RIP Children’s Memorial Hospital, 1882-2012

On Saturday, June 9, 2012, Children’s Memorial Hospital will cease to exist.  The end.  No more.

In its place will be the bright and shiny, state-of-the-art Ann & Robert Lurie Children’s Hospital of Chicago.  This is not a bad thing, and in fact, is a great thing that will benefit the children of Chicago and Illinois in countless ways.  And yet, I can’t deny the sadness this brings me.  With ‘Donna’s hospital’ closing, we lose yet another link to our girl.  Indulge me as I say goodbye before I say hello.

Diagnosed at 20 months old and in treatment for the remaining 31 months of her life, Children’s Memorial became a second home to Donna.  Within those walls we heard the catastrophic words, “there is a mass in your daughter’s head.”  Within those walls we cheered as our girl learned to walk a second and third time.  Within those walls we learned how to choose hope, in desperate and dire times.  Within those walls Donna laughed and played and cried and vomited and awoke from sedation more times than I can count, always asking for pancakes and milk.  She slept and woke, ate and drank, struggled and thrived.  She would shyly smile at her doctors and nurses, she would slowly charm her art and music therapists, she would walk lap after lap around 4 West/Oncology, pushing her shopping cart, Mary Tyler Dad and I pushing her IV pole, trying to keep up.

Blessedly, Donna almost always enjoyed her time at Children’s Memorial.  It could be three in the morning, a neutrapenic fever raging inside her, and we would pull under the canopy off of Fullerton Avenue, and Donna would greet the helping hand logo with her own helping hand, stretched high in salute.  What a dear she was.

She made the rounds, you see, spending time on the neurosurgery floor after each of four tumor resections (3W fishbowl, anyone?), inpatient chemo rounds and stem cell transplant on 4,  clinic and Day Hospital for outpatient chemo, ER visits (blessedly always expedited for cancer kids) on 1, procedure suite and recovery and MRI scans on 2, the first alarmingly terrifying days in the PICU after diagnosis, and day after day at the aphaeresis unit, trying to extract the elusive healthy stem cells untouched by her chemo.  Yes, we all made the rounds.

In trying to understand why change — positive change — would make me so sad, I think it is this:  Donna was very alive at Children’s Memorial.  The closing of this structure is another loss, another connection to Donna gone, poof, gone.  Ultimately, of course, the structure is bricks and mortar, I know this, I understand this, but these particular bricks and this particular mortar hold a lifetime of memories for me.  My daughter’s lifetime, to be specific.

And Donna, unfortunately, is not unique.  She is one of not hundreds, but thousands of children that have lived and died within the walls of Children’s Memorial Hospital.  The current building was built in 1960.  It is decidedly past its prime, but at some point, it, too, was state-of-the-art.  And almost certainly, there was a grieving mom somewhere mourning the loss of the buildings that had to be razed for pediatric progress to occur in the late 1950s.  That is life and that is change and that is progress.  Oh, but all that sucks sometimes, doesn’t it?

For me, the land at the crossroads of Fullerton and Lincoln Avenues is sacred ground.  Countless children over one hundred years have died in that space.  Just as sacred are the thousands upon thousands of children whose lives were saved in that space, which is legally nothing more than an address.  The children who died there are not buried there.  There are no laws or regulations limiting the development that will follow, such as would surely be the case for a cemetery.  Calling me a bleeding heart would be accurate.  My heart hurts when I think about that ground, the lives lost and saved, the tears spilled, both of joy and of sorrow.

In the midst of all the celebration, justified as it is, I want to take a moment and think of those children that were treated at Children’s Memorial Hospital over the past century.  I want to remember the parents that stood helplessly by as their child was passed to the hands of the doctors and nurses that could or could not save them.  I want to honor the lives that were lost and the lives that were saved within those walls and on that ground.  For just a moment, I want progress and change to stop, so that we can pay homage to what came before.

So, yes, bricks and mortar, and memories that do not exist within the walls, but within the hearts and minds of doctors and nurses and janitors and moms and dads and security guards and surgeons and clerks and brothers and sisters and patients, so many patients, and all those who walked the hard tiled floors, breathing, hoping, bargaining, praying, pleading, wailing, cheering, despairing.

