Tag: Children’s Memorial Hospital

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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: 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: Recovery

This is the eleventh 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. 

Just a day after the dismal day I wrote about yesterday, Donna seemed to turn a corner.  Our stem cell doc thought some of the intense pain and discomfort Donna had been experiencing, the writhing and moaning, could be attributed to lactose intolerance.  Quit the dairy, he advised, and within a few days she should feel better.  We did and she did. 

Turns out that the part of our body that breaks down lactose is the lining of our small intestines.  The potency and toxicity of Donna’s stem cell transplant chemotherapy caused her intestinal lining to shed, leaving her no means to process the lactose her body was craving.  Donna was so hungry after her return home and we had been more than happy to accommodate this hunger with her favorite foods:  milk, mac-n-cheese, yogurt, cottage cheese — a dairy farmer’s dream.  And yet, that was the agent of the pain and struggle we had been seeing.  We made the necessary changes and Donna transformed before our eyes.  The eight hour sessions of misery in my lap shortened each day.  Eight hours became six then four then two then poof.  “Mama found a cottage cheese that doesn’t hurt my belly!” is something Donna would joyfully shout as she ran up and down the hall.

And suddenly we learned that Donna’s treatment was over.  We had been prepping for the second stem cell transplant, dreading it, knowing what horror the first one had brought.  The docs had left the decision to us, we were to decide to move forward with the second one or take a gamble on one and done.  For the first time, Mary Tyler Dad and I disagreed.  We were torn, but knew that consensus was crucial.  That was its own special kind of hell.  But early one morning, Donna’s oncologist called to tell us that the team had taken the second transplant off the table.  They had just reviewed all numbers and determined that second transplants had a 20% mortality rate.  Given that no one knew if it carried any benefit (some cancers are only cured with two), the team agreed it was too risky.  Hallelujah. 

Donna feeling better

Hallelujah, hallelujah, hallelujah, hallelujah, hallelujah.  And so began our life after cancer, though that brings its own fears and concerns.  For the first time in eleven months, there would no strategy, no tools to fight the beast.  We were left to hope and believe that the beast was gone.  Papillary meningioma, that had had its way with Donna, had left the building, but we struggled trusting this.  We were shell shocked and thrilled and tired.  So very, very tired. 

Donna, though, was wired.  She felt better each day.  She was making up for eleven months of slogging through the muck of cancer.  She was two and wanted to play and play and play.  Each day brought more and more Donna back to us.  Skinny and pale with sunken eyes, Donna came back to us.  Stubble appeared, pink cheeks and lips returned, her eyes brightened.  Donna had never been more beautiful. 

Donna in linen dress

As we stumbled through these first official days after treatment, it took Mary Tyler Dad and I some time to get our bearings.  It felt like whiplash.  Just days earlier, we worried about two dots on the lungs, a second transplant, and Donna dying, but here in front of us was a bald headed spitfire.  She didn’t have time for our trauma.  Donna had things to do.  We tagged along.  Donna showed us the way.

While active treatment was over, there was still the daily insults of cancer.  Closets and tables full of medical supplies, lots of daily medicines to endure, weekly port access, and trips to the hospital for check-ups and occasional platelets.  When Donna’s home health nurse came, Donna would shyly cling to my legs.  She knew that Phyllis’ visits meant a needle poke.  As Donna gained health, her fight returned.  We had a routine that involved bringing Donna to her changing table, removing her top, which Donna hated.  I always imagined she felt so vulnerable with her port visible.  I would place my body weight over her legs to prevent kicking and hold her arms at her waist.  Donna, through her tears, would say, “One, two, three,” and that was Phyllis’ cue to poke.  It was a quick process, but we all hated it.  Moments after it was finished, Donna would sit up, get her shirt on, and be done with it, wanting to show Phyllis some new book or toy she had received.  I could not have been prouder of my girl.  Phyllis was amazed by her.  One day, after we saw Phyllis out — can you believe I was worried about manners at this time? — Donna shut the door and said, “You don’t like to do that, but you know you have to.”  She.  Was.  Amazing. 

I wrote at the time, “I am astounded by her brain and how it works and how it changes as it grows.  I am left in awe knowing how much trauma that same brain has been in over the past year and yet it still functions so beautifully.”  Donna, like any two year old, was working to become more independent.  She was playful, funny, clever, testing, silly.  She used to nap with a foam letter from her bath toys that she would gently place on the pillow next to her and cover with its own blanket.  The letter would change daily.  Life was so very sweet. 

One afternoon we had a clinic visit to check numbers and visit with our oncologist.  The nurses agreed to change Donna’s needle as it fell on a home health day.  As we walked into the tiny lab in the oncology clinic two of our nurses were prepping for Donna and in the background was Blue Oyster Cult’s “Don’t Fear the Reaper.”  With my straightest of straight faces, the indignant and morally superior one, I said to the nurses, “I can’t believe you are playing that song in a pediatric oncology clinic.”  Stare.  Our perfect nurse Tara said, not skipping a beat, “But it’s the cowbell version!”  We all bust out laughing and crying together.  Yes, life was sweet. 

Making pumpkin muffins with Donna

Tomorrow:  Family Portrait