Author: Sheila Quirke

Posted on

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

Posted on

Vatican v. Nuns: Sr. Iphielya Weighs In

Sr. Iphielya

Sr. Iphielya, the alter ego to my alter ego, is an occasional contributor to Mary Tyler Mom.  She is also the patron saint of empathy, hence, her name.  Sr. Iphielya is a little riled up with all this business about nuns in the news this week.  

I’m a good nun.  Or at least I try to be.  Following the Golden Rule, leaving the earth a better place, and helping my fellow human beings are all things I’ve taken seriously these many years of serving our Lord.  You can imagine my surprise when the Vatican explained that I’ve been doing it wrong all this time.

What’s that, you say?  You didn’t hear that?  Why, yes, yes it’s true.  A group of nuns from the United States went to visit the Vatican on official business just last week and learned that not only were we not doing the job right, but that we would now be supervised by a bishop.  You can read all about it here.

So now we are to understand that us nuns have been promoting, “radical feminist themes incompatible with the Catholic faith.”  Hmmmm.  I’d like to take a ruler to the knuckles of the knucklehead that wrote that.  And I’ve no doubt that person is a man and a priest.

Yes, you see the Vatican also tells us that the bishops in America are, ” the church’s authentic teachers of faith and morals.”  While Jesus didn’t teach me to keep my mouth closed if I can’t say anything nice, my mother did, so no comment on American bishops.  Cough, cough [sex scandals, adoption scandals, payouts] cough, cough.  So sorry, I must be coming down with something.  Just a moment while I get a lozenge.

Now where was I?  Oh yes, we sisters are to listen to the bishops, talk more about the “sins” of abortion and same-sex marriage, and less time focusing on poverty and economic injustice.  Oh, yes, and express no opinions whatsoever about political matters.  Apparently, we are to leave that to the bishops, too.

Why just two weeks ago, Bishop Daniel Jenky of Peoria laid out the case that President Obama is following in the path of Hitler and Stalin.  Oh, yes, he did, you can read about it here.  Bishop Jenky is a learned man, holding a doctorate in divinity, don’t you know.  Well, then.  He must be right.  And certainly “an authentic teacher of faith and morals.”  Now where is that ruler when you need it . . .

The thing is, the American nun is a dying species.  We are right now 57,000 strong, but our median age is over seventy years old.  Are we truly what the Vatican is so worried about?  A group of women living an extinct way of life that understands the principles of poverty, chastity, and obedience (to JC, mind you, not the Pope) — is that really something to fear and dominate and control?

Thank you, Pope Benedict.  And thank you, American bishops, for you have just done for nuns what we have not been able to do for ourselves for years. You have shone a light on all our good works.  You have brought much needed focus and attention to the fact that we practice instead of preach. And because we have never been preoccupied with the power struggles within the church, as we were never invited to the table, you have shown just how powerful a group of old ladies can be.

If you want to show your support of American nuns, as 20K+ have already done, sign this petition at change.org that will be sent along to the Bishop now charged with reigning us in.

 

Posted on

Disney’s Chimpanzees: Is it kid friendly?

Chimpanzee Poster

Meet Oscar.  He is the toddler hero of Disneynature’s just released documentary, “Chimpanzees.”  It’s his eyes that got me — just look at them. Like my Mom, I’m a sucker for chimps.

Completely on a whim, Mary Tyler Son and I went to go see it this afternoon. We had house guests this weekend, friends from Iowa who both entertained us and brought Crack Pie and Carmel Bacon Cashew Popcorn for our consumption.  As they were preparing to leave yesterday, Mary Tyler Son broke down in tears, probably thinking that he would be stuck with just me all day and no cool older kids to play with.

I knew I had to up my game, but wasn’t certain what was on the agenda. Chimpanzees!  A friend gave it a thumbs up on the facebook and seeing it was rated “G,” I promised the boy that if he behaved himself at a meeting I had to drag him to, we would go see the movie.  We watched the trailer this morning, and with eyes open wide, he was enthralled.

A few folks have asked me if it was “kid friendly.”  For me, YES.  It captivated both three year old Mary Tyler Son and myself.  Just 70 minutes in length, the timing is ideal for young kids.

The cinematography is astoundingly beautiful.  Set in a rainforest in Uganda, the crisp depiction of water drops on the flora and fauna of the forest were simply breathtaking to me.  And hats off to those behind the camera. They managed to capture the personalities of the chimps and the relational dynamics of tribe life in a really engaging way.

Less stellar was Tim Allen’s narration.  I just kept thinking about Tool Time and Pamela Anderson.  Distracting, annoying, and a little too chummy for my taste.

Regarding violence and death and the brutality of nature, in true Disney style, that was skimmed over from my POV.  You should note, though, that my POV is that of a Cancer Mom who has buried a child.  Words like death and dying and pain and sadness are spoken easily in our home.  I know that is not always the case around young kids.

So, for the record, baby Oscar’s mom dies midway through.  She is eaten by a leopard after being separated from her tribe and her Oscar by a rival group of chimps.  None of this is seen, but you do hear the satisfied roar of a large cat.  MEOW.  A moment later, the narration is frank and tells us that Oscar’s mom has died.

More dramatic tension comes from this rival “army” or “mob” or “gang” of chimps headed by their alpha male, Scar.  As is the case in a natural setting, animals must hunt for food.  While no violence is ever shown, the hunt is depicted and it is clear that larger, more powerful animals eat smaller, more vulnerable animals.  In Chimpanzees, that would be a monkey being eaten by the “good” tribe of chimps.  Music intensifies what is happening on screen. Nom nom nom and scene!

A last interesting theme would be that of adoption.  As Oscar is orphaned midway through, we see his attempts to find another caregiver, with no luck. He does thin, and we are shown this.  He is searching for his mom, and we see this, too.  It is not belabored, but the narration makes it clear what is happening and the threat that exists for Oscar being a three year old chimp without a protector.

Enter Freddie!  Freddie is the alpha male of Oscar’s tribe.  In a truly Disney-esque turn of events, Freddie assumes responsibility for Oscar.  It is lovely and tender to see, and honestly could not have been scripted any better. We see both male and female caregivers, we see adoption, we see death and loss, and vulnerability.  Nature at its finest.

But don’t listen to me.  What do I know?  As we were leaving the theater, Mary Tyler Son gave it three “very”s.  “That movie was very, very, very good!” He asked questions throughout the film, “Why don’t the chimp dads take care of their kids?”  “Why did that leopard eat the mom?”  “What kind of fruit is that?”

Best yet, he crawled up in my lap the second we sat down and cuddled with me the whole time.  When Oscar’s mom nuzzled his neck, I did the same with Mary Tyler Son.  When she kissed his cheek, I kissed my boy’s cheek. When she groomed Oscar by picking the ticks off of him, I picked the ticks off Mary Tyler Son.  Not really, but you get the idea.  Seriously, the quality cuddle alone was worth the $13.50 ticket price.

On a heavier note, seeing this movie and knowing that chimpanzees are in real danger due to development and the cutting down of rainforests in Africa, it is hard to deny how vulnerable the animals that we know and love are.  I grew up seeing chimps in the zoo, but not having any real sense of their magnifcence.  Today, I believe Mary Tyler Son got a sense of something that would never be duplicated with a visit to the zoo.

For all patrons who see Chimpanzees in its debut week, April 20-April 26, 2012, Disneynature will make a donation to the Jane Goodall Institute (JGI). You can see the trailer and learn more about JGI here.