Donna’s Cancer Story: Relapse 3.0

This is the nineteenth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of treatment.

Donna had another set of scans this month that showed  her tumor was back.  Another relapse.  Tears and terror for us, dancing and pumpkins for Donna.  Today’s update is hard to write.  We were so hopeful, so needing a break from cancer, so exhausted.  I get so angry at cancer sometimes, it’s randomness and brutality, it’s tenacity, it’s mystery.  I rarely asked this question when Donna was in the midst of treatment, but I do ask it sometimes now:  Why Donna?  Where did it come from? 

We have no idea, nor will we ever. 

Donna reaching higher

There is a total disconnect today between the photos you see and the words you read.  How to reconcile the girl in our photos, our beautiful Donna, with the photos the doctors order, those inside her body?  How, as a parent, do you make sense of what you see in front of you and what the doctors tell you is happening?  I spent so much time wishing and hoping that one day someone would call from Children’s and say, “We are so terribly, very sorry, but we made a mistake.  Your daughter is fine.  Our bad.” 

This photo was taken at the baptism of Donna’s cousin.  It was a beautiful day, a celebration for her third cousin born within six weeks of one another.  The minister baptized a few babies that day and spoke of children and of hope.  He talked about how children are never really ours, that as parents, we are here to steward our children through their early life, but must embrace that they are not ours.  I wept silently as he spoke.  Afterwards, we all went to the Brauhaus on Lincoln for beer, brats, and dancing.  Donna loved the music and Mary Tyler Dad and I were feeling so grateful.  Sigh.  It was such a lovely day. 

Dancing at Milo's baptism

After the news of relapse, there is the business of staging.  Yet again, another series of tests, scans, punctures to determine if the beast had metasticized.  More hospital time, more anesthetia, more terrifying hours spent waiting for the phone to ring, knowing in our bones that the news will be bad.  Our bones did not deceive us.  Two small spots on Donna’s spine, an area the cancer had never been before.  Our oncologist sounded disheartened, something you never want to detect in the voice of your daughter’s oncologist. 

Donna’s neurosurgeon was reluctant to operate both because of the location of the tumor (same place, though growing in a different direction, too close to vital blood flow paths) and her stated belief, “There is not a surgical solution to this tumor.”  Coming off July’s relapse, just three month’s prior, we were living so large, truly believing Donna had dodged a bullet.  We had had a taste of normalcy and now it would be gone again.  The treatment decision was chemo, though which protocol was still uncertain.  The sledgehammer of chemos had only stalled Donna’s cancer, not stopped it, and in that process had caused damage to her kidneys.  What else was left to try?  At the end of this month, we were still waiting for that answer.

And through this, Donna was in another course of PT.  Seeing her dance and some of her physical limitations, Donna could not run or jump, I had asked for a booster of PT to increase the strength she did have.  Donna loved her therapists at RIC and they her.  The therapy was welcome as it provided structure to our days, indoor fun, and always gave Donna challenge and confidence.  Here she is working on balance as she throws frogs into a bucket I held.  I was so proud of her. 

Donna playing in PT

Donna was as she had always been during this month:  a joy.  A beautiful, smart, clever, girl.  We did not share this news with her.  We discussed and explained procedures with her, worked hard so that she would feel aware, secure and prepared for whatever cancer would bring her that day, whether it be a surgery, MRI, a needle stick, or blood transfusion, but never talked big picture with her.  She was three.  I am forever grateful that we were spared the difficult conversations children just a few years older would have needed.  Again, Donna had no fear or context of what cancer meant or did. 

This photo was taken just two days after the news of relapse.  I was growing bigger with Mary Tyler Son and scared out of my mind for both my children.  And there is Donna, looking at me with such tender love and affection.  She is unfazed by her cancer.  She is happy, she is loved, she is secure.  Cancer could ravage her brain and body, but it could not ravage the love between us.  It could not touch our love.   

Donna and Mama

Tomorrow:  Chemo 2.0

 

Donna’s Cancer Story: Relapse

This is the second of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of treatment. 

There is no simple, linear explanation for what happened during these weeks.  After the mysterious fevers wore off, Donna seemed to blossom and become more of herself.  Her cheeks pinked up, her hair, short until now, grew curls seemingly overnight.  She was active, silly, engaged and engaging.  I coined the term “brightful” to describe her lovely combination of clever smarts and playful joy. 

Donna on the red rocker

With a few weeks to absorb the diagnosis and Donna returning to her shiny self, we settled into Threat Level Orange and were relieved to be rid of the red.  Donna was afforded some time to recover from the surgery and started into pediatric rehab three mornings weekly at the Rehabilitation Institute of Chicago.  She loved her mornings there — it was like an indoor playground.  And quickly, she regained those physical skills she had lost, though stairs, running and jumping were still very difficult for her.  The structure of the schedule was also a blessing to us after the free for all of the past month.   

Donna putting letters on the mirror

The first post-surgery MRI date came and, teeth gritted, we went back to Children’s Memorial and watched our girl be put to sleep so that we could get a glimpse of what was happening inside her tiny, beautiful head.  We worried, though there was a sense that this first MRI was not to be feared as it seemed impossible that the beast would return so soon.  Home again in the afternoon with a drunk, post-sedation Donna requiring lots of care and attention, we got the call from the nurse coordinator that while not official, the scans looked clean.  Hooray!  A second call that evening confirmed that radiology also deemed the scan clean.  Double Hooray!  It felt like the piano above our heads was moved a little higher. 

Two days later, at the clinic for a follow-up visit, we learned that the original report was wrong.  There was a “nub” at the tumor site that did not look like scar tissue.  Donna’s neurosurgeon was who caught it, and with closer inspection, all others now agreed that Donna had relapsed.   

This news sent us into weeks of uncertainty.  No one could agree about how to proceed.  Add to that, Johns Hopkins now questioned the original diagnosis.  Our oncologist didn’t want to use chemotherapy, our surgeon didn’t want to operate, our radiologist couldn’t decide which type of radiation would be best.   

  Donna on the swing

Instinctively, we joined Donna in her blissful, toddler state of being.  We went to the zoo.  We treated Donna to her first ice cream.  (She didn’t like it).  We bought a video camera and started shooting.  We did what we needed to do to fill our days, Donna’s days, until we got her to sleep and we had some time to think and breathe and feel the fear that we kept at bay when Donna was with us.  And just when we thought we couldn’t take another moment of the hell that fear is, there was Donna, right in front of us, demanding us to be silly, to sing and to dance and to play.  How could we not?  So we did.  We played and worried.  Sang and fretted.  Snuggled and tried not to drown in the doom.

As days passed, a plan was cobbled together:  Donna would travel to Houston to receive proton beam radiation treatment at MD Anderson in Texas.  Hours were spent on the phone ensuring that Donna’s treatment would be covered by our insurance.  My social work advocacy skills were a welcome tool for these tasks. 

Mary Tyler Dad wrote in our caringbridge journal during this month, “Medicine, fear, and love.  That’s what we have right now, and enough of the third is helping us struggle through the first and the second.”  Amen. 

Tomorrow:  Surgery 2.0