Tag: relapse

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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

 

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Donna’s Cancer Story: Relapse 2.0

This is the sixteenth 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 and Da

My Dad is very fond of saying, “Don’t worry about a thing, nothing will come out all right.”  Melancholy words from an old man sad about the death of his wife and the cancer of his granddaughter, both named Donna, both with brain tumors. 

Just as we were getting comfortable with a new routine, we all got suckerpunched in the form of an MRI.  On the first day of this month a small spot appeared at the original site of Donna’s tumor that was read as “worrisome.”  No one would officially call it tumor, but the recommendation was to re-scan in 4-6 weeks.  Within days, that was cut to under four weeks, as Dr. Stew grew more concerned.  No one wanted the beast to have an opportunity to spread.  If this was a relapse, the strategy was to catch it early. 

Waiting is its own form of hell.  And when you are charged with waiting you know that your life will take on an unbearable quality.  Everything around you becomes a more intense version of itself.  The sky is bluer, the clouds puffier, the flowers more brilliant — the appreciation becomes burdensome.  Except with Donna.  Her smiles were more tender, her kisses sweeter, her words more profound.  You want to capture everything and commit it to eternity.  Just in case. 

These were the days when reading three books before bed became an exercise in willing myself not to cry, not to lose it in front of Donna  It is amazing how profound children’s books become when you think your child is not long for this world:  “It’s time for bed, little mouse, little mouse, darkness is falling all over the house.  It’s time to sleep little deer, little deer, the very last kiss is almost here.”  Mem Fox wrote those words and their beauty cut me like a knife.  I would read to Donna in these weeks and my voice and lips would quiver and I would pinch myself, hard, so that I did not fail her in those moments. 

Donna was just as she had been — amazing.  She got another blood transfusion this month, still not completely recovered from the stem cell transplant, but day-to-day she was perfect.  Funny, sassy, clever, bright, singing, dancing, eating.  She felt good, which was a blessing, but a disconnect.  Donna felt good, great even, but we knew different.  We knew she was headed back into the mouth of the beast.  How does a parent erase that knowledge, that fear?

In the midst of all of this, becasuse cancer is a rude beast, we were planning a Christmas in July 3rd birthday extravaganza.  Donna had missed Christmas last year with the stem cell transplant and her 2nd birthday was squeezed in between moving and chemo rounds.  We wanted three to be different and saw it as an opportunity to say thank you to all our friends and family who had been supporting us so completely. Santa and his elves got busy in our home and there were decorations, cookies, a tree, and a gift for each kid that made it to the party. 

Christmas in July

Donna, the least acquisitive kid I’ve ever met, asked for flowers and a cake for her birthday.  Donna, you see, was amazing. 

Two days before her birthday, a repeat MRI confirmed the tumor had returned.  The day before her birthday she had a spinal MRI and the day after, bright and early, was a lumbar puncture and bone marrow aspiration.  The docs needed to stage the disease, yet again, to determine if it had spread.  More waiting.  This was no way for a girl to turn three. 

Despite that, Donna’s birthday was beautiful.  Somehow we managed to banish the fear and celebrate her life, celebrate her still being with us.  Our home was filled to capacity with family and kids and the loveliest assortment of friends from Cancerville and our lives before cancer.  The kids that weren’t too fearful to see Santa were treated to my Dad in a hot, furry suit in the middle of July.  Donna, too, was afraid, but relaxed when she realized it was her Da. 

Inevitably, some folks approached us with the sad smile and tilted head, “How are you?”  Cancer Parents know what of I speak.  That question was not allowed on Donna’s birthday.  The tilted head is the classic posture of pity and I could not handle pity when it was all I could do to stand up.  I hated the tilted head and found myself mimicking it to see if the folks tilting their own heads would be aware of my tilt and straighten theirs in response.  That worked about 50% of the time.

In this same week, we learned that there were concerns about Mary Tyler Son growing in my belly.  My bloodwork was off and they were recommending an amniocentisis as the presence of Down’s Syndrome was feared.  This raised a whole host of other issues, but one thing we knew after so much waiting with Donna, was that we could not wonder for six more months if the child I was growing would have Down’s Syndrome.  On the day Donna’s relapse was confirmed, just minutes later, our phone rang again.  It was Northwestern calling with test results.  The baby was healthy.  Did I want to know it’s gender?  No, thank you, I said.  I hung up the phone and I wept.  And wept.  And wept.  Babies are so hopeful, the perfect bundle of potential.  Ours was healthy.  We hoped the same for Donna. 

Birthday Girl

Tomorrow:  Surgery 3.0

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Donna’s Cancer Story: Surgery 2.0

This is the third 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.

