for me. Five thousand, you say? How about Disneyland?!
We didn’t actually head to Disneyland, but we did do the next best thing around lunchtime in Reno… we ate at Taco John’s. We ordered food, sat in a booth, ate potato ole’s and nacho cheese and laughed and played. We also began to plot other ways to take this good time to widen out Maya’s world–within reason of course. We might even take her to see her first movie in a real theater.
Today we met another northern Nevada family on our same path. Their little boy is one month older than Maya and was diagnosed with B-cell ALL at Oakland Children’s Hospital six days after Maya was. We were there at the same time–probably passed each other in the hallway a number of times suffering the same blinding, oblivious haze. They are one week behind in treatment, standard risk, and plodding along with many of the same questions and concerns we have. It’s nice to be able to offer support, even to ‘talk shop’ about the day to day struggles, worries, fears.
The path of treatment is highly programmed, and the pacing is very specific, but the nuances of the ride down this long highway can make a world of difference. It’s shocking to me that my little girl can gain a third of her own weight in a couple weeks and eat like a bear coming out of hibernation while another little guy her same age can handle 28 days of steroid therapy without gaining weight and never suffering much change in appetite or appearance. I’m coming to learn, though, that the smoothness of the ride is not dependent any specific side effect or bit of forward progress or momentary breakdown. This is all about working through fear–so you can understand what the medical staff is saying, so you can communicate back in the way you intend to, so you can hear your child talk about her own fear and you can think clearly about helping her to work through it. And if that fails–and at some point it likely will–it’s about having the strength to hold the arms and legs of a panicked, terrified, screaming three year old for a blood-draw or port access… two or three or four times in a day.
I’ve said all along that Maya’s strength makes me strong enough to handle this. And I know we’ve raised her to be strong and to be conscious of what she does and why. This has led to her ability to hit these challenges head-on. But her ability to overcome fear is unbelievable. And I am eternally thankful for every bit of life and love she’s experienced in her 3+ years that have allowed her to be the unstoppable force rolling us reliably down the road.
Thank you to our family who’ve helped shape Maya’s trust and image of love. Thank you to her friends Sally, Marina, Andrea, Erica, Chelsea, Angelese, Swayzee, and everyone at the WNC Child Development Center who have expanded her world and provided a nurturing platform on which to grow. Thank you to all our friends who are really more like family–Maya’s extended aunts, uncles, and cousins who she brings up often in conversation and who color her world with personality. And thank you to our community–you have lifted us up so that we’ve never felt the unbearable isolation of going through something like this alone.
Tonight our prayers focus on strength and love for the Correlli Family of Carson City. You are held in very high regard in this community; your loss is ours too.