Tag: Childhood Cancer Awareness Month

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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

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Donna’s Cancer Story: Surgery 3.0

This is the seventeenth 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 her sailor suit

I’ve used the word whiplash to describe life with Donna’s cancer before, but this month was an exercise in it.  We went from feeling damned to blessed within just a few days.  After confirmation that the cancer had not metasticized, Donna had her third major tumor resection on a Friday morning.  By 11am on Sunday, after a breakfast of McDonald’s french fries and a walk around the unit, she was discharged.  A friend of ours joked he had hangovers that were worse.  And it is crazy and backwards to feel intense pride about your girl’s ability to handle a craniotomy, but damn, we were proud of Donna. The sailor suit photo was taken just eight days after surgery.

This surgery also involved a dose of internal radiation, called IntraBeam, that is only performed at Children’s Memorial in Chicago.  A different type of GPS style MRI scan was used to help the surgeon locate the size and scope of the tumor.  The stickers you see on Donna’s head were magnetic and used to create a 3D image of her brain to guide the neurosurgeons.  Did I ever mention that Donna’s neurosurgeon works part-time?  Yep.  Part-time neurosurgeon and part-time at home with her kids.  That gal is a rockstar in my book. 

Donna with cheetah haircut

During the seven hour surgery, after removal of the tumor and some surrounding tissue, a radiation oncologist and nuculear physicist were brought in to the OR to administer the dose of radiation directly to the tumor site within the brain, a process we hoped would “cook” the beast.  The idea of radiation was frightening to us, but all involved believed that while experimental, it could help Donna.  I wrote at the time, “Watching your child undergo majoy surgery is like labor.  You forget how bad it was the last time around in order to do it again, as needed.”

The weeks leading up to this surgery were so difficult, full of fear and worry.  Then, after the typical (scary that brain surgery on your three year old daughter can be described as typical) post-surgical discomfort and crankiness wore off, our girl was just as she had been.  Amazing, albeit with a new “cheetah” haircut, needed for the GPS MRI and hockey stick scar that looked mean and angry. Donna came home and within minutes started walking and playing, eating and climbing.  Mary Tyler Dad and I were shell shocked.  Whiplash. 

After the first surgery, there was the terror and fear of the unknown, and after the second surgery Donna was flung into chemo.  After this surgery, Mary Tyler Dad returned to work three days later and I was at home with smiling, brightful Donna trying to figure out what in the hell had just happened.  Mary Tyler Dad captured the moment with this, “She’s doing well enough that I keep waiting for the other shoe to drop.  And then I say to myself, another shoe?  Wasn’t a brain tumor relapse enough shoe for now?  Maybe this was the other shoe, and its dropped already.”  Always working to choose hope.

So life went on.  And Donna took our hands and guided us to it.  At certain points, and I’m not joking, we wondered if the radiation had done something to Donna’s brain that was unintended.  Within days of turning three she had her surgery and within days of the surgery, she morphed, right before our weary eyes, into a toddler.  Tantrums, time-outs, testing — the whole kit and kaboodle.  It was exhausting and utterly life affirming.  Mary Tyler Dad wrote:

“If your daughter has survived (so far) a year and a half of surgeries, “sledgehammer” chemotherapy, hospitalizations, nausea, constipation, fevers, and misery, will you be properly grateful for every minute you get with her?  And the answer is ALMOST, which seems pretty ungrateful and miserly, but there it is.  I dearly love this girl.  I fret that the treatment has hurt her, and I fret that it didn’t do enough.  I think of the friends we have whose time ran out, and I try to appreciate every tantrum as a chance to soothe my living, breathing little girl.”

And, that, my friends, is why I married Mary Tyler Dad.  I told each of my kids on the day they were born, “You won the Daddy Lottery!  Congratulations!”  And they did.  And I won the Husband Lottery.

Speaking of kids, as in plural, I started to show this month.  Donna was intrigued and curious about my growing belly.  We spoke often of having a brother or sister coming to join us in the coming months.  She was thrilled.  And empathic.  So empathic, in fact, that miracle of miracles, she told us she, too, would be having a baby!  Donna had conjured up her own pregnancy and was turning into a good little mother.  She worried about the heat of warm baths, “Will it hurt my baby?”  She shushed us if we were being too noisy, “You’ll wake the baby!  It needs to rest.”  She had even selected a name for her soon to be bundle, Hot Air Balloon.  How can you not love this girl?

Donna at zoo

Tomorrow:  Dance Class