Tag: childhood cancer

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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

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Donna’s Cancer Story: Diagnosis

This is the first 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.  

This is Donna, my beautiful daughter, named for her grandmother, my mother, who died of a brain tumor when I was pregnant.  So many Donnas, so many brain tumors.

 Donna

Donna was diagnosed with papillary meningioma, an aggressive brain tumor on March 23, 2007.  She was 20 months old.  We learned this after an emergency CT scan was done and within moments a doctor said the words, “There is a mass in your daughter’s head.”  There is a mass in your daughter’s head.  It bears repeating because with those words our lives changed:  Just.  Like.  That. 

In the two to three weeks leading up to diagnosis, we began to notice changes in our girl.  She became moody, clingy, fearful, cranky.  Her appetite diminished and walking became difficult.  Donna was always what we called a “considerate baby.”  She was patient with her older rookie parents and had a sweet disposition.  Her personality and physical changes were concerning, but confusing, too — could they have been the onset of the terrible twos? 

No.  What we were seeing was the result of spinal fluid building up in Donna’s brain caused by the tumor growth.  Hydrocephalus can be fatal and often is.  Gratefully, Donna was admitted to Children’s Memorial in Chicago on a Thursday evening to fast track her for an MRI the next morning.  But by  six that next morning, Donna started vomiting and became unresponsive.  Her last words to me, slurred, were, “Change your diaper, change your life,” something I would say to her often.  She was rushed to the CT machine to determine what was happening.  I now understand the word ‘stat.’ 

Minutes after the confirming CT, Donna was rushed into surgery to drain the fluid building in her brain.  She was kept sedated over the weekend in the PICU and on Monday morning, bright and early, had her tumor resected.  All looked positive, as the neurosurgeon believed she had removed it all, but a diagnosis would take weeks to come back.  Even then, after Donna’s tissue was sent to Washington U. and Johns Hopkins, there was still some dissent amongst the experts.  Without a clear diagnosis, and then such a rare one, a treatment plan was not easily identified.  Watch and wait was the order of the month.  Watch and wait. 

After the initial ten day hospital stay, Donna returned home, but had several ER visits for mysterious fevers that resulted in hospital admissions.  Infectious disease was called in, but the only thought was that Donna may have had a virus.  Also possible was that the tumor that had been resected was in the left posterior fossa, where our temperature controls are housed in the brain.  No one knew. 

This picture was taken just minutes after we returned to our home from the initial hospital stay.  Donna is still in her gown from the hospital and the dressing on her head is from the first surgery to relieve the pressure from the hydrocephalus.  Our neurosurgeon used a dressing shaped like a heart.  We heart you, Dr. Bowman.  The relief in Donna’s face and posture was palpable as we carried her through the door.  I say carried because after ten days in the hospital and the few weeks of decline prior to that, Donna had lost the ability to walk.  Regardless, those were her books, her toys, her crib.  Donna was home. 

 Home from hospital

This is a photo of where the tumor was resected.  The cut is called a “hockey stick.”

Hockey stick scar

Tomorrow: Relapse