Before we celebrate the inevitable progress and successes and losses that will come to Lurie Children’s Hospital of Chicago, let us remember and honor what was.  Bricks and mortar, but so much more.  So very much more to so many.  Sacred ground, at the intersection of Lincoln and Fullerton, amidst the bars and the condos and the college kids.

Sacred ground.

CMH Lobby

CMH Front Hall

CMH 4W

CMH Clinic

CMH Exam Room

CMH Vitals Room

CMH Purple Elevators

All photos courtesy of Lisa Watters.

You can hang with me on Facebook, or you can learn about my charity, Donna’s Good Things, or get a daily dose of Good News.  Mary Tyler Mom is one stop shopping.

How Cancer Still &%@$# With Me

Twice since my daughter died have I been convinced that Mary Tyler Son had a brain tumor. 

The first time was last April when four days in a row he woke up complaining of a headache.  Headaches, but specifically morning headaches, are one of the primary symptoms of pediatric brain tumors.  I didn’t know that before I moved to Cancerville, but now it is seared in my brain.  His two year old self also seemed not to be 100%.  His appetite was down a little.  He was a little more needy.  Yes, those are both symptoms that something could be seriously wrong as well.  It doesn’t matter that they are also symptoms of a cold or a virus or a simple change in mood. 

My thoughts raced.  I went from 0-60 in seconds, anticipating his diagnosis, treatment, and certain death.  I spoke about it with Mary Tyler Dad incessantly during that week.  A pit presented itself in my stomach that grew larger by the hour.  I dreaded picking Mary Tyler Son up from the babysitter, wondering what she would reveal about the symptoms he surely demonstrated.  Every day, it was the same, “Nah, he’s good.  He ate well and played well and all seems fine.”  That didn’t matter.  All I felt and all I saw confirmed the worst.  It was happening again.

On the morning of the fourth day, I called my sister at 7:00 a.m.  She was sleeping.  Bah!  How can she sleep at a time like this?!  Then I called my Dad.  He gave me sane and good advice.  Call Dr. Stew.  He was right.  We contemplated calling our pediatrician, but when you’re worried about your only surviving child having a brain tumor and one of the leading pediatric neurooncologists in the world is in your cell phone, you call him.

I did.  Dr. Stew returned my call by lunch time.  He was just as I had remembered him.  Calm, compassinate, caring.  He listened to my concerns and asked me questions.  At the end of that exchange he told me that he was more concerned by the tone of my voice than anything I had said.  He offered to see Mary Tyler Son that day.  He offered to schedule an MRI before the weekend, if that was what was needed.  And then he spoke some wisdom that I think about every day, “You can’t ever erase what you know,” he told me.  I felt better instantly.  Just confirming that Stew was there and available seemed to be enough to soothe my panicked and traumatized soul.

Strangely, Mary Tyler Son never complained of another headache.  I got over it and life returned to normal.

Until, that is, last week.  On Wednesday morning, as he was leaving for his sitter, we noticed a distinct limp in Mary Tyler Son’s gait.  He told us that his foot hurt from the “perfect rock.”  The perfect rock is a largish granite rock in a neighbor’s yard that we walk past daily en route to his sitter.  Mary Tyler Son likes to crawl on it, stand, and launch his little three year old self off of.  He is proud of himself.  I encourage it regularly, standing there and applauding his every leap.  Sure enough, his sitter confirmed that, yes, Mary Tyler Son and his little friend had been jumping off of it repeatedly on Tuesday afternoon.  Because our neighbors had picked him up and sat with him until bedtime so we could be at a St. Jude’s fundraiser (oh, the irony), we hadn’t noticed it until Wednesday.

But, you see, none of that mattered because in my head Mary Tyler Son had a brain tumor.  A modified gait or loss of a physical milestone is another one of the primary symptoms of a pediatric brain tumor.  What we were seeing was surely that.  His foot looked fine.  I could flex it every way under the sun and there was no pain.  This had to be, of course, a brain tumor.  Mary Tyler Dad thought I was crazy and overreacting.  There was more discussion about seeing the pediatrician.  We set a deadline for Monday.  If on Monday there was still a funny gait, we would deal with it then.  I tried to breathe.  In and out.  In and out.  In and out.  The dread was highest again at pick-up time.  What would the sitter say?  Would she, too, see what I saw — the initial formations of the disease that would take both my son and daughter?

