Decade

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.

Eight

It's been a long time. I have debated when to write, what to write, how to write.

Yesterday Scarlett turned 8 years old. I am always nostalgic on her birthdays. I miss her baby days, my baby days with her. I miss the tiny clothes, naps, and splashy baths. But I love this big girl, too.

We celebrated her birthday with family and friends and princess.

Scarlett and Rapunzel, both going through a bandaid phase

It's been so long, but a lot has not changed. She loves stuffed animals, baby dolls and animals crackers. Her favorite color is still purple, but she picks pink things most of the time. She loves to sing - she got a karaoke microphone for Christmas last year and loves to rock out with her favorite Disney songs ("Try Everything" by Shakira from Zootopia is #1 by far.

First day of first grade!

Now she has discovered a love for clothes. She loves to dress up, or change outfits several times a day. She is particular about matching pieces that she likes together. She will choose a dress over pretty much anything else, unless there is something new - a new outfit wins over anything that has been worn before. She loves to shop online with me, choose something and then have it delivered - a very dangerous game! When any package arrives, she is ecstatic, and can't wait to see the package opened - only to be devastated when it is something boring (read: anything not for her.) As soon as she has a great dress on, you will find her dancing like a ballerina or setting up a show with her karaoke machine. She made a splash at school this year bringing her ukulele for an impromptu show.  She is a performer!

Dinosaur head. Backpack. Christmas leggings. Daddy's boots.

Medically, she is stable. Most importantly, no change on annual MRIs. That puts us at 5 years off treatment, a big milestone. We removed her g-tube in May after not using it for a full 6 months. After years of keeping it from being pulled out and having an emergency replacement on hand at all times, we pulled it out ourselves at home on the couch and it healed up almost completely within a day. She still makes a terrible mess when she eats, but she gets enough calories in to maintain her weight and enough liquids to keep her hydrated. It's not perfect, but it's enough to build on without a tube.

The biggest challenge that we deal with is behavior. She is relatively happy and compliant most of the time, but when she is unhappy, frustrated or confused, she doesn't really have the language to express herself. Instead, she acts out by hitting, pinching or biting, not to hurt but to get your attention. She resorts to biting her own hand, which has caused extensive skin damage over the last few years. Thankfully she has eased up enough that skin has healed a little and is not as cracked and bleeding. It is painful for her, but she can't stop herself, and we can't take her hand away (though we have tried gloves and even asked about a cast.)

She als elopes; if she sees an open door, she goes for it. She has escaped our house several times, n matter how many locks we add (we currently have a deadbolt with a sensor alarm, a chain lock up high, and a Ring doorbell with motion alarms). We have had to call the police twice when she has escaped and we could not find her. Over the summer, she escaped from her camp and was found running down the road after kicking off her shoes. Even our yard is not always safe; she has pulled down sections of the fence to go to a neighbors yard and kicked out a panel of the gate to squeeze through and run down the street. We have alerted a of our neighbors to PLEASE take her hand and bring her home if she is out on her own. We added a Jiobit GPS tracking device to her daily outfits. It allows us to track her on our phones...if she will wear the tag. We were doing well until this week, when she tossed it somewhere and it disappeared (we think it got broken and will no longer connect to the app.) It keeps up up at night - every sound makes us jump and check all the doors. We can barely carry a conversation when we are out because our heads are constantly swiveling around to keep her in eyesight. I hope she outgrows the desire to run soon...there are only so many ways to keep her in as she gets taller, stronger and craftier.

She made it though kindergarten last year. It wasn't always easy, but we made some adjustments along the way. After much discussion with various doctors and other parents of brain tumor survivors, we started Scarlett on a low dose of Adderall for attention. It doesn't fix everything, but it helps her be a little more aware of herself and what is happening around her. It helped her stop having accidents at school (because she was ignoring her body's cues), gave her the focus to get socks and shoes on by herself and brought about some minor miracles of her noticing to put her plate in the sink or wiping her own nose. We are still tweaking dosages with her psychiatrist, but it seems to be an overall win for us all. The only real downside right now is that she is going through a loooong phase of waking up early...like fully-dressed-in-princess-gear-at-3am early. We have an OK to Wake clock, a reward chart for when she stays in bed and we take turns to get up with her, but it's been several months now. We just want to sleep until 6 once in a while.

School has been a challenge for all of us. Last year, she attended the school where I teach. She was much adored by other students. She was figuring out the routines. Then, after we moved last year, her transfer into my district was denied and we made the last-minute decision to stop fighting administrators that were making our lives miserable and see what happened with our local schools. Luckily, it has been a great move for her, and while we are still fine-tuning her school needs, it seems to be working well for her and us. She knows a lot of words, and is starting to read. She writes her name and counts everything.

Over the last two years, we have been trying to get Scarlett connected with services and supports that will enhance her day-to-day life, give her independence as she is ready for it and help us connect with other kids and families. First, we found a camp that gives her weekends, and now full weeks, away. Via West is respite camp for kids and adults with disabilities. Scarlett gets 21 days each year of camp with a 1:1 aide, where she gets to do crafts, cooking, field trips and other adventures. She loves packing up her sleeping bag and going to camp - I don't think she misses us a bit.

We have been trying to get her into sports or classes for a long time, but finding the right class has been a challenge. We want her to have the experience of doing it "on her own" but most special needs classes through rec centers or private lessons are intended for the parents to be the child's aide through the class. There are some excellent programs in our area that are designed for kids like her, but there are long wait lists...we have been on the waitlist for a swimming program for more than 2 years. We just joined an equestrian therapy waitlist with an expected wait time of 2+ years. But we did recently find an inclusive dance class for the whole family and are getting registered with the Special Olympics in our area for the Spring.

The biggest thing that has happened for Scarlett over the last two years is that she is now a big sister! After her 6th birthday, we decided that we wanted to grow our family. We chose to go through the process to become foster parents with the plan to adopt. We were certified in February 2017 and got our first placement, a baby boy, in April. Over the next few weeks, we helped his doctors and social workers discover that there was much more support needed than was originally understood; we happen to have a very specific set of skills involving infant neurology, and we were able to help connect him with some very much needed services. We all made the decision that his needs would be better met in a different placement, so he moved that summer. It was overwhelming, exhausting and disappointing to have to say goodbye, but it was the right thing for him and us.

Right as we were learning he would be leaving, we found out that we would have to move. Were able to buy a house a few cities away, which was a welcome surprise and blessing - no more rentals being sold out from under us! A few months after we were moved in and settled, we reconnected with the adoption agency and told them we were ready to try again...and a few months later, they had a little boy that was ready to come live with us.

Daddy and little brother watching planes land

We will finalize his adoption next month. He is 3.5 and the sweetest, spunkiest little boy. He has adjusted so well over the last 7 months and is a complete joy. We can't share his photo yet, but they are so sweet together (unless they are fighting!) They are brother and sister 100%. 

So we are on to another year with more adventures and challenges. Scarlett is finding her way in the world and we are following close behind, trying not to get in her way. If you have hung in this long, thanks for caring to check in on our girl. I share on our Starring Scarlett Facebook page slightly more frequently than here, or you can follow me on Instagram if you want to see more.

Until next time (maybe not two years from now)....