Tag: Donna’s Cancer Story

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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

 

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Donna’s Cancer Story: Relapse 3.0

This is the nineteenth 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 had another set of scans this month that showed  her tumor was back.  Another relapse.  Tears and terror for us, dancing and pumpkins for Donna.  Today’s update is hard to write.  We were so hopeful, so needing a break from cancer, so exhausted.  I get so angry at cancer sometimes, it’s randomness and brutality, it’s tenacity, it’s mystery.  I rarely asked this question when Donna was in the midst of treatment, but I do ask it sometimes now:  Why Donna?  Where did it come from? 

We have no idea, nor will we ever. 

Donna reaching higher

There is a total disconnect today between the photos you see and the words you read.  How to reconcile the girl in our photos, our beautiful Donna, with the photos the doctors order, those inside her body?  How, as a parent, do you make sense of what you see in front of you and what the doctors tell you is happening?  I spent so much time wishing and hoping that one day someone would call from Children’s and say, “We are so terribly, very sorry, but we made a mistake.  Your daughter is fine.  Our bad.” 

This photo was taken at the baptism of Donna’s cousin.  It was a beautiful day, a celebration for her third cousin born within six weeks of one another.  The minister baptized a few babies that day and spoke of children and of hope.  He talked about how children are never really ours, that as parents, we are here to steward our children through their early life, but must embrace that they are not ours.  I wept silently as he spoke.  Afterwards, we all went to the Brauhaus on Lincoln for beer, brats, and dancing.  Donna loved the music and Mary Tyler Dad and I were feeling so grateful.  Sigh.  It was such a lovely day. 

Dancing at Milo's baptism

After the news of relapse, there is the business of staging.  Yet again, another series of tests, scans, punctures to determine if the beast had metasticized.  More hospital time, more anesthetia, more terrifying hours spent waiting for the phone to ring, knowing in our bones that the news will be bad.  Our bones did not deceive us.  Two small spots on Donna’s spine, an area the cancer had never been before.  Our oncologist sounded disheartened, something you never want to detect in the voice of your daughter’s oncologist. 

Donna’s neurosurgeon was reluctant to operate both because of the location of the tumor (same place, though growing in a different direction, too close to vital blood flow paths) and her stated belief, “There is not a surgical solution to this tumor.”  Coming off July’s relapse, just three month’s prior, we were living so large, truly believing Donna had dodged a bullet.  We had had a taste of normalcy and now it would be gone again.  The treatment decision was chemo, though which protocol was still uncertain.  The sledgehammer of chemos had only stalled Donna’s cancer, not stopped it, and in that process had caused damage to her kidneys.  What else was left to try?  At the end of this month, we were still waiting for that answer.

And through this, Donna was in another course of PT.  Seeing her dance and some of her physical limitations, Donna could not run or jump, I had asked for a booster of PT to increase the strength she did have.  Donna loved her therapists at RIC and they her.  The therapy was welcome as it provided structure to our days, indoor fun, and always gave Donna challenge and confidence.  Here she is working on balance as she throws frogs into a bucket I held.  I was so proud of her. 

Donna playing in PT

Donna was as she had always been during this month:  a joy.  A beautiful, smart, clever, girl.  We did not share this news with her.  We discussed and explained procedures with her, worked hard so that she would feel aware, secure and prepared for whatever cancer would bring her that day, whether it be a surgery, MRI, a needle stick, or blood transfusion, but never talked big picture with her.  She was three.  I am forever grateful that we were spared the difficult conversations children just a few years older would have needed.  Again, Donna had no fear or context of what cancer meant or did. 

This photo was taken just two days after the news of relapse.  I was growing bigger with Mary Tyler Son and scared out of my mind for both my children.  And there is Donna, looking at me with such tender love and affection.  She is unfazed by her cancer.  She is happy, she is loved, she is secure.  Cancer could ravage her brain and body, but it could not ravage the love between us.  It could not touch our love.   

Donna and Mama

Tomorrow:  Chemo 2.0

 

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Donna’s Cancer Story: Dance Class

This is the eighteenth 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 blue dress

Donna had her first post-surgical scan this month and it was clean.  Because of the IntraBeam radiation, the study required MRI scans every six weeks for six months after the procedure, so “scanxiety,” as Cancer Parents call it, would be early and often.  But still, we felt lucky.  I remember willing myself to embrace the fear of scans, as having them meant that Donna was still in the game.

We used to call them “pictures inside your body” as a way of normalizing them for Donna’s little two and three year old self.  When the results were good, like this month’s, we would tell Donna she took “beautiful pictures inside her body.”  When the results were bad, I honestly can’t remember what we told her.  I think we simply didn’t discuss it with her.  Now I am left to wonder just how much she understood. 

On scan day we would negotiate for the earliest slot possible.  7 or 8 a.m. was ideal.  Because she went under anesthetia for these tests, there was to be no food before.  Early scans were less hassle; afternoon scans were the worst, as you knew you would be bumped for emergencies.  More than once we were at the hospital past 10pm finishing up.  This after not eating all day and having had anesthetia.  When Donna woke we were ready with milk and pancakes.  She would devour them. 

