Updated: Mar 15, 2020
This week marks three months since the first day of school, and it’s HUGE news that Thea has not missed one single day of school due to illness. Could you have ever imagined we’d start Kindergarten on such a solid foundation? There surely are viruses, fevers, and absences to come, but now we can rest assured that this kid is a solid part of her classroom and school community. In fact, she is no different than any of her peers in their eyes. I could repeat that sentence to myself infinitely. A year ago, if you had told me about this future, I would never have believed you. Never. A year ago we were just coming down off of the worst steroid days of our lives, struggling to figure out which anesthesia combo made Thea wake up peacefully instead of full of biting rage (literally). Just meeting our new medical care team at UCSF, just realizing the chemo had weakened her ankles and was making her fall a lot. We were canceling all of the Kindergarten school tours I had scheduled and wondering if we’d even need them anyways, wondering if she’d be homebound for years or worse, hospital-bound. What an absolute, glorious, gorgeous triumph.
So really, due to the above news, there actually isn’t much cancer news to share, hence the long pause between posts. Medically, Thea is flying along. The regimen she’s on now is the same she’ll be on until a year from this Christmas, so the fact that her body is handling it well is a good sign. During all of frontline treatment last year, the goal was always to have “high” counts. During this “maintenance” stage, the goal is to keep Thea’s blood counts within a certain range (not too high, and not too low). The science says this is the secret sauce to minimizing the chance of relapse. Some kids end up decreasing their daily meds and some end up increasing them based on how they handle the regimen. So far, Thea’s counts have been a little too high, so her doctor’s have increased her dose to 125% of standard. She’s weathered 2 or 3 colds all on her own, with no fever and no other interventions needed. Quite remarkable.
Emotionally, academically, behaviorally, I maybe wouldn’t say she’s “flying along.” We’ve had our ups and downs. We have no way of telling if this is normal six year old stuff or the well-known effects of the chemo that had to be delivered into her spine. So… parents reading this, please do weigh in (though you probably see the best of Thea). Kindergarten is incredibly exhausting for Thea. She could probably go to bed for the night at 6:30pm if it was possible and thus the evening hours are usually full of dramatic tantrums, fights, or sobbing-on-the-floor sessions followed sometimes immediately by giddy laughter. The moodiness is astounding. We’re told by her teacher that she does none of these things at school so it’s clear she is working really hard there to be the best student she can. She loves school, wants to wake up and go each morning. She has a deep admiration for her teacher, Ms. Gillian, who now sometimes usurps my authority on all sorts of matters from academics to teeth brushing. She is clearly a student, and is soaking up the learning like the sponge she’s always been. We feel her attention span and focus have been impacted by the chemo, but so far, none of this is impacting her ability to learn. Overall, we couldn’t have dreamed of better success at this point, but we do still worry about the mood swings and her anxiety etc.
Siggy, on the other hand, has not gone a week in her life without crazy swings from screaming to giggling. For better or worse, that hasn’t changed. She still makes us die on the floor laughing with her repertoire of dramatic faces and bizarre comments.
Background: Siggy has always loved salmon for dinner.
Siggy: “What’s for dinner?”
Siggy: “Fine. I guess I won’t be your kid anymore.” Cooly walks out of room.
Then other times she drives us nuts with a 20 minute endurance screamfest like no other. I often joke with Jeff that she has never lost an argument in her life. Maybe lawyering is in her future someday.
In mid-October we went as a family to Camp Okizu, a camp for kids with cancer and their parents and siblings. We stayed in a gorgeous cabin and ate at the dining hall with about 30 other families. During the day the girls played with new friends and us grown-ups had time to commiserate on the weird club we’re in and support one another's journeys. Thea will be eligible to go to camp for a week by herself this summer and SIggy can participate in a siblings camp once she turns 6. Some of the kids we met are teenagers and have been going every year for over a decade and are now counselors. Every adult staffing the camp has been affected by childhood cancer in some way. Imagine how incredible that is for Thea, where once a summer, she’ll get to be surrounded by kids and grown ups that share this experience, but not in a clinic setting. In a place where she can kayak and hike and climb and sleep under the stars. Jeff and I were both bolstered and humbled to hear the stories of the families we were with. Everyone is different but everyone offers insight. We learned how lucky we’ve been so far, and how the cognitive and behavioral impacts may not be seen for another year or so. These conversations are helpful in expectation-setting. All of this yearly programming is offered completely for free and it’s really quite something. If you are looking for a local charity to give to this holiday season, this is an amazing one. http://okizu.org/donate/
And speaking of amazing charities, you all know what HUGE fans we are of Little Wishes. This is the non-profit started by one of Thea’s first nurses, Nurse Laura, that provides small gifts at her chemo appointments and treatments. This past month Jeff and I had the opportunity to attend a fundraising dinner to share our story and encourage donors to give. We didn’t know what a touching evening it would be for us. We sat next to Dr. Lo, the incredible woman who was there on day 1, breaking the news to us. We haven’t seen her since we switched to UCSF and it was wonderful to catch up. Across from us sat a pediatric oncology nurse from Stanford. She too shared her story - she was diagnosed with cancer as a child, was treated by Dr. Lo and Nurse Laura, was one of the first recipients of Little Wishes, and eventually decided to become a nurse. She had just brought the non-profit to Stanford and gifted a patient her first Little Wish. Needless to say, I spent a good part of dinner choked up. We know that Thea has a very good prognosis, and we hear about children who have grown up to do fabulous things, but I’ve never had the chance to dine next to someone like this. I felt ecstatic, emotional, and inspired. It was a moving evening. Little Wishes has a waitlist of nearly 50 children's cancer treatment hospitals. Word is spreading of their awesome ability to make kids smile at the hardest moments, give kids a reason to connect with their medical team, and grant kids a little bit of autonomy at a time when many of their childhood freedoms have been taken from them. Indeed, tomorrow Thea has her next Lumbar Puncture and she literally vibrates with excitement because she knows there's a LEGO Little Wish waiting for her. Please consider supporting them! Giving Tuesday is December 3rd. https://littlewishes.org/donate/
We’ve decided to avoid airports during the cold and flu season so we are planning on a quiet Thanksgiving and Christmas in SF this year. We’ll very much miss seeing family but the magic of SF at the holidays is something hard to come by - the city empties out and gives the holiday gift of bountiful parking.
Happy Thanksgiving. So much to be grateful for. Ms. Gillian asked students what they are thankful for and Thea said “all of the presents I get because I have cancer.” She’s never mentioned it in class before and she later told me, “Mama, I don’t think my class knows what cancer is.” When we think of how they could’ve known Thea as the monthly Decamonster, or the kid who’s always out sick, we take this as a big sign of success!