May 24th, 2018 (Scott)
Up at 4am and off to Renown for Maya’s port removal this morning. The procedure is scheduled for 730am.
It’s a short procedure, under thirty minutes, with two hours or so in recovery. We hope to be headed home by lunchtime.
Looking forward to celebrating “Aloha Chemo!” with you all on Saturday. More updates asap.
May 1st, 2018 (Scott)
Just over a week ago Maya took her last dose of chemotherapy medication. The last half-tablet of 6-Mercaptopurine went down in the presence of family and close friends, and the emotional weight of the moment was more than I expected– there was some cheering, a few high-fives, but mainly there were firm hugs and whispered expressions of gratitude. The reality of this transition was not lost on Maya who celebrated as happily as anyone. She has rejoiced in the diminishing medications since her last dose of Decadron went down more than a month ago.
It’s curious to me that neither Sara nor I have written much about that little celebration until now. There is a video to be shared, and there have been many texts and conversations, but the opportunity to really reflect has been delayed. My initial thought is that we’ve written many times in the past year or so about what the end of treatment will feel like, and now we’re taking the time to explore whether our new reality is anything like those dreams. I also think we’re exhausted, and a little stunned, by the idea that two years and two months could pass so quickly with such a variety of experiences and emotional extremes– then, with the quiet gulp of a final dose and a sly grin, the journey ends.
Of course, there’s much more to come, and to think that the past two-plus years is a story that begins and ends with a dose of chemotherapy would be to miss the best part. There’s a little person at the center of this– who began as a ferocious three year old and broke through the finish line a confident five year old. Her fire has burned brightly along the way– at times out of control and at times engulfing her in life, love, and growing well past the final dose of meds.
Wrapped around the center of the story is our little family whose strength has been maintained within the protective armor of our community and its immeasurable love and support. Sara and I count ourselves among the most fortunate people of all time to have been blessed with such unrelenting protection– friends and strangers alike have helped in myriad ways to ensure we never stumbled more than we had to. Friends, family, and neighbors moved our belongings from one house to another and made our new house a home before we’d even set foot inside the door. Whether it was money or time or food or freedom, whatever we needed was there through the enduring love and security of this community.
In the beginning we were told standard risk ALL treatment carries a 90+% chance of success. Marriages under these circumstances have a 25% chance of success. At first I thought the generosity we received was intended to save Maya’s life. Now I see that our people mobilized to save our whole family– that we might come through this as strong as we were before. I cannot imagine a more beautiful gift, and it is something Sara and I honor and will share with others for the rest of our lives.
Maya’s took her last doses of allopurinol and bactrim (non-chemo meds) last weekend. For a year she will have monthly lab checks, then every other month, then quarterly. For now she’s a ‘survivor’ and after five years will be deemed ‘cured.’ It will take years for her immune system to return to full strength, and we’ll still need to take some precautions. But these will be light compared to the bubble-life of 2016-17.
This week we are visiting Great-Grandma (Nona) in Sacramento. Nona’s house is always a place of calm and relaxation, and we love to visit almost as much as the kids do (Linco turned down stopping to get a sandwich in order to arrive sooner at Nona’s… that’s really saying something!) Yesterday we went to the zoo, rode the train and the carousel, and we took a trip through Fairytale Town to end the afternoon. The kids are great– carefree and fearless. The adults will take more time, but we’re moving in the same direction. 
Tomorrow we visit the Make-a Wish ‘Wishing Place’– one of just five in the whole world. Maya will be interviewed without parental interference to help give clarity and shape to the dreams in her heart and imagination. . . “I want to be… I want to meet… I want to visit… I want to have….” And I can’t wait to hear what will come of this process– no doubt there will be magic.
May 26, 2018 is the date of our Aloha Chemo Carson City Party in the Shoe Tree Brewery parking lot. Food, music, beer, and fun for the whole family to celebrate the beauty of community and to BENEFIT the NORTHERN NEVADA CHILDREN’S CANCER FOUNDATION. We’ll send out more details (flyer) asap, but the party is planned 11am-4pm. Please come and play, support, or just share a high-five or two… everyone is invited. And thank you all for your enduring kindness and love.