Tag: childhood cancer awareness

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Donna’s Cancer Story: Surgery 4.0

This is the twenty-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.

A professor of mine once described survey courses as akin to wearing roller skates through a museum.  I think of that analogy when trying to capture this month of treatment. 

The latest scans showed continued tumor growth.  Our team decided to abandon the protocol we were on and pursue new treatment.  What that would be would take a few weeks to decide.  When you are a Cancer Parent, a plan is a very important thing.  So even though we knew the plan wasn’t working, it’s mere presence provided something to hang our hats on.  Left without one was scary.

Sparing you all the anguish we endured (including another round of staging), in the end, the Tumor Board, an ominous sounding group that met every Thursday to discuss all kids on current treatment, recommended surgery followed by radiation.  The initial radiation proposed was external beam, which would have occurred at Northwestern with the same radiation oncologist that had treated my Mom.  Sometimes cancer feels incestuous.  Radiation is scary stuff for the developing brain, but external beam radiation is terrifying.  Ugh.  The saving grace with Donna’s tumor was that it was close to the skull, meaning they could hit it with the beams not having to penetrate the brain tissue.  The hope was that this would preserve more healthy tissue. 

Towards the end of this month the whole family (including Grandma!) made a road trip to IU in Bloomington, Indiana, to consult with the proton beam radiation center.  At the time, there were only five proton beam centers in the country, now there are nine, one of which is affiliated with Children’s Memorial and is local to Chicago.  Of the five, one would not have us (suck it, Boston), and one was closed for upgrades (really MD Anderson, really?).  Our docs chose Bloomington, which is a teaser for tomorrow’s post.  This shot was taken at the hotel where we stayed.  Donna felt very fancy staying at a hotel. 

Donna and Jay in hotel

The surgery stakes were higher this time for Donna because of the way her tumor was growing, snaking up the rim of her skull, infiltrating her dura, and resting adjacent to the vein of L’abbe.  Our neurosurgeon, the part-time surgeon/part-time SAHM (stay at home mom, for those not in mommy circles) I so adored and admired, was justifiably concerned with this plan.  So much of what made Donna Donna was her brain.  She was a bright, clever, extremely verbal kid.  Crossing the vein of L’abbe would have jeopardized her speech and cognition. 

There was a cost benefit analysis at play here:  was it worth the probable risk of gravely injuring and debilitating our girl to attempt to surgically remove a tumor that we knew there was no surgical solution for?  Despite surgery, the tumor would 100% return.  Guaranteed.  Again and again and again.  We knew that.  But no surgery meant certain death at this point.  I watched our neurosurgeon agonize over this decision.  I believe she loved Donna.  I saw it in her eyes and heard it in her voice.  Her conflict was clear:  She did not wish to be the agent of taking the Donna-ness out of Donna. 

Dr. Bowman was the first person to cut Donna’s hair at her initial surgery when this whole drama unfolded twenty-three months prior.  She saved those locks in a tiny Ziplock bag and tied them with a pink ribbon.  She cut a dressing shaped like a heart for Donna’s first incision.  Months later, when Donna was getting her first haircut, as we were preparing to leave I turned around at the salon and saw our neurosurgeon there with her two girls.  We were two moms taking our kids for haircuts.  To see her as a mom, out on an errand with her girls, was powerful for me.  It seemed a sign — that she was somehow passing the torch, ensuring that the next person to cut Donna’s hair was doing it properly.  When I called my Dad to tell him about this odd but delightful coincidence, he wondered why on earth I was taking Donna to get her hair cut at the same place a neurosurgeon takes her daughters, “[Mary Tyler Dad] must be doing alright for himself.”   I heart my Dad.

Donna basking in Jay

In the end, Donna did well with the surgery.  No harm was done to the vein of L’abbe, leaving Donna as chatty and brilliant as before the surgery.  Relief.  Cutting our daughter’s skull open and resecting her tiny brain was becoming almost rote at this point.  The docs were pleased with the bulk of tumor they removed, but were respectful of its proximity to vital speech and cognitive centers of the brain, so we knew some residual tumor remained. 

It’s hard to remember a time when brain surgery on your daughter becomes run ‘o the mill. 

In the midst of all of this, I was learning to be mom to two instead of one.  We had ENORMOUS support from family.  Without Grandma, Papa, Auntie and Uncle we would have crumbled.  They took care of us so that we could take care of Donna and Mary Tyler Son.  And did I mention they all live half way across the country? Pediatric cancer takes a village, folks, and ours was such a loving, supportive community.  We were blessed and so very grateful.

Mary Tyler Son was a joy.  He nursed beautifully, though slept fitfully.  Because he aspirated every time he was put on his back to sleep, our pediatrician told us to let him sleep in his car seat.  Odd, but it worked.  And Donna?  She was light and joy, too. 

