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: Spring

This is the thirteenth 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. 

The first day of this month was Easter, which seemed fitting.  It was spring, the season of symbolic rebirth.  To watch Donna during this period was to watch a flower bloom, a tree green, the grass sprout.  You know that first day of spring when you look up and the trees are covered with leaves and you realize, “It’s spring!”  That’s what every day was like during this month.  I never stopped being surprised that the little sprite in front of me was Donna and that she was out of treatment. 

Donna strolling

There was a fine balance between learning to trust in her health and reeling over her vulnerability.  It was easiest to enjoy the girl in all her glory and feel the fear, the ever present, never ending fear, away from her.  We had just transitioned Donna back to her own bedroom after months of her sleeping with us.  While we missed her and waking up to her little perfect face, the bit of space was useful to have some time together to talk and think about what had happened to our family. 

As Donna’s immune system matured we were allowed more freedoms, including being able to enroll in a story/art course with other toddlers.  Donna really liked these classes and had a great time.  She was a bit more clingy than her peers, but was attentive to the reading and really liked to get messy with the art materials.  This class was the first opportunity Jeremy and I had to see Donna in the company of her peers without cancer.  Our Donna, our beautiful girl with her peach fuzz and slim frame, was very different than the other kids we were seeing.  While they were jumping and running and shouting, she was reflective, empathic with the story characters, climbing on her parents.  She could not run or jump or push the hair out of her eyes.  That hit us hard and was the undeniable evidence of some of what cancer had cost our girl.  What it hadn’t cost her was her keen smarts or sweet nature.  Those were two of Donna’s cardinal traits that cancer did not fiddle with. 

Donna at park

Donna is mugging for the camera in this shot at our local park.  Parks were a boon throughout Donna’s many treatments as she could be outside with others when she could not be inside with them.  The other parents looked at us funny when we sanitized the swings and slides before Donna used them, but how were they to know what Donna had been through in her short life?  To them we were just germophobes. 

Another place we were allowed to go again was the market.  Donna was my girl, keeping me company at the grocery store, but only with precautions.  We were advised to only go at off peak hours and the cart required a serious wipe down before Donna could sit in it.  Again with the looks.  There was nothing that could be done.  You do what you need to do for your kids. 

With Donna, though, the looks and worries fell by the wayside.  She was the best medicine for whatever ailed you.  Even something as simple as shopping for groceries became an opportunity to be charmed by the cutest little cancer survivor you would ever meet.  With spring arriving and the weather improving, Donna helped us appreciate all that was right in the world.  One day in the parking lot at the market, I wiped the cart down, put Donna in it, then turned to get my bag out of the trunk.  I heard her laughter, turned back, and saw that the strong wind had started to roll the cart away from me.  I ran to catch it, but Donna said, “No, Mama, no hands, just the wind!”  She loved the freedom and the thrill and the unexpected movement.  This started a tradition that carries on with Mary Tyler Son to this day.  Entering and exiting the store, I run with the cart then push it ahead so he can feel the wind and freedom himself.  He loves it just as much. 

I wrote in the journal this month that being with Donna was like being with a Zen guru.  She was completely open to and aware of the beauty around us in everyday life.  “We are out in the beautiful world!”  “Look at the sun!  Look at the clouds!  Look at the trees!”  It was impossible not to feel her joy when you were in the midst of it.  We saw with new eyes, Donna’s eyes, and it was lovely.

Tomorrow:  Mother’s Day

Donna’s Cancer Story: Questions

This is the seventh 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 being bashful.

The fact that Donna’s chemo was working and working so well caused a bit of a conundrum for all of us.  Nobody quite knew what to make of it, but as the months went on it was clear that the “sledgehammer” of ICE was nearing its end.  Turns out there is only so much toxic poison you can pump into your body before it starts responding, or stops responding, in Donna’s case. 

