Tag: Childhood Cancer Awareness Month

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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!

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Donna’s Cancer Story: Chemo 2.0

This is the twentieth 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.

Mary Tyler Dad and I were walking a fence this month, and at any moment we could drop.  On one side of the fence was terror, despair, anger, bitterness.  On the other side was love, hope, Donna.  We chose Donna, we chose hope, we chose love.  This is not to say we didn’t flirt with the dark side, or come to know, intimately, what living life in fear was like, but we chose to believe that all things were possible.  We chose to hope that Donna would grow up.  We chose to let Donna guide us to a life that was richer and deeper and more beautiful.  

Donna in stripes

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

When I would pick Donna up from her babysitters, she never failed to look up at the late autumn sky, “Mama, what a beautiful night!”  In the morning, it was, “What a great day to fly a kite!”  The life in her was simply infectious.  Being with her was the only balm for the fear that could so easily take hold of us in her absence.  She demanded that you see and enjoy the world we lived in.  This tiny, mighty creature was a powerful force of calm for us.    

Despite Mary Tyler Dad and I struggling, honest to God struggling this month, Donna was thriving.  On the outside.  On the inside, in her head, just underneath her skull near the lining of the dura, behind her left ear, her tumor was also thriving. 

Blanket Donna

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

At the beginning of this month the chemo protocol selected involved an antiogenic paired with a more traditional chemotherapy.  The function of the antiogenic (Avastin) was to cut off blood supply to the tumor, which had always been particularly vascular, to prevent growth, and the chemotherapy (Irinotecan) would follow behind to shrink and kill the tumor.  The cocktail was to be administered in Day Hospital intravenously through Donna’s port on a bi-weekly basis.  There were side effects with these drugs, but very minimal compared to the earlier inpatient protocol of the previous year. 

Donna would not lose her hair (hooray!), nor would her blood levels tank, requiring few, if any, transfusions, and it involved six hours in clinic/day hospital every couple of weeks.  A piece of cake, relatively speaking.  To measure its efficacy, the docs had determined scans would occur three weeks after the first dose was administered.  Shrinkage, stability, or growth under 25% would be considered a success and the treatment would continue. 

I felt very at peace with this plan as I had had a dream just a few nights after learning of this latest relapse.  I awoke about 3am, shook Mary Tyler Dad up from his sleep with my dream knowledge that we must “choke the beast.”  It felt so certain.  I am not a scientist or an oncologist, but this dream delivered the idea to me that the way to beat Donna’s tumor was to cut off its blood supply, to choke it.  We had tried cutting it (surgery) and poisoning it (chemo) and cooking it (radiation), all without success.  Choking it was the way to go.  I was certain, and that certainty bought me some peace. 

In typical cancer sucks style, those first scans showed growth in the brain tumor of 25-30% with a stable spine.  Oy vey.  So much for my prescience.  It took almost two weeks of consideration before we learned that we would push forward with this protocol, despite the growth.  Surgery remained off the table, as our neurosurgeon was uncomfortable with the direction of growth of the tumor and it’s proximity to an area in the brain that controls speech and comprehension.  God, do I hate cancer. 

Pensive Donna

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

There is a clarity to life when so much is at stake.  I’ve no doubt that death row inmates have felt something similar.  Mary Tyler Dad and I worked to maintain a routine and normalcy for Donna so as not to upset her sense of security.  I continued to work three days a week.  Mary Tyler Dad kept his full schedule.  With the help of family, we cooked and cleaned and maintained a home.  Donna was disciplined and boundaries were drawn.  She knew there were expectations for her and we held her to the standards we would hold our child who was not in treatment for cancer.  Donna needed that.  We did, too. 

Despite the chaos that cancer rained down on us, we worked hard to never treat Donna as a sick child.  She looked older, was growing taller, and had fully morphed from toddler to young child.  She was a joy and easy to parent.  Once, after his check up to ensure Donna’s brain wasn’t swelling from the drugs, our oncologist asked her, “How is it that you are as sweet as you are?”  Donna considered that question a moment, turned to look at me, and responded, “Because I love my Mommy and Daddy so much.”  The doc and I both took a moment to pick our hearts up off the floor and wipe the tears from our eyes.   

Again, you see the disconnect between the photos of Donna taken during this month and the reality of our lives.  I think our instincts were guiding us to make good and sound parenting decisions.  The first three photos were taken by a close friend who captured Donna in her many facets — her shyness, her joy, her coyness, her beauty.   

These next two are simple snapshots.  There’s nothing like a little mortality scare to get you to try and capture every moment you can.  The first is taken just before weekly dance class.  Look how her eyes shine.  She was lit from within, my girl.  That is a crocheted spider on Donna’s hair clip and it was the only hair clip she would wear.  Oh, the money I wasted buying cute bows and ribbons.  Donna was simply not that type of girl.  No fuss, no muss; she didn’t need any adornments.  

Dancing Donna

This next photo is one of my all time favorites.  It was taken Halloween day, 2008.  Donna had been fickle with her costume choices, but early the day of, settled on being a “Fairy Flower.”  Huh.  I got to work and with some scissors, staples, and love, came up with what you see.   The day was brilliant perfection.  It was warm and mild.  There isn’t a lot of Halloween action in our neighborhood, so we went north to Evanston to trick-or-treat with friends.  Donna had a blast.  She was bopping along from house to house, hoarding candy she would never eat (Donna never had much of a sweet tooth), surrounded by those that loved her most, and dressed as a Fairy Flower.  Life does not get any better. 

Donna as Fairy Flower

Tomorrow:  The North Pole