Pediatric Cancer – Page 9

March 28, 2014

Kids Helping Kids: Children Shaving to Support Childhood Cancer

Children shaving their heads and going bald for other children with cancer has made a big splash in the news this past week. Or maybe that’s specific to my newsfeed — that of a mom who lost a child to cancer and who has more than a few friends in the same boat.

A troubling story out of Colorado detailed how a local charter school banned a little girl from attending classes, citing her newly shaved bald head as defying the school’s dress code policy. UGH. Nine year old Kamryn shaved her head in solidarity with her good friend Delaney who is in active cancer treatment and has lost her hair as a result. In the end, the parents appealed the school’s decision, and after a 3-1 vote, Kamryn’s suspension was mooted and she was allowed to return to school. Shame on the lone vote in favor of her remaining suspended.

Then there is third grader Luca from California who organized nineteen of his classmates to shave their heads to raise over $25K for St. Baldrick’s. Luca originally shaved his head two years ago while in the first grade to support his sister who was bald as a result of her cancer treatment. Some of his peeps made fun of him, which, understandably, he found upsetting. Rather than fret, Luca organized so he could help other kids understand that being bald is not so bad.

I love children.

When our daughter Donna was in treatment and without hair as a result, the few times we were able to go out into the world safely (because of her suppressed immune system), there was certain to be stares. Children stared, too, because Donna looked differently from them, but children asked questions. Innocent questions that their parents often were embarrassed by or shooshed. Those questions were always welcomed by me and answered simply and in a way little ones could understand. Donna was taking a special medicine that made her hair fall out. It would grow back.

Donna was young enough at four and had spent enough time without hair that her bald head didn’t bother her as much as it most likely would have if she were even a year or two older.

When our charity, Donna’s Good Things, aligned with St. Baldrick’s three years ago to support their efforts to fund pediatric cancer research, I never really thought too much about children volunteering to shave. That changed the day of our first shave when the daughter of a friend offered her head and most of her classmates came along to cheer her on.

Last year there were two little girls that took my breath away and raised A LOT of money in the process.

This year is no different. We have three little ones on our shavee roster for tomorrow afternoon and I cannot wait to cheer them on and support them.

Jax is a wee little toddler who will receive his very first haircut at the hands of our volunteer barber (thanks Robert Jeffrey Salon!)
Aiden lives in our community and frequents Candlelite Chicago who generously hosts our event. He asked his Mom if he could shave when he saw the signs at the restaurant.
Lucas is the son of blogging friends and has seen both his Mom and Step-dad shave for us. This year he wanted to do it, too.

Come on, now. I mean how can you not be moved by children who choose compassion, kindness, bravery, and generosity? It practically moves me to tears.

I asked Lucas’ Mom, Karin, if he might answer some questions for me and they both happily agreed. The mother-son shaving team is called Everything is Awesome!, which sounds just about right to me. Lucas is seven and, yes, a little worried that he will be teased when he returns to school on Monday. Despite that fear, though, he says, “I really wanted to shave my head because I wanted to raise money for kids with cancer and I wanted to help tons of kids with cancer!” I do, too, Lucas!

Lucas, who has a fine head of dark curls, went on to say, “I have lots of curly hair and I’m shaving it because I don’t really care about my hair. It makes me happy to shave it because I’m raising money. I think it’s important. I’m raising money for kids cancer and the money goes to St. Baldrick’s to help kids with cancer.”

Lucas gets it. He gets it more than those first grade classmates who teased the California boy, and he gets it more than the Colorado school board that literally suspended a nine year old girl shaving to support her friend. Lucas gets it.

The mission of our charity is to both do Good Things in Donna’s name, but also to support others to do Good Things that were inspired by Donna or influenced by learning of her story. Karin and her husband support St. Baldrick’s and have been to all three of our events, raising money and awareness ever since they learned of little Donna through my words. As their children have grown in those three years, they now better know and understand childhood cancer, too.

Lucas wants to help. I want to support him.

As parents or adults, one of the most important things we could ever hope to accomplish in this life is help instill compassion and empathy in the children in our lives. When kids choose kindness, support that. When kids choose love and generosity, support that.

