childhood cancer awareness

Thank you, Jimmy!

Thank you for taking the time to invite our friend #SuperMax to be on your show. I met Max and his Momma Audra in 2012. Audra and I are part of the 46 Mommas. We’re moms to kids with cancer, shaving our heads to raise money and awareness for the St. Baldrick’s Foundation. As I am sure you know from meeting them, Max and his family are forces of nature. They are not like other people. They DO things to make others better. They DO things to make the world better. They have ideas and then they make them happen.

Children with cancer go through so much. Too much. And Max has been through more than most. Our children endure so much that most of the popular media has turned a blind eye to them. I don’t understand why children getting cancer is not newsworthy. I don’t understand why our children dying from cancer is not newsworthy. It’s not though.

But you wearing a rainbow #SuitoftheLoom and then auctioning it off for charity has gone viral. Thank you for doing this. Maybe it was for ratings. Maybe you needed the publicity to make yourself feel better. I don’t know. I don’t care. I care that you did it and now the world is watching.

I bet that after meeting Max and his family, you are feeling some things: Awe. Amazement. Wonder. Gratitude. Disbelief. I keep watching this clip of you and Max. I see you getting choked up. I am moved by watching you be moved by this small, brave, strong, kind boy. Please don’t stop. Please continue to be moved by him. Please don’t turn away.

Please lean in to those feelings and keep supporting him and the 1,000s of kids like him. 1,000s. Children with cancer need people to stand up for them and be their voice. To raise awareness and desperately needed money for research. You are doing a good thing. People are watching. And many #childhoodcancer parents like me are grateful.

Love from your new fan,

Monica

Keep your heart center open

Most of the time I want to post snark. Snark about students, work, the weather, other drivers…always about others.

I didn’t realize this until today at yoga.

During triangle pose Hannah said, “twist up and keep your neck soft. Keep your heart center open.”

And a voice inside me said, “to myself.” Keep my heart open to myself.

In a heart to heart (ha! No pun intended.) that my mom and I had right after L finished treatment and I graduated in 2010, she said that the hardest part of my moving on would be tolerating others who have not experienced the trauma that we have. That the moving on for me would be marked by moments of exasperation and frustration and impatience. Funny how mothers know us and can get to our very core quicker than any other. I am fortunate that these words were said to me with love and empathy. But, they were still hard to hear, mostly because they are true.

Impatient. That is how I feel most days. Even now, 4 years later. Impatient. Why was that truck parked at the gas station (it’s a gas pump not a parking spot), while the engine idled (duh! gas!), and the driver chuckled on his cell phone? Why is he in my way? Why is he blocking my way to the pump? Doesn’t he know I am already late? Doesn’t he know that I have been through more than him? Doesn’t he know that my son and our family have been through a lifetime of fear and agony and so the rest of life should be smooth sailing?

I thought all of those things in the span of ten seconds this morning, all before 8:15am. That’s a lot of thinking and a lot of brutal self-awareness. I so desperately want to move on from our experience with cancer. Yet at the same time, I wear our experience with cancer like a badge of honor, trying to be an advocate and drum up awareness. I use it like an angry megaphone, when maybe a quieter instrument would be more effective.

In the deepest, truest parts of my soul, I know that there is still healing I need to do. I need to forgive myself for not seeing L’s cancer sooner. Maybe if I had looked harder I would have seen it sooner.

I need to forgive my friend who betrayed me when I needed her the most. I need to forgive myself. Long before she betrayed me, I saw things in her that made me uneasy. I chose to ignore them. I shouldn’t have.

Many of the things that are frustrating me about others, are really things that are unresolved in me. The thing with trauma is that it takes your locus of control and flips it upside down, backwards, and sideways. In childhood cancer world, there is not control. You are a slave to the protocol and absolute neutrophil counts (ANC). We spent 15 months rudderless and hyper-paranoid. It’s exhausting. The re-entry into a world where I do have control (in theory) has been long. It has been arduous work that I underestimated.

I can’t go home again. I am not the same and neither is home.

