‘Parenthood’ and Cancer

I love parenthood.  And I love ‘Parenthood,’ the NBC slice of privileged Northern California life drama.  I never miss an episode.  Really.  And when I see a new episode pop up on Hulu, well, I know just what Imma curl up with as soon as the boy is asleep.  Every episode makes me cry.  Every damn episode.  I love it.  Capital “L” Love it.

I pine for the closeness of the four siblings.  Four kids each crazy different in qualities and temperment attached to four spouses/significant others also equally different in qualities and temperment, but impossibly, making all those relationships work.  And the parents?  Love those two, too.  I can’t quite get a read on the Mom Camille, but the Dad?  Zeek?  Bam.  Great character, great acting.

I have no idea how they make it work without familial bloodshed.  Really.

This season, its fourth, is like crack for me because so many of the story lines mirror my own life:  Adoption?  Check.  Stepping away from employment to focus on family?  Check.  Cancer?  Check and check.  Sadly.

It is commonly understood amongst the cancer circles I find myself in that it is hard to portray cancer and living in Cancerville accurately.  My Sister’s Keeper?  I hated it.  Really, really hated it.  50/50?  Better and so full of potential, but missed so many marks.  I am both hoping and dreading the inevitable sale of the film rights to “The Fault in Our Stars,” a newish and wildly popular YA book that is next on my list of books to read, but is getting tremendous press.

This season, Kristina Braverman (great and intentional surname, no doubt) is diagnosed with breast cancer that has metasticized in her lymph nodes.  Not great.  Especially not great for Kristina, who is a fairly high-strung, though incredibly loving, mom.  Ugh.  I feel for her.  I do.  And, yes, as a sometimes high-strung, though incredibly loving, mom myself, yeah, I relate.

Hats off to the writers, man.  They are nailing it.  Capital “N” Nailing it.  The nuances of Cancerville, though the Braverman family has just moved in, are spot on.  I see the fear in their eyes.  The complete lack of control you have within the medical system, as you become just a cog in the cancer wheel industry.  The almost unbearable beauty of life that you become aware of that at times feels oppressive as you have to recognize and appreciate all of it.

The sacred moment when you watch the poison that you hope/pray will heal you snakes its way through yards of plastic tubing.  The quiet in the room at that moment, despite whatever noise may be present.  The helplessness of the person you love most staring at you, close in inches, but miles apart in so many other ways.  The awkwardness of needing help and feeling immense gratitude when that help presents itself, but it is paired with equally immense annoyance that you can’t find the damn jar of peanut butter.

I watch every week and I am dumbfounded at the writers’ precision, the actors’ gifts in bringing Cancerville to life.  Seeing that reality so deftly portrayed on screen is bringing truth to life.  And there is comfort seeing your truth on a screen, whatever that screen may be.

Parenthood Cast

Cast of NBC drama ‘Parenthood’ — aren’t they all just impossibly beautiful?

Bald Heads, Clear Eyes, Full Hearts, Can’t Lose

Saturday was the big St. Baldrick’s shaving event our charity, Donna’s Good Things, sponsored.  I am still reeling.  To be on the receiving end of such love and support and action is humbling, astounding, and quite honestly, a little paralyzing for me.

At the root of all of this is Donna, our little girl.  The utter success of Saturday’s event is proof positive that her bright light, gone two years, five months and five days, still shines.  All that goodness she inspires fills me up.

$72,000 and still counting (unofficially) is what was raised.  Those dollars will go directly to St. Baldrick’s and be used to fund research for pediatric cancer.   We are currently $52K above goal.  WOW.  Never in a million years did we think Donna’s Good Things would become a force in Cancerville.

The purpose of our charity is two-fold:  1) to do Good Things that provide joyful opportunities for kids in difficult situations; and 2) to encourage others to do Good Things in Donna’s name, helping to fulfill her potential that was cut so dreadfully short.

When I wrote Donna’s Cancer Story in September, I had no idea what it would lead to.  Like most things in my busy life, I was just thinking about the day at hand — what am I responsible for today?  What needs to be done? For thirty-one days, that was tell the story of Donna’s cancer.  My sincere belief was that if people came to know Donna, they would know pediatric cancer and how devastating it is for these kids and their families.  And to know Donna was to love her, so in bringing her to people my hope was that knowing would become loving would become doing.  I’m strategic like that.

Saturday was the culmination of that doing for one reader.  Jamie is a mom like me.  She works outside the home like me.  She has young children like me.  Something in Donna’s story touched her so deeply that her knowing turned into doing pretty quickly.  Soon after the story ended, Jamie contacted me with the idea to host a St. Baldrick’s event.  She herself was in to shave and was committed to raising $5K.  I was a little bowled over, but I was in. Yes, of course, I wanted to help.