Her clever brain, though invaded, functioned in a way I marvel at still.  One day, fully embracing her toddlerhood, I had had just about enough of her unresponsiveness to my requests, her dawdling, the typical frustrations of raising a toddler.  I said to her, “You know, Donna, I’ve noticed a lot lately that you don’t always listen to me.  I have to repeat myself and it’s frustrating.”  Her response, quick as a whip, was, “You know, Mama, I want to go to the park every day and sometimes it rains.”  Suck it up, Mom, I’m three, was the subtext.  God, I love that girl.

This photo was taken on a crazy mild day of February, just days before the surgery.  Donna’s oncologist suggested we come in that day and attempt to meet with the neurosurgeon who had some time free in the afternoon.  This suggestion came on the heels of many, many hospital appointments.  I knew the forecast was calling for a bright, warm, sunny day.  I said no.  “No, Stew, I don’t think so.  I think we’re going to go to the park tomorrow.”  Simple as that.  And we did. 

Donna basking in the sun

It was my first time out with two kids all alone.  I was fretting about Mary Tyler Son sleeping in the wagon while Donna was basking in the sun.  This day, this brilliant, warm February day with the promise of spring about it, Donna was all over the place.  I couldn’t believe it.  Who was this girl?, I thought, And where is my timid daughter?  The world is a beautiful place.  Even when your daughter has cancer. 

Tomorrow:  Proton, Here We Come

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Donna’s Cancer Story: It’s a Boy!

This is the twenty-second 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. 

This next month was a rough one.  When it rains, it pours and these days, it was like a monsoon.  On the first day of this month, scans showed continued growth of Donna’s tumor, albeit slowed.  With our due date less than two weeks away, though, the docs decided to stay the course for one more month — two more rounds of the current regimen.  Not good, but at least we would have some space and time to welcome the new baby with a certain level of predictability.

Ha!  In Cancerville, there is no such thing.  The only thing you can count on in Cancerville is pain and heartbreak.  About twelve hours after leaving the hospital, Donna developed a fever and we were told to bring her in to the ER.  This was Christmas Eve, it was three in the morning, and there was a blizzard happening.  We got stuck in the alley twice just trying to get the car out.  Sigh.  Donna, though, was making the best of it.  Poor Mary Tyler Dad was out trying to push the car, I was inches from delivery, and trying to steer the car with my big belly in the way, and Donna?  Donna was in the back seat singing about the weather.  Oh, that girl knew how to have a good time.

We got out, into the ER, which was blessedly empty.  Have I ever mentioned the rock star treatment kids with cancer get in the ER at Children’s?  The oncology resident always informs the ER to expect you.  When you arrive, even if the place is packed, which it usually is, with snotty, sad, bloody, hacking, miserable kids and families, you go to triage.  When you get your turn in triage, they know who you are and are waiting for you.  The routine of temp, height, weight, etc. is done and then you are ushered into a private room.  Don’t get me wrong, you wait like any other family, but because of your kid’s immune issues, you get to wait in the comfort of privacy, which is a huge blessing in such a stressful sitution.

Okay, the ER docs checked Donna out and could find nothing wrong with her.  As was often the case, her fever dissipated with arrival at the ER and her mood was good, though tired.  Four hours later we were sent to clinic and day hospital to receive the already scheduled chemo.  We went home, Donna played and ate, and went to bed early. 

Twelve hours later, on Christmas Day, Donna awoke, sad and not feeling well.  No interest in Santa or gifts or anything that didn’t involve resting in her Daddy’s arms.  Poor girl just had no ambition, as Da would say.  We cancelled our family holiday and all stayed in pamajas for the day.  Auntie and Uncle were visiting and we made our own modified holiday cheer.  Until the vomiting started.  Just before her afternoon nap, Donna vomited.  When she woke, she vomited again.  For a few hours, it was every hour on the hour.  There was no fever and it was Christmas Day and the docs told us without fever, just keep her hydrated and wait and see.  That should have been our cue.  “Wait and see” never bode well for Miss Donna.

The vomiting stopped about 1 am and Donna slept through the night.  When she awoke on the 26th, it was with a fever and gray pallor and sunken eyes that I did not recognize.  It is impossible to describe what you feel as a parent when you are staring at your child and you do not recognize them.  We booked it to the ER.  There was no singing this time. 

Donna was quickly diagnosed with a “critically dangerous” low level of carbon dioxide in her blood.  The fever and vomiting had created the perfect storm of chemistries in her body over a matter of hours.  She moved into a deep sleep in the ER and could not be roused.  Doctors were buzzing and before we knew it, Donna was transferred to the pediatric ICU.  What the what? 

Gratefully, with constant hydration, our girl came back to us in a matter of hours, though a much less animated version of herself.  The docs also found RSV, a virus that can be extremely dangerous for immuno suppressed children and infants.  We were two for two in those categories and alarmed.  I implored the child inside of me to stay put.  Donna was transferred out of the PICU and onto oncology the next day and the day after that we were discharged.