Adding to my anxiety/fear/terror was Mary Tyler Son’s words.  He starting asking, in a whiny tone and with his arms extended, “Mama, carry me.”  Those three words plague me.  They clang around my head like the clapper inside a bell.  Loudly.  LOUDLY, LOUDLY, LOUDLY.  Those words fill me with dread as they are the exact three words Donna spoke before she herself was diagnosed with her brain tumor.  I thought she was being lazy, or wanting to be coddled.  Most of the time I would carry her in those couple of weeks, but some of the time I required her to walk, even when she wailed or cried.  That particular memory haunts me. 

In the end, Mary Tyler Son is fine.  No worries.  I have relaxed, as of Mother’s Day, as his limp has disappeared.  And with the limp disappearing, so too have the commands to carry him.  I am breathing again.  In and out.  In and out.  In and out. 

PTSD is how cancer still fucks with me.  As Dr. Stew says, I can never erase what I know.  And I know too damn much.

Mary Tyler Mom Goes to Springfield

General Assembly
Photos by Kristen Schmid, courtesy of the University of Chicago Medicine

I’m a reformed political junkie.  Vice President of the College Democrats, yo, class of 1991.  We won’t talk about the fact that my boyfriend was a College Republican.  Somewhere along the line, I lost the faith.  Politics don’t move me the way they used to and I no longer believe what politicians tell me.  Don’t get me wrong, I vote and have opinions and still hope for brighter days, I just no longer feel politics is the way to get there.

All that went out the window when a fellow Cancer Mom contacted me in February about HB 4211, the Illinois Childhood Cancer Research Fund.  Laura, over at Ay, Mama, mother of Atia, and Director of Atia’s Project Ladybug Fund, graciously asked me if I would ever be interested in testifying in Springfield, Illinois’ capital, on behalf of an annual income tax return checkbox, enabling Illinois tax payers to donate $ to pediatric cancer research as part of their annual taxes.

Um.  Yes.  Yes, I would.

Well all of that came to fruition bright and early last Thursday morning when me and Laura made our impassioned pleas.  It was solemn, it was fun, it was empowering, it was a packed house.  I wrote in January that children with cancer need research dollars more than they need a bald Barbie.  I still stand by that and my testimony on Thursday was the proof of that snarky pudding. 

It is an emotional process to continue to tell Donna’s story.  Mary Tyler Dad and I say it is how we parent her now, and sad as that is, it is true.  In the absence of homework and tween drama and first dates and sibling squabbling, we have Donna’s Good Things.  We can’t hug Donna’s Good Things, or comfort it, or tickle it behind its ears or read it stories before bedtime, but we can nurture it.  We can support it and help it grow and develop.  It’s not enough, but it is something and it is what we have.

I am supremely grateful to Laura, my fellow Cancer Mom, herself a cancer survivor, for reaching out to me and including me and Donna’s Good Things in her initiative.  I like her.  She is smart and pragmatic.  In our first conversation she laid it out on the table:  Atia was treated at Comer Children’s Hospital at the University of Chicago; Donna was treated at Children’s Memorial, the soon to be Ann and Robert Lurie Children’s Hospital of Chicago (first week of June I will be writing about that transition).  Atia was alive; Donna was dead.  Together, we accounted for the majority of children with cancer being treated in Illinois.  She had me at “Hello,” to be honest.

