She's back! It’s amazing! So good to have the four of us back under one roof, even if it's just for a bit. 

Sorry for the delay in posting here. The days are packed, and the few moments I’ve found for downtime have resulted in some wonderful catch-up naps. I can’t even make it more than a page or two into a book before I’m out like a light.

So a brief bit of catch up on some cool things that have happened recently.

5/14

We had a heck of a surprise come our way the day before we left the hospital. During our morning prep time, I got a call from the fabulous Steph Hirsch, Community and Social Impact Manager from the Seattle Reign, asking if we would be open to a visit with Zee King (forward on the Reign and one of Iris’s favorite players) and themself at the hospital — our answer was absolutely yes!

Zee and Steph came out in the afternoon bearing a staggering load of gifts for Iris — signed boots, a signed jersey, a signed poster, a signed copy of Megan Rapino’s book, and one of the original OL Reign stadium banners. We sat back and chatted for a while in Iris’s room, then headed out for some fresh air in Wright Park.

I don’t have too many photos of this time because no one wanted to make this into a publicity thing. It is truly remarkable to me how genuine Steph and Zee are. They wanted to be there. No one made them come. During our walk, they both took time to share with us a bit about themselves and what makes them tick.  We didn’t receive a “cancer package” from a pro sports team — it was simply an opportunity to give back to a fan who has supported them over the years. We ended up back at the hospital where we played a knock-down-drag-out game of Uno Flip (thank you Megan and Jon!). Despite Zee’s best efforts, Iris destroyed us all and emerged victorious.

I want to offer a huge thank you to West Sound Soccer Academy, especially Rachel Samuelian and Katie Drovdahl for making this dream visit a reality.

After Zee and Steph left, Iris, Frankie, Melissa and I ended the day watching the Seattle Storm play their opening game in Iris’s room and ordered in some tasty Middle Eastern food (thank you to all of the folks who gifted us DoorDash/Grubhub gift cards — these have been supremely useful to us to create family bonding moments in the hospital). When Melissa and Frankie left to go back home, Iris and I stayed up late for some pillow talk. Iris was so excited to leave.  As we sat in the darkened hospital room, we dreamed about the food she’ll eat, friends she’ll see, and spent some time relishing the good memories we had over the month at Mary Bridge — her favorite nurses, the times we laughed the hardest, the best games we played, the small wins we celebrated. The whole day was an unexpectedly beautiful cap to Iris’s first phase in this journey. It’s amazing to me that Iris left the hospital with so many good memories to look back on.

5/15 - Discharge Day!

The day we left was busy. At 8:30, Iris and I were taken to the surgical unit for her bone marrow aspiration, spinal tap chemo and removal of her central line. Iris and I have a ritual for these sedated procedures. As she’s getting the sedative/pain killer combo, I make a video of her answering her questions or trying to sing a song or just say the alphabet as the drugs hit her. Afterwards we watch the videos and laugh together, talking about some vague future where we’ll splice them all together for a best-of-sedation video. Melissa can’t stand seeing them though. I totally get it; it’s not everyone’s cup of tea to watch their kid pass out. I guess I’m a little weird.

When Iris came out of surgery, I started packing. I looked forward to this because it gave me a chance to revisit all of the cards, posters, notes, gifts and well wishes that Iris received over the last month. My heart filled with love and my eyes flooded with tears. Before Iris was sick, we honestly didn’t realize the strength of the community we have around us. Now we know and we are dumbstruck. We’ll never be able to fully repay the love that has flowed our way. Never. At risk of sounding like a broken record: Thank you. We love you.

When we finally got home, Iris spent a few hours settling back in. Her and Melissa recreated her card wall in her bedroom and unpacked the innumerable stuffies and toys and games that she received in the hospital. We also helped Iris set up her new Chromebook — a gift from HopeCams, a foundation that gives technology to kids with leukemia and other diseases that result in them missing lots of school. She was especially excited by this because she’s been wanting her own device to research on — looking up rockhounding adventures, making lists of plants she’d like to grow and places she’d like to travel. She’d also love to video chat and read emails from people. If this is something you’re interested in, feel free to reach out and I’ll share her email with you directly.

What’s next?

On 5/22, we head back to Tacoma for a care conference with Iris’s whole medical team. This is a big one.  The one that’s worming its way into my sleep and having me check MyChart every few hours. This is when we discuss how Iris’s leukemia has responded to the last month of intensive treatment. Will she be MRD negative (less than 0.01% of disease found in her bone marrow) or MRD positive? If Iris is MRD positive, then we will need to join a new study for high risk B-ALL patients.  It means that we’ll be put on the higher risk protocol and start some “off protocol” therapies. It means that she wouldn’t be in remission. It means that our outcomes are slightly less optimistic.  MRD negative means that she’ll be considered “High-Risk Favorable,” and we have a clearer, safer path (with much better outcomes) for the next few months at least.

If you’re the praying type, then this is the prayer: God, please make Iris MRD Negative.

Other things

I want to thank those of you who have been caring specifically about Frankie during this difficult time. She's been so brave, so optimistic, so kind to her sister and to us. But it definitely has been rough on her. While we were in the hospital, she would go days without seeing one or both of us, facing her peers and adults who have all kinds of questions- some of which she doesn't know the answer to. And while she doesn't like to talk about it, I know that she worries about Iris all the time. If you've been one to reach out with a kind word, a note, or special outing or playdate-- thank you so very much.