Tag: Childhood Cancer Awareness Month

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Donna’s Cancer Story: Whiplash

This is the twenty-ninth 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. 

Last month ended with Mary Tyler Dad and I clutching to The Bubble.  But you can’t clutch a bubble, can you?  It just doesn’t work.  The bubble pops and — poof — it’s like it never existed in the first place.  

The day after Donna’s fourth birthday, we had a set of scans done to determine what type of effect, if any, the oral chemo was having on her brain, spine and lungs.  Late that evening we got a call from our oncologist that there was a pneumothorax in Donna’s left lung.  Left untreated, it could result in her death, suddenly and without warning, and, he said, it would not be a pretty death. 

The recommendation was to be hospitalized and have Donna treated with “pure oxygen.”  The idea is that the pureness of the oxygen would encourage the lung to seal itself, correcting the problem.  Most likely, the lesions on Donna’s lungs, those “immunerable” lesions, were eating away at her tissue.  It was unbelievable that our daughter with a brain tumor would die of lung disease.

As we had done, we used Donna as our guide.  Her quality of life was still outstanding.  As cumbersome as the meds were, she was tolerating them remarkably well and, as she was wont to do, thriving.  The docs agreed that because of that, treatment was in order.  Mary Tyler Dad and Donna packed up and were admitted that evening.  This was our first hospital stay since Indy and we opted for a man:man defense.  I would be at home nights to nurse Mary Tyler Son, and Donna and Daddy would have sleepovers at the hospital until discharge.

Well, the pure oxygen didn’t work.  Possibly because Donna hated the mask that was required for it to be administered.  When you know your child’s time is so limited, to see her in a bed strapped to a mask she fears, will wreck you.  All docs involved moved to the idea of a chest tube to drain the liquid gathering in Donna’s chest.  Ironically, it was called a “pig tail.”  Such a benign name for such a tool of torture.

It was inserted easily, under anesthetia.  When Donna came to, she was lovely and hungry.  Three hours later, after the anesthetia wore off, Donna began to experience pain.  Deep pain.  Wounding pain.  Intense pain.  Donna begged for medicine, wailing.  Nothing could be administered quickly enough.  And God love them, as hard as the team tried, as responsive as they were to her pleas, Donna’s pain was difficult to manage for twelve hours. 

Once morphine on a constant drip had been instituted, things calmed down.  Donna napped.  Mary Tyler Dad and I took a break in the hall that quickly dissolved into our own tears.  Mary Tyler Dad wrote, “We are now the scary parents at the end of the hall who have no more options open.  We feared them, and now we are them.”

Those of you who are Cancer Parents know who I am talking about.  The crying, sobbing, broken parents who wail loudly or quietly, but you hear it just the same.  When you are new to treatment, you see them and their displays in the halls — the only place available to step away from your child and the crushing news that there are no more options for their child.  You turn away because their pain is too close, too scary and too unbearable.  It is their pain, not your pain, and you don’t want to be near it.  Until it is your turn and it becomes your pain.

All apologies to the parents who witnessed the depth of our pain that evening. 

Slowly, the chest tube did its work.  The hole in Donna’s lung sealed and we went home late on a Monday night.  Tuesday was lovely.  Our girl was back!  She was the same brightful, shiny girl we remembered.  The pain seemed a steep price to pay, but the right choice to have made.  We were grateful.

Early Wednesday morning, though, Donna, sleeping in bed between us, seemed different.  Her breath was fluttery and rapid at the same time.  Shallow.  I noticed it, Mary Tyler Dad noticed it.  Moments later, Donna awoke.  “Are you having trouble breathing, girl?” I asked.  “Yes, Mama.”  We called the hospital and were told to come in straight away.  Donna was not comfortable.  Unhappy.  Listless.   

