Pediatric Cancer – Page 6

March 10, 2015

Donna Day 2015: Another Day, Another Child, Another Dollar

Today is Donna Day — it’s the fourth annual Donna Day, actually. Donna Day is a made up thing, really, but then again, what special day isn’t? At one point, Valentine’s Day was just February 14 and Mother’s Day was one gal’s idea to honor her own mother who had just died. So, yes, Donna Day — it’s real to me and I will champion it as long as folks will indulge me.

But this year feels different somehow. Donna Day, in a very real sense, is no longer about Donna, just as Mother’s Day is no longer about Ann Maria Reeves Jarvis from Grafton, West Virginia. That is both sad, I think, but necessary, too.

Long story short, Donna Day was created as a blogging campaign to raise funds for the St. Baldrick’s shaving event created by a gal who was so inspired after reading Donna’s Cancer Story that she felt the need to do something. $290,609 later, I would say we’ve been pretty successful. But our work is not done.

In late October last year, I had a message from a friend I had met through blogging (where I seem to meet so many amazing people). We live in the same Chicago neighborhood and had both performed in the 2013 Listen To Your Mother live lit event. I liked her. A lot. She was sweet and warm and open and completely lacked pretension. She was also wicked funny and made me laugh.

She was thinking about cutting her hair short and donating to a good cause, could I recommend a reputable program? This gal has an amazing mane. Like, amazing amazing — thick, wavy, what might be described as a horse tail. Any person to wear a wig from her head of hair will be profoundly lucky.

The conversation looked a lot like this:

Friend: I had a question I thought you may have the answer to – what is the best organization for donating one’s hair to be made into wigs for cancer patients? I am looking to shear it shorter for a great cause!

Me: Cool! I think Pantene has a recommended program, but let me check. Also, if you want to raise some $ for kids with cancer, you can wait until our March St. Baldrick’s event. Also, I am shameless.

October turned into November and before you know it, winter had descended. BOOM. This winter will go down in history as one of my worst ever. An endless series of hospital visits with my Dad, anxiety, fear, sadness, bad news after bad news. Yuck. Screw you, winter.

My friend reached out to me in January and that conversation looked a lot like this:

Friend: Question – I have yet to cut my locks because it got cold and I liked the insulation. I don’t know if I am up for shaving completely, but could I raise funds by waiting and chopping it off on the 28th [our St. Baldrick’s event]?

Me: So, YES, you can absolutely set up a fundraising page to cut rather than shave. We have had a few folks do that. Only caveat is that the shavers (licensed beauticians) will chop, but not cut or style your hair, so it would require a trip to your usual place of beauty. Make sense? I WOULD LOVE TO HAVE YOU ON BOARD!

Friend: Got it! An earlier slot would be great. Thanks!!!

And then, just four days later, this arrived in my inbox:

Friend: Um, could you please call me ASAP. I am at XXXXXX and just got word that my daughter has a mass in her brain. I could really use your support and knowledge.

Fuck you, cancer. Seriously. Fuck you.

Before I called my friend, I wept some tears. I wept for her daughter, I wept for my friend, I wept for Donna, and I wept for the loss of innocence and naivete this family had just experienced without even knowing it. When cancer strikes your child, you are changed, forever, regardless of outcome.

You learn, on a deep and cellular level, that life is not guaranteed. Control and safety and normalcy are illusions that parents hold close to get through their days. We need to. I get it. But my family, and now my friend’s family, has been robbed of the unconscious security of “this doesn’t happen to me.” Because it does, and it just did.

Again, I say, fuck you, cancer.

St. Baldrick’s informs us that a child will be diagnosed with cancer every three minutes. On that cold night in January, that child was my friend’s daughter.

Most of you who are reading this right now will not have a child with cancer, but some of you will. And those of you whose children are healthy, the truth is that they might not be tomorrow or the next day. That sounds like fear mongering, but it’s not. It is truth and that is why I work so hard to support the important work of St. Baldrick’s, the number one private funder of pediatric cancer research in America.

