Tag: Donna’s Cancer Story

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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

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Donna’s Cancer Story: Back to Work

This is the fifteenth 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. 

Life after cancer, though tenuous, was developing a rhythm.  We saw our home health nurse one day a week.  We went to clinic once a month for a check-up and quick push of an IV anti-pneumonia drug.  Donna was feeling great and as Donna went, so did we. 

Donna with baby doll in sling 

We asked our doc about airplane travel to visit Grandma and Papa in Massachusetts.  We got the thumbs up and booked the trip.  This was a big deal.  Travel had not been in the cards since diagnosis and this was fifteen months later.  The last trip we had taken was to see the grandparents at Christmas 2006.  That trip was wonderful aside from the nightmare I had where Donna died falling down an elevator shaft.  Sigh.

I remember that dream so vividly.  I watched as Donna ran ahead to the elevator bank to press the buttons, furiously, like any toddler does.  Then the doors opened and Donna quickly stepped in, but the car wasn’t there — it was just the empty shaft and as Donna fell I saw the fear in her eyes.  I screamed and ran to call 911 and woke up before anything else happened.  I remember the panic I felt when I awoke, the helplessness, the guilt. 

That was the same trip where Donna, so sweet and empathic, even at seventeen months, apologized to each of the cows at the farm we went to visit, “Sorry, bull.  Sorry, bull.”  She was sad she had no food to give them.  

Cancer robs you of many things and one of those is the ability to plan.  When your child is in the midst of treatment, you can’t plan for anything.  You can’t plan a month away, a week away, sometimes plans made a day in advance are easily thwarted.  That’s why this trip was so significant.  It was an embrace of our lives after cancer.  It was us choosing hope.  It was freedom. 

Donna hiding in Learning Tower

Ha!  Freedom from cancer.  Don’t tempt the fates, less they show you who’s boss.  We touched down, found the grandparents, and settled into the ride to their home.  We were happy; all was well.  “Did you get the popsicles, Papa?,” we asked. 

Donna took  sodium bicarbonate supplements twice daily because of her kidney tubules not working properly.  Sodium bicarbonate is basically baking soda and while they came in tablets, Donna was two and could not swallow pills yet.  We had to crush the tablets into a strong, salty powder.  The docs originally suggested mixing the powder with Coca Cola.  I loved that one as I am addicted to the stuff.  But no, Donna didn’t like it.  Applesauce?  No.  Milk?  No.  Walgreen’s brand popsicles?  Ding, ding, ding.  We have a winner. 

For completely mysterious reasons, Donna could tolerate the salty supplements mixed in a half of a red Walgreen’s popsicle.  So we bought a lot of Walgreen’s popsicles.  The purple and orange stuck around for a while, but eventually were tossed.  Red was what Donna wanted and red was what she would have.  In Chicago, this was not so much a problem, except when the damn things went on sale.  Even in February we had trouble finding them when they went on sale.  We learned to stock up.  We called it her “slushy treat.” 

So did Papa get the popsicles?  Yes, he said.  No, Donna said.  We tried a slushy treat when we arrived and Donna knew, just by the color it was not the real deal.  She spit it out.  This is not good.  If Donna did not get this supplement that her body relied on, she could dehydrate.  Dehydration is not pretty.  No, it would not do.  We decided to drive to the Walgreen’s several towns over, passing three or four CVS along the way.  Grrr.  We got there and were crushed to learn they were sold out.  No, it would not do.  We asked them to call another Walgreen’s, several other towns over.  Yes, they said, they had two boxes in stock.  They would hold them for us. 

Another thirty minutes later we pulled up somewhere in Connecticut.  Yep, folks, we had traveled out of state to get Walgreen’s brand red popsicles.  I anxiously approached the freezer, but didn’t see any popsicles.  Panic again.  Furiously look for worker, who retreats back into the freezer and returns with the holy grail:  two boxes of Walgreen’s popsicles.  Cue the angels singing.  I hugged the kid and tried to explain their significance, but I was simply an old lady with a story he did not want to hear.  “$7.38, please.”   

What really sucked was when you got your box of Walgreen’s popsicles and there were six purple, four orange and two red. 

The trip was a homecoming for us.  I joked that Grandma got to care for us in the comfort of her own home, no need to fly half way across the country to wash our dishes and do our laundry.  We’ll come to you!  We had tremendous family support during Donna’s treatment and are forever grateful for what our friends and family did to keep us going.  Like drive to Connecticut to find the right red popsicles. 

One day there was a party to celebrate our arrival and Donna’s health.  So many friends, some we had only known through their caringbridge guestbook entries, came to meet Donna and give us hugs.  Mary Tyler Dad said a few words and then I did.  I spoke about how we, each of us, has no idea what is in store.  That it was the same for Donna — no one knew what would happen, but that right now she was good and that was what we wanted to celebrate.  It was lovely. 

When we got home, I went back to work.  Three days a week, just a few minutes from home.  It was not the place I had worked before, but I had a teriffic boss who knew me from my former position.  You know it’s going to be a good interview when you walk into your prospective boss’ office and see a photo of your kid on their desk.  Yeah, you got this, I told myself.  And I did. 

Crossing that employment threshold was hard, but we were ready.  Donna’s medical needs were managed now before and after work hours and she could return to her loving sitters, an older couple who showered Miss Donna with love and hot dogs.  Clinic and hospital visits were scheduled for my days at home.  We were ready to make it work for me to work again. 

Kissing Donna

Tomorrow:  Relapse 2.0