As we pulled into the hospital driveway, we ran into Dr. Stew who asked after our girl.  When he saw her, he told us he would be to the ER soon.  The docs did their thing, more x-rays.  Horrible x-rays that involved Donna sitting in a wood chair, elevated above us, with her arms outstretched, and straps holding her thin wrists to a board behind her.  Christ-like and execution-like simultaneously.   The memory of her strapped to that board will plague me until the day I die. 

Mysteriously, we got word that all was well, but she was so unhappy, so uncomfortable.  She missed her brother and grandmother.  When we showed her a photo of Mary Tyler Son, Donna slapped it away and screamed, “NO, the REAL one!”  A few moments later, upon further review, a new pneumothorax was found on the right lung.  The dreaded oxygen was advised and started again.  More masks.

Donna fell into a deep sleep.  She was unarousable.  Our team had assembled across the hall and asked us to step out and talk with them about a plan.  Mary Tyler Dad wrote at the time:

“We decided with great sadness that we will be together as a family, at home, and we will let the disease take its course.

Why? How can we do this? We’ve said often among ourselves that Donna would provide our cues. She was listless, exhausted. She wanted to be home with her brother. We have fought and fought and fought this fucking thing. It has taken the deadliest poisons and hottest burns and sharpest knives and just grew right back. No matter what, her time is limited now. We decided today that instead of trying to make it as long as possible, we will make that time as comfortable as possible.”

We said heartfelt and tearful goodbyes to these amazing humans who were responsible for caring for our Donna.  Who worked like hell to allow Donna to grow from a toddler to a young child.  Our neurosurgeon came down in her scrubs, fresh from surgery when she heard the news.  Four of our nurses from the oncology unit came down.  And our beloved Dr. Stew, who will never understand the esteem in which we hold him so dear to us. 

Science had failed our girl, not these beautiful people. 

Advance directives were signed, arrangements were made for oxygen to be brought to us.  Palliative care was quickly changed to hospice care.  An administrative box was checked and our girl would die.  Calls were made and family from the east coast scheduled flights to be with us for Donna’s death.  They brought black to wear.   

We walked across the hall, back into the ER, to find Donna resting comfortably with a favorite volunteer at her side.  Shortly after we arrived, Donna awoke.  She smiled.  She was attentive and affectionate.  We told her we were going home.  She was happy.  We took one last tour of 4 West and it was anticlimactic.  Nurses were busy with other patients.  Life moves on, even in Cancerville.

Walking out of the hospital, I felt liberated.  Fuck you, cancer. 

When we got home, Donna cheered to see her Da and Auntie.  She ate, and ate a lot.  She wondered when we would go to the Target.  When we would go to the Target?  What the what?  It never worked this way in Lifetime movies. 

Rasberry Jam 

Well, we went to the Target.  The last thing I had said to Donna the night before was that we would go to Target in the morning.  “The one with the escalator, Mama?” she had asked, hopefully.  “Yes, Donna.”  We spoiled our girl rotten that night with Fruit Loops (“rainbow cheerios” is what Donna called them and they were contraband in our home) and frozen pizza and games and toys.  Target is still the promised land for me.

Donna woke the next day and wondered what was for breakfast.  That night she made a guest appearance at the annual Run for Gus, a 5K that raises funds for pediatric brain tumor research at Children’s.  She wore her tutu and posed with the runners of Team Dancing Donna wearing their own tutus.  Donna had some things to do and didn’t get the memo from cancer saying her time had come.  Family joined us at the event and we celebrated and were happy, so happy. 

Run for Gus

Until the Cancer Mom spoke, a featured speaker to rally the runners.  She talked about her own daughter and the brain tumor she had fought, “successfully.”  She proclaimed that she “wouldn’t let cancer take her daughter.”  Now why hadn’t I thought of that?  I had no idea it was possible to simply refuse cancer my daughter.  Who knew?  Bitter humor, I know, please forgive me, but words matter, people.  They do.

