Donna’s Cancer Story: Infection

This is the twenty-sixth 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 cancer treatment. 

Pensive Donna 

(All photos courtesy of Anne L. Geissinger, Pixeldust & More)

Ten days of this month were spent in a children’s hospital in Indianapolis with a double port infection.  During those ten days I must have thanked my lucky stars approximately 673 times that we lived in Chicago and were treated at Children’s Memorial.  Donna’s beloved tubey had to come out, requiring the insertion of a picc line in her left arm.  These were scary, awful days.  Some of the worst since 2007’s stem cell transplant, and that’s really saying something. 

The origins of the infections were unknown and while many children with cancer experience numerous infections, the only infection Donna ever had was during her stem cell transplant.  The worst thing a Cancer Parent can hear in the midst of treatment is ‘infection.’  Scratch that.  ‘Relapse’ is the worst word, though infection is a damn close second.  Wait, you can add ‘terminal’ and ‘hospice’ to that list, too.

The ten days felt more like ten years and included being transported to Indy from Bloomington via ambulance due to Donna’s raging fever that came out of nowhere and sent her into a shaking bundle of discomfort.  Terrible ER care.  Misdiagnosis.  Hearing from our team in Chicago that Donna had an infection before the Indy team even knew.  How that is even possible is still beyond me.  Alarmist rhetoric from an unfamiliar oncology team that clearly were annoyed by my advocacy skills.  Perhaps because they were on the receiving end of them?  I was told by the head of pediatric oncology that Donna was receiving ‘adequate’ care.  “Adequate care,” I told him, “is not good enough for Donna, or any child in your care.” 

Blue Eye

This is a bit stream of consciousness, so bear with me:

Staying in a hospital room with two children, one of whom wanted OUT (Donna) and the other of whom (Mary Tyler Son) was not allowed out of the room because as an infant he was not yet fully immunized.  This was at the start of the swine flu epidemic, for added drama and paranoia.  A port removal surgery scheduled at 9:30 p.m.  I remember being with Donna in surgery, and Mary Tyler Dad being in Chicago, but have no memory of where Mary Tyler Son was or who was with him during those hours.  My Dad?  You?  

Placement of two IVs in Donna’s hands, rendering her unable to use them at all; we called them her “claws.”  A picc line insertion done without any sedation, Donna screaming to the surgeon, “NO MORE LIDACAINE!”  A surgery without sedation is incomprehensible.  Going back and forth daily to the proton center via a 70 minute ambulance ride so we wouldn’t fall behind in treatment.  The RN that had to accompany us talking on her cell phone the whole ride.  Some EMTs offering Donna donuts on the ride home and others refusing to allow her to eat because of liability reasons.  Donna losing her will. 

That was scariest of all.  When the IVs were inserted in her hands, without any discussion with me about placement, they left Donna unable to feed herself, move herself in bed, or play easily.  She simply started to fade.  It was sad and scary and painful – – no doubt duplicating how Donna was feeling herself.  We got through it, and returned to Jill’s House in Bloomington to resume treatment, but those ten days were scarring in so many ways. 

Donna on her bike 

Remembering these days now, I still feel so impotent to stop what was happening.  I am certain that the care at that Indy hospital must be better than what we experienced, but it feels like Donna’s care was doomed from the moment she was wheeled into the ER.  Having worked in health care for so long, I know that sometimes that is precisely what happens.  Mistake after mistake, arrogant doctors who cover other’s mistakes with defensiveness, unfamiliar staff who saw us as a short time problem to endure.  And Donna caught in the crossfire.   

Later in the month, on another trip home to Chicago for scans, we got the best news possible, that the small lesion in Donna’s neck was shrinking.  The proton beams were working.  Donna was recovering from the infection setback/trauma as were Mary Tyler Dad and I.  We saw the lights at the end of the proverbial tunnel, but I lost some of my fight this month. 

In working to advocate for Donna, in trying to discuss all of the mistakes and mishaps made by hospital staff that harmed our girl, I was defeated.  Even the most basic of things.  I could not take Mary Tyler Son in the halls, which meant I could not leave to get food for myself.  I was not allowed to order food through the hospital.  I was not eating.  A nursing mother not eating and no one seemed to care. 

Family in Bloomington 

When I asked to speak to a patient advocate, the gal I was referred to listened politely, but only wanted to know if I planned on hiring legal representation.  I stepped back.  Donna and Mary Tyler Son needed me more than I needed to grind my axes and rail at the injustices of alarmingly poor pediatric care.  We just wanted to get the hell out of Dodge. 