Today in yoga, a voice told me that my snark is about me and not anyone else. Today in yoga, a voice told me that I need to keep my heart center open- to myself.

Big enough dreams: Part 2

“Be careful what you wish for, because you just might get it.”

Well, I got what I wished for…I was accepted to the Listen to Your Mother Metro Detroit show! You can see the official cast announcement here.

Holy buckets! I am so nervous I might barf. I am so excited I can’t sit still. It is an honor to be chosen from among the almost 50 women who auditioned. It is a great privilege to be able to share our journey through #childhoodcancer and how it has influenced how I think of myself as a mother.

When I told S the good news, I said “I think I am becoming a writer.” He said, “You have always been a writer. Now, you are writing.”

Gulp.

Thanks for nothing, White House.

Maya always tells it like it is. This is no exception.

Rockstar Ronan

Ronan. When I’m not writing to you on the blog, I feel like a bad mom to you. I’m hard on myself and, fuck, I just plain miss this. I cannot keep up with everything that is going on, and life seems to be running at an outrageous speed. So much has happened and so much is going on that I don’t even know what to address first.

First things first, Ronan. I am so overwhelmed with every aspect of my life right now that I feel like a breakdown might be in order, just because I fucking deserve one. I keep telling myself I have to get through September first, but I truly don’t know if I can wait that long.

So where to start? The most important thing, of course — the thing that has been consuming me. It started with that phone call from your Mr. Sparkly…

View original post 1,040 more words

Dear Mr. President

I made the mistake of opening this email while I was sitting in a restaurant with my two boys. On vacation. For the last weekend of the summer before they both go to school. I should have waited. I should not have opened this email. Because, Mr. President, the anger, disgust, and disappointment that I feel at this moment are beyond words.

I guess on some level I should be thrilled that you took the time to direct someone in your office to draft a standard kiss off email to all us childhood cancer parents. The grammar is correct and the language is very…political. And, hey, I got a message from the White House! But, unfortunately for me and my son and the THOUSANDS of children like him, the message that we got LOUD and CLEAR from you and your administration is that YOU. DON’T. CARE.

To add insult to injury, your message uses the very statistics that we are railing against. Mr. President, the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, well then, I think we need to redefine “progress.” And had YOU, not your staff, taken some TIME to read our petition and really listen to the parents who are pleading with you, you would have known better.

And the icing on the cake… you throw in your Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like my son. And, I am paying quite heavily for the health insurance and medical care that saved his life. However, that is not the point. This was NOT the time nor the place to advance your politics. This was your chance to listen. To be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos.

What is also disheartening to me is that I am sure you already have the pink light bulbs that you need to illuminate your tax payer supported home in October. Because, you know, boobs matter more than kids. I have boobs. Nice ones. I will most likely get breast cancer. There is a link between my son’s diagnosis and my chances of getting diagnosed. And guess what. I would gladly go under the knife and lose them both if it meant that more money would go to the kids.

I think what upsets me most is that you are a parent. Your girls are smart, funny, beautiful, and well cared for. You would do anything for them. So, why not stand up and speak out for them and their friends? That is what we are asking. That you make a statement, that you take a stand.

Mr. President, I am disappointed to the point of tears. Good thing your time in office is almost over. Not only did you lose my respect, but you lost my vote as well.

And, no, I won’t be “staying connected” with you.

The White House

Fighting Pediatric Cancer

By Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public Engagement

Thank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.

President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.

President Obama with Jack Hoffman

President Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)

But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.

That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.

We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.

In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more at HealthCare.gov.

So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.

Tell us what you think about this response and We the People.

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

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Seeing gold

I follow Glennon Melton on Twitter. A dear friend of mine introduced me to her blog, Momastery. For the most part, I like her stuff. She is funny, honest, and like the rest of us working to be the best mom she can and doing it in a positive way. I like that. I am also trying to do those things and spend less time in the negative judgey place that leads nowhere good. Today is not one of those days.

