Updated: Apr 26, 2019
First off, please SAVE THE DATE for Sunday, June 16th! We hope to have a park party celebrating Thea, getting through frontline treatment, Jeff’s birthday, and ALL OF YOU, who have carried us through this in countless ways. We truly love you all so much.
It’s been too long since we’ve written an update and not for any dramatic reason. We’ve just been in our rhythm, getting through the tough days and enjoying the heck out of the good ones. We’ve had minor ups (yay! We’re done with Delayed Intensification!) and downs (boo! We had another one-week delay because of low counts) but things have mostly just been moving along.
About two weeks ago I noticed a major mental shift in my own thinking, much to my dismay. I spent so much time dreading the Delayed Intensification stage: Wondering if we’d make it through without a hospital stay Googling the new chemo's side effects. Reading the online parent discussion groups commentary about it. Well, now we’re past it! It went completely without incident. You’d think I’d be celebrating our luck, but instead my thoughts did not pause a moment. They just dove head-first into, “OMG we are almost through frontline treatment… what about Kindergarten? What about work for me? Where will Siggy go to school? Where we will live? August will be here before I can figure it all out!”
I have whiplash -- we have to adjust to another New Normal. That real world out there, the one that’s been carrying on without us these past months? I literally feel like a temporary visitor in it. When I’m out at dance class, shopping for something for the girls, or meeting friends for lunch, I am simply an actor playing my former self. In my head I’m going, “Am I acting normal?” Of course I’m enjoying those things too, but it’s like I’m viewing them distantly, from afar. That probably sounds crazy and dissociative, but to me the crazier thing is imagining shifting to that world in a few short months. My mind races with terror at the thought of Thea sharing a room with 30 other germ-vectors for 6 hours a day. How can I possibly keep her safe and healthy? Obviously, I can’t and mama’s gonna need to let go of some control.
Please hold your judgment for a second when I admit to you, there’s also a feeling of sadness at ending this intense period of treatment. Admit it, you just thought “Munchausen's?!” No, I mean, I’ll be thrilled not to go to the hospital multiple times a week. But what about this sweet, small cocoon our family of four has built and shared? I don’t want that to end.
And just because you know I can’t help myself, I have to share a few recent vignettes of the tenderness that has continued to develop between Thea & Siggy.
The other day, they were screaming at each other over something. I intervened and offered some options. They wanted nothing to do with my ideas so I left and encouraged them to figure it out themselves. I spied on them from inside the coat closet. They stood in opposition, hands on hips, talking to each other back and forth. They agreed on a compromise, hugged each other and apologized to each other for yelling and getting mad. They didn’t even know I was watching from afar, I swear!
Last night Thea had a lot of bone pain from her chemo and Siggy was there by her side each time she yelped offering words of comfort, rubbing her back, bringing her water.
Today Thea took a fall on her scooter and Siggy pulled her home the entire two blocks, rubbing her back the whole way. Thea said, “Siggy that really does make me feel better.”
The other day Siggy asked me when her hair is going to fall out. When I explained it wasn’t going to and asked her why she wanted to know, she told me she wanted to make Thea happy and have no hair together.
Okay, I’ll stop now. But really, how could I want these moments to end? My mom and step-dad pointed out how lucky Thea is that Siggy hasn’t gone to school this whole year so they’ve had one another throughout. What an incredible bond they’ve created.
So, what’s on the horizon, waiting for us in the real world? The 22-month “Long Term Maintenance” phase will hopefully begin mid-June. It includes two oral chemo pills per day, monthly chemo at the hospital, and steroid pulses for one week of every month. It doesn’t sound fun to me, but her oncology team assures me it’s not so bad. Families of other kids with leukemia report very mixed experiences, from those whose children have had multiple hospital stays and missed a lot of school to others who feel they’re almost normal.
We were lucky to get our first choice in the SFUSD lottery and have enrolled Thea at Miraloma Elementary. We ranked this school first on our wishlist because of their stellar reputation for developing an inclusive culture. When I took Thea to register, we were both so cheered by the welcoming response of the Principal, office staff and social worker. Everyone has been friendly and it feels right. We hope we’ll be able to get to know a few other families so that there will be some familiar faces when school starts.
This week Thea received two foot braces that she’ll wear outside her pants but inside her shoes. They don’t improve function but they decrease her chance of falling, so they’ll be really helpful at school when I’m not there to be holding her hand. Of course physical therapy will continue and we'll be purchasing some special shoes so her braces can slide in and out of them easier.
As for myself, I’m starting to think about what’s next for work. Not knowing what Long Term Maintenance will be like, it’s pretty hard to determine what’s best other than something with flexibility. I feel myself struggling between wanting to do something that really excites me, which is probably too demanding at this point, to wanting to do nothing at all. I need to find that happy medium… I’m accepting any advice and ideas you have to offer.
Hey, you know what would help the transition to the real world? Let’s hang out! Over the past months one of the ways we’ve stayed connected with folks is through the meal train. We’ve loved using that as an opportunity to stay in touch with people, have a short visit, etc. You may have noticed that we hit the pause button on meal train. As much as the meals and social time are awesome, we are getting it together now and need to get back in control of our eating. These last months have been so kind to our souls but not so much to our waistlines. Please don’t hesitate to call, text, no matter how long it’s been. I know it’s been hard to predict if we’re able to accept visitors in any particular week. Playdates and outings will definitely be helpful in preparing for school in August.
Happy Spring to all & hope to connect with you soon!