Donna’s kidneys were showing some damage at this point.  She was on saline fluids overnight now almost constantly, infused with minerals like phosophorus and magnesium that her kidney tubules were no longer able to reabsorb.  The docs were also worried about her hearing and heart.  All seemed well and tests showed no change, but they worried. 

Our oncologist always said that not only did he treat Donna today, but he treated the future Donna as well — he was acutely aware of the risks associated with survival of one’s pediatric cancer diagnosis.   Oh, the stories I could tell you about the kids that survive their diagnosis.  But that’s a heartbreaking post for another mom to write. 

With the end of ICE — four rounds, which was an astounding feat for little, delicate Donna, she moved to a lesser regimen known as VAdriaC.  Donna presented as a shy, meek girl, but she was steel.  Administering VAdriaC was a walk in the proverbial park after ICE.  Two quick pushes of one med, an hour long drip of another, followed by eight hours of fluids.  Piece.  O.  Cake. 

With the growing awareness and concern for Donna’s organs, it was time to answer the question, “What’s next?”  This was difficult for all the stakeholders.  Because papillary meningioma was so rare, just as there was no roadmap for us the docs could provide, there was no roadmap for them either.  On October 19, 2007, I wrote this:

“What is most scary for [Mary Tyler Dad] and me is that answers simply don’t exist.  There is not a book to be consulted, or a particular expert that could say with any confidence, “This is the path you take.”  There is no way to determine when Donna has received enough chemo, or if that even exists.  We make a choice and hope for the best.  In the absence of data and research on Donna’s type of cancer, we make educated guesses guided by our team.  Talking with [our oncologist], we asked a question we’ve been afraid to ask, “Are we working for a cure here, or just to extend Donna’s life?”  It is so hard to ask a question you don’t necessarily want the answer to.  Without hesitation, [our oncologist] said, “We’re going for broke.  We haven’t done all of this for an extra six months.” 

So, you see, the stakes were high. 

And next to those lofty questions were more pressing issues, pun intended.  Constipation, or “Connie,” as I called her, was Donna’s arch nemesis.  Donna responded to all chemos the same way:  her poop chute shut down.  And I write in jest, but Donna’s constipation was terrible.  Horrible.  The chemo did its thing and then the appetite went and then thirst went.  Nothing was going in, so nothing was going out. 

And the means to manage Connie were either useless or cruel.  Elimination became tortuous at times.  It was not uncommon for Donna to go 4-6 days without a movement.  And when Connie was hanging around, hemorrhoids were sure to follow.  This was a cycle that could not be stopped.  As a parent, you felt useless and negligent.  To this day I don’t eat bananas in solidarity with Donna.  Poor, dear girl.  Something so basic, so primitive as poop, became simply torture for her. 

But enough about poop.  The three pictures today are from a simply perfect fall day at Wagner Farm in Glenview, taken during Donna’s one week of health.  Auntie was in town and we had a grand time, despite the fear of God that large farm animals instilled in Donna.  She rolled with it and spent time with the pumpkins instead.  Gourds are much less threatening than horses.  Donna was shining from within on this day.  She had her Mom and Dad and silly Auntie and that was all she needed.  The sky was blue, her head was bald, and Donna didn’t give a fig. 

I have thought often of just how much we were spared that Donna’s cancer came to her at such a tender age.  She was free of fear, free of context, free of self-consciousness.  She didn’t know what cancer meant, didn’t know that childhood was not supposed to include things like MRIs and surgeries and “tubies” and hospitals and a prognosis.  When people stared at her, and they did, I believe she either didn’t care, or was just  used to being stared at, as toddlers often are. 

If you see a bald child, smile.  Look their parent in the eye.  Let them know you understand.  Be aware that you are looking at greatness.  Know that kid is amazing and brave and so very, heartbreakingly vulnerable.  Just like Donna.

Big horses are scary.

Donna and Mama and pumpkins

Tomorrow:  Stem Cell Harvest