gold is the new pink.

Diddy,

September is nearly over. You know what that means, “Childhood Cancer Awareness” month is drawing to a close. I had big hopes for September this year. My ultimate goal remains that Gold:September will soon be as wide-spread as, and synonymous with Pink:October. For weeks, I have been in the middle of writing a post about all which has been unraveling surrounding my plight, and the plight of some of your favorite PaxLovers (LaLa, Erin, Dan, Meg, Allison, and Matt). Everytime I turn around, it seemed as though a new development has unfolded. In the end, I decided my energy would be better spent trying to make a real difference in this fight than to stop, even for a minute, to document my thoughts about how it shouldn’t be this hard to get people to pay attention to childhood cancer.

There are some special people, in high places,  who are paying attention…and joining our fight. One of the accomplishments I’m most proud of are the many different Proclamations that officially declared September Childhood Cancer Awareness month. Mayor Tom Barrett, City of Milwaukee, lead the way. Without pause – he declared September Childhood Cancer Awareness month in Milwaukee – in your honor. Following Mayor Barrett was Steve Ponto, Mayor of the City of Brookfield and David Ament; Mayor of the City of New Berlin; as well as a personal favorite of mine – Dan Vrakas, County Executive of Waukesha County.  

In less officious forms, several communities actively generated awareness as well. On September 20th, PAX Luminary bags lined the streets of neighborhoods all around the Milwaukee area. There were also several individuals who put a twist on the now infamous ALS Ice Bucket Challenge and chose PAX as their foundation of choice. In fact, close to $1,500 was donated to your foundation throughout the month. The timing couldn’t have been more appropriate. 

Unfortunately, there are some seriously disappointing events which have resulted from my efforts to keep Childhood Cancer Awareness on the forefront of peoples’ minds. These unfortunate occurrences have sent Momma into a tailspin. After much consideration, I refuse – simply refuse to give them any god damn air time – for now. For now, Sweet Boy. But as I always tell you, in time, “…shit always floats to the top”.

One thing I must give air time to is the refusal of the Empire State Building to light up Gold for one night during the month of September. The thousands of requests which have been made by desperate, yet hopeful, parents have been denied for some seriously lame ass reasons. The ESB lights up for pretty much every cause out there, but apparently childhood cancer is not worthy enough to be one of them. One night last week, it was lit green to promote the premiere of the  Teenage Mutant Ninja Turtles movie. Promise.

During your treatment, and nearly every.single.day.since, I felt overcome by the overwhelming notion that you were being experimented on like a lab rat. I don’t understand how you had the biggest team in the history of Oncology at CHW, composed of the smartest people across the land, and no one could come up with an answer….not a single fucking answer. It still burns my soul that your death certificate, which I will never open, but inherently know lists your official cause of death as, ‘undifferentiated sarcoma’.  To those who are lucky enough to remain blissfully unaware of the world of childhood cancer, “undifferentiated” loosely translates to: “We don’t really know what kind of cancer your baby has…and without knowing what we’re treating, we couldn’t identify a protocol to treat him. So he died.”

I refuse to turn the other cheek and accept that more strides haven’t been made in the world of childhood cancer. It didn’t take long to learn that childhood cancer seems to be a dirty little secret that nobody wants to talk about. But, if nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and kids will continue have the same grim outcomes. Until things change, I plan on fighting the only way I know how. The way that you  taught me – by being as spicy as possible.

Through my new network of parents, who belong to the “club” no one wants to be a member of, I started to hear the soft roars of brave parents who are trying to accomplish some of the same things I am – only to be met by one brick wall after another. As the month moved on, these soft roars became louder and louder. Eventually it seemed as if the entire world (at least in my corner of the universe) was entranced by this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all Empire State social media pages. The outrage intensified when they noticed their posts about anything childhood cancer related, started to disappear as well as pictures of their children. It was as if, much like our beloved babies, this “dirty little secret” was expected to die and be buried.

