Updated: Dec 16, 2018
-- We are here --
Interim maintenance (2)
Delayed intensification (2)
Interim maintenance (2)
HOUSEHOLD, PER DAY
2 - rolls of paper towels we go through
3 - number of times we run the dishwasher
3 - loads of laundry
30 - average number of minutes spent tantruming (Thea & Siggy combined)
10 - times we fill the Britta
150+ - number of times we sanitize our hands. Source: parental perception inventory
HOUSEHOLD, PER WEEK
1 - 18oz hand sanitizers consumed
2 - number of breakdowns Mommy had
3 - repressed breakdowns Daddy has somewhere deep inside, we will find it
2 - pounds gained per week. Thea’s now 47 lbs.
THEA, PER DAY
20 - ice cubes for FRESH COLD water
8-10 - meals
10 - sausages
7 - cheese sticks
4 - number of times she has to brush her teeth per doctors' orders
Somebody likes to take selfies when mom and dad aren't paying attention
0 - lifetime count of Doritos consumed by Thea pre-leukemia
200 - current count of Doritos consumed by Thea
400 - lice nits found in Thea’s hair
14 - Barbie titles avoided in Netflix Kids (over 50 hours of primo content)
0 - number of thank you notes we've written
A gazillion - moments of support we’ve received deserving of heartfelt thank you notes
<0.01% - Measurable Residual Disease (MRD) at end of our induction phase
This Day 29 MRD is below the limit of detection for the test used. This is perhaps the most important lab result in our entire journey. The test used is called Flow Cytometry. It’s a rave for blood cells. Let me go out on a limb for a sec.
The cells have all heard about this act called FlowCyto so they queue up in a line waiting to get in. They are handed a variety of fluorescent markers (glow sticks, etc) and rush into the warehouse where they are illuminated with several colors of lasers from many angles. Leukemic cells are impaired and lazy and useless and only grasp onto certain color glow sticks, fluoresced by certain lasers. In Thea’s Snap story showing the crowd of over 10,000 ravers, no useless cells could be seen. When she started this journey, it was only useless cells in the picture.
Thea probably has around 30 billion white blood cells. Some of them are undoubtedly still leukemia cells trying to replicate their useless selves faster than normal cells, it’s just that we can’t see them. So now we embark on 29 more months of challenging chemo. The good news is that because none could be detected in this particular test, that fact places her in a more favorable risk group, meaning her chances of being both alive and cancer free when she turns 10 are now over 90%.
What’s on my mind is the debt we owe to literally hundreds of thousands of families who enrolled in cancer studies. In 1960, medicine could achieve a parallel outcome: They’d take a (much lower quality) picture after induction and find the crowd of cancer cells completely gone. Your kid seems cured. But then, in ~90% of those children, the unseen cells come back with a vengeance. These brave families agreed to something other than the best known medical result, in the hope of finding better outcomes. We owe those families.
Thea is now off the Dex, and suddenly our world is quite different. We have a window of good resistance to infection, meaning we can have play dates with healthy visitors, and THAT has been incredible. We also made the excruciating decision to change care teams from CPMC to UCSF. It was complicated and we very much love the people at CPMC/Stanford Childrens’.
We're wearing our masks due to the wildfires and trying to thrive indoors. Nonny made that easier with a magical visit from the REAL PRINCESS ELSA.