So often I think it is that our children teach us, not the reverse. Donna taught me so very much. She still teaches me, despite her absence. And every year, as March rolls around, I find that the kid volunteer shavees that come on out for us teach me, too.

Lucas knows a lot. I want him to know that I see that and recognize his kind gesture and compassion. I will show him that by making a donation to him and can’t wait to see the smile on his face tomorrow.

I would ask you, too, to support Lucas and our other short shavees. If you click on any of the names above, you will be linked to their individual fundraising pages. Those $3, $5, $7 and $10 donations really add up — and remember, when you are a little one, $3 is a lot of money, hell, $10 is through the roof!

Everything is Awesome, indeed, Lucas! Thank you, sweet boy! And thank you to all the parents who support the kind and loving actions of their children.

February 25, 2014

Donna Day 2014: A Tale of Two Cities

A couple of weeks ago I brought my son and his friend to see the Lego movie on opening weekend. He was stoked and I was reflective.

Imagine that, me being reflective . . .

See, I couldn’t stop thinking about a virtual friend I have, a fellow Cancer Mom, who was generous enough to share her child’s story with us as part of The September Series. My son was happy as a clam, excited to be with a friend on an outing, but also to sit in a crowded theater and enjoy a movie he had been anticipating for months. Months is a long time to wait when you are five years old.

My friend’s child was not so lucky. He would spend the day, the weekend, in a hospital bed in a pediatric cancer unit. No friends, no movie, uncomfortable, and unable to eat.

While I was at the movies, my friend was with her son at the hospital. Their room overlooked the medical heliport. She mentioned it was very busy. Photo courtesy of Chemo and Donuts.

When I wrote Donna’s Cancer Story in 2011 there was a description that has really stuck with me:

Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what’s happening with your treatment. Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates. Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen. Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody. Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer. Some will live in Scarred Acres the rest of their lives.

I have heard from many folks who were struck by that description, as the truth of it resonated with them. All of them were fellow neighbors in Cancerville. If you’ve never lived there, it’s hard to comprehend. I know I certainly didn’t before I moved in.

In 2007, when Donna was in the midst of heavy chemotherapy, we spent a lot of time in the hospital. A lot of time. I added it up once and it well exceeded 150 days. Some of those days I thought I couldn’t stand another moment, I didn’t have the strength, I was beaten and worn, and, at times, bitter and resentful. Donna’s hospital, Children’s Memorial (now Lurie Children’s Hospital of Chicago), was smack dab in the Lincoln Park neighborhood. Groud zero for drunk college kids, 20 somethings on the make, and wealthy families whose children did not have cancer.

It messes with your head when you leave your daughter’s bedside, fear in your thoughts and terror in your heart, just to get a sandwich, and you are surrounded by people who are simply late for a meeting or joining friends for coffee or on a first date. It shakes you and unnerves you and you feel exposed and vulnerable and alone, terribly alone.

The city of Cancerville exists, parallel to Healthy Town. Don’t get me wrong, Healthy Town has its own problems. No place is perfect, no life without its problems. Healthy Town is no exception.

Now, while still a resident of Cancerville (a lifelong resident), day-to-day, I can enjoy some of the privileges of Healthy Town and I work hard to not take that for granted. I can bring my son to the movies, fear only rules some of my days, and the thing that keeps me up at night is missing my daughter, not monitoring her breathing, or administering an around the clock antibiotic, or checking the tubing on her IV that carries her nutrition, or cleaning up a copious amount of vomit.

The reason Donna Day exists, the reason I write about Donna and feature stories of childhood cancer is because that town of Cancerville is full of children and families whose lives are unimaginable to the average person in Healthy Town. It’s population grows by 46 every single school day. Yes, it’s getting crowded up here in Cancerville, cause once you move here, you never leave.