It was suggested during this period that I might want to start Mary Tyler Son on formula – – that the stress of nursing was too much in the midst of this cancer chaos.  I strongly declined.  Some days the only time I held him was when he was suckling.  I wish I remembered more about his infancy.  Those lost memories are another casualty of cancer.

All of the photos you see today were taken by my friend, a photographer, who visited with her youngest daughter for a week to tend to us and shoot Donna.  More than any others, these photos cut to my core.  They capture Donna in all her splendor, remind me of her wisdom, her wonder, her tenacity, her strangely knowing eyes.  The deepest blue eyes I have ever seen.  My memories of Donna are shaped by Anne’s photos of her.  That is a gift I can never repay.  Taken just a couple weeks after the infection ordeal that was already becoming a memory.   

Wonder

You see, the wind blew with Donna’s health.  When she was well, we were well.  When she struggled, we struggled.  She had no inclination to wallow in or pity her situation.  She wanted to live.  She knew, intuitively, that life was a privilege and she did not waste a moment of hers. 

Tomorrow:  Terminal

Donna’s Cancer Story: Blooming in Bloomington

This is the twenty-fifth 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 cancer treatment. 

We found a rhythym in Bloomington, which was honestly a great city.  The people were friendly, the Target was crazy well stocked and clean, the library was incredible and hosted weekly Chinese lessons for kids.  If you had to be away from home for cancer treatment for your child, Bloomington, Indiana was not a bad place to be. 

Donna was doing well, thriving really.  After the tongue debacle and a few more days time to get used to her new sedative, our days became predictable.  (Interesting fact:  Donna got a dose of Propofal every morning — the same drug that was the cause of Michael Jackson’s death.)  I would wake each morning, wash and dress myself quickly and quietly, run to the kitchen to make Donna some portable breakfast, usually involving peanut butter, get back to the room and wake and dress both kids, and head out by 7 a.m. each weekday. 

A lot of time we had family staying in the room next door, so they would be with Mary Tyler Son in the waiting room while Donna and I went to a cot outside the cyclotron room.  This is where the Propofol would be administered.  It looked like milk snaking its was through Donna’s tubey into her port.  Within seconds, I would watch her nod off as I whispered into her ear, “Never forget that you’re amazing.” 

Donna in Easter hat

Her treatment would take only about fifteen minutes, which was when I would nurse Mary Tyler Son, before they called me back to recovery to be with Donna.  She woke groggy and hungry.  She ate her prepared peanut butter feast while I read her three books.  She got super picky and cranky about the books and which order they were read to her.  I learned early on that for fifteen minutes or so, she was the boss. 

On Mondays and Fridays, Mary Tyler Dad was there, so we would be together.  On occasional days, I was alone with the kids and Mary Tyler Son would be with me, or a grandmotherly type would care for him while I was with Donna in recovery.  Looking back, it’s kind of shocking how many arms held Mary Tyler Son in his first few months.  Thank goodness for the kindness of friends and strangers alike and thank goodness that, like his sister, he was such a considerate baby.

Our medical obligations were generally over by 10 a.m. or so.  The rest of the time was ours.  Donna always enjoyed a bigger breakfast when we got back to Jill’s House.  We would do errands, play, head out to see the sights of Bloomington.  There is a great kid’s museum there that Donna adored and the town is within minutes of hills and farms, so some days we would just drive into the country and look at cows.  John Mellancamp, a hometown boy, would inevitably play on the radio. 

The afternoons were my favorite.  The two kids and I would retreat into our room.  Donna would get some books before her nap and easily nod off.  Mary Tyler Son would nurse in my arms and then we would nap, too.  A nap every day is not a bad thing.  Our window had western light, so we would all wake as the sun shone bright and warm.  It was spring, which to me is such a hopeful time of year.  I loved those afternoons.  They were lazy and cozy and restorative. 

Mary Tyler Dad had a different routine.  After Monday morning’s treatment, we would head back to Chicago for the week.  He was alone at home, working, fretting, and lonely.  His afternoons were neither lazy nor cozy.  On Thursday evenings he would make the five hour drive back to Bloomington, getting in about midnight. 

For the first time in Donna’s treatment, there was tension between us.  The kids and I had one routine that worked for us, then Mary Tyler Dad would come in for the weekends and that routine didn’t always work when we were together.  On the weekends, I wanted to be lazy.  Getting us up and out by 7 a.m. was tough.  He liked to walk the mile to the treatment facility, while I preferred to drive.  Every minute counted in the morning and I didn’t want to use twenty of those minutes pushing a double stroller through the chilly morning.  You see, I’m fundamentally lazy.  To my core.