Donna woke the next morning and the next and the next and the next.  Always demanding to know, “What’s for breakfast?”  I had a hard time sleeping next to her.  I would fall asleep easily, my head searching for the comfort of girl and pillow, but inevitably, I would wake and watch Donna’s breathing.  It was anxiety provoking.  I learned to move into the living room and soothe my fears with bad tee vee.  It was easier than sitting in the darkness watching and waiting. 

Auditoreum Theater

So much more happened this month.  Donna’s guardian angel, her dance teacher, her CBLO (Chief Bucket List Officer), arranged for a private dance party for her and her playmates at the studio where she took lessons.  This same gal arranged for the Field Museum to gift Donna with a box of all things dinosaur, as Donna was obsessed with them and their bones.  And for the Joffrey Ballet Company to send along a pair of prima ballernia toe shoes, poster, and coffee table book about the Company.  And for the Auditorium Theater to open their doors on a weekday afternoon so that the sweetest dancer in the world could dance on one of the finest stages that exist.  All of these things happened just days after that last ER visit.  Life was improbably good.  We made a new bubble and climbed right in.

Tomorrow:  Choosing Hope

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Donna’s Cancer Story: Terminal

This is the twenty-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 cancer treatment. 

Tiny Dancer

(All photos courtesy of Joel Wanek, Joel Wanek Photography)

In her last week of treatment, a lump was detected in Donna’s neck by the staff at the proton beam radiation center.  At the end of her morning treatment, I was called back to the recovery room, just as I was every day.  Greeting me, standing over a still sedated Donna, was one of the medical directors.  Oh, no, I thought, what is this?  There was no suspense involved,  “I see a lump in her neck and it is suspicious for tumor,” he said.  Just like that.  The pit that exists in every Cancer Parent’s gut grew from a pea to a watermelon for me within moments.  I had seen the lump in question in passing the night before.  Donna was in our room with her playmate and I was walking out into the hall when I turned around to say goodbye and saw it.  A fear flashed in me, but Donna’s neck turned and it was gone.

Except it wasn’t gone.  It was there and it was suspicious for tumor.   I knew it.  I felt it.  It seemed impossible, as we had had clean scans just fifteen days prior, but cancer knows no boundaries.  It does what it wants when it wants.  True fact.  The suggestion was made to head over to the local hospital for an MRI.  One of Donna’s sedating doctors who had treated her previously was there and had generously agreed to stick around and sedate her for the scan.  We could take her right away.  A dual sedation is never recommended by medical professionals, that’s why Donna had her picc line inserted without it, but in dire cases, you do what needs doing.  Clearly, this was a dire case. 

I called Mary Tyler Dad at home in Chicago and caught him on his way out the door.  He drove directly to Bloomington to meet us at the hospital.  He made record time.  I felt terror.  If you have not felt terror, you don’t ever want to, and if you have felt it, you know precisely what I mean.  Images seem to work better than words, so you can think of it as a swirling, growing, angry hurricane of hell in the middle of your gut.  You are powerless. 

Thankfully, Auntie was with us and came to the hospital.  I don’t remember getting there.  I do remember registering.  Sitting with my family in a waiting room, such a benign, innocuous space.  I don’t remember my children there.  I remember my sister and her knitting bag resting on a chair.  I remember bringing Donna into the MRI room, but not dressing her in a gown or her being re-sedated.  I remember the kind face of the doctor who had sedated Donna numerous times at MPRI.  I remember sitting in the cafeteria with a turkey sandwich in front of me, but not how I got there or how it got there.  I remember Mary Tyler Son wailing, and me not being able to hold or comfort him.  I remember Mary Tyler Dad finding me and holding me.  I remember splitting the sandwich and it tasting like lead fabric.

