Since Sonja’s leukemia diagnosis 755 days ago, we’ve encountered countless ‘firsts’ and navigated situations for which we had no frame of reference. It turns out there isn’t a comprehensive guide for how to be a compassionate and effective caregiver for a kid with cancer living through a global pandemic! (I mean, talk about a bleak book...) Most days we are white-knuckled in the trenches, dealing with immediate needs, weighing risks, and hoping we aren’t screwing up our kids too badly.

By the time Soso completes treatment on September 5^th, she will have spent half of her life fighting cancer. She probably doesn’t even remember much of her life before feeling sick, being poked with needles and pumped full of medicine, or being isolated from friends. Our ‘firsts’ have cruelly defined her ‘normal’.

But this week, I’m happy to share that Sonja is entering a season of ‘lasts’:

• Her LAST port access
• Her LAST chemo infusion
• Her LAST time going under anesthesia
• Her LAST chemo via spinal tap
• Her LAST pulse of high-dose steroids

Soso will take the remainder of her chemo and supporting medications orally – she has already proven to be a rockstar pill taker. Tomorrow a surgeon is scheduled to remove the port that has lived in her chest for the last two years, during the same appointment as her spinal tap. This is a huge step in her treatment, and an act of faith that she will no longer require the same degree of medical intervention. It will be a grueling week for Soso, between the pokes and surgeries and steroids and side effects, but we are grateful for these milestones.

We have deferred or canceled so many plans, I’m excited that we can start picturing Sonja at preschool and playing with other kids again (in fact, we just submitted her daycare registration paperwork today!) We want her to start preschool when Emy goes back to school in the fall to reinforce that Soso can be just like any other “normal” kid. I’m in awe of her resilience. And I’m anxious about what’s next.

More importantly, Sonja is doing incredibly well. Her oncologist and nurse both commented on her beautiful hair and healthy complexion today. She has the vocabulary to better express her needs now, including acknowledging when she’s “just so angry” during her steroid-induced outbursts. She stays busy playing with her Buela and sister, forcing them to play horses or barbies or reenact scenes from The Lion Guard (she’s become a formidable wrestler!) Surgeries and port removals are hard concepts to grasp, so instead Sonja is excited about the prospect of driving the kid-sized car out of the operating room tomorrow. What a blessing.

Thank you for keeping us in your thoughts and prayers in the coming week and months as we finish this season strong (er, or at least drag our weary bodies across the finish line.) We’re so close!