The Empire State Building grossly underestimated the advocates of childhood cancer community. We are not merely promoting a Hollywood film, or a front-runner for a Democratic Convention, and we could give a shit about the release of Mariah Carey’s new CD. We aren’t merely advocates – we are parents. Parents who were forced to watch our child fight for his/her life…while we helplessly stood by and watched them slowly die.  We are parents trying to change a very dark world by giving it a beam of golden light to help ignite this change. We are simply trying to give other kids a chance so they can grow up to do the amazing things that I know you would have done.

I want a face-to-face with the heartless bastard who operates the ESB. I wouldn’t need, nor want much of his time. In fact, I’d simply ask him one question, just one:

“What if it were your child?”

Huh?

What’s that you say?

If it were your child, you would want the best awareness, funding, and treatments possible so you wouldn’t have to kiss your baby’s urn every night instead of tucking him into bed?

That’s what I thought you said.

Jackass.

This slideshow requires JavaScript.

Close those baby blues and sleep tight lil’ one. If you need me, just call my name.

Stay with me, Sweet Boy.

xoox,

Momma

Advertisements

Really, Mr. President? And, maybe Nickelodeon should get cancer.

Diddy,

Today I am filled with anger, disgust and disappointment. I know I am not alone in my reaction to the news far too many moms and dads around the country received today. The news came in an email from a man named Barack Obama. Though I am not naive enough to think he actually took the time to generate the message. My best bet, he took just enough time to direct someone in his office to draft a standard kiss-off to all us childhood cancer parents. It was his attempt at explaining why he vetoed our petition to turn the White House Gold for one day during the month of September.

To add insult to injury, the message used the very statistics we are railing against. Mr. President, and anyone else who still does not have a clue: 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, the only thing that is clear to me is that we have grossly different interpretations of the word “progress.”

The icing on the shit-cake, he/she/whoever wrote the lame ass email was brazen enough to throw in a plug for the Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like you…if, of course, you hadn’t already been killed by CHILDHOOD CANCER. However, that is not the point. This was NOT the time, nor the place, to advance his political agenda. This was his chance to listen. I can’t help but wonder what his stance would be if he and Michelle received the crushing blow that Malia or Sasha had cancer? Would that be enough for him to be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos? What is also disheartening is that pink light bulbs aplenty, needed to illuminate his tax payer supported home in October, have surely been purchased and are sitting in waiting. Because, you know, boobs matter more than kids.

The White House should be GOLD. But more importantly, kids with cancer deserve more funding from our government. How can we make this happen? How much more blood needs to be shed? Are people really not aware or are we just plain being ignored? I am doing my best to help spread the awareness. I feel like childhood cancer is being talked about, everywhere; but I realize that is likely because it’s the world I live in now. The bottom line: We didn’t ask for much, Mr. President. We simply wanted some fucking lightbulbs changed out for one day.

On the heels of Barack’s ballsy move to send the message (loud and clear) that he simply does not care about kids with cancer, The Empire State Building also DENIED our application to light up GOLD for one day in September. It will, however, turn Orange in honor of Nickelodeon on September 16th. Gag. Puke. Poop. (You should be ashamed of yourselves, Empire State Building. But, my guess is you are probably too busy watching Sponge Bob Squarepants to give a shit.)

This is an outrage and beyond insulting. None of this makes sense to me. I simply do not know why more people are not screaming from the rooftops…and/or jumping off of them…over the vast injustices in the plight of being a child with cancer.

tumblr_lqemln8gfw1qzkhmuo1_500_large

That is enough for now, little man. Thank you for loving me even when I am saucy and sassy. Thank you for not giving up on me – despite the fact my efforts to carry on your fight are being met by brick walls and empty promises. (Don’t worry, Momma will never stop fighting your fight or honoring your legacy.) Most of all, thank you for being my son. Even though days like today make it hard for you to realize: you bring my soul more happy than sad and my heart more joy than pain.

Stay with me, sweet boy.

xoox

Momma

two precious, miracle, blue-eyed boys…together forever.

Sweet Boy,

Tonight I am short on words, but not on tears.