The girl we brought home, though, was not the girl we hoped to bring home.  Donna was listless with little appetite.  She was back on overnight fluids, which always managed to have the reverse effect of taking away her thirst.  She laid on the sofa and watched tee vee and napped.  That was just about our speed, too, as we had both developed colds ourselves.  Poor Auntie and Uncle got lots more than they bargained for in this visit.  Merry Freaking Christmas!

Mary Tyler Dad wrote about this in our journal:

“I’m realizing how thin Donna’s reserves actually are.  One good cold put her in the ER twice, PICU, and on the couch watching TV at home for another week.  Donna is a happy, growing girl, but one bad bump and we’re in the hospital again.  I think I spend as much time as I can in denial.  Things like this remind me of how lucky we’ve been, to have stayed on the tightrope like we have.  You get so comfortable walking around, you forget you’re on a tightrope altogether.  And then, whoomp, you’re in the net and you remember . . . right, right.  We’re on a tightrope.”

A few days later, I went to the hospital myself.  You can tell it’s been a rough week when going into labor feels like a guilty break.  Sigh.  With Donna better, but still not nearly herself, both her parents left her to deliver the baby.  More guilt.  Intense guilt. 

Mama holding photo of Donna 

While I had informed my ob about Donna’s RSV, he clearly did not see the same significance with it as the labor and delivery staff.  When I casually mentioned Donna at home with the RSV cold to my nurse, everything stopped cold.  We immediately went on lockdown and I was treated kind of like a suspect, complete with interrogation.  Who?  What?  When?  Where?  Why?  They did not care that I had discussed it with my ob.  Plans were made to move me to an isolation delivery room where all docs and nurses would have to scrub and gown each and every time they saw me.  This was a pain, I know from the stem cell transplant, and it did not endear me to anyone.

Before we moved, I was given my epidural.  I knew enough of pain and had no desire to feel the pain (or wonder, for those who dig natural childbirth) of delivery.  Mary Tyler Dad had left the room at the doc’s request for the needle stick and within minutes I started to feel funny, woozy.  I passed out.  A few minutes later I came to with literally dozens of doctors and nurses surrounding me.  No Mary Tyler Dad.  The doc told me that my and the baby’s vitals were dropping and I would require a C-section.  I cried and wailed and started screaming, “This baby has to be okay!  My daughter has cancer!”  Oy.  I was strapped to the gurney watching the flourescent lights above spin by as the team ran me to the OR. 

I still don’t know what happened, but my vitals improved.  The baby’s vitals improved.  The doc cautioned everyone to take a breathe and wait, to give my body a few minutes to see if it would recover on it’s own.  It did, and about eight hours later Mary Tyler Son was born.  It was not the blissful delivery I had with Donna.  This one was a bit more work.  When the baby came out, Mary Tyler Dad said, “It’s a boy!”  My first thought upon seeing my baby was, “Damn, a penis.”  Isn’t that awful?  I had so been hoping for another girl. 

Masks with Jay<

As is often the case, I was wrong.  I held Mary Tyler Son for the first time and fell in love with him.  He was a natural latcher and within moments of his birth I was nursing him.  Wow.  My baby, Donna’s brother, my boy. 

With the RSV, there were lots of precautions to take.  Donna could not come to the hospital, nor could they be in the same room when we returned home.  Donna would not hold her brother for thirteen days.  We had zoning in the house:  Donna downstairs and Mary Tyler Son upstairs.  We needed to wear masks and gowns when with the boy and I felt deep sorrow and anguish about that.  I know how important faces are to newborns, specifically their mother’s face, and mine was covered.  I hated cancer in those days.  I was angry.  Cancer had robbed us one of the most precious times a family will ever enjoy.  Bastard cancer. 

Donna holding Jay 

Tomorrow:  Surgery 4.0

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Donna’s Cancer Story: The North Pole

This is the twenty-first 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.

I was eight months pregnant during this month, still working, and that was tough, cause, man, fretting can be a full-time gig.  Mary Tyler Dad and I were bone tired.  The grind of daily life coupled with the impending addition of a newborn on top of the gnawing, tenacious worry and fear and doom attached to the uncertainty of Donna’s cancer was threatening to disable us.  Donna was simply Donna.  When family visited from out of town we would anxiously await their assessment of her.  To us, she seemed stronger, more vibrant, more physical and not remotely like there was a tumor snaking up the inside of her skull.   