The scans were complete and we all joined Donna in the recovery room.  She was hungry and ate french toast sticks and syrup.  We were both sticky as she was sitting on my lap.  We were discharged and a friendly nurse wheeled me and Donna out the door to the car, “Hospital policy,” she cheerfully remarked.  In the car on the ride home, we heard from Donna’s doctor in Bloomington that the lymph node was not attached to tumor.  It could be cancerous, but it was not the tumor we had been treating.  That brought comfort.  The plan was to finish out the week and follow-up with our team at Children’s in Chicago.  This put a pall on our last week of treatment and our remaining time at Jill’s House.  Of course, it did.  For Donna’s sake, we worked hard to focus on what she had accomplished.  53 proton beam radiation treatments spread out over twelve weeks.  We had lapped every other guest at Jill’s House.  All our neighbors had moved on and back home. 

Donna’s going away party was lovely.  Our closest friends, the manager and her children that lived onsite, were there and kept us from jumping off a cliff.  There was pizza and decorations and a dance party.  Oh yes, a dance party.  I have such a beautiful sense of that last evening, spent in the company of dozens of people affected by cancer.  Some young, some old.  We all danced together.  We put bean bags on our heads and pretended to be sleeping fish.  All of us.  You have not fully lived until you have danced with young and old alike. 

Obituary Photo 

We got home late on a Tuesday night.  On Wednesday morning we headed to Children’s to meet with Donna’s oncologist.  Within minutes it was clear that there was concern.  It was confirmed by the look in Dr. Stew’s eyes.  He is an outstanding human being, that man, but he does not have a poker face.  We met with a surgeon and had a CT scan of Donna’s lungs.  In hospital time, those things take days or weeks to schedule.  Unless your daughter is dying.  Then, it is mere minutes.  After the scans, we were sent home to await the results.  I dropped Mary Tyler Dad at home with the kids and went along to the grocery store.  We weren’t even home long enough to get milk and bread before the call came.  Donna’s lungs were covered with lesions, her lymph nodes were full of cancer.

I got the call driving down Touhy Avenue, the milk and bread in the trunk.  I had to pull over.  It was Mary Tyler Dad who called me.  I called Dr. Stew immediately.  There was nothing to be done.  The forecast called for a good summer, possibly fall, but Donna would die.  It was the first week of June. 

The plan was to put Donna on an oral chemo that could eek out several more months, we hoped.  She was completely asymptomatic, so preserving time was the goal.  If the oral chemo was easy enough for Donna to tolerate and had the chance of extending her life by weeks to months, we decided it was worth it.  No more hospital stays.  No more scans.  The cancer would run its course, but with Donna living so vitally, we wanted to prolong that as long as possible.  Dear Donna.  My daughter was dying of cancer and to look at her was a total disconnect.  Dr. Stew had said once of her, “She may have a brain tumor, but she is not a sick child.”  He nailed it with that statement.  Donna had lived with cancer since she was twenty months old, but it never prevented her from growing, learning, developing, being a child.  That was one of our blessings. 

I wrote at the time:

“Today, right now, she is not suffering.  She is chatty, hungry, silly, thoughtful, playing catch and riding her tricycle.  Two years ago this week, when it was first learned that Donna’s cancer might have spread to her lungs, we had a prognosis of 2-3 months.  If someone had said on that day that Donna will survive two years plus I would have thanked my lucky stars.  Now that that time has passed, I remain grateful, but hurt in my bones that more can not seemingly be done to right the terrible wrong which grows inside her.  It is so wrong to lose a light this bright, a girl this loving, a daughter and granddaughter and cousin and friend, and sassy willful wonder.  I ache.  We ache.  But there is not a lot of time to ache right now as Donna still thrives.  We must connect to that while we can.” 

