Mar 1, 2016 (Scott)

Today was our first visit to the Reno clinic for blood tests, chemo, and a transfusion. We arrived at the clinic just after 8am and were headed back home about 330pm–a very long day for a little girl on a variety of drugs including a morning dose of miralax and colace.

Not long after we arrived, Maya’s buddah-button (meta-port under the skin on her chest) was accessed. This looks a bit like being stabbed just above the heart with a two inch long curved needle. I’m thankful Maya couldn’t tuck her chin down low enough to watch–I sort of wish I hadn’t. The upside is that all the blood draws and IV drugs can go through the port, and the ‘pokey butterfly’ need not make a visit.

The blood test results were about as expected–ANC around 50 and hemoglobin at 9. Platelets were also low, in fact listed on the report as ‘panic low’ at 2. We’re thankful to all the blood donors out there–within a few hours United Blood Services had delivered a platelet transfusion that brought Maya back up to a more normal range. We’re entering the third week of treatment where, if all goes well, we might begin to see Maya maintain or even improve some of these numbers.

Today we were happy to finally meet our Reno Pediatric Oncologist, Dr. Salo. She was helpful, reassuring, and Maya was comfortable interacting with her. We talked a lot about the more troubling side effects of the drug therapies like belly distension, pain, constipation, stratospheric appetite, and general surlyness. What worries me most is that these effects are described as ‘cumulative’–through two more weeks of induction therapy, daily Decadron and weekly Vincristine, we may see the severity increase. Overall though, Maya is handling everything very well. She’s strong enough physically and mentally to handle the next two weeks; our challenge is to ensure Sara and I can match her fire.

We started on Beads of Courage today. Kids get a glass bead for each obstacle (treatment, procedure, pokey-butterfly, test of courage) they overcome. In filling out the chart with dates and details (pictured above), we discovered Maya had already earned 79 beads. Kids ought to get a medal for working though something this tough, and this way they do. While we waited through the treatments today, I read about a little boy named Dawson who was born with two types of cancer; he was known for consistently coming out of procedures at Oakland Children’s Hospital with a smile on his face. Dawson earned 397 beads before his first birthday.

I’ve said it before–I’m eternally thankful for all those who work tirelessly for the health of all these kids and the care givers everywhere who ensure that no matter what happens, these kids don’t have to be afraid.

I also read that each year around 10,000 kids need a bone marrow donation. Only about 5,000 get one.

A quick thank you to the staff at the clinic, the infusion center, and the kitchen at Renown. We were there a few more hours than expected today, but they all went out of their way to make us feel welcome and comfortable. Maya sampled (voraciously destroyed really) a good portion of the menu offerings. She particularly enjoyed chicken fingers, fries, spaghetti, fruit, pizza, pretzels, juice….

A huge THANK YOU to Nature’s Bakery, the Marson Family, and the Carson Aquatic Facility for amazing generosity. Nature’s Bakery’s delicious fig bars have been a staple in our pantry since Maya was very little; it’s great to have such a wonderful business with wholesome products as a member of our little community, and we’re grateful for their contribution to Maya’s fight. Some years ago, Sara and I met while working at the Carson Pool (nearly twenty years ago yikes). Even after so many years, the place, the people, and the relationships we’ve forged there still continue to sustain and support our little family. Recently my idea of what is family has undergone a significant transformation. Thank you all for caring for Maya and for helping us like family.