Category: Donna’s Cancer Story

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Donna’s Cancer Story: Back to Work

This is the fifteenth 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. 

Life after cancer, though tenuous, was developing a rhythm.  We saw our home health nurse one day a week.  We went to clinic once a month for a check-up and quick push of an IV anti-pneumonia drug.  Donna was feeling great and as Donna went, so did we. 

Donna with baby doll in sling 

We asked our doc about airplane travel to visit Grandma and Papa in Massachusetts.  We got the thumbs up and booked the trip.  This was a big deal.  Travel had not been in the cards since diagnosis and this was fifteen months later.  The last trip we had taken was to see the grandparents at Christmas 2006.  That trip was wonderful aside from the nightmare I had where Donna died falling down an elevator shaft.  Sigh.

I remember that dream so vividly.  I watched as Donna ran ahead to the elevator bank to press the buttons, furiously, like any toddler does.  Then the doors opened and Donna quickly stepped in, but the car wasn’t there — it was just the empty shaft and as Donna fell I saw the fear in her eyes.  I screamed and ran to call 911 and woke up before anything else happened.  I remember the panic I felt when I awoke, the helplessness, the guilt. 

That was the same trip where Donna, so sweet and empathic, even at seventeen months, apologized to each of the cows at the farm we went to visit, “Sorry, bull.  Sorry, bull.”  She was sad she had no food to give them.  

Cancer robs you of many things and one of those is the ability to plan.  When your child is in the midst of treatment, you can’t plan for anything.  You can’t plan a month away, a week away, sometimes plans made a day in advance are easily thwarted.  That’s why this trip was so significant.  It was an embrace of our lives after cancer.  It was us choosing hope.  It was freedom. 

Donna hiding in Learning Tower

Ha!  Freedom from cancer.  Don’t tempt the fates, less they show you who’s boss.  We touched down, found the grandparents, and settled into the ride to their home.  We were happy; all was well.  “Did you get the popsicles, Papa?,” we asked. 

Donna took  sodium bicarbonate supplements twice daily because of her kidney tubules not working properly.  Sodium bicarbonate is basically baking soda and while they came in tablets, Donna was two and could not swallow pills yet.  We had to crush the tablets into a strong, salty powder.  The docs originally suggested mixing the powder with Coca Cola.  I loved that one as I am addicted to the stuff.  But no, Donna didn’t like it.  Applesauce?  No.  Milk?  No.  Walgreen’s brand popsicles?  Ding, ding, ding.  We have a winner. 

For completely mysterious reasons, Donna could tolerate the salty supplements mixed in a half of a red Walgreen’s popsicle.  So we bought a lot of Walgreen’s popsicles.  The purple and orange stuck around for a while, but eventually were tossed.  Red was what Donna wanted and red was what she would have.  In Chicago, this was not so much a problem, except when the damn things went on sale.  Even in February we had trouble finding them when they went on sale.  We learned to stock up.  We called it her “slushy treat.” 

So did Papa get the popsicles?  Yes, he said.  No, Donna said.  We tried a slushy treat when we arrived and Donna knew, just by the color it was not the real deal.  She spit it out.  This is not good.  If Donna did not get this supplement that her body relied on, she could dehydrate.  Dehydration is not pretty.  No, it would not do.  We decided to drive to the Walgreen’s several towns over, passing three or four CVS along the way.  Grrr.  We got there and were crushed to learn they were sold out.  No, it would not do.  We asked them to call another Walgreen’s, several other towns over.  Yes, they said, they had two boxes in stock.  They would hold them for us. 

Another thirty minutes later we pulled up somewhere in Connecticut.  Yep, folks, we had traveled out of state to get Walgreen’s brand red popsicles.  I anxiously approached the freezer, but didn’t see any popsicles.  Panic again.  Furiously look for worker, who retreats back into the freezer and returns with the holy grail:  two boxes of Walgreen’s popsicles.  Cue the angels singing.  I hugged the kid and tried to explain their significance, but I was simply an old lady with a story he did not want to hear.  “$7.38, please.”   

What really sucked was when you got your box of Walgreen’s popsicles and there were six purple, four orange and two red. 

The trip was a homecoming for us.  I joked that Grandma got to care for us in the comfort of her own home, no need to fly half way across the country to wash our dishes and do our laundry.  We’ll come to you!  We had tremendous family support during Donna’s treatment and are forever grateful for what our friends and family did to keep us going.  Like drive to Connecticut to find the right red popsicles. 

One day there was a party to celebrate our arrival and Donna’s health.  So many friends, some we had only known through their caringbridge guestbook entries, came to meet Donna and give us hugs.  Mary Tyler Dad said a few words and then I did.  I spoke about how we, each of us, has no idea what is in store.  That it was the same for Donna — no one knew what would happen, but that right now she was good and that was what we wanted to celebrate.  It was lovely. 

When we got home, I went back to work.  Three days a week, just a few minutes from home.  It was not the place I had worked before, but I had a teriffic boss who knew me from my former position.  You know it’s going to be a good interview when you walk into your prospective boss’ office and see a photo of your kid on their desk.  Yeah, you got this, I told myself.  And I did. 

Crossing that employment threshold was hard, but we were ready.  Donna’s medical needs were managed now before and after work hours and she could return to her loving sitters, an older couple who showered Miss Donna with love and hot dogs.  Clinic and hospital visits were scheduled for my days at home.  We were ready to make it work for me to work again. 