A guest blogger on the Momastery site wrote about her son’s autism diagnosis and how it has impacted their family. http://momastery.com/blog/2013/06/20/not-your-typical-mom/

There are many parts of this post that resonate with me. The devastation of a diagnosis that seemed to come from nowhere; the challenge of learning a new language of medical terms and treatments; long-term prognosis; impact on her marriage; caring for a younger sibling. The list goes on and on. I get it. I have been there.

And then, I read this: “I had irrational thoughts. I remember thinking- I wish Greyson had cancer, then there would at least be the possibility that it could go away.” Emphasis hers. And now I am seeing red. I am absolutely seething right now. The Momma bear is out in full force.

My post is not about this woman in particular. I don’t know her or her family. And this post is not about Momastery. I admire Glennon and her work.

My anger stems from the complete lack of awareness and understanding about cancer in children and how far we still have to go. Clearly this blogger knows nothing about childhood cancer. How prevalent it is- It could have been either of her sons or one of their buddies. How dangerous it is- 80% of our kids are STAGE 3 or 4 at diagnosis, thus greatly reducing their long-term chances of survival. How long and draining treatments are- YEARS. How OLD the medicine is and how lacking the technology really is for kids- developed over 30 years ago, for use in adult patients. How much money really goes to the kids- 4% of the NCI’s total budget. Mere pennies when compared to adult cancers. RAWR.

And, that’s the rub. This woman is doing all that she can to get her son all that he needs. She is coping. She has irrational thoughts. I get it. Been there. I remember at the very beginning wishing that our son had been diagnosed with leukemia because I thought (at the time), that that was the “good cancer” to get. Talk about irrational thoughts.

What is dangerous about this woman’s post is the complete ignorance it displays and the number of people it will reach who will blindly gloss over her words about childhood cancer and focus on the part about “the possibility that it could go away.” Some people will read her words and not even see that part. For most people, cancer is treatable. It is something that adults get as a result of their unhealthy lifestyle choices, smoking, or genetic risks. And as a result of the pervasive pink-washing (and soon to be public service announcements about men & their prostates) most people also believe that we are making progress against cancer.

Unfortunately families who have been devastated by a childhood cancer diagnosis know different. We rarely have “the possibility that it could go away.” Instead, we live with the reality that it could come back. It could come back worse than before. If it does, the chances of survival are even less than they were the first time. Instead, we live with the possibility of a secondary, new cancer which could have been caused by the very treatments that were used to save our babies the first time. And for some families, their child’s cancer never went away. It stole their children and they died.

I am frustrated because there are people out there, there are mothers out there, who still believe that their children are untouchable. And even worse, there are still mothers out there who believe that even if it did happen to their child, that it could just go away. Like they can take a pill, or cut off boobs (kids don’t even have boobs), or remove moles that look suspicious and then your kid will be cancer-free.

Mostly, I am frustrated with the childhood cancer community. Yes, good things are happening and there is awareness out there that didn’t exist before. I am thrilled for that. I was part of making it happen. But, I am realizing just how far we really have to go. And, that within the childhood cancer community, we need a stronger, more pervasive message that isn’t about anger or fear (ironic given the anger of this post!). We need to find a way to speak with words that will be heard. I am still searching for them. I won’t stop. I hope, I pray, I wish, I dream that others will be touched by our experiences and join us.

Going to re-focus the rest of today and see GOLD (not red ;))

Sick of all this cancer?

Nicole Scobie blogs about her adventures in “Cancerland and Switzerland.” This most recent post is spot on. Please take a few moments to watch Erin (who is battling DIPG) and then read Nicole’s post about Erin’s mom Amanda and the reaction of her “friends.”

Kids with cancer need your financial support. They need research for them. They need all of us to teach our children about friendship, love, caring for those who are injured or sick, and loyalty.

Parents of children with cancer need your compassion, empathy, and listening ear, not your pity.

Blank Pages

It is always surprising to me how the various areas of my life converge. Not surprised in a “Oh my gosh, how did THAT ever happen?” way but, more of a sheepish, “I shouldn’t be surprised, because of course that is how life is!” way. Lately, I have been wanting to write more. Professionally about my dissertation research and my own journey as a mid-career mom. I have also been wanting to write about our journey through childhood cancer and how it is has impacted our marriage, our family, our faith, and our future.