We first met on Jamie’s birthday.  Why she wanted to spend her birthday with a stranger organizing a charity event months away, I don’t know, but I am indebted to her.  That first night I found myself shying away from Jamie’s lofty goals.  Crazy high numbers were being thrown around and they scared the stuffing out of me.  There is nothing worse that trying to raise $ to honor your dead child and not meeting the goal.  Seriously, it is like another little death.  I cautioned reserve and a much lower goal of $20K.  Jamie was optimistic.  I was cautious.

Getting from $20K to $72K was a lot of work and involved loads of folks: The shavees who were going under the razor, the volunteers who gave time and energy, the donors who opened wallets and dug deep, and the blogging community who sounded their drums to get the word out loudly and repeatedly.  $72K for pediatric cancer research would not have happened without any of them.

Saturday’s event is still a bit of a whir to me.  I likened it to a wedding, as it is the only thing I can think of that captures the emotion, joy, good cheer, and optimism of the event.  Plus, it was crazy like a big wedding is crazy.  People wanted to be photographed with me.  People stood in line to meet me. People handed me cards with supportive words as I met them.  And like any good wedding that you’re in the middle of, I neither ate nor drank during it.  I was too busy meeting and greeting and crying and dancing.

People came from across the country for the shave.  ACROSS THE COUNTRY.  I mean, come on!  I was freaked out to meet folks, but especially women, that were not only willing to shave their head because I asked them to, but were willing to fly and drive across the country to do it. And there were dozens of people who did this.  Many of whom raised thousands of dollars.  Yowzers.  Talk about committed.  These folks, lined up for the shears, were proof that Donna was not forgotten.  And while I am not able to tuck her in or fix her fish sticks, I am able to tell her story.  And $72K later, it is clear that folks are not only listening, but doing.

And before I get to the photos, just a few moments of gratitude:

  • Thank you to Jamie for being moved to do something, and allowing me to help;
  • Thank you to all of our shavees who traveled near and far to participate in St. Baldrick’s goal of conquering kids cancer.  You raised $ and are now raising awareness.  I am at a loss to tell you what your actions mean to me;
  • Thank you to Nikki of Moms Who Drink and Swear for being the best MC this gal could ever ask for;
  • Thank you to Katy of I Want a Dumpster Baby who sold the heck out of iPad raffle tickets;
  • Thank you to Robert Jeffrey Salon who provided volunteer stylists for all our heads;
  • Thank you to Candlelite Chicago who could not have been kinder or more accommodating in the use of their fine establishment;
  • Thank you to the St. Margaret Mary community who offered their parking lot and have allowed Donna and her story to enter into the hearts and minds of the beautiful children who study there;
  • Thank you to TK Photography for shooting the event for Donna’s Good Things;
  • Thank you to the DOZENS of bloggers across the country who supported this event and encouraged their readers to do the same;
  • Thank you to Heather of St. Baldrick’s for taking us under your wing — it’s a lovely, warm place to be;
  • Thank you to my Dad for just sitting at the bar and taking it all in — witnessing what his granddaughter was still capable of doing;
  • Thank you to all of our silent auction donors and table workers;
  • Thank you to Amanda Cohen at Fine Point Productions for providing some of the most amazing face painting I have ever seen;
  • Thank you to all the supporters who came out in droves to cheer on your shavee;
  • Thank you to Julie with Lifesource and Be the Match who dropped her plans for a family event to set up a bone marrow drive
  • Our speakers, Dr. Rishi Lulla from Children’s Memorial in Chicago and our survivor friend, Brooke, who came out with her family to talk to the crowd about what cancer is like when you’re a kid in treatment;
  • Foster Dance Studios in Evanston for choreographing the Firework flash mob;
  • Performing Arts Limited for supporting Donna’s Good Things in a hundred different ways.

Whew.  Now I only need to worry about who I am missing, which I am certain of there are many.  Well, that’s for me to obsess over.  How bouts’ you obsess over some of these photos.  This is what knowing and loving and doing look like:

crowd scene
So many people!
Mother-Daughter shavees
Husband-Wife shavees all the way from Michigan.
Our youngest shavees — so brave!
PAL Studio
Our “PALS” from Performing Arts Limited
Dr. Lulla
Dr. Lulla talks about the realities of pediatric cancer.
Ellen shaving with a brew. Thumbs up, girl!
Flash Mob
Firework flash mob!
Dollars and Hair
Taking it all off for a few bucks!
Joining the bone marrow donor national registry is easy!
Bald Beauties
Look at our bald beauties. Lovely ladies.
Shavin' Shelleys
The Shavin’ Shelleys from Georgia! They are peachy!
Audience shot
What you see when you’re being shaved.
Deb triumphs
Deb wins the prize for distance travel — came from California to shave!
Blogger Royalty
The Blogger Brigade!

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