Something that grieving parents fear is that their child will be forgotten.  And that is a very real possibility.  When Laura was testifying, she held beautiful Atia in her arms.  Atia shines brightly.  She is a gorgeous girl, full of life and pluck.  A lot like her Mom.  Her testimony was received well, people welling with Atia’s story, and questions were asked when she finished.  When I reached the podium, I introduced myself and opened with a punch, “My daughter, Donna Lubell, died of papillary meningioma, a rare and aggressive brain tumor, on October 19, 2009 at four years old.”  Eyes were averted.  I tried to make eye contact, but it was hard.  People don’t want to hear about children that die.  People don’t want to look a grieving parent in the eye.  It’s too harsh a reality.  Trust me, I know, I get it.  Sometimes it’s hard to look in the mirror.  Laura is not afraid to look me in the eyes.  And she appreciates the power and significance of educating people that pediatric cancer kills children.  Seven every school day.  One in five of every child diagnosed with cancer will die. 

Testimony

Donna’s story is now part of the congressional record for the State of Illinois.  That’s saying something.  And even if people could not look at me when I spoke, I could feel that they were listening.  And I could feel Donna, too, keeping me company, guiding me through the day.  And what a day it was.  I am honored to have testified beside Laura and Dr. John Cunningham, Chief of Pediatric Hemotology/Oncology at The University of Chicago Comer Children’s Hosptial in our attempt to make the Illinois Childhood Cancer Research Fund a reality.  Grateful thanks are also extended to our sponsor, Representative Cynthia Soto, of Illinois’ 4th District.  She could not be a more invested sponsor or a more gracious host to us in our visit to the Capital — even getting us a meet and greet with Govenor Quinn. 

I am so proud of what we did together, Laura and I.  I’ve said it before, but Cancer Moms are some of the most amazing people you will ever meet.  Never underestimate a Cancer Mom.  Word.  Thursday we were able to do something that could potentially make a vital difference in the lives of thousands of Illinois children.  Here’s to passage of the Illinois Childhood Cancer Research Fund, here is to the researchers that need our help, here is to the taxpayers giving generously, here is to the children, here is to Donna. 

We did it, girl. 

High Fve

Good morning, Mr. Chairman, and Committee Members. My name is Sheila and I am honored and humbled to be here today. 

My daughter, Donna Lubell, died of papillary meningioma, a rare and aggressive brain tumor, on October 19, 2009 at four years old.

Donna had an early prognosis of 2-3 months when she was diagnosed just under two years old.  Her oncologist at Children’s Memorial Hospital, the soon to be Ann and Robert Lurie Children’s Hospital of Chicago, gently told us that it would be perfectly reasonable not to treat her cancer, to bring her home and enjoy the time she had left.  We opted to treat, under the guidance of our team, and are so grateful we did. 

Though more than half her life was spent in that treatment, cancer did not define Donna.  Her bright and intelligent nature did.  Her astounding vocabulary and empathy did.  She was perfect measures of grit and grace.  She loved books and dancing and her baby brother Jay.  She was and continues to be a wonder to us and our guide.

Donna’s thirty-one months of treatment were an endurance test for our family.  They included four tumor resections, six rounds of inpatient chemotherapy, followed by six hospitalizations for neutropenia,  a stem cell transplant, twelve weeks of out-of-state proton beam radiation treatments, and four months of palliative and hospice care in our home. 

Her treatment team, lead by Dr. Stewart Goldman, had no roadmap to guide them.  There was no protocol for them to consult.  Every single treatment decision that was made was a shot in the dark, an educated guess, a hope, and a wish.  The thing that failed Donna was the science.  Her cancer was simply  better equipped than her doctors. 

Great and tremendous strides have been made in cancer research in the past few decades.  When children like Atia are diagnosed with ALL now, almost nine out of ten of them will survive.  Those are pretty good odds, until you realize that they apply to children.  Our children.  Your children.  Illinois’ children. 

I stand before you today not asking for $, but asking for opportunity.  The 248 children that were newly diagnosed with cancer at Children’s Memorial in 2011 need that opportunity.  Their families need that opportunity.  Give us this opportunity to better equip the doctors and researchers that treat our children.  Do it for Donna, and Atia, and for the thousands more that will follow them. 

My humble thanks to you.

 

Kids Looking Up
Things are looking up for Illinois kids.
Handshake with Quinn
Hand shake with Illinois Governor Pat Quinn
Ladies
Mary Tyler Mom, Rep. Cynthia Soto, Laura of Atia’s Project Ladybug Fund