Yet, excuses always stop me.

I don’t have time (not true).

Who am I to pretend to know about these things (well, I am someone who has lived them).

No one wants to hear what I have to say (if true, who cares?)

Two things recently happened within weeks of each other that have finally pushed me to sit here and write.

First, I was invited (thank you godesses!) to a meeting about how to write for publication. In that meeting, the Dean of my college asked me, “so Monica, when are you going to publish your dissertation?” Later in that meeting a colleague whom I deeply respect and admire said about her own research, “well, it’s not research if it’s not disseminated. I owe it to my participants.”

Gut check.

Isn’t this why I landed on my own topic as well? To learn something from my amazing participants and then, have the profession learn from their experiences as well?

Second, a young cancer warrior named Zach Sobiech died on Monday morning. Many people the world over know Zach because of his beautiful, soulful song, “Clouds.” We “know” Zach because he is a student in my sister-in-law’s youth group in Stillwater, MN. I am friends with his mom on Facebook and have occasionally written to each other as the moms of cancer warrior sons. Laura has documented Zach’s journey on his Caringbridge site. Her words, Zach’s life are awe-some, in the truest sense of that word. Laura recently wrote:

“Blank pages can be very frustrating and intimidating. Where do I start? What words do I settle on this blank page when there are so many words clattering around in my head? Sometimes it’s just easier to walk away and leave it blank. But, it’s our story. It’s Zach’s story. And I need to reign in these words and lay them out for today and for tomorrow.”

Gut check 2.

So, with that, no more blank pages on this blog that I started almost 2 years ago. I now have 2 goals for Summer 2013:

1. End the summer with a submittable journal article about my dissertation research. Submit to peer reviewed journal by August 31, 2013.

2. Blog, about whatever I want/feel, once a week.

The ten amazing women who were participants in my dissertation research have a story. I should help them tell it. I have a story. My son has a story. Maybe he will want to have these words to go back to someday. Maybe not. That’s okay. Either way, I have a voice. I want to write. I am going to try harder to do more of it. I appreciate your cheering along the way. Thank you.

Playing hooky with my friends

3 #ReverbBroad posts for the price of one!

June 11
If you were to play hooky from work today, what would you do instead?
Krissy

I would actually need at least four days to play hooky. One day to drive to New Jersey to pick up my sisters (my first best friends). Two days to spend at the beach, while “down the shore.” One day to drive back to reality.

While at the beach, I would sleep, read, and eat myself into oblivion. After a day of “sunbathing” (with full-on sunscreen and a huge hat, because now I know better!), we would eat seafood and drink ice-cold beer. Then, we would stroll up and down the boardwalk. I would not care that the sea air was making my hair too curly. I would eat a Kohr Brother’s orange & vanilla soft-serve custard, on a cake cone with rainbow sprinkles. I would fall asleep with a smile on my face, while the ocean lulled me into a deep, dreamless sleep.

June 15
Who was your first best friend?
Kristen

I always struggle with questions that force me to quantify or label things. First, best, favorite…I am not a fan of absolutes. But, this absolute question was actually easy. I am fortunate to have two amazing younger sisters whom I also count on as my best friends. It was not always this way, I am sure. Of course we fought, and teased, and were mean. That is what sisters do. But, under all of that sibling stuff, there has always been genuine love and affection for each other. We have always cheered for one another. We have supported each other through break-ups (“Of course he is a jerk! Let’s burn all the stuff he ever gave you!” True story.) We stood up for each other at weddings (nice bridesmaids’ dresses) and have consoled and counseled each other through motherhood, breastfeeding, work-life negotiation, and suburbia. My mother was right, “there is nothing like a sister.”