I started this post with my sense that Donna Day is less about Donna every year. That is a tough pill for this grieving mother to swallow, another harsh truth, but as time passes, it is harder and harder for me to ignore. My beautiful Donna died of cancer, but just in the time that I wrote these words, 20 children around the world were diagnosed themselves. Most of them (in America) will survive, yes, but they will be marked in a thousand different ways and live a life where cancer’s shadow will hang over them indefinitely.

Time moves forward, change is constant. This year I know, I feel it in my gut, that Donna Day is now and needs to be Edgar Day and Mia Day and Sophia Day and Rosie Day and Drew Day and Gregory Day and Jeremy Day and Lucy Day Nick Day and Sam Day and Brendan Day and Daniella Day and Kyler Day and Jenna Day and Abby Day and Insert Child’s Name With Cancer Here Day.

Please consider honoring Donna, the seed for this important cause, and all that she has done to inspire Good Things by making a donation to our St. Baldrick’s event. We need you and we need your generosity and we need your caring and we need your compassion, and yes, to put it as basely as possible, we need your dollars. $5, $10, $20, $100 — we are not picky, we like all the dollars! You can donate HERE.

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January 4, 2015

Cancer is Not About Winning or Losing, So Let’s Change the Narrative Already

Throughout the day, anytime I dipped into a few minutes of the Book of Face, I saw status posts and articles about an ESPN anchor, Stuart Scott, who, at 49, had just died of cancer. I had never heard of Stuart Scott before this morning, but now, twelve hours later, he is one of my heroes.

People all over the media are reacting to a few choice words Mr. Scott had about cancer at last summer’s ESPY Awards. “When you die, it does not mean that you lose to cancer.”

Amen. Preach. Can I get a witness?

Those words were spoken by a man who described himself as “battling” cancer. Here he was, on stage, accepting a prestigious award that he himself acknowledged he didn’t feel worthy of receiving. This man is fit. Handsome. I mean handsome. Determined. Articulate. Focused. Inspiring and inspired. Everything about him shouts vitality. He appears healthy, at the top of his game. And yet, cancer. He was living with and dying of cancer, even if it didn’t look that way.

There is no shame in that. There is no shame in dying of cancer.

One does not “lose a battle” with cancer. Fuck that noise. The mere idea of it is insulting and dismissive and diminishing to every single person who lives and dies of cancer, and yet this is the preferred verbiage we as a culture have somehow agreed best describes whether an individual, man or woman, adult or child, survives their cancer diagnosis. Again I say, fuck that noise.

It makes my skin crawl every time I see it or hear it, and having been a part of the cancer community since 2004, I see it and hear it way too damn much. I’ve written about the subject before, gotten in Facebook tussles over it with friends I greatly admire and respect, and even sent letters to reporters asking them to rethink their language, knowing and believing that words really do matter.

If some people “win” their battle with cancer, if some folks “beat” cancer, it stands to reason that some people “lose” their battle with cancer. Where there are winners, there must also be losers, following that logic. And that is the concept I reject. People unlucky enough to die of their cancer diagnosis are not losers.

Stuart Scott went on in his speech to say: “You beat cancer by how you live, while you live, and in the manner in which you live.”

That is some profound wisdom right there and could apply to most anything in life. We all “beat” challenges XY or Z that are assigned to us in life by how we approach those challenges, how we cope with those challenges, and how we proceed in our life amidst those challenges. This is true of cancer or whatever that challenge might be.

Two of the people I have loved most dearly on this earth have died of brain cancer. My mother and my daughter, my Donnas. Neither of them lost their battle with cancer. When my daughter initially responded so positively to the hardcore chemotherapy regimen she endured, she was not more of a winner than she was when her cancer fate turned and she became terminal. When my mother had the misfortune of having the tumor in her head (the one no one knew existed) bleed out as she played a slot machine in Biloxi, Mississippi, she did not become a loser, and there is nothing, not a damn thing, she could have done to “beat” her cancer diagnosis.