And so we tried.  Her VP-16 was disguised in pudding and her Temodar was disguised in ice cream.  These are meds that an adult would swallow in pill form, but Donna was too young for that.  Instead, I put on blue rubber gloves to protect my skin from the poison I stirred into her pudding and ice cream.  God help me.  Donna would sit on her Daddy’s lap and we would all resign ourselves, the three of us, to what was done in the name of preserving the life she had in her.  Like most young children, Donna did as she was told.  It is heart wrenching to spoon feed your daughter poison that you know, at its optimum, will provide a few more weeks to her cruelly young life.  But that is precisely what we did.  A wise RN told us early in that if we let her, Donna would be our guide.  We let her, and it was clear to us that Donna wanted to be with us still, despite the injustices of a mother and father spoon feeding her poison laced ice cream and pudding.  Seconds after the last spoonful, Donna would pop up and out of her Dad’s lap and race to the kitchen room or play room or to her brother.  Yes, she was our guide.

Several weeks later, Donna danced in her studio’s annual dance recital.  It was Father’s Day.  Her hair had started to thin, she would lose it again, we knew, and some low grade fevers from the chemo had started.  Donna had practiced her dances throughout her time in Bloomington.  When we returned, she joined her classes again.  Her teacher and studio could not have treated us with more kindness, sensitivity, or love.  Donna and Mary Tyler Dad were given private lessons to perform with some others in the Daddy-Daughter Dance.  It was Donna’s favorite.  The studio director made certain to accommodate Donna on this day with the knowledge that she would never dance publicly again.  We had reserved seats in the audience.  We got to watch a dress rehearsal so we could see Donna on stage more than once.  A professional photographer was brought in to capture the day for us.  All of this was discrete.  My guess is that the folks in that audience who knew Donna was dying were sitting in the row reserved for our family.  We remain grateful for this beautiful gift of a day where Donna was just another girl, nervous to dance in her first recital.  

Blues Brothers 

Somehow we sat in that audience of over 500 proud and happy parents and we watched our girl, knowing she would leave this world much too damn soon.  Somehow we didn’t wail or convulse or vomit.  Somehow we kept this news to ourselves, stifiling the urge to yell and scream and rail at a universe that could be so cruel.  Somehow Mary Tyler Dad performed with Donna, his Father’s Day gift that must last a lifetime.  Somehow you’re still reading this note.  Somehow I’m still here to write it.  Somehow my beautiful Donna is not with me.

Tomorrow:  The Bubble

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Donna’s Cancer Story: Infection

This is the twenty-sixth 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 cancer treatment. 

Pensive Donna 

(All photos courtesy of Anne L. Geissinger, Pixeldust & More)

Ten days of this month were spent in a children’s hospital in Indianapolis with a double port infection.  During those ten days I must have thanked my lucky stars approximately 673 times that we lived in Chicago and were treated at Children’s Memorial.  Donna’s beloved tubey had to come out, requiring the insertion of a picc line in her left arm.  These were scary, awful days.  Some of the worst since 2007’s stem cell transplant, and that’s really saying something. 

The origins of the infections were unknown and while many children with cancer experience numerous infections, the only infection Donna ever had was during her stem cell transplant.  The worst thing a Cancer Parent can hear in the midst of treatment is ‘infection.’  Scratch that.  ‘Relapse’ is the worst word, though infection is a damn close second.  Wait, you can add ‘terminal’ and ‘hospice’ to that list, too.

The ten days felt more like ten years and included being transported to Indy from Bloomington via ambulance due to Donna’s raging fever that came out of nowhere and sent her into a shaking bundle of discomfort.  Terrible ER care.  Misdiagnosis.  Hearing from our team in Chicago that Donna had an infection before the Indy team even knew.  How that is even possible is still beyond me.  Alarmist rhetoric from an unfamiliar oncology team that clearly were annoyed by my advocacy skills.  Perhaps because they were on the receiving end of them?  I was told by the head of pediatric oncology that Donna was receiving ‘adequate’ care.  “Adequate care,” I told him, “is not good enough for Donna, or any child in your care.” 

