Wednesday, October 17, 2018


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 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)....

Tuesday, October 18, 2016

Spectacular Six

It has been a full year since I updated. I just reread my post from last year, and it made me laugh to see what has changed and what has not.

Scarlett is six! This weekend we celebrated her birthday with family and friends in a rainstorm. When people commented on the bad luck of rain, I reminded them that it rained the day she was born, too. Can't be too bad of luck!

She is full of life. She wakes up with the sun ready to play and love, and fights going to bed so she can fit in a few more snuggles or an extra story. She fills every day with smiles and hugs.

Much of last year's post is still true - she still loves purple. She still loves to carry around her dolls, through now she makes them walk around and talk to things. She still sings a lot - and now carries around her new ukulele for random strumming sessions, or demands we all stand and dance when the ending credit songs play for her favorite movies.

Much of what she was doing this time last year has grown. She knows all her letters, capital and lowercase, numbers to 10, counting to 20, colors and shapes. Now we consistently get 2-3 words at a time, usually describing something she wants - "big bed", "TV on", "black shirt" "My Cosmo!" (our beleaguered dog who just barely tolerates her overly-enthusiastic love). She likes to get our attention by screaming "MAMA! DADA!" then just laugh when we look her way. She has some longer phrases that she uses - "I'll be right back!" She is relentlessly polite, saying please, thank you, bless you at every opportunity - even if she hears a sneeze from the other end of the house. A lot of her speech is still unintelligible, even to those of us who spend a lot of time with her. She is unphased - she will chatter on for paragraphs while we just nod and say "Oh, really?" She is showing herself to be much more of an oral/auditory communicator; she signs when she needs to get her point across, but she is much more likely to put effort into having her speech understood than to attempt a sign. This has been a signal we have been watching for as we look for the next school placements; that's not to say she won't be signing, but it may not be the biggest focus of her next placement.

She gets physical and occupational therapy only at school now - she outgrew most of what was available. OT will will continue to be a need, both in and out of school, but we are waiting until her school schedule is a little more forgiving. She tires out in the afternoon with a long drive home and does not really have the stamina for therapy after.

We have made some significant headway with potty training, and felt confidant enough to throw out the diaper pail! She is dry through the day most of the time and gaining independence slowly. I look forward to the days when we can go through ONLY 1-2 pairs of pants in a day!

We have yet to get her feeding therapy in place. It's almost comical at this point, except that it's frustrating and disappointing. After going through months of denials, proposing alternatives, attempting to contact said alternatives, only to have them say they don't offer that service, to now being approved but waiting for the providers to actually be able to find a person with a schedule that can accommodate her...we've made baby steps but keep pushing.  She wasn't going to just wait around, so she made some significant progress on her own. She will now eat a whole applesauce/baby food pouch on her own - sometimes even two. We brought them back into regular rotation when she got overly reliant on graham crackers. We were noticing her weight increasing a little too quickly, so we got the go-ahead to cut out one tube-fed meal a day and instead let her eat by mouth one meal a day. Then, while out to dinner one evening, she just up and decided she could use a straw. Both of these skills have been attempted for years, and we made NO progress all this time...until I suddenly thought of a way to explain the necessary mouth position in a way she could understand. It turns out that sucking on a straw is the same as kissing, and she's a pro at that! Giving her some independence with cups and pouches has encouraged her to be a more "productive" swallower, so it has been a win-win situation.

She has adopted one scary habit - "elopement." She gets out. And runs. The first time was last year - a gate was open, and she took off running, ending up at the school across the street. The staff there picked her up and had her in the office, about to call the police, when Chris breathlessly arrived. Someone outside saw him looking frantically for her and led him to the office.  After that, we added a new reinforced gate and locks to the yard.

Then, this summer she got out again.  This time, it was in the morning as we were getting ready to a long day of outings, company and a party. She just opened the front door and let herself out. Unfortunately, we didn't realize it for several minutes. She was nowhere to be seen. Chris jumped in the car to look; his mom was visiting and took off down the street. I was left in the front yard paralyzed. I couldn't go in any one direction because I had no idea which one was right.  After a few minutes, I called the police. As I described what had happened, what she looked like and what officers were looking for, I was in hysterics. I could barely breathe. 

A few minutes later, two cars pulled up in front of the house and I saw another two at the end of the street. Thankfully, she was just 2 blocks down - and the dog had gone with her and stayed close. When the officers approached her, she laughed and ran into the street. They finally blocked her into the parking lot of the school and I jumped into one of the cars to help catch them both.  Even then, I struggled to hold on to her while I explained a little to the officers and they took her picture and created a file for her in case the situation should repeat itself. They gave her a sticker and sent us home to recover.

But that was just the beginning. She ran out that night during the party, effectively ending it. She did a few more time that weekend. We added a latch to the top of our front door. She climbs her highchair to reach it or watches for it to be left open. We added a child-proof lock on the handle and that stopped her for now...we're erring on the side of safety and try to use multiple locks just in case.

Now, she's started to do it at school too. Just yesterday, she got out through a door while they were playing outside. She was running down the street when someone saw her through the window and ran after her. Everyone was distraught - they have not had that problem in the 30 years of the school. New measures are in place to keep her in, and to keep her from having the chance to teach the other kids how she did it.