Funding for pediatric cancer research is abyssmal. Roughly 4% of the cancer budget of the National Institutes of Health is devoted to childhood cancers. A new medication, specific to childhood cancer, has not hit the market in over twenty years. Our crazy dysfunctional government actually passed legislation called the Creating Hope Act in 2011 to incentivize pharmaceutical companies to focus much needed resources specific to childhood cancer. Nothing has come of it because there is no money to be made. Not enough children get cancer for it to turn a profit for pharma to invest in, despite it being the number one disease killer of all children in America.

It makes me sick.

Donna Day is one way you can help. Our charity, Donna’s Good Things, has affiliated ourselves with the good people at St. Baldrick’s — the number one private funder of childhood cancer research. Some of Donna’s own doctors have received hefty grants from them. Since this campaign started (originated by a reader just like you), Donna’s Good Things has raised OVER TWO HUNDRED THOUSAND DOLLARS for St. Baldrick’s (hot diggity damn!) thanks in large part to our amazing shavees and to the compassionate bloggers that have championed Donna’s Cancer Story and encouraged their readers to donate.

Blogging works, yo, but it only works if there are readers and sharers and donors, like you. You. This vast Internet is full of some of the cruelest most awful things you can imagine. But it is also full of love and hope and charity and generosity. I see it every day. I am humbled by it more than you can even imagine. I believe in it, which is why I write these words and advocate for research for our children with cancer.

No matter where you live, Cancerville or Healthy Town, you can help. Here is how:

1. DONATE to the Donna’s Good Things shave event for St. Baldrick’s by clicking on the green “donate” button.

2. SHAVE your head at our event on March 29 in Chicago by clicking on the blue “join us” button.

3. BUY a St. Baldrick’s Super Hero t-shirt (just $14.99) for the kid or woman in your life who is your hero by clicking here. All proceeds between now and February 28 will be credited to the Donna’s Good Things campaign.

4. CREATE hope by getting involved with Donna’s Good Things or hosting your own event for St. Baldrick’s under the Donna’s Good Things Campaign.

Thank you. As Donna’s Mama, Donna Day is a holiday for me — a virtual gathering of friends and supporters like you and so many amazing bloggers sharing their platforms to help #conquerkidscancer. There is no turkey or candy or presents, but there is the gift of HOPE for children and families living with cancer, survivors who are marked by their treatment, and those who have yet to be diagnosed.

We need you and are so grateful for you to see us and not look away.

//storify.com/ChicagoNow/please-support-donnaday-with-chicagonow-bloggers/embed //storify.com/ChicagoNow/please-support-donnaday-with-chicagonow-bloggers.js[View the story “Please support #DonnaDay with ChicagoNow bloggers” on Storify]

February 4, 2014

An Invitation to the Cancer Party

Yo, yo, yo! It’s World Cancer Day! And you’re all invited! Woot woot! Are you ready to party?! I hope so, cause this is an invitation you can’t decline.

Maybe your invitation hasn’t arrived yet. No worries, it will. It absolutely will. Maybe you will never get your name on the cancer party envelope, but I guarantee that you will be a plus one at some point in your life. There is no escaping this invitation, as much as you would like to decline. The one bright light is that no one gives a damn what you wear. Oh, and the other party guests are some of the most amazing folks you will ever meet.

This morning I woke up early, about 4:45. No reason, really. When it was clear I wasn’t going back to bed, I dragged myself downstairs, otherwise known as our very local Siberia, and got to sorting laundry. I fired up the old iPad to see what was happening in the land of Facebook and saw it was World Cancer Day.

For me, World Cancer Day was not my invitation to the cancer party. My first time at the ball happened in 2004 when my Mom was diagnosed with GBM (glioblastoma multiform), the most aggressive type of adult brain tumor. GBM is the brain tumor that got Senator Ted Kennedy and Gene Siskel. It’s an aggressive bastard.

I was a plus one for my Mom. She had a lot of plus ones — my Dad, her husband of 46 years, and her four kids, and her three siblings. My Mom was the first of her generation to die. That’s kind of like being the first one kicked off the island on Survivor. It sucks and no one wants that designation.

