Tag: proton beam radiation

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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

 

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Donna’s Cancer Story: Relapse

This is the second 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. 

There is no simple, linear explanation for what happened during these weeks.  After the mysterious fevers wore off, Donna seemed to blossom and become more of herself.  Her cheeks pinked up, her hair, short until now, grew curls seemingly overnight.  She was active, silly, engaged and engaging.  I coined the term “brightful” to describe her lovely combination of clever smarts and playful joy. 

Donna on the red rocker

With a few weeks to absorb the diagnosis and Donna returning to her shiny self, we settled into Threat Level Orange and were relieved to be rid of the red.  Donna was afforded some time to recover from the surgery and started into pediatric rehab three mornings weekly at the Rehabilitation Institute of Chicago.  She loved her mornings there — it was like an indoor playground.  And quickly, she regained those physical skills she had lost, though stairs, running and jumping were still very difficult for her.  The structure of the schedule was also a blessing to us after the free for all of the past month.   

Donna putting letters on the mirror

The first post-surgery MRI date came and, teeth gritted, we went back to Children’s Memorial and watched our girl be put to sleep so that we could get a glimpse of what was happening inside her tiny, beautiful head.  We worried, though there was a sense that this first MRI was not to be feared as it seemed impossible that the beast would return so soon.  Home again in the afternoon with a drunk, post-sedation Donna requiring lots of care and attention, we got the call from the nurse coordinator that while not official, the scans looked clean.  Hooray!  A second call that evening confirmed that radiology also deemed the scan clean.  Double Hooray!  It felt like the piano above our heads was moved a little higher. 

Two days later, at the clinic for a follow-up visit, we learned that the original report was wrong.  There was a “nub” at the tumor site that did not look like scar tissue.  Donna’s neurosurgeon was who caught it, and with closer inspection, all others now agreed that Donna had relapsed.   

This news sent us into weeks of uncertainty.  No one could agree about how to proceed.  Add to that, Johns Hopkins now questioned the original diagnosis.  Our oncologist didn’t want to use chemotherapy, our surgeon didn’t want to operate, our radiologist couldn’t decide which type of radiation would be best.   

  Donna on the swing

Instinctively, we joined Donna in her blissful, toddler state of being.  We went to the zoo.  We treated Donna to her first ice cream.  (She didn’t like it).  We bought a video camera and started shooting.  We did what we needed to do to fill our days, Donna’s days, until we got her to sleep and we had some time to think and breathe and feel the fear that we kept at bay when Donna was with us.  And just when we thought we couldn’t take another moment of the hell that fear is, there was Donna, right in front of us, demanding us to be silly, to sing and to dance and to play.  How could we not?  So we did.  We played and worried.  Sang and fretted.  Snuggled and tried not to drown in the doom.

As days passed, a plan was cobbled together:  Donna would travel to Houston to receive proton beam radiation treatment at MD Anderson in Texas.  Hours were spent on the phone ensuring that Donna’s treatment would be covered by our insurance.  My social work advocacy skills were a welcome tool for these tasks. 

Mary Tyler Dad wrote in our caringbridge journal during this month, “Medicine, fear, and love.  That’s what we have right now, and enough of the third is helping us struggle through the first and the second.”  Amen. 

Tomorrow:  Surgery 2.0