Donna in blue coat

The holidays were approaching.  After last year’s stem cell isolation over Christmas, we were working hard to make the season special for Donna.  When I asked her what she wanted Santa to bring her, Donna would say, “I only want you for Christmas, Mama.  And candy canes!”  Donna was pretty clear about how she felt about Santa:  “I hate him.”  Wow.  To hear that coming from such a gentle girl was both funny and alarming.  Donna gave strict instructions that Santa was not to come into our home to deliver gifts.  They were to be left on the deck where her Dad and I could retrieve them.  One night, before bed, Donna asked for a story about day hospital, where she received her bi-weekly chemo.  I started in and she quickly interrupted and said, “Dr. Stew is not scary.  Santa Claus is scary, but not Dr. Stew.”  Oh, my girl.  My girl, my girl. 

Each afternoon when I picked her up from the sitter we would drive around a bit and look at decorations.  She loved the inflatable snow men and reindeer.  She loved the festiveness.  She worried that the trees were cold and lonely without their leaves and thought that all of them should have lights to keep them company until their leaves grew back.  Her empathy at three still takes my breath away.

I was a bit of a wreck in these weeks.  So close to delivering, I felt uncomfortable and frantic that our Donna-Mama time was coming to a close.  I was conflicted about bringing a baby into the chaos of our lives.  Full disclosure:  I was scared out of my wits.  I was scared for Donna, I was scared about managing two kids, I was overwhelmed.  Just managing cancer was a lot, how, on God’s green earth, would we do this cancer thing with a newborn in tow?  Throughout her treatment Donna had two parents giving her everything we had.  With a newborn, that would change.  We would be caring for two kids, not just one. 

Donna kissing pregnant Mama

Possibly sensing this, our team at Children’s threw us a bone.  No scans this month.  Donna would proceed with a couple more rounds of the Avastin and Irinotecan with scans just before Christmas.  The plan would be reevaluated when the results were back.  A reprieve from bad news was welcome. 

Early in the month we were guests at a holiday party at O’Hare Airport sponsored by United Airlines for children with life threatening illness, a “trip to the North Pole.”  One of the Child Life therapists offered us the invitation in early November.  When she suggested it I gladly accepted, but when I saw the invitation, my heart sank.  ” . . . for children with life threatenng illnesses.”  I put it on my bill pile and it sat.  I actively ignored that invitation until the very last day that I could.  I did not see Donna in that way and did not want to see Donna in that way.  The girl I woke up with and bathed and fed and read to could not possibly have a life threatening illness.  And yet, she did.  That was the rub.  Bastard cancer.

The day of the party there was a bit of a buzz.  Donna wore her prettiest black velvet dress with metallic red mary janes.  She even let me put a plaid bow in her hair.   That made me disproportionately happy.  We arrived at O’Hare, were ushered through security by United volunteers wearing red noses and reindeer antlers, and were guided to a party at the gate.  Then, with tickets in hand, we got on a plane, taxied around the airport (before 9/11, they actually used to fly around for a while), and “landed” at another gate where we deplaned for lunch and a visit with Santa. 

Family at North Pole

As the folks from the full plane exited the tunnel to the gate, there were two rows at either side of Chicago fire fighters and police officers giving these kids standing ovations.  I lost it — tears, sniffles, undisguised emotion.  Something about these men and women who put their lives on the line daily saluting these kids whose lives were currently on the line really moved me.  To this day, I well up when I see a fire fighter in full gear.  For so many kids, officers and fire fighters are their heroes, and here they were, in full uniform, saluting and honoring these children.  I am crying when I type this, just remembering.

Donna had a love/hate relationship with this party.  She was a girl who loved her parties and wearing “party shoes.”  The staff of United and volunteers treated us like visiting dignitaries all day.  We got to visit the “Elves’ Station,” where Donna was presented with a cart loaded to capacity with gifts for her – – it was obscene, really, the amount of swag gifted her.  But something in Donna’s temperment or something that had changed in her chemistry from the tumor or chemo contributed to bouts of skitishness that were difficult for her and us.  She was terrified of Santa.  She was traumatized by the roaming Ronald McDonald who somehow could not get the message to leave Donna alone.  The amount of people there was too much for Donna.  She wanted to go home.

I chose this last picture because I think it is a perfect analogy for Childhood Cancer Awareness Month.  You have to look to find us – – there we are on the right with the previously mentioned swag.  The airport is busy and bustling around us.  No one is looking at the girl with cancer.  No one knows Donna has cancer, yet there she is, right there in the midst of everybody else.  Our lives are busy, frantic, scheduled.  We need to get from Point A to Point B fast.  Who looks around and notices all that is going on right in front of them? 

Donna in busy airport

Look at this picture and see Donna and know that all around you, even when you don’t know it, there are children with cancer.  Some will live, some will die, many will be affected by the toxicity of their treatment for the rest of their lives.  They’re right there every day even when you don’t see them.  Donna’s hospital was often filled to capacity.  Every day those beds are filled with children newly diagnosed, in the midst of treatment, celebrating the end of treatment, or dying.  Every day. 

Tomorrow:  It’s a boy!