If two children are diagnosed with cancer on the same day, one with leukemia that has a 90% cure rate and one with DIPG that has a 100% mortality rate, the surviving child is not a winner, just as the child who dies is not a loser. That child who survives her diagnosis did not “beat” her cancer, so much as survive her cancer. The nuance there is crucial to understand. Both children, no doubt, would have tried to cope with the brutal treatments they endured in the name of cure and both children, no doubt, demonstrated bravery and strength throughout their treatments.

Stuart Scott detailed this brilliantly in his ESPY Award speech. Rather than romanticize his cancer “battle,” Mr. Scott shared details about how tough cancer treatment is. How long hospital stays can be. Tubes and wires popping in and out of every part of his body. The fatigue. The inability to fight some days. The dependence on others. The inability to plan. The tears that come, even when you’re a 49 year old national TV sports anchor.

I honestly think I fell in love with him watching his seven minute acceptance speech.

Many, many, many people die of cancer. They are not “lost” to cancer and their dying does not make them “losers” who “gave up.” They are people who have experienced the misfortune of receiving a cancer diagnosis that was not responsive to treatment. As heartbreakingly simple as that.

I applaud Stuart Scott for the bravery he displayed in just speaking the truth — not his truth, but the truth. People in cancer treatment, no matter the age or diagnosis, are faced with incredible challenges and the vast majority of them face those challenges — the pain, the illness, the fear, the isolation, the loss of income and security and autonomy — the best way they can.

Surviving a cancer diagnosis is not just about being strong or maintaining a positive attitude. Surviving a cancer diagnosis is about having errant cancer cells that respond to treatment, whatever that treatment may be. One’s approach to that treatment, no doubt, can have an impact on how the treatment is experienced, but cancer, its treatment, and the emotional and physical space it requires, is often hard, brutal, relentless at times, and, yes, not everyone will survive it.

But that has nothing to do with winning or losing. So let’s stop suggesting it does.

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HEY! Do you want to do something about cancer? Do you want to help children with cancer? SAY YES, WHY YES I DO! If so, please click HERE to register as a shavee for the fourth annual Donna’s Good Things shave event for St. Baldrick’s on March 28, 2015 at the Candlelite in Chicago, or if you’re not in a position to shave, please consider a donation — every dollar counts!

October 24, 2014

Lucy, No Longer in Pain

Today’s post is from a fellow Cancer Mom whose daughter died last month. Her daughter’s story was sent to me with the hopes that others would read it, that more people would come to know her daughter and the bravery and fear and loss that come out of pediatric cancer.

By Vashni Nilon

It all started innocently enough. My sixth grader, Lucy, came home with a headache. We had just spent the weekend away at my cousin’s wedding and she didn’t get much sleep, so I didn’t think anything of it. Next day she appeared a bit better but then threw up a little on the bus. I took her to the pediatrician. She felt that it was a roto virus and should clear up in a few days.

The one odd thing Lucy said was she could not read. The pediatrician gave her a neurological exam which checked out and sent us home. By Saturday she was still in pain and clammy and by Sunday she was at the ER. They tried some pain killers and ran some tests but nothing was working. One pediatrician who really seemed to not like children at all told me it was probably a tension headache. Next morning, just as a precaution, they gave her an MRI. This was when the shit hit the fan.

They discovered a mass and the edema around the mass was pushing her brain off the midline. IV steroids were administered and she was transported by the biggest, fanciest ambulance I have ever seen to Children’s Hospital of Philadelphia. There was a pediatric neurologist on board. This was beyond serious. Surgery was scheduled and one terribly attractive young doctor after another came to give her neuro checks, and prepare her for upcoming brain surgery. She was having none of it. She refused to be okay with brain surgery. My poor child who had nothing more serious than a cold was hooked up to machines, monitors and I couldn’t even get to her to kiss her. Taking her to the bathroom was an ordeal as we had to drag half the equipment in the hospital with her.

Somehow we survived the surgery (and the surgeon) Somehow I got my precious girl back home. In retrospect, this was the best part of the last two years. Lucy was no longer in pain. We got to snuggle all day and watch bad television and we were blissfully unaware of the long road ahead.