When Bradan’s Daddy contacted me with the news of his baby boy’s passing, I was instantaneously transported back to July. I remember those days with such pristine precision, it seems as if it were yesterday: the suffocating grief, the overwhelming fear, and the pure and unrelenting love…which was all around. At the same time, given how drastically life has changed since you left, July feels like it must have been a million years ago.

Upon Bradan’s arrival, I see you reaching out for his hand. I imagine you holding it tightly and assuring him that he need not be afraid. I believe this because even in the ‘highest layer’, I know you are the bravest litte warrior – with the kindest heart, and most inviting smile.

Both of you precious, miracle, baby boys – with eyes as blue as the sky – belong here with your Mommas and Daddies. I have no doubt every angel would agree that children are meant to outlive their parents. Period. Because we cannot be together, I need you to remember this part of our forever-and-ever-pact: hold onto your angel (the one with the biggest wings) until Momma comes for you. Hold onto Bradan and to the other boys and girls who cross your path too. Most of all, please hold onto my love. And always, always know that you are not alone.

Close your beautiful blue eyes and sleep peacefully tonight, my love; Momma is right here.

I love you. I miss you. I hope you are safe.

Stay with me sweet boy.
xoox,
Momma

Stuck.

Diddy,

I am stuck. I am downstairs on the couch, Daddy and Lucas went to bed nearly four hours ago. I am tired; in fact, I am exhausted. Once again, I am stalling the inevitable close to another day. Any sensible person would take one look at me and tell me to ‘go to sleep’. They would likely add some sage advice, such as “…you’ll feel better with a little sleep”, or “you’ll feel better in the morning”. I cannot sleep. And, no, Soothsayer, I won’t feel better in the morning. If you want to know the truth, chances are I will feel worse. For the love of licorice, I am a Bowe; I have never liked mornings. I think I may have a severe allergy to them. (Ask Nana and Papa, they can attest that this has been a life-long condition.)

I have been dreading the entire month of February…since the month of July. Despite my pleas for some omniscient power to freeze time – or better yet, turn back time – the world has continued to rotate on its axis. Without my consent, the sun has persisted to rise and to set. The long days, and even longer nights, have compiled into weeks; and the weeks have have proceeded to roll into months.

Alas, here we are…February 5th. Exactly one week away from your 1st birthday. Given the preoccupation I’ve had regarding next week, one would think I would have found a way to better combat the darkness which now completely engulfs my insides. I now know for certain, that not even kryptonite would prove powerful enough to ward off the grief of childless mother.

In her recently released ballad, Pink has seamlessly managed to compose my love song to you. She has done so far more articulately and beautifully than I would ever be able. That being said, here is your lullaby for tonight. May the lyrics wrap around your heart and the message soothe you into a peaceful slumber. May you know in the deepest part of your soul that although a minute would not nearly be long enough – Momma would give anything to have just one more with you.

I hope you are safe. I hope you are warm. Most of all, I hope you are happy.

Stay with me, sweet boy.

xoox

Momma

There’s nothing lucky about Seven.

Hi Diddy,

Today is the 2nd…which translates to one more month since I last kissed your sweet cheeks, and held your small hands in my own.

Margaret, our very underpaid therapist, continues to work with me on recognizing the fact that “…every day is really just another day”… “don’t allow the numbers, the observed holidays, the celebrations of those (still in your old world) make you believe that any particular day holds more or less meaning than the last – or the next. Margaret has not lost a child. She mostly certainly did not lose her only, beloved, perfect, miracle son. Moreover, she did not lose you. Yet she is one of the most brilliant, insightful, grounded, saucy women I have ever met. So I nod, as I sort of, semi-try to let her words past my mind and into my heart. To date, I remain unsuccessful. The truth is, there are days that are worse than others. Today is one of those days.

