Saturday, October 17, 2020


It can’t possibly be ten years. 

Ten years ago, we walked into the hospital to have a baby. Nothing has ever been the same.

Ten years ago, I knew so little. Yes, about cancer, about parenting, about chemo and therapy and IEPs. But about me. About us. I don’t even know who we were back then. I don’t remember how I thought or what was important or why we did anything. I know it was me, I remember the events, but to look back and think about what has happened over the last decade is only to say we have transformed.

Ten years later, Scarlett has made us into so much more than we would have ever been. She has forced us to grow, to consider, to prioritize, to imagine. She has brought us the most profound challenges and the most epic rewards. That baby from 10 years ago was the tiny seed of a life that we could not have envisioned, and together we have grown stronger and more powerful than we ever could have been. 

It’s always interesting to read what I wrote before (another two years, oh well). As far as we have come, we always seem to be in some of the same places. She is healthy, 7 years off chemo, and more independent than ever. She still loves many of the same things - dressing up (though she prefers jeans and a carefully-chosen top to dresses), dolls, and Shakira. She has left behind princesses and Mickey for Pokemon, which she discovered entirely on her own thanks to her adept control of Netflix. She is still hilarious and loves anything silly. She is loving and sweet, even though sometimes it is hidden under some less-friendly behaviors.

There is an endless list of challenges that we face day-to-day, month-to-month; we are learning how to adapt our life to her needs rather than wait for her to change. She still wakes up incredibly early most days. She still runs as fast and as far as she can at the first opportunity. We have added alarms, taller fences, cameras and locks and still check and double check her location every few minutes during the day. She is still taking medication to help her brain attend to surrounding stimuli and also to bring more impulse control; they don’t really make much difference, but we haven’t given up. We have added a behavior therapist to her team, but we have had a terrible time getting a regular provider with the appropriate skills to actually be helpful, so we’re waiting for yet another to get up to speed.

Her speech has improved since we have been home together more. She uses many more complete sentences - “Do you want to play with me?” “I have a present for you!” “What are you thinking?” - but often still babbles and needs one of us to help her communicate with anyone else. We are seeing improvements in her fine motor skills, and are always looking for ways to keep her physically active. Her preference is always to snuggle, listen to music on her tablet or play with toys on the floor. 

School is a work in progress always. Pandemic aside, we moved her to a specialty program that we had hoped would be good but we are increasingly concerned about the lack of support. I don’t know what will happen, but at this point, it does not matter much, since we aren’t in actual school right now thanks to that rotten little virus. I feel like we’re out of options at this point, so we are just waiting out the school closures and hoping for the best whenever we get back to school.

At her last annual MRI (all clear!) we discussed with her doctor how challenging it is to explain and categorize Scarlett’s needs the further we get from diagnosis and treatment. She said we need to start looking at more resources and support as a Traumatic Brain Injury (TBI) than brain cancer. Scarlett’s needs at this point and moving forward are as much or more related to the stroke she had in surgery and the physical damage to her brain from the tumor’s position and rapid growth than from the tumor type or the chemo. This is a whole new ball game that we have not really explored. I assume there are a lot of crossovers, but it hasn’t been a good time to delve into a new project just yet. 

We are in the process of moving nearly all of her medical support to UCSF from Stanford. They offer a much more comprehensive after-care program that we just were not getting. If nothing else, we are hoping that new eyes and ears will try new things and help us problem-solve some of the lingering issues we have been dealing with for the last several years. Most of the appointments we had to move this process along were cancelled for COVID and have not been able to be rescheduled, but we are in the process of sleep studies, new neuropsych testing, medical speech therapy and more. Hopefully things settle down enough that we can get back to our regular schedule of appointment after appointment.

Then, there’s the rest of us.

We adopted Benny when he was 3.5. He is now 5 and started kindergarten. He is just the coolest. He loves Hot Wheels and reading, and anything he can push buttons on or take apart. He is a sweet and gentle kid that asks a constant stream of thought-provoking questions that I can never quite keep up with. 

A few weeks after his adoption was finalized, we were feeling good. We were ending the holiday break from school after our first Christmas as a family of 4. We had a short, casual conversation about how the ups and downs of fostering had been so worth it, and maybe we would try again some day.

Days later, a call came. We ignored it at first - why would the social worker call so late? Must be a mistake. And then we heard a message in the morning to call right away. I headed to work while Chris returned the call…

A healthy 2 day-old baby girl needed to go home with someone that day. Could we take her?

And that’s how Everly came to us. We had about 8 hours to get ready. We had gotten rid of all the baby gear, passed on all the clothes and toys. Friends from work ran to grab things from their garages. I stopped at Target for a few staples. And she came home at dinnertime.

Scarlett and Benny did not get much chance to adjust to the idea of being a big brother and sister, but they adapted really well. We all just made it work together. We had trips planned, so she just came along. I didn’t really have time off available, so I worked with a newborn at home and the big kids to manage. And it was all fine. We had several months of unknowns as we navigated the foster system with her; it was very different than our previous experiences. However, the decision was made that she would stay and we jumped at the chance to finalize her adoption as soon as possible.

And now she’s running, jumping, talking (and screaming!). She is almost 2, and hilarious. She knows EXACTLY what she wants (Elmo!) and what she hates (bed!) She is an amazing, tiny firecracker that keeps us all on our toes (a lot like her big sister!)

Chris started a new business in the midst of the pandemic. He is using his acquired skills around supporting people with disabilities to become an independent facilitator for CA’s Regional Center clients. He helps families like ours fight for budgets and services that will improve the life of their disabled family member. He has more clients than he can manage on his own, and has been bringing in new people to train and help support the ever-growing need.

I’ve been teaching from home, or from an empty classroom, since March. It’s been nothing short of insane relearning everything I have ever done as a teacher. It’s leveling out, starting to feel like some version of normal, and likely to continue through the new year at this point.

Chris and I both volunteer with the Pediatric Brain Tumor Foundation as parent mentors, trying to bring a little light to those who are still walking in the darkness we have been through. I meet parents of new kids diagnosed with the same tumor every so often, and am shocked to find out these teeny babies are still getting the same highly-toxic treatment that Scarlett did. The fight is not over for more awareness, funding and research to find better treatments, therapies and cures.

We lost a treasured place this summer when Camp Okizu burned in a wildfire. There is hope that they will rebuild, but after missing camp due to COVID, knowing we won't be back for a long time to come is sad. The other camp we visit often, hundreds of miles from Okizu, was threatened by fires but stayed safe.

We are all healthy and happy, despite whatever 2020 wants to throw at us. 

Will the next ten years bring this much? I can’t see it now, but I’ve learned that the universe knows better than me.