Blue Eye

This is a bit stream of consciousness, so bear with me:

Staying in a hospital room with two children, one of whom wanted OUT (Donna) and the other of whom (Mary Tyler Son) was not allowed out of the room because as an infant he was not yet fully immunized.  This was at the start of the swine flu epidemic, for added drama and paranoia.  A port removal surgery scheduled at 9:30 p.m.  I remember being with Donna in surgery, and Mary Tyler Dad being in Chicago, but have no memory of where Mary Tyler Son was or who was with him during those hours.  My Dad?  You?  

Placement of two IVs in Donna’s hands, rendering her unable to use them at all; we called them her “claws.”  A picc line insertion done without any sedation, Donna screaming to the surgeon, “NO MORE LIDACAINE!”  A surgery without sedation is incomprehensible.  Going back and forth daily to the proton center via a 70 minute ambulance ride so we wouldn’t fall behind in treatment.  The RN that had to accompany us talking on her cell phone the whole ride.  Some EMTs offering Donna donuts on the ride home and others refusing to allow her to eat because of liability reasons.  Donna losing her will. 

That was scariest of all.  When the IVs were inserted in her hands, without any discussion with me about placement, they left Donna unable to feed herself, move herself in bed, or play easily.  She simply started to fade.  It was sad and scary and painful – – no doubt duplicating how Donna was feeling herself.  We got through it, and returned to Jill’s House in Bloomington to resume treatment, but those ten days were scarring in so many ways. 

Donna on her bike 

Remembering these days now, I still feel so impotent to stop what was happening.  I am certain that the care at that Indy hospital must be better than what we experienced, but it feels like Donna’s care was doomed from the moment she was wheeled into the ER.  Having worked in health care for so long, I know that sometimes that is precisely what happens.  Mistake after mistake, arrogant doctors who cover other’s mistakes with defensiveness, unfamiliar staff who saw us as a short time problem to endure.  And Donna caught in the crossfire.   

Later in the month, on another trip home to Chicago for scans, we got the best news possible, that the small lesion in Donna’s neck was shrinking.  The proton beams were working.  Donna was recovering from the infection setback/trauma as were Mary Tyler Dad and I.  We saw the lights at the end of the proverbial tunnel, but I lost some of my fight this month. 

In working to advocate for Donna, in trying to discuss all of the mistakes and mishaps made by hospital staff that harmed our girl, I was defeated.  Even the most basic of things.  I could not take Mary Tyler Son in the halls, which meant I could not leave to get food for myself.  I was not allowed to order food through the hospital.  I was not eating.  A nursing mother not eating and no one seemed to care. 

Family in Bloomington 

When I asked to speak to a patient advocate, the gal I was referred to listened politely, but only wanted to know if I planned on hiring legal representation.  I stepped back.  Donna and Mary Tyler Son needed me more than I needed to grind my axes and rail at the injustices of alarmingly poor pediatric care.  We just wanted to get the hell out of Dodge. 

It was suggested during this period that I might want to start Mary Tyler Son on formula – – that the stress of nursing was too much in the midst of this cancer chaos.  I strongly declined.  Some days the only time I held him was when he was suckling.  I wish I remembered more about his infancy.  Those lost memories are another casualty of cancer.

All of the photos you see today were taken by my friend, a photographer, who visited with her youngest daughter for a week to tend to us and shoot Donna.  More than any others, these photos cut to my core.  They capture Donna in all her splendor, remind me of her wisdom, her wonder, her tenacity, her strangely knowing eyes.  The deepest blue eyes I have ever seen.  My memories of Donna are shaped by Anne’s photos of her.  That is a gift I can never repay.  Taken just a couple weeks after the infection ordeal that was already becoming a memory.   

Wonder

You see, the wind blew with Donna’s health.  When she was well, we were well.  When she struggled, we struggled.  She had no inclination to wallow in or pity her situation.  She wanted to live.  She knew, intuitively, that life was a privilege and she did not waste a moment of hers. 

Tomorrow:  Terminal