12/13/19 “A Healthy Kid”

My body has been preparing for this week for over a month. The anniversary of the diagnosis. In our cancer-fighting world, there is everything that happened before December 11, 2017, and everything that happened after.

Breakfast with Santa and Lurie Children’s Hospital, 2017

Insomnia hit as I walked the path toward December 11 this year. All of my senses have been (too) insanely acute. Joy that seemed so indestructible two years ago now takes on a new fragility. This sounds dark, and it is. But there is contrast. Each dark moment in my mind is countered with the bright light of survival. Of victory. Of my greatest blessing.

Last year on this day, my daughter was preparing for release from the hospital. She had been inpatient for 8 months and we celebrated her victory, remission!! But her hard road continued for many more months, with many more victories.

UCSF Transplant Unit, 2018

Today, this same girl bounds out of my car every morning, to go to kindergarten. “I love you,” she repeats over and over, while she hugs me (one more time) and then joins Quinn and all of the other kindergarteners, to be a kid. A kid.

Classic Kids Winnetka, 2019

2 years. That’s the time frame from diagnosis to “a healthy kid.”

Today, Reese had her monthly appointment at Lurie to see the bone marrow transplant team. The team that adopted us with open arms when we returned from UCSF nine months ago. This is routine and I wasn’t really expecting any surprises.

Reese’s labs continue to be excellent, everything is within “normal” (the best word) and her IGG levels are also holding great (she’s making it on her own!) She also grew and gained weight, again! (Endocrinology will really like this when we meet with them in two weeks.) The discussion of removing her port (central line) came up and that’s when our transplant doctor told me:

“Reese is a healthy kid. It’s time for her to go and live as a healthy kid.”

And just like that, he discharged Reese from BMT.

I sat in shock for the next few minutes. I know that the conversation went on around me, but I couldn’t focus. Wait, she’s done? Yes. (More talking, like the teacher’s voice from Charlie Brown.) I asked questions, trying to process what had been said. Then finally tears of joy and hugs of thanks filled the little transplant room as Reese innocently watched, not understanding the magnitude of the moment. Reese, not only did you survive, you thrive, and now you are a “healthy kid.” God bless you Reese, and I know He does. His hand is in this, and the blessing that is YOU will do great things!

So what happens next? From the medical front, Reese is being transferred back to oncology, to Dr Morgan. To the same doctor who diagnosed her two years ago. This is protocol, and Reese will be followed by oncology for life. Chronic GVHD can hit at any moment, even many years out, and we continue to pray for her safety and the smooth transition into “normal” life. This transfer to oncology will space out her appointments, a lot, and her port will be removed, possibly in February.

So what happens next in life? Reese and her sisters are busy being awesome at being little. And their parents, me and Chris, are just along for the ride. The joyous, breathtaking ride.

Merry Christmas!

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13 thoughts on “12/13/19 “A Healthy Kid””

  1. Today was a really good day. Another medal for another awesome victory. It has been a long and sometimes difficult two years but God has been at your side the whole journey. You are right. God has great plans for our little but mighty warrior. Know that this never could have happened without you being the the ever questioning ever loving Mommy you are. So proud of all that you have accomplished!!!! YOU DID IT. God is good 🙏🙏🌈🌈❤️❤️

  2. Typing as joyous tears are blurring my eyes- but need to express how happy I am to read this amazing news. May you and your family continue your beautiful lives together and know only happiness from now on.

  3. This is great news. I celebrate my remission day more than my birthday because it meens another year I am here. So Reese is a strong kid and I am so happy that she will have another day to celebrate because she beet it. God bless and happy holidays to you guys

  4. So much joy and celebration!!! I read 2 years and that is how long we have been cheering Reese on….hip hip hooray Reese, continue this healthy long road called Life!!!!!!! Hugs!!!!!!

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