June 17
What three things do you want more of in your life? What three things do you want less of?
Krissy

1. Friends. I had no idea that this time in my life would be so isolating. I have friends. My sisters. A few from high school. A few from college. One from graduate school. One from my year as a Holy Cross Associate (Americorps Volunteer). One from my first job. But, all of these people are far away. Across the country far away. I am slowly meeting people at work and at my sons’ school. But, I would not necessarily call these current people friends. I have a lot of acquaintances. I have a lot of women in loose circles whom I respect and admire. I have a lot of people that I would really like to get to know better. I have a mentor (thank GOD for her!). But right now, I would really love a soul-sister. A fellow girlfriend I can go walking with, get my nails done with, have drinks with, call up and vent about my day with. This type of friendship is hard to come by and takes time to nurture and develop.

2. Exercise. The mental and physical benefits of this are self-explanatory.

3. Organization/Motivation. Confession: I am not exactly sure what I am doing with my time these days. I feel busy all the time. Distracted. Yet, very little seems to be getting done. There is always laundry to fold, dishes to wash, toilets to scrub, a garden (first one ever) to weed and water, maternity clothes to donate, on and on and on. I don’t want to fall into whining (too late?) so I will stop here. I would love to be organized and motivated.

Less

1. Childhood cancer.

2. Childhood cancer.

3. Childhood cancer.

Finding a partner you can move on “with,” not from

June 12
What was the best decision you ever made?
Niki

The best decision I ever made was to have a “relationship defining talk” with a co-worker whom I thought I was starting to have feelings for.

I had no idea that when I took my first “real” student affairs job in 1999 that it would lead me to my best friend. I had never even heard of Hope College or Holland, MI. Heck, back then, I am not really sure I could have correctly placed Michigan on a map. But, I got heavily recruited at a professional conference, interviewed, got the job, etc. etc. Second year into the position, one of my co-workers and my only friend in the entire state of Michigan leaves me! Her leaving set the process in motion to hire another hall director. We interview a bunch of candidates and Sean is one of them. The only thing I remember about his interview was that he had a lot of experience and nice eyes.

We spent almost every day together the first weeks of the semester. RA training, meetings, fire drills, crappy cafeteria food (breakfast, lunch, and dinner), meetings, meetings. You really get to know someone pretty well when you are in all those meetings! Sean is also Catholic, so we went to church together and bonded over being the only Catholic people in tall, white, blonde, Reformed, Dutch, West Michigan.

One weekend I went away to see my sister play soccer. The whole drive back to Holland, I thought about how I needed and wanted to talk to Sean to tell him about it and to tell him I was back safe. Call him up. He was waiting for me to call, too. Huh. We work together. We work together all the time at a really small conservative institution. Huh.

One week later we are driving to a mall (I don’t even remember what for) and I tell him that I think we are flirting with each other. That I think I like him. That I think he likes me, too. But also that I don’t want to read into anything. He turns to me and says, “I like you. Read into that.” Best relationship defining talk ever.

10.5 years later we are still together and have faced some challenging times (see next answer below). There is no one else I want to walk with along the way.

June 10
What was your hardest parenting or partner moment?
Dana

When I first read this, I honestly thought that my answer would be our son’s cancer diagnosis. Devastating. Crushing. Life-altering. However, that has not been the hardest part. For me, the hardest part has been the “moving on” into the world of cancer survivorship and the “off-treatment” life.

Our son is a cancer survivor.

Or, our son is a CANCER survivor.

Or, our son is a cancer SURVIVOR.

The moving-on has been harder than I thought. For me, the off-treatment life has been a constant negotiation of vigilance and paranoia; and whichever one I choose depends on the day. A cough is not a cough. When my son gets a fever or a stomachache, I panic and I must choke the waves back down or I will drown. Sometimes I feel like there is too much cancer in my life. Sometimes I have bouts of “survivor guilt” because our son made it and so many others do not. Other days, I am madder than hell and I don’t feel guilty at all because every child diagnosed should have the chance to survive.

My husband is kind, patient, hard-working, funny, passionate, devoted, loyal, and an optimist. I am some of those things and a slightly pessimistic realist. His focus is truly on the moving on. He believes and acts as if you can move on without forgetting. I know he is right. I know that I can have our experience with the C word shape and mold me, but not define me. I just don’t know how or where to go. Yet.

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