We are a week or so in to the dreaded Delayed Intensification stage. She’s on the highest dose of steroids she’s had so far and receiving several new drugs. While some kids make it to this point with hair intact, most don’t keep it past the "dox" (doxorubicin). We’re two doses in and it should start thinning any day. We're likely to have unplanned hospital stays during this stage. Thankfully there isn’t much to report yet. The “decamonster” steroid beast is back, but so far she's tolerable. Plus, the flipside of the beast is euphoriThea. Usually this is when she’s destroying all traces of sausages or sushi in our house, which her current steroid cravings. She hasn’t been too nauseous, just more exhausted than in the past. She hits a wall after a few hours of activity and we have to scoop her off the floor and get her to lie down for a bit. We’re bracing ourselves for these next two months, feeling cautious and nervous but optimistic too. We just have to get through these next few months.
We've mentioned neuropathy before without much explanation. Neuropathy can be a lot of things. It typically includes numbness and tingling. In Thea, it manifests most noticeably in how she walks. She has a hobble to her gait and can’t lift her feet up. From seated, most people can point their big toes halfway to the ceiling. Her left toe (she jokes it’s the lazy one) stays mostly parallel with the floor when she tries, so we do at-home physical therapy twice a day to try to hold off her muscle wasting. We are so thankful to Little Wishes for getting Thea a cool new scooter that she uses for her exercises and can sit on when she's too tired to walk to the car after treatments. Even with best efforts, we’ve been warned it might progress to a point where she can no longer walk.
We just have to get through these next few months.
In service of that mantra, some logistical support updates. We increased the mealtrain a bit. Thea will be going into the hospital more frequently than before and her appointments are always afternoon/evening because of her doctor’s schedule. This means we get home after dinner time, so the meals are incredibly helpful. I am not being dramatic when I say that sometimes after a treatment day, when we're finally home, I get a little teary with gratitude for being nourished without effort. We also added some more practical stuff to Thea’s wishlist. With the steroid mood swings and exhaustion, it’s getting harder to motivate her to do her physical therapy which really increases our anxiety. I do not want to be pushing her to Kindergarten in a wheelchair. So, we added some tools and equipment for physical therapy that will hopefully make it more fun (using quinoa-filled socks for bean bags lost its charm a few weeks ago). Since we’ll be spending more time at home over the next months we’ve beefed up the list with homeschool supplies too.*
In early March, we’ll be in the hospital four days in a row for a couple weeks. Our chemo infusions are often at 3 or 4pm and we’re there until 6 or 7. She’s begun to get depressed and beg to not go. We’ve learned that a surprise friend visiting her at her infusion really brightens her up. Last week my brother and sister-in-law surprised Thea by showing up with her new baby cousin, who she had not yet met. She went from crying and begging to go home to snuggling, laughing and smiling. It was awesome. If anyone is able and willing to make this happen in March, talk to us!
Siggy celebrated her half birthday (Siggy, proudly:“eets my birfhday.” Us: "half!") on Valentines Day (“balance time day”) and is very proud of what a big girl she is lately. She’s dressing herself in the morning (10% of the time), making her bed, and putting up more and more elaborate excuses for not napping or going to sleep -- all the big girl stuff. She continues to be a bright spot for all of us, constantly honing her funny faces and comedic routines to make us all laugh.
She expertly deploys these when we're about to talk to her about something mischievous she did. Thea loves tagging along to Siggy’s daily parks & rec classes when she’s feeling up to it and the two of them have been bonding cutely over the past weeks. Of course when Thea started the steroids, Siggy did have one episode where Ms. The Decamonster ruffled her and she responded by biting Thea HARD. That gave me a panic attack. Thankfully no infection resulted. It didn’t take long for Siggy to become more tolerant. Now she’ll sidle over to me and shake her head and observe under her breath, “I think that’s just the decamonster.”
In other news Siggy currently believes that all kisses are properly given while also sucking your cheeks in, and that if you angle your head while kissing it’s called a “marriage kiss”. God, I could eat her.
Last weekend was a highlight for us on this journey. Luann Daniel is one of the amazing teachers I used to work with at Spruce elementary. She rides in bike races to fundraise with Team In Training, the Leukemia and Lymphoma Society’s main fundraiser. She reached out and asked if Thea could be an honoree this year. This weekend we went to the team’s kick-off event. I spoke a bit and Thea got to hand out TheaStrong bracelets they made for her. Then she got to lead the team huddle and cheer that starts the training ride. She was nervous having 50 grown-ups staring at her, but she warmed up and absolutely loves the idea of supporting the team in the future. We hope to go to some of the weekend practice rides and hand out water and food on the sidelines. If you are a cyclist and are interested, learn more about America’s Most Beautiful Bike Ride taking place in June. Or support “Team Husky’s” fundraising efforts. Last year this mighty team raised over $300K!
Another highlight I cannot get enough of is that we won the nanny lottery. All four of us adore Brynne and I truly could not have imagined a more perfect person to be our support during this crazy time. Both girls took to her right away I like to joke that I think we’d be friends in a different life. She has absolutely endless patience, creativity, and positivity - the trifecta we need on the daily. This week she’s laughed off Thea’s crazy food requests and ragey bursts of energy, just calmly observing and accepting. She is deeply respectful of little ones and all their quirks, normalizing whatever they throw her way and staying curious about what they need and how to help them. When she’s not with us, the girls regularly tell me they miss her and are constantly showering me with life advice and interesting facts they "learned from Brynne." They even have their own special handshakes for greetings. On many days when she leaves, Siggy shouts over her shoulder, “bye Brynne! I love you so much!!” It’s hard to believe she only started with us a few months ago. It feels like ages and that’s really good thing.
As we go into this period of isolation coming up, please know we can still welcome 1-2 visitors to our home now and then (if you’re in good health and you know, believe in vaccines or whatever). So be in touch! Looking forward to putting this part of the journey behind us and feeling buoyed by the love and support of all of you. Happy Valentines!
* We are so grateful for every card, gift, and special package, so I feel awful mentioning this, but please keep Siggy in mind when sending stuff. Nine times out of ten, I go on Amazon and purchase a second identical item because Siggy can’t understand why Thea is always getting awesome presents. It may seem ridiculous - I used to get on a high horse about not buying two of everything, maybe even judging those that did, but these are extreme times. Siggy used to be oblivious to this stuff but now she’s observant and really feeling the overall imbalance. At three and a half, fairness is her middle name. She’s not old enough to be cool with it and rationalize, “Thea gets more presents because she’s sick”. If you see an item that says “quantity - 2” on the wishlist- that’s why! Siggy also has her own wishlist. Thank you.