Category: Donna’s Cancer Story

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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   

 

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Donna’s Cancer Story: Relapse 2.0

This is the sixteenth 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 and Da

My Dad is very fond of saying, “Don’t worry about a thing, nothing will come out all right.”  Melancholy words from an old man sad about the death of his wife and the cancer of his granddaughter, both named Donna, both with brain tumors. 

Just as we were getting comfortable with a new routine, we all got suckerpunched in the form of an MRI.  On the first day of this month a small spot appeared at the original site of Donna’s tumor that was read as “worrisome.”  No one would officially call it tumor, but the recommendation was to re-scan in 4-6 weeks.  Within days, that was cut to under four weeks, as Dr. Stew grew more concerned.  No one wanted the beast to have an opportunity to spread.  If this was a relapse, the strategy was to catch it early. 

Waiting is its own form of hell.  And when you are charged with waiting you know that your life will take on an unbearable quality.  Everything around you becomes a more intense version of itself.  The sky is bluer, the clouds puffier, the flowers more brilliant — the appreciation becomes burdensome.  Except with Donna.  Her smiles were more tender, her kisses sweeter, her words more profound.  You want to capture everything and commit it to eternity.  Just in case. 

These were the days when reading three books before bed became an exercise in willing myself not to cry, not to lose it in front of Donna  It is amazing how profound children’s books become when you think your child is not long for this world:  “It’s time for bed, little mouse, little mouse, darkness is falling all over the house.  It’s time to sleep little deer, little deer, the very last kiss is almost here.”  Mem Fox wrote those words and their beauty cut me like a knife.  I would read to Donna in these weeks and my voice and lips would quiver and I would pinch myself, hard, so that I did not fail her in those moments. 

Donna was just as she had been — amazing.  She got another blood transfusion this month, still not completely recovered from the stem cell transplant, but day-to-day she was perfect.  Funny, sassy, clever, bright, singing, dancing, eating.  She felt good, which was a blessing, but a disconnect.  Donna felt good, great even, but we knew different.  We knew she was headed back into the mouth of the beast.  How does a parent erase that knowledge, that fear?

In the midst of all of this, becasuse cancer is a rude beast, we were planning a Christmas in July 3rd birthday extravaganza.  Donna had missed Christmas last year with the stem cell transplant and her 2nd birthday was squeezed in between moving and chemo rounds.  We wanted three to be different and saw it as an opportunity to say thank you to all our friends and family who had been supporting us so completely. Santa and his elves got busy in our home and there were decorations, cookies, a tree, and a gift for each kid that made it to the party. 

Christmas in July

Donna, the least acquisitive kid I’ve ever met, asked for flowers and a cake for her birthday.  Donna, you see, was amazing. 

Two days before her birthday, a repeat MRI confirmed the tumor had returned.  The day before her birthday she had a spinal MRI and the day after, bright and early, was a lumbar puncture and bone marrow aspiration.  The docs needed to stage the disease, yet again, to determine if it had spread.  More waiting.  This was no way for a girl to turn three. 

Despite that, Donna’s birthday was beautiful.  Somehow we managed to banish the fear and celebrate her life, celebrate her still being with us.  Our home was filled to capacity with family and kids and the loveliest assortment of friends from Cancerville and our lives before cancer.  The kids that weren’t too fearful to see Santa were treated to my Dad in a hot, furry suit in the middle of July.  Donna, too, was afraid, but relaxed when she realized it was her Da. 

Inevitably, some folks approached us with the sad smile and tilted head, “How are you?”  Cancer Parents know what of I speak.  That question was not allowed on Donna’s birthday.  The tilted head is the classic posture of pity and I could not handle pity when it was all I could do to stand up.  I hated the tilted head and found myself mimicking it to see if the folks tilting their own heads would be aware of my tilt and straighten theirs in response.  That worked about 50% of the time.

In this same week, we learned that there were concerns about Mary Tyler Son growing in my belly.  My bloodwork was off and they were recommending an amniocentisis as the presence of Down’s Syndrome was feared.  This raised a whole host of other issues, but one thing we knew after so much waiting with Donna, was that we could not wonder for six more months if the child I was growing would have Down’s Syndrome.  On the day Donna’s relapse was confirmed, just minutes later, our phone rang again.  It was Northwestern calling with test results.  The baby was healthy.  Did I want to know it’s gender?  No, thank you, I said.  I hung up the phone and I wept.  And wept.  And wept.  Babies are so hopeful, the perfect bundle of potential.  Ours was healthy.  We hoped the same for Donna. 

Birthday Girl

Tomorrow:  Surgery 3.0