Tag: pediatric cancer

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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

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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