Full disclosure here, I feel guilty about what you readers are experiencing with this effort of mine.  I’m a clinical social worker and know full well of a phenomenon called ‘vicarious traumatization,’ which happens when a trauma specialist spends day after day being exposed to another’s trauma.  Mea culpa, my bad.  But here you are, and here I am, so let’s get to it:

Donna looking up with big blue eyes

Whiplash is what comes to mind in this third month of Donna’s treatment.  The month started with a plan to temporarily relocate to Texas for proton beam radiation treatment at MD Anderson.    Yes, Houston, we have a problem.  Three days before our departure, Donna had an MRI at Children’s to establish a baseline for her treatment.  Before even leaving the hospital, our neurosurgeon called us to report that the “nub” of a brain tumor detected just 21 days earlier had experienced “explosive growth.” 

What unfolded in the next days is something I would not wish on any living soul.  Plans were quickly scrambled and a surgery was scheduled.  Just ten weeks after her first resection, Donna’s brain would be cut open in the exact same location.  This surgery took longer, though the recovery was much quicker.  Donna, the bull that she was, sailed through.  Her oncologist once referred to her as a “sweet princess” and I felt the need to correct him.  Donna was never a princess, she was more of a tough cookie.  Always had been.

On the heels of the surgery, while Donna was recovering in the neuro unit, the oncologist came by late in the afternoon a day or two later to toss out the suggestion that he would like to have a full body scan to rule out any migration of the cancer.  This sounded ominous to me.  Nothing like this had ever been mentioned or suggested before.  A pit embedded itself in my stomach and did not leave.  This photo was taken just minutes after that discussion.  Donna was in heaven and we were in hell.

Donna in the hospital

The CT scan revealed our worst fear:  Donna’s cancer had metastasized to her lungs.  I wanted to vomit, instead I started to gasp for breath and wailed repeated apologies to Mary Tyler Dad, “I’m so sorry, I’m so sorry, I’m so sorry,” over and over and over.  I felt guilty for something I had no control over.  I felt heartbroken that this was happening to my husband and daughter.  They did not deserve this. 

We were gently and compassionately advised by Donna’s oncologist that it would be perfectly reasonable to not treat the cancer and let Donna enjoy the time she had left to the best of her ability.  A prognosis of 2-3 months was given.  Alternately, we could pursue chemotherapy with no roadmap or certainty that it would help.  Papillary meningioma has a poor track record if not cut out.  It tends to migrate and be non-responsive to adjuvant therapies like chemo and radiation, but the sample numbers were miniscule (as the diagnosis is so rare.) We were offered the shot.  They discharged us with the assignment to think it over. 

And this is where the whiplash comes in.  How does one carry their child home from the hospital with no treatment plan and a prognosis of 2-3 months and “think it over.”  And Donna, bless her beautiful, innocent soul, had not a care in the world.  She was happy, felt great, was recovering nicely from her second craniotomy.  She just wanted to play and laugh and dance and read and giggle and be her own joyful self.  Here is a passage I wrote in our caringbridge journal from this month:

“There is a tenseness that does not go away, ever.  It is in our sleep, our wake, our breathing.  It is too difficult to imagine what we could lose and so we only deal with it in these incredibly potent, concentrated bursts of terror, doom, fear, and dread.  And then we have a tea party with Donna.” 

There were many tea parties with Donna this month, despite our dire circumstances.  Park visits, zoo visits, play dates.  It was spring, and trees and gardens were waking up.  Donna, you see, was still just 22 months old.  She knew what she knew and wanted what she wanted.  We did everything in our power to protect and preserve her childhood.  We needed her innocence just as she needed our protection.  Mary Tyler Dad said it best, “She is an opiate for pessimism and despair.” 

The family relaxes in the eye of the storm.

We took our cue from Donna, just as we had been advised to do by our wise and gifted nurse coordinator.  Donna was life.  She was so vibrant and vital and alive, that in the end, our choice to pursue chemo was made by her.  These days, the docs no longer tell you what to do, at least in our case where there was no track record of whether or not any of our options would work.  The choice was ours.  A game designer and social worker left to fend for themselves in this new terrain of medicine where the stakes were impossibly high.  Sigh.

Before chemo could begin, Donna’s disease needed to be “staged.”  Lord, how I hated that word.  Staging is a series of tests performed over a number of days to determine if and where the cancer has spread.  The anxiety will bring you to your knees.  Bar none, waiting for test results is in my Top 5 Worst Things About Being a Cancer Parent. 

Our timeline was so compressed that the docs admitted Donna to oncology before we had any results.  Chemo was ordered and administered literally moments after our oncologist gave us the good news that Donna’s bones had been spared.  Poor guy was tackled by me with hugs and wails of relief.  When the toxic chemo started to drip in Donna’s veins, she was sleeping.  I was huddled in a corner wrapped in a prayer blanket that had been gifted to me that morning.  There was a hush in the room  and the nurses silently completed their task.  The space felt sacred. 

Tomorrow:  Chemo