Mary Tyler Dad also liked to schedule things.  “What time are we going to the park?”  “When will you be ready?”  “How soon until we go?”  He wanted, and needed, to maximize those days with the kids as he missed them so when he was in Chicago.  Lolling around until 11 was not his idea of a good time. 

Food came into contention, too.  Having cooked most days or eaten food another had cooked, I was ready to hang up the apron and get out on the weekends.  This was much easier with two of us, so I liked to eat out.  Mary Tyler Dad, alone all week and working later hours to compensate for his time in Bloomington, wanted to cook and eat at Jill’s House.  Push me, pull you.  It was tense.  And don’t forget, we were never alone to work any of this out.  When we were in the room, the kids were there.  When we were out of the room, a dozen set of older couples were within feet of us.  The tension threw us both for a loop.

Donna struggled with this aspect of our time, too.  She missed her Dad something fierce, but it was confusing to have two separate routines.  Toddlers need consistency.  We tried, but I’m not certain if we ever worked it out in the twelve weeks we were there.  Sigh.  I still feel guilt thinking I did not do enough to make Mary Tyler Dad’s time in Bloomington easier for him.  The bone crushing fatigue plagued us both.  We tried, which is all we could do.

During this month, the kids and I traveled back to Chicago for scans in preparation to start spine radiation.  Exact measurements of the lesion on Donna’s spine needed to be done and could not be scheduled quickly enough in Bloomington.  Oddly, neither Donna nor I really wanted to go back to Chicago.  It felt a burden to us both, a disruption of yet another routine.  Gratefully, Auntie was in town and made the drive with us.  Around about Gary, Indiana, an hour from home, Donna got feisty in the back seat.  Really feisty.  Wailing and thrashing feisty.

I likened it to an astronaut prepping for his reentry back into the atmosphere.  Donna worried that Mary Tyler Dad would not be at home.  She worried we would miss him on the road, thinking he was driving to see us in Bloomington.  It was hard.  And loud.  And only stopped a few minuted before we reached our back door.  It was one of the few windows we had that the disruption of living someplace else for treatment was hard on Donna.  I feel so humbled when I think about how much she loved to please her parents.  I wonder what price she paid for that. 

Yeah, I got this.

These two photos show Donna conquering the big girl swing out back behind Jill’s House.  I have such fond memories of folding our laundry and looking through the window, overlooking the swing set.  Donna and my two boys would be just below, Mary Tyler Son napping and Donna and Mary Tyler Dad just having the best of time together.  I can hear her laughter and almost feel the breeze that swept past her cheeks as she swung through the air, so proud of herself.

Donna on the big girl swing

Tomorrow:  Infection

Donna’s Cancer Story: Proton, Here We Come

This is the twenty-fourth 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.

Quickly, quickly after Donna’s surgery, plans feel into place for the next phase of treatment.  She was accepted for treatment at Indiana University’s proton beam radiation center, formerly MPRI, in Bloomington.  We found housing at an amazing community called Jill’s House.  And Donna was accepted for pre-school.  What’s that, you say, accepted into pre-school?

If you live in Chicago and have a kid, education is something you have to be strategic about.  We moved to a place that had a good neighborhood school, but, as it turns out, the homes across the street were in the happy neighborhood school and the homes on our side of the street were in a different, not so happy, school.  Talk about wrong side of the tracks.  We learned this after we moved in, so started to check into pre-school options.  I mean, this whole sitting around with Mama eating bon bons and having brain surgery every few months would only take Donna so far in this world. 

This was part of our larger campaign to to live hopefully.  We chose to believe that Donna would need pre-school, and one that was worthy of her brilliance and shine.  We were absolutely unbiased, of course, as to Donna’s brilliance and shine.  Just your standard objective parents.  Right.  We toured a few and weren’t happy with the idea of so much time focused on letter, number and color recognition.  Donna needed more stimulation.  We found one we really, really liked, but it required an application and interview.  Yes, I know, an interview.  (For those of you who came to Mary Tyler Mom prior to Donna’s Cancer Story, you know how I feel about Gwyneth Paltrow, and, yes, I fully realize this is a Gwynnie type problem.  Holding head in shame now.)

The day of the interview I was frantic.  How did Donna look?  How did I look?  Donna, dear girl, shone sunshine.  Except when it came time for snacks.  The teachers sat all the kids at tables, including Donna.  I was off in the corner  nursing Mary Tyler Son.  There were tubes of yogurt distributed and the teachers were helping the kids open them.  I had never seen tubes of yogurt before.  Nor had Donna.  Seriously, when did yogurt start coming in tubes, and more importantly, why? 

