Donna’s Cancer Story: The Bubble

This is the twenty-eighth 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. 

Swinging together 

During this period, Mary Tyler Dad and I opted to step inside what we called The Bubble.  The Bubble was a happy place.  Donna was with us there, so was Mary Tyler Son.  Cancer, the bastard, was not invited.  Yes, The Bubble was invitation only and it was an exclusive affair.  There was only room for four, so even close friends and family had to watch us from outside.  In The Bubble, it was always a perfect 75 degrees and sunny — kind of like San Diego. 

To be with Donna could be heartbreaking, and sometimes impossible, if we allowed ourselves to think about her death.  We learned to detach from the reality of her dying in her presence.  I think, if we were different parents, it could have easily gone the other way — detaching from Donna.  That was unacceptable.  She was like a joy magnet.  She kept us grounded.  She made everything bearable.  Mary Tyler Dad explains how The Bubble worked:

“You know, I’m able to forget how the situation is . . . that we’re teetering on the brink, with no way back when we fall.  It’s terrifying, of course, but it also reminds me to take as much delight as I can.  I love talking to Donna.  It breaks my heart that I can’t remember every single conversation we have, word for word, because they bring me such pleasure.  It’s easy to be exhausted, but it’s also easy to be delighted, and it’s vital to keep my head straight to let myself feel that delight.” 

The Bubble also had nothing to do with denial.  Mary Tyler Dad and I knew exactly what was happening.  We talked about it and sometimes allowed ourselves to imagine it together.  One day he recounted how he felt after taking six month old Mary Tyler Son for a walk to the park during Donna’s nap, “This is how it will be.  This is what life will be like without Donna.”  We both flirted with those thoughts.  Full disclosure, I had flirted with those thoughts since March 23, 2007.  Part of how I cope with hard things is to imagine them, try to feel and anticipate them, get comfortable with them. 

Rainbow Brite 

(Note to Cancer Parents:  baby legwarmers are fantastic picc line covers; Donna had a whole wardrobe of them that made her happy.)

So, yes, denial was not in play, but our defenses were alive and healthy.  The Bubble, because it was our defense worked beautifully.  I have some painful memories of not being very good at communicating with my closest friends or Donna’s other family during this period.  In their voices or their eyes I could see their profound sadness and loss.  I am ashamed of this, now, but shut myself down from that.  It was protective.  And, crazily, I felt responsible for their sadness.  I chose The Bubble because it was better.  Simple as that.  Donna’s sadnesses were related to silly things like having to get out of the tub too soon or Mary Tyler Son gumming up one of her books with his teething.  Those sadnesses I could handle.  We worked to maintain a schedule during these weeks, to create structure and normalcy for Donna.  The medication schedule called the shots, but we did what we could to work around them.  Normalcy and a schedule meant Mary Tyler Dad left for work in the mornings, me and the kids ran errands.  That helped preserve The Bubble, too. 

Sometimes, in the midst of the most mundane tasks, The Bubble was at risk by my wish to inform the folks we came in contact with with just what was happening.  Our dry cleaner or the nice lady at the McDonald’s drive through window or the cashier at the grocery story.  I fantasized completing our brief interactions with something like, “Hey, you know my daughter has cancer.  Yeah, and she is dying.  Right now her cancer cells are duplicating at an alarming rate and it will kill her.  Soon.  Isn’t that messed up?  I know, she looks perfectly fine!  Okay, thanks, and have a nice day!”   Sigh. 

During this month, Donna was the first child from Children’s Memorial approved for a new respiratory therapy meant to influence her immune system to fight the cancer cells specific to her lungs.  MD Anderson in Texas was calling the shots, e.g., running the study, and allowed Donna to use it under compassionate care standards, or off-study.  We were told she was the youngest child to receive it.  It is twisted when you hear that and feel a sense of pride.  The drug was leukine sargramostim and it was delivered via nebulizer.  Because it was so toxic, and I was nursing an infant, the treatments were given outside on our deck in the open air.  Mary Tyler Son and I could only watch from behind glass.  Donna would sit on her Daddy’s nap, studiously watch Dr. Seuss’s The Grinch Who Stole Christmas and Horton Hears a Who, and hold a purple dragon mask over her face while steam, the toxic treatment, escaped out the dragon’s nostrils.  This was a learned skill for Donna who historically hated masks.  She did what she needed to do.  As we learned from one of her favorite books at the time, this made her brave.  Yes, my girl was heartbreakingly brave, each and every time it was asked of her. 

Our days became a bit of a maze working around medications, but still, Donna’s quality of life was excellent.  She was sunny, funny, clever, bright, feeling well.  She loved her brother and liked nothing more than to stand over him and make him laugh with her protracted spelling of his name.  It never failed.  She would shout his name, then proceed to spell it, with squeals of delight pouring out of her baby brother.  The more he squealed, the more Donna rolled her letters.  That six month baby boy loved his sister so.  His eyes would naturally gravitate to her whenever they were in the same room.  They loved one another.

Brother and Sister

Often during these weeks, I would have to cancel or postpose hospice visits.  Technically, they were palliative visits, as Donna remained on treatment.  The fact that it was understood the treatment would not result in cure was immaterial.  The nurse or social worker would call and ask to come by.  “I’m sorry,” I would say, “We’re off to the acquarium, zoo, dinosaur bone museum, insert attraction of your choice here.”  They were imminently patient with us and I was grateful for that.  God bless home nurses and the work they do, but that job is just inherently difficult to schedule.  We knew from years of experience that if you schedule a home visit, you will wait.  Donna was too busy to wait.  She did not have time to wait. 

Donna’s fourth birthday was this month, too.  As lovely as The Bubble was, this birthday, her last, almost broke me.  I knew there was a lesson to be learned in having a terminally ill daughter who did not feel sick, but trying to learn that lesson with the artifice of “HAPPY BIRTHDAY!” was so very hard.  It felt cruel.  Donna’s birthdays had never been easy.  On her first, I was downed with a migrane.  On her second birthday, the idea of a third was questionable.  On her third birthday, we were planning a surgery just days later, thinking a fourth was unlikely.  On her fourth, we knew she would not see a fifth.  During these days, Donna started using the phrase, “When I’m 8, I will do this,” or “When I’m 10, I can do that.”  A piece of me died each time she said it. 

Four at Candlelite

But Donna did not know her fate.  She was a child proud to be growing up.  She was four!  She deserved a party.  She wore a hat.  We had some playmates over to build pizzas.  We smiled and ate cake and celebrated.  We went to the joy with Donna, clutching The Bubble the whole way. 

Tomorrow:  Whiplash

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