Posted: June 21, 2022 at 10:20pm

Dear Family & Friends,

Hope you are well. This overdue update is raw and honest. But before you let concern settle in, please know at the onset that Lily’s most recent CT and MRI scans from April 26^th were clear and she remains cancer-free.  Praise God!

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“It’s the aftermath no one talks about,” said my wise friend Silva when I confided that things had been hard. Really hard.

June 15^th marked one year since treatment ended. This update is several days late. Truthfully, it is months delayed as I’ve been longing to write– because while the updates I wrote during her treatment were intended to keep YOU all informed of each stage of our journey, they actually were instrumental in forcing ME to pause long enough to identify God’s hand in the details and stay focused. That said, you can imagine how much has been stored in my heart over the past 12 months.

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It happened with my own cancer too. The treatments ended, we rejoiced, we praised God, and then we were abruptly swept into the next wave of the journey - the one that people do not see and do not know. The magnitude of our new recovery and rehabilitation phase initially caught me off guard . . . until it dawned on me that not only had Lily’s treatment been more brutal, but also, she was only a teenager forced to deal with this unimaginable experience.

My precious girl had endured 67 chemotherapy infusions and 10 radiation treatments in a 14-month period (I’m not including the number of ER visits, fever spikes, blood transfusions, etc.). Yet the end of treatment by no means indicated an end to appointments. In this rehabilitation phase, appointments now include frequent CT and MRI scans to ensure continued clear scans, thorough neuropsychological evaluations to assess damage, physical therapy to rebuild a beaten body, therapy sessions to process trauma as well as address anxiety & depression, occupational therapy to tackle some of the needs revealed in the neuropsychological evaluation, nutrition clinic appointments to try to heal the substantial impact of steroids and chemo on her young body, wellness sessions to identify the best supplements and methods to detox the body, etc. “Mom, I’m tired of appointments. I thought I was done.”  

And while managing a bottomless pit of appointments, she has also had to resume a “normal” life of school and friends – only to realize that cancer and the pandemic had redefined her experience of both. How does one return to “normal” with a mind and body that had been attacked by the unforgiving enemy of cancer? Moreover, how does one do this in addition to dealing with the typical challenges of being a teenager in middle school?

As you can see, this past year has been marked by our desperate search for the pockets of sunshine in the darkness. Even I, typically the optimist, was fumbling through the darkness searching for a spark of joy.

I felt myself wasting away.

The twinkle in my eye  - dimmed.

My smile – disappeared.

My energy – depleted.

My joy  - deflated.

I hated feeling like this, but I did not know what to do. I frequently uttered, “I feel like I’m in a pit and I can’t find my way out,” and, “My heart is so broken,” to my husband.

Please know that there were several meaningful and joyful moments, and we grasped onto these like life support. They were, indeed, breaths of fresh air in the suffocating pits of darkness & depression we seemed to be experiencing.

We have appreciated those of you who have continued to love us through this hard season. Thank you for understanding and not dismissing this difficult aftermath. My dear friend Ida’s words were a salve to my weary soul: “So glad to hear about Lily’s scans. Recovery is hard. Facing life again with a daily reminder of our mortality is hard. Every scar she has on her little body reminds her of her experience, pain, fears. It’s hard to see the light through it and to live without a care in the world, with the expectation of a certain Herculean immortality, as all other children do.”                                                              

A couple of months ago, we had a fun and glorious day at an amusement park. The girls’ joy was palpable, and their bubbly words conveyed how much their souls hungered for uninhibited fun. After I tucked Lily in at night and we thanked God for this glorious day, she turned to me with her big green eyes, and “Mom, sometimes I forget I had the C-word. Then when I remember, I cry.” I did what I had done innumerable times at the hospital when I knew nothing else to do – I held her.

So, dear friends, we have been living in this space of tension…

between hope and defeat,

between joy and sorrow,

between celebrating a cancer-free diagnosis and treating the damage done by the treatment,

between seeing the beauty in life’s details and witnessing its brokenness expressed in illness & heartache,

between overflowing gratitude for our miracle and deep sorrow for the suffering we endured,

between living with renewed purpose and picking up the broken pieces of trauma,

between being overwhelmed by abundant blessings and overcome by unfathomable pain.

between praising the Lord for the healing and lamenting to Him the deepest cries of our hearts,

And that’s where we find ourselves today. Slowly picking up the pieces of a life disrupted by COVID and cancer and simultaneously cherishing significant milestones that we do not take for granted. Just in the past two weeks, we have celebrated Ella’s 11^th birthday and graduation from elementary school as well as Lily’s 14^th birthday, 1-year- anniversary since completing treatment, and graduation from middle school. We’re allowing our souls to linger longer in these celebrations.

We love you. We pray you are well.

Blessings,

Mama Bear