I saw from a distance Donna struggling to make sense with what was handed her.  A little part of me worried, but the larger part of me saw the absurdity of the situation.  Can you imagine a kid being disqualified for pre-school for inability to eat yogurt out of a tube?  Probably happens somewhere.  Not here.  We got a call about an hour later that Donna would be warmly welcomed into the fall class.  Don’t forget this was February.  I still marvel at how certain things work. 

This was a good way to move to Bloomington, though.  We were planning for Donna’s future and that was a necessary part of choosing hope. 

Donna hanging with her brother. 

In Bloomington we found temporary housing at a place called Jill’s House.  What a Godsend for us.  When we toured, a few weeks earlier, Donna immediately felt comfortable there.  There were private rooms with bathrooms, shared kitchens, laundry, and common areas.  It also had an amazing playroom and playground outside.  Mary Tyler Dad would be with us in Bloomington Thursday nights through Monday mornings, and working in Chicago the rest of the time.  Me and the kids would be on our own some and I was worried that if we got an apartment it would be too isolating.  Best.  Decision.  Ever. 

Most of the other guests were older men receiving proton for their prostate cancer and their wives.  We learned later that Donna was the first toddler to stay there and that raised a lot of eye brows amongst the older couples.  Then they met Donna.  All was good.  These folks quickly became like extra grandparents to Donna and Mary Tyler Son.  There was always a set of arms wanting to hold and moon over the baby.  I could make dinner, watch Donna playing with a new friend she had made, and see Mary Tyler Son being traded from loving arms to loving arms.  It was lovely, a Brigadoon in Cancerville. 

Donna started treatment right away the morning after we arrived.  The kids, and there were more than a few, always got the morning appointments because they required sedation and had to be NPO after midnight.  Hungry kids = cranky kids, so the pace moved quickly.  Mary Tyler Dad wrote, “This place has a ruthless efficiency to it.  It’s not charmless, but any means, but it’s clear that the cyclotron is the pendulum that makes the whole thing tick.  When it’s not beaming radiation at tumors, people get antsy.”

We did not know many of the staff, though people were friendly.  Very friendly.  Bloomington, Indiana has to be one of the friendliest places on earth.  Except for Donna’s first sedating doc.  Not knowing what to expect, and being out of our element, we deferred to the medical team.  Donna was given a sedating drug and carried from our arms to the room where radiation is administered.  After her treatment, she was moved to the recovery room, where we were called when she awoke.

Poor kid was miserable.  Within minutes she was wailing and inconsolable.  She was clutching at her tongue.  We had no idea what was happening, though the kind nurses were very reassuring.  This was a  common early reaction to the sedative for little ones.  They assured us that Donna would ease into it in a few days.  But the tongue clutching continued as did the wailing.  We were both alarmed.  What on earth was going on with the tongue?  Donna could not tell us as she was way too busy trying to yank the thing out of her mouth. 

We asked the nurse who mentioned that Donna had received a standard secretion drying med given before every sedation.  Huh?  What the what?  Donna was a girl who had been sedated a lot.  A LOT.  We had never heard of a secretion drying med.  It had never been used before.  We asked to speak to the doc, but was told he was too stacked with patients.  After about an hour the tongue clutching diminished and Donna was able to tell us that her tongue felt, “upset.”

The next morning, at our demand, we were granted an audience with the sedating doc who seemed annoyed to have to speak with us.  We relayed our concerns, that Donna had never received that med before and we believed it was unnecessary for her, especially given the extreme discomfort it caused.  The doc took barely suppressed umbrage with us and said it was unreasonable to inform a parent, “of all the different drugs we use.”  Oh no, he didn’t.  Oh, yes, he did.  Very politely, but with great strength we told that *&$#% that Donna was not to receive that med again.  Period.  We were to be informed of every drug that was even to be considered for use in Donna.  Cancer Parents take no prisoners and one arrogant anesthesiologist was no match for us.  Tool. 

With that smackdown out of the way, things kind of moved along smoothly.  On our first weekend there, Donna woke up on a Saturday, fully expecting the rush to get to treatment.  She didn’t know what to do with the cracker I handed her.  When I told her that it was a Saturday and there would be no treatment, she said, “But Mama, you said every day for eight weeks!”  She made parenting a kid with cancer so easy it breaks my heart. 

These shots were taken by one of the other guests at Jill’s House.  He was an amateur photographer and to pass the time offered to take portraits of all the guests.  He was just one of the many outstanding humans we met there.  I was all for it.  Like last year’s family portraits, I wanted to document the moment for our family.  Mary Tyler Dad just sort of humored me.  Can you tell?

Dad humoring Mom

Mama and her kiddos

Tomorrow:  Blooming in Bloomington