Donna’s Cancer Story: Choosing Hope

This is the thirtieth 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.

Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what’s happening with your treatment.  Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates.  Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen.  Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody.  Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer.  Some will live in Scarred Acres the rest of their lives.

Our family knew the move to Grieving Heights was on the horizon, but we weren’t ready to pack just yet.  There was a beautiful surrealness to this month.  It felt normal.  Normal is something you crave when you live in Cancerville.  I was doing dishes one day, one of the chores I had missed with all our supportive family around to take care of the details, when I was rinsing out an empty ice tea bottle.  I unscrewed the cap and noticed words on its underside:  “Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.”  (Martin Luther)

It’s crazy how the words on a discarded bottle cap can change your life, but these did mine.  That they were spoken by the architect of the Protestant Reformation is simply ironic bonus.  They stuck with me for days, Luther’s words, popping in and out of the precious moments with Donna spent doing the most mundane things.  An ordinary life, full of park visits, and naps, and errands, and simple dinners was a haven to us.  Every single thing in those days felt innordinately brillaint and beautiful and fleeting.

As the words marinated in my thoughts, I began to see the connection between them and our mantra throughout treatment to ‘choose hope.’  I wrote about it at the time:

“When all of this began so long ago and I first typed the  words ‘choose hope,’ my guess is that most folks assumed the hope was for Donna’s cure.  If I’m honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? 

As much as I hoped for a healthy Donna, there were other things I hoped, and still hope for.  Hope to get through the day.  Hope that there will be another day with Donna.  Hope to find the joy in life.  Hope to not become bitter or angry.

Hope to find a way to live with the cancer in our lives without it overtaking our lives.  Hope to adopt a child, knowing that Donna would not be able to carry one herself due to treatment and to provide her with the knowledge that familes are made in all different ways.  Hope that when Donna was uncomfortable or in pain, that it would be transitory and she would bounce back.  Hope that [Mary Tyler Dad] and I would remain strong together. 

Hope that Donna would find the world a lovely, beautiful, wondrous place – – a place she wanted to stick around in.  Hope that the docs would stumble upon something that somehow hadn’t cured the kids that had come and gone before Donna.  Hope that our lives would find their way back to normal, even if that looked different.  Hope that if Donna did die, [Mary Tyler Dad] and I would somehow survive.  Hope that [Mary Tyler Son] would not be burdened by our grief.  Hope that joy will always be with us.  Hope that we will not be alone. 

The hopes change and continue to evolve, as they should.  At the base of all of them, though, is that we, this family, whatever that may look like, will somehow survive.  Some of the choices we’ve made along the way have pointed to this.  Buying the larger home two years ago; pursuing the fancy pants pre-school for Donna, a place we felt could nurture her smarts and spunk; welcoming [Mary Tyler Son], or ‘Little Fatty Chumpkin,’ as Miss D calls him; enrolling Donna in dance class and pursuing it despite relapse after relapse after relapse. 

These have all been choices, conscious and deliberate choices, made in the face of cancer. These are our apple trees.  And my latest hope is that these trees will sustain us when our world does go to pieces.  That these trees will feed us and shade us and shelter us from the inevitable storms that will be.”

Stylish Donna 

In that vein, as Donna’s most desired apple tree, we sent her to pre-school.  More than any other thing, Donna wanted to go to school.  Good Lord, if there was ever a child that walked this earth that was built for school, it was Donna.  Mary Tyler Dad and I plotted and fretted and steeled ourselves for how the staff that had so hopefully accepted Donna the previous winter would react to our decision.

Turns out, with loving and open arms.  We met with Donna’s three teachers and the school RN and the Admission Director and devised a plan.  We discussed how other children might react and concerns their parents might have.  We came to the meeting holding a letter from Dr. Stew, explaining why Donna physiologically was not able to be toilet trained (Stew would have done anything for Donna, even enable her with the one place she could and did exert her control.  “I am too young to sit on a toilet,” she told us time and time again.)

Donna painting

It’s hard to grasp and capture the suspended nature of those weeks Donna was in school.  I felt like such a Mom.  A happy mom, a loving mom, a busy mom, a SAHM.  The reason why I was staying at home was immaterial.  For those brief weeks of Donna thriving despite the beast growing inside her, having its way with her under our helpless watch, I got to be the mother of two.  I took Cancer Mom’s cape off and got to be simply, Mom. 

In these days, our neighbors, Chabad Lubavitch Jews, encouraged us to travel to Queens, New York with Donna, where the leader of the Hasidic movement was buried.  They believed that his burial place had healing powers and thousands travelled there daily and were cured from illnesses as critical as Donna’s.  If we were not to travel, they encouraged us to send a prayer via email and it would be placed at the Rebbe’s grave. 

We are not religious, Mary Tyler Dad and I, but I embrace the belief that no one truly knows what is and is not in our world, or what happens after we leave this world.  Each day as Donna would nap, I would type the same message to the Rebbe and think about it as it made it’s way to Queens, was printed, folded, and placed next to the Rebbe’s grave:  “May she live until she die.”  That was my wish for Donna.  I did not ask for her healing or a postponement of her inevitable death, I humbly asked the Universe to allow Donna to live until she died.  No suffering.  No pain.  No lingering.  May she live until she die, was my mother’s plea, my last wish for my dying daughter. 

Mama Hugging Donna

Tomorrow:  The End

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

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