Updated: Oct 20, 2018
We'll start with, "Thank you". So many of you have met us right where we're at. As I write this, we're expecting to be able to leave the hospital early, just 8 days into our month-long induction phase.*
It's weird to accept. People send us incredibly kind messages and we commonly don't reply. We had to give up on keeping track of who's sent which gift to her. The gifts each chip away at her isolation, her 'roid-rage, and her boredom.
We must call out some support we received that we didn't even know could be given. If you knew your family would have to face childhood cancer and were tasked with designing two perfect friends, you would find you need to name one Sam and the other Veronica. You'd carefully select for the perfect mix of skills, prior experiences, composure, and oversized hearts.
We don't know how you do this without these grandparents. Grandparents who will drop everything and fly here so Siggy can relax within all the love and and attention she normally has. Our siblings have also been absolute heroes, even when confined to 1800 miles away and weeks until birthing twins. Calvin sends us videos to make us laugh. As we speak, uncle Mike is here with Siggy as Katie is home with their newborn. We have incredible siblings.
As parents it has been surprisingly difficult to communicate. Part of the problem is the nature of the communication required is so incredibly fragmented in topic and time, and part is becaus"NO. I want to SPIT at the nurses. I want to punch at them. I WANT WATER. I can't stop thinking about it, mommy. NO. GIVE ME FOOD. I'm not listening to any more of your stuff." This is all happening verbatim as I write and Rebecca lays with her. Only 90 more minutes of required abstention from food and water until she will be put under to get some medicine in her spine. This is not our daughter, this is an entity we call the Decamonster. It's Thea on Decadron (dexamethasone), a powerful corticosteroid that makes her explosive and hungry. This is next level hangry. Did you catch what we did there? How this paragraph started? Most inter-parental communication is an exercise in collision + retry.
The five drugs that will make up Thea's chemo were all used in the 1960s to treat ALL, at a time when the survival rate was under 10%. It's incredible that the same drugs, in different doses and timings, now produce >90% survival.
I'm sure there will be bad news in the coming days, months, and years, but for now we are feeling positive and functional (though it is by no means easy). We're buoyed by the lab results, the staff here including the incredible pediatric nurses, and the never ending support of you all. Speaking of...
Her disease-fighting blood cell count is actually zero, so we have to severely limit visitors. That means the highlight of a typical day is a video for her, texted or emailed to Rebecca. She's received quite a few "hope you feel better" videos, but here are some ideas for what really light her up:
The funny videos you have of your own kids doing everyday stuff (doesn't have to be recent)
Read her a book
Tell her a joke or story
Do a dance or conscript your kids to perform a show
Sing a song
Give her a tour of your room/house (don’t ask us why she loves this, nosy little thing)
Just be weird and make a drama out of the items on your desk right now.
She just woke up from sedation and ate half an avocado, 5 slices of bacon, 2 slices of cheese, 3/4 a bagel with cream cheese, an adult size slice of pizza, and two quesadillas with sour cream. I'm not even joking.
Thank you again for everything.
Rebecca & Jeff
* With this draft almost ready to send we just learned we actually need to be in the hospital another week. Thea is rightly pissed. Lesson learned: tilt towards delivering positive surprises, not expectations. We wrote this update in a way so you feel some of what the cycle is like.