We have resorted to using a leash backpack when we dare to leave the house. It's the easiest way to keep a handle on her without her fighting us. She loves her "monkey backpack" and wears it around the house even when we are just at home, so I try not to feel too bad about it. We are working on getting behavioral therapy as part of her school and home services to help address it. It's harrowing to have her try to run down the street every time we take out the trash, so the goal is to help teach and reinforce the idea that she has to stay with us, and the boundaries of sidewalks. Hopefully we can get her to recognize the need to stay safe before we lose our minds!

She has been through a few minor procedures in the last few months. She was referred to a new dentist that works through the hospital, and that offered some "perks," if you can call it that...since she can't really understand to sit still for dental x-rays or cleanings, they arranged to do a full cleaning and x-rays while she was under anesthesia for her MRI. This made for a long day for her, but killed two birds with one anesthesia IV. We discovered that she has some damage to her teeth (which her doctor feels is not from chemo...but how could it not be??), including very thin enamel and shallow roots on her permanent teeth and one whole tooth, it isn't in her jaw and will not grow in. It's not critical, but overall, a situation we will watch closely. 

Last week, she had a procedure we have been eagerly awaiting - drool reduction! Her oral motor control is weak, and she has reduced sensation in her face, so she was always super drooly. Her chin, neck, cheeks, shirt - sometimes down to her belly button - were wet to the point of needing a new shirt multiple times a day. We tried a medication, but it just made her drool into a thick, snot-consistency (sorry - it was gross for us too!) So, we opted for the semi-long-term option: Botox. In a few minutes, they injected Botox into her passive salivary glands and BOOM! Less drool. Not none, and she still salivates with food, so that hasn't been an issue. A definite win for the laundry pile!
With cousin Caleb

With cousin Olivia...somehow we don't have one with twin Andrew!

One of the most exciting moves has been to just annual MRIs - no sign of tumor activity for 4 years! Now we hit the brain tumor patient jackpot and only have to have scans once a year.  She will continue these indefinitely - tumor growth monitoring will always be a part of her life. 

We learned some interesting things at her last appointment in September. Back when she was treated with chemo for the second time for recurrent tumor, we pressed the doctors for a "Plan B" in case the chemo didn't work; they told us we would go to Boston Children's Hospital for proton radiation. It was a long shot - she has had pretty much all the chemo her body can ever have, and any more would be severely damaging. Radiation is a last resort, and it was what we were prepared to do if needed. Boston - a cross-country trek for us from our home in the Bay Area - had the longest-running, most established proton therapy clinic for children, so our team felt most comfortable with that option should it be needed.

We're just 4 years out from that conversation, and everything has changed. Proton radiation - a much safer, controlled alternative to the old radiation treatments - is available in several of our more-local hospitals and would likely not require us to leave home.  But even better, advances in immunotherapy have made it the next best option. Doctors can now personalize treatment to patients' immune systems with a lot of doctor science that I don't understand, but am grateful for. When I asked what the "Plan B" would be should we see tumor growth now, Scarlett's doctor said she would hope we never have to consider radiation. I'm hedging my bets on no treatment ever, but I'm glad to hear that scary lasers aimed at by child's head are off the table.
Scarlett driving!
Chris and I are making some progress, too. We have lived in Scarlett-land since the minute she was born (or, really, since we found out I was pregnant). In many ways, that was how we survived - we focused on what she needed, and if that was taken care of, we were maxed out. Over time, things have slowly evolved to where we are beginning to find a balance. We are starting to look for ways to regain, or maybe just establish, who we really are as adults. I am forging ahead at work, pushing to bring technology to my students, going after new grants for materials and building new content for my students. Chris has several projects he is working on, from business ideas to advocating for an accessible playground in our city.  He still spends a lot of time on Scarlett business, but he is finding ways to expand his projects when he can. 

Chris checking off his bucket list with skydiving!
Mommy and daddy-only trip in the summer!
Together, we embarked on a new diet in the summer. It has been pretty successful, and we've been able to stick to it for nearly 6 months. I've lost weight for the first time in my life that didn't involve childbirth, and have a slowly growing pile of clothes that are too big - a definite first. It's a big move for us psychologically, to put our own health as a priority. It signals a change in our state of mind that is healthier in many ways.
First day of school 2016
We have also been looking for ways to give back more. We are becoming more active in the California Chapter of the Pediatric Brain Tumor Foundation (formerly We Can Pediatric Brain Tumor Network). We have been going to camps with them for years, and were asked to be parent leaders, so we give feedback and help plan camps and offer support to other families as we can. We have asked our main doctor at Lucile Packard to keep us in mind should parent advocacy or support roles open up - and she said she had already recommended us! We want to make more of this experience than just a sad story that happened to us once upon a time; we will keep looking for ways to support others and advocate for Scarlett and kids like her to give them the best lives they can have.

We're all excited for one thing on the horizon...Disneyland! We are have always dreamed of taking Scarlett, and an opportunity has come up. We are in full Disney-fication mode - movies, t-shirts, dolls and birthday parties, getting Scarlett ready to understand some of the magic at the Happiest Place on Earth. She loves rides, recognizes characters and is learning about parades and shows.  I'm researching all the ways we can make the most of our trip, and make it as Scarlett-friendly as we can. We're going to an Autism-friendly stage performance of Beauty and the Beast across the bay next month, too.We're going in February, but I'm about ready to start a countdown now!

Mommy made the Minnie cake!
Six years later, we are so proud of this girl. She makes every day special, interesting, challenging and important. We are learning how to be better versions of ourselves for her; loving her brings out the best in us.