This morning, per my usual routine, I forced myself out of bed, walked directly into your room, and laid my grief-stricken forehead on your changing table. I guess this is my new-wave form of prayer. After wiping the left-over tear streaks from my face, I decided it was my motherly duty to try to create a little ‘happy’ in your room – – just in case you’d be able to stop home today. I tied your curtains back, and pulled your blinds half way up. It was particularly sunny and bright outside. The gentle snow falling from the sky made the view outside your window almost surreal. Without any forethought, I began to gather your most special stuffed animals, your cow mirror, and your different-color balls rattle. I methodically arranged them in your changing table. I put Giraffe (not Giraffey – Giraffe) at the helm – where he belongs. And, Sophie was safely placed in the middle, because she is the smallest, and the only girl. I put Owl, from Daddy, at the top – to keep a watchful eye out for any perpetrators. The rest of your guys were put in all the right positions as well. I had a system; it was just right. Diddy, if there is any credence behind the anthropomorphic nature of stuffed animals, as depicted in Toy Story, I am confident your “besties” were relieved to spend today together. I have just decided I will let them have a sleep-over too. I will cover them in your snuggly blanket from Nana. It will be the perfect ending to their not-so-happy day. (And, given the psychological damage my psychosis is bound to be afflicting on them – I’ll take them with us to Margaret next week. Ok? They’ll be fine.)

On an authentically happy note, I got my ring yesterday. Daddy began designing it for me in September. His intent was to have it done by my birthday. But, true to form, Momma completely changed her mind on the design mid-stream of the original project. Your understanding and patient Daddy did not mind (he’s used to Momma); our jeweler, Chris, probably wanted to choke me. I could not be swayed by his inconvenience; it needed to be perfect in every way. Needless to say, the long wait, the countless trips to Racine, the myriad of email exchanges, the uncomfortable requests for Chris to ‘change this’ & ‘refine that’ were all very well worth it. Hands down…Momma’s ring is the most beautiful, special, timeless piece of art I will ever own. Given it is a creative arrangement of your monogrammed initials – I am not surprised. I will not remove it for as long as I live.

Paxton, I would give anything in the whole world to gently kiss you on your warm little head tonight. I would give even more to trade places with you. You should be here today…you should be here tomorrow…you should be happy, healthy, and safe – in your crib – with all of your favorite stuffed animals, having a sleepover.

Like any mother whose child has been murdered, I do not believe my soul can or will rest until justice is served. I need to find a way to get the right people to listen. I need to find a way to get the right people to think differently. I need to find a way to get the right people to unite – and then refuse to be told “no”. Childhood cancer can no longer be allowed to slip past the radar of the ‘eye for an eye’ mentality. Fuck you, Childhood cancer. You have taken one too many shots, you little bitch. You have crossed the path of the wrong Momma. I am coming for you; and I gots a hell of a gold ring to pound right into your ugly, smug face.

I love you, my Peaceful Warrior. You, and you alone, are enough. You will always be enough. You will always be my baby. I will always be your Momma. Thank you, infinitely, for being my son.

seven

Stay with me, sweet boy.

xoox,

Momma

I am on fire; Paxton is my fuel.

It is impossible to measure the impact childhood cancer has on its victims and their families by using statistics. But research funding decisions are often based on numbers. Here are some facts about childhood cancer; if you read these and are not shocked into motion – you can’t possibly be human.

~ Childhood cancer is the number one disease killer in children.
~ Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
~ There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
~ The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
~ 35,000 children are currently receiving (grueling and inhumane) treatment for cancer.
~ The causes of most pediatric cancers remain a mystery and cannot be prevented.

~ IN THE PAST 20 YEARS, ONLY ONE NEW CANCER DRUG HAS BEEN APPROVED FOR PEDIATRIC CANCER! ~

Cancer kills more than 2,500 children in our country every year. In the next 365 days, over 13,500 children will be diagnosed with cancer. I feel these numbers are significant. But, the potential market is simply too small to attract the attention of our private industry. Thus, the role of the taxpayer-funded National Cancer Institute (NCI) is especially critical. While the NCI controls billions of taxpayer dollars, it releases less than 3% of its resources to specifically help children with cancer. (Ironically, some of the most significant advances in the battle on cancer in general have been made by studying childhood cancers.)

I find these statistics to be stunning. I find these statistics to be offensive. I find these statistics to be unacceptable. My sweet boy is anything BUT a statistic.

I’m on a mission today. I am pissed today.

Paxton, you should not be