Twice, Donna experienced what they call “rage reaction” from the anesthetia.  She would wake, as described, in a rage — thrashing, screaming, inconsolable.  Once we had to swaddle her in a hospital blanket and lie on top of her for her own safety.  Terrible.  She would slowly come out of it after about an hour.  Some children experience those very frequently and there seems to be no rhyme or reason to who gets them and when.  Sigh.

I still continued to work during these months.  My boss, who knew my situation, took a gamble and hired me anyway.  Just a few weeks after I had started, Donna relapsed, requiring me to take some time right away.  Because I worked part-time, there was some flexibility, so I was lucky.  My poor boss.  When I interviewed, just two months earlier, Donna was doing great and she had no idea I was pregnant.  It was before twelve weeks and out of fear of miscarriage I did not want to jinx anything by letting the cat out of the bag.  That was a good boss.

Everything seemed to be moving forward, so when a neighbor suggested Donna might like to take a dance class, I asked her.  Honestly, it had never occurred to me.  Some Mom, huh?  Donna loved the idea.  She was so excited to wear a tutu and ballet shoes and loved the sounds that came from her tap shoes on our wood floors.  I had only taken ballet through the park district, so the idea of a three year old prepping for a recital with costume and choreographed routine seemed . . . unnecessary?  Silly?  It was a bit too Toddlers & Tiara for my taste.

I was wrong.  Parents, run with your toddlers, boys and girls, to the nearest dance studio.  It is a wonderful opportunity to have them socialize, learn respect, coordination, and appreciation for their bodies.  Getting Donna into dance was one of the ways we chose hope, the mantra that had guided our Cancer Parenting since diagnosis.  Choosing hope meant believing that Donna would enjoy her classes, make it to the recital, shine on a stage like the star she was, and live. 

Choosing hope is one thing, but finances are another.  The studio allowed different payment options:  full year, by the semester, or month-to-month.  As hopeful as I was, I made the decision to pay month-to-month.  This made me very sad, but it was our reality.  As much as I embraced the idea of Donna being cancer free, I was a realist and hated the idea of wasting money. 

There are certain things moms and daughters do, things I had dreamed about since Donna was first gently placed in my arms, still warm from my belly.  Reading Laura Ingalls Wilder’s Little House books was one of them, braiding her hair was another, and shopping for girl’s clothes was in there, too.  I know it’s shallow, but sometimes I’m shallow. 

Donna in leotard

Donna and I went to a local boutique that caters to serious dancers and kids with moms, like me, who like a shopping experience.  Donna chose a black leotard, black tutu, black tights, and black ballet slippers.  Donna, you see, liked black.  It was her favorite color.  Donna was cooler at three years old than I will ever be.  Word.  We went for the black tutu and leotard, but opted for the more standard pink tights and slippers.  She was such a great kid.

The first day of class I knew the teacher was something special.  Somehow, within minutes, she had a room full of 3-5 year old girls listening, moving in order, and participating as a group.  Wow.  That is a feat.  Donna was intently watching and working to move her body as the teacher did.  In our first glimpse of her as a student, as a dancer, we welled with pride and love.  She was amazing.  Some of the other parents watched, and some read, and some noodled with their phones.  Mary Tyler Dad and I were riveted on the rockstar in black, the sprite who was smaller than most others by a full head.  Donna was beautiful.  I wonder if any other parents wondered about her small stature or funky haircut.  Most seemed not to notice, or were too polite to ask. 

There were some tears, but not from Donna.  Until the end.  The teacher organized something I called, “community movement.”  As soon as I realized what was happening, I knew it would not be pretty.  I could see Donna’s expression change through the mirrored glass.  First fear, then discomfort, then the tears and the plaintive wails of, “Mama!”  I jumped up, knowing the moving while touching was too much for her – – she could not run or jump like the other little girls.  Cancer had never allowed her to gain those skills and she simply couldn’t keep up with the others. 

We talked about it later and she described feeling “pushed.”  Donna calmly explained this to her teacher the next week at the start of class and we went from there.  I love that despite this episode, she went right back in and did it again.  I love that she could articulate it in her own words, what this experience felt like to her, how scary it was.  I love that her teachers could not have been more accepting and supportive.  I hate that Donna could not jump or run or skip.  I hate that one of the other students noticed this and seemed annoyed by it, repeatedly bossing Miss D. around, telling her how to jump.  I hate cancer.

Donna was wiser than me.  I worried she would be asked to leave the class.  I suggested that Donna could just not participate in that part of class.  No.  Donna knew to talk with the teacher, the teacher knew to place Donna at the end of the choo-choo line, and all was well the next week. 

Later that day, after Donna’s first class, I ran into a friend who was with her daughter, just six months younger than Donna.  I wept in the Old Navy and my friend comforted me.  It was so hard to see Donna with other children and not be able to deny what cancer had cost her.  I was away from her and I let myself feel and grieve.  Then I went home. 

This last shot was Donna’s first haircut.  She loved the police car she sat in and took this haircut very seriously.  The stylist’s mom had just been through chemo and she took good care of Donna. 

Getting first haircut

Tomorrow:  Relapse 3.0