Kissing Donna

Tomorrow:  Relapse 2.0

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Donna’s Cancer Story: Mother’s Day

This is the fourteenth 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 in restaurant

When you go through cancer treatment with your child, you meet some of the best people you will ever know.  The oncologist who cared for Donna is a man that to this day I want to sit across from in a bar and talk about what he does for a living.  His work is sacred and difficult and heart breaking and life affirming and joyous all at the same time.  On any given day he might lose a patient, but save another, or several even.  You hear about those with jobs that are life and death — police officers and fire fighters and soldiers.  Add pediatric oncologist to that list.  Stew is my hero.  He wears silly ties and sings while walking down the hall and he does this without affect, or being ridiculous.  I respect him immensely. 

Donna with Stew and Tara 

The nurses we worked with are some other ridiculously gifted and compassionate individuals.  Each day they go to a job where they will hook poison up to the IVs of kids from infants to teens.  They clean vomit and diarrhea and other unfortunate things on a crazy regular basis.  They see families, day in and day out, faced with the worst trauma they will ever experience.  Parents in the middle of this level of stress are not always the easiest folks to interact with.  But, somehow, these nurses provide comfort, laughter, food, support, professionalism, smiles, hugs, five minutes alone with your kid so you can run to the bathroom — whatever it is you need in that moment.  And they do it with grace. 

And then there are the other families.  So many other families that come from all walks of life.  Cancer parents are every color, religion, size, class, shape, etc.  Cancer is the great equalizer, it does not disciminate.

Some families you click with, and some you tolerate.  Children’s Memorial, where Donna was treated,  is an older hospital with semi-private rooms.  Soon they will move into their new digs, a skyscraper shrine to pediatric health that will open next year, but with Donna, there were humble digs.  Humble, tight, semi-private digs.  You get to know your roommates pretty quickly. 

When Donna was in the midst of her chemo, I spied another Cancer Mom across the playroom and immediately had a mom crush on her.  (Note:  always use capitals when addressing Cancer Parents, because, Lordy, are they worthy of your respect.)  I was instantly curious about the little boy toddler at her side and smitten with how his onesie  went unsnapped at the bottom, allowing the IV tubes to trail out behind him.  Clever!  I like clever people.  He was adorable and she looked like the best friend I hadn’t been introduced to yet. 

I took care of the introductions myself on our second or third sighting.  We clicked instantly.  Her son had recently been diagnosed with AML, the less fortunate type of leukemia.  We laughed together, admired one another’s kids, discovered we had gone to the same college.  She and her husband were beautiful and loving parents to both of their sons.  It was always a bonus to see them in clinic or on an inpatient stay.

At the beginning of this month, they learned that their young son, Gabe, had relapsed.  My heart sank for them.  My fear reignited for Donna.  When you become a Cancer Parent, it is hard to separate another’s losses or joys from your own.  You are so intimately connected because of the intensity of what it is you share — the hellish knowledge of fear — that you feel what they feel and vice versa.

Gabe’s status changed quickly and within weeks he unexpectedly died.  Suddenly.  Gabe was gone.  This was not right.  But it was. 

On Mother’s Day, Gabe’s would be/should be second birthday, we went to his wake.  There were no birthday candles, only hundreds of people gathered to pay their last respects.  We stood in a line that stretched out the room that was bursting with people.  There were children running and playing and nurses we recognized and beautiful Gabe at the front in his coffin.  He was lovingly surrounded by some of his favorite things.  It was the first time I had ever seen a child in a coffin.  I am grateful that when I think of Gabe now, it is smiling and laughing and taking laps with his Dad around the nurses station, his onesie and IV tubes trailing behind. 

When we got close to the front of the line and Gabe’s Dad saw us, he jumped out, protectively took us aside, and told us we should not be there, we should not see Gabe like that.  How on earth he felt protective towards us on this day of tremendous loss speaks to the kinship Cancer Parents feel towards one another.  Later, Gabe’s Mom spoke a few words to the folks gathered that were warm and kind and loving.  I marveled at her strength.  I kept wanting to go hold her hand while she spoke and hug her and comfort her. 

I wrote this later that night in Donna’s journal:

“There is survivor guilt tempered with fear tempered with the strangest sense that the world has turned upside down and inside out.  Someone at the service referred to Donna as a “success story,” and we both cringed a bit.  With cancer, there is no certainty.  A Cancer Parent knows you never know.  Instead, you learn to set a place at the table for this beast.  Sometimes you talk to it, sometimes you yell at it, mostly you try to ignore it.  Cancer is not a polite house guest.  It overstays its welcome, never cleans up after itself, and you always know its there — even on the best of days.  And when it gets what it came for, today it was a beautiful boy who should be celebrating his second birthday, it still remains.  You would think it would have the decency to leave.  It doesn’t.  Cancer will forever be with this family, just as it will be with ours.  Like a bad tattoo.”

This was a difficult day.  I needed to do something life affirming before returning to Donna.  I asked Mary Tyler Dad to stop at the Target on the way home.  As I suspected:

Pregnant

One mother was saying goodbye to her son, I was being introduced to mine.  It was Mother’s Day, but for a Cancer Mom, that is not always a day to celebrate. 

Tomorrow:  Back to Work

 

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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