But there I was this morning, seeing in my feed lots of posts about World Cancer Day. I took a few moments and made this:

Any opportunity I have to acknowledge that I had a daughter who died of cancer, I will do it. It is how I parent Donna now, along with honoring her by doing Good Things for others. I am her mother. No one else will do this. Not her father, not her brothers, not her grandparents. If I don’t do this, no one will, so I do. And it helps. It really does.

So anyways.

I posted my Donna meme and got on with the laundry sorting when my son came downstairs. He was especially lovey dovey, asking to sit in my lap, wanting to be held. He shivered, his forehead was warm. I worried as I held him on the downstairs sofa, the same spot where I rocked Donna in my arms endlessly as she suffered through her months of neutropenic fevers.

I was triggered.

I went upstairs to fetch the thermometer, the same one I used with Donna hundreds of times. Fevers, you see, can be life and death for a cancer patient. They appear when the chemo treatment has eliminated or weakened the immune system. They can be life threatening and are taken very, very seriously. There are entire protocols followed by hospitals about how to treat the neutropenic fever. When you live with a child with cancer, this is internalized in a visceral way.

Mary Tyler Son’s temp was 100. For most folks, this is nothing, a blip. But Mary Tyler Son is not allowed to be most people, because his sister died of a brain tumor. His reality is that he is at a much higher risk of contracting cancer than a child who has not had a sibling with cancer. And this was day 11 of off and on fevers. Eight days earlier, his fever spiked to 105.7 and that was accompanied with intense stomach cramping.

Fevers, check. Abdominal pain, check. These are both common symptoms for childhood leukemia. And, yes, I went there. I can’t not go there because I have spent too much damn time at the cancer party. It doesn’t even freaking matter that he was diagnosed with pneumonia on Saturday, because my boy had a fever and had been grappling with one for eleven days. In my head, he might have leukemia.

And so it went.

Within a matter of about an hour, I had completely convinced myself that it was entirely possible that Mary Tyler Son had leukemia and it was just a matter of time before it was diagnosed. I could picture us living that grueling, brutal life again — the life of a cancer family. I had no idea how we would do it with a baby, but we would, because of course, we would have to — what choice did we have?

I imagined the three years of leukemia treatment, generally about a year longer for boys than girls. I actually hoped for ALL over AML, letters known all too well by the mother of a child who died of cancer. I considered that the boy would be eight when his treatment was finished, our baby three. I considered our youngest growing up in the hospital setting.

I went there, I went deeply there, and I could not stop myself.

As the doctor instructed us last weekend, to call if the fever returned, I did. Sure enough, she wanted to see us and confirmed she would run a CBC — more letters you know the meaning of when you have mothered a child with cancer (complete blood count). That freaked me the hell out, as it just confirmed my own worst fears.

I saw myself in the little exam room with both sons, hearing the devastating news. I would cry, because now I knew what cancer was, but I would collect myself quickly, because I also know a cancer parent needs to be strong for their child. I know too damn much.

Long story short, my son does not have leukemia. His CBC was normal, the differentials were solid, and there were no blasts in his blood. We celebrated at Dunkin Donuts. I cried with relief in the waiting room, but only for a minute.

My invitation to the cancer party, even as a plus one, has resulted in PTSD. I can’t not catastrophize. I am grateful that it has happened only a handful of times in the four years since my daughter died. I know this is something my sons will cope with, so I work hard to breathe and reason and discuss and understand how my trauma might impact them negatively.

This afternoon I reached out to two Facebook friends, both of whom have sons in active treatment for leukemia. They graciously shared with me the symptoms their sons experienced at diagnosis. I read those symptom lists and I was embarrassed and ashamed that I had drawn them into my trauma/drama. My son had nothing remotely like what they described. My son had a confirmed diagnosis of pneumonia and a lingering low grade fever.

Tonight, my son went to bed with that same fever. He vomited this afternoon. A lot of vomit. He will not go to school tomorrow. But his CBC is clear and he has no blasts, so I will sleep soundly. Unless it’s lymphoma, because I haven’t Googled if lymphoma can be detected with a CBC. And I won’t, because I know I shouldn’t.

This party blows. I wish my invitation had gotten lost in the mail.

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