As it turned out, the tumor that set up residence in Lucy’s brain was one of the most malignant, deadly tumors know to medical science. The overall survival rate is less than 10%. But we had great surgery and she was young, so we went for it. I remember our oncologist saying “We have one chance to beat this,” like we were in a spaceship and not standing in a non-descript medical office.

Basically, this tumor would need high dose radiation and lots of chemotherapy. Like all the kids you read about, Lucy did it. She strapped on the mask and got bolted to a table for 6 weeks, she took the pills, she endured the poison. We had 18 months of clean scans, of good news. Lucy managed to make the honor roll, she was in the school play, she went to bar and bat mitzvahs, she hung out with friends. There were trips to Disneyworld, The American Girl Store and DC cupcakes. She lost too much weight, had a feeding tube put in, then gained weight and had it removed.

At the 18 month mark, right after she finished treatment, Lucy had an MRI that looked questionable. It was then that her oncologist told us that if the cancer was back, Lucy would die. Just like that. No maybe we should try this, or this might be an option. Just death. Then he sent us home for three weeks to see if she would grow a tumor. Lucy was so stressed out and in so much pain that she ended up in the hospital. Nothing was helping.

She didn’t want to die. She wanted to grow up!!!! We were sent home with so many drugs and too much time. We went on a Disney Cruise and she talked about death, and about all the things that she would miss. It was beyond heartbreaking. Then, miraculously, the MRI showed no growth. Then a PET scan showed no growth. Lucy finished seventh grade and started summer camp. Life was so good.

Less than two months later Lucy called me at work screaming, “Something’s wrong! My head!” I told her to get her Dad. Right after that she lost the ability to speak. Her Dad got her to the hospital. I drove separately – screaming and crying and on the shoulder as the rush hour traffic was horrible. When I got there she was intubated in a room with too many people. The social worker was a wreck. An extensive MRI study revealed that the cancer was back. Not only in the original site, but in the opposite hemisphere, in the fluid around the brain and the brainstem. It was 3 days before her 13th birthday. The news was delivered by a 27 year old. She was given two months to live.

We tried to live.

We went on another cruise, to the beach, we did all the things she liked to do. But she knew something was terribly wrong. We had to tell her, so when her best days were behind her, Lucy was told she was going to die. Everyday she begged us to help her. All she wanted was to be a normal kid. All she wanted was to grow up. She grieved her life. She lost the ability to read, to walk, and eventually, to talk. She gained a huge amount of weight from the steroids. She took a ridiculous amount of drugs. Lucy wanted more than anything to go to school. So we went to Staples and I wheeled her around while she picked out her supplies. She put her backpack together, she carefully placed her school ID in the proper pocket. We went shopping for clothes and makeup, she got a haircut. And she went. Just for a class or two a day but she went. I sat outside her classrooms and I cried. Cried for the brave kid she was and cried for the spectacular woman she would have become. Her art teacher was amazing, She had art and then lunch with her friends in the art room. We went to the beach for two days and New York to see her Aunt. Everyday she woke up and said “I hate this.”

Everyday something was taken from her. She loved to read, to sing, to laugh, to smile. No more. Then one day she couldn’t get out of bed, she couldn’t eat. We carried her into the bathroom and bathed her for the last time. She had suffered so much emotionally and now the physical pain was starting. Lucy’s last words were “Mommy,” “Help Me,” and “Dying.”

The morning Lucy died, I looked in her eyes and said it was okay for her to let go. She nodded like hurry the hell up and HELP ME!!! I started screaming for more morphine. Her jaw locked, she turned blue, her breathing was labored.

This was my sweet child. My child who laughed and sang her way through life. My kind, joyous and lovely child was suffering more than any murderer on death row. And then she died. Exactly two months after the seizure. Five months after she finished treatment. There were no options for her.

This is pediatric cancer.

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This post was sent to me without a title. I chose “Lucy, No Longer in Pain” as it was a direct pull from the words her mother wrote above, but also because I think with grief folks need the reminder that while Lucy may no longer be in pain, all those who love her (and not loved, past tense, because the love never stops — it is active, a verb, ongoing, even with Lucy no longer here to receive it) are right now experiencing the deepest pain they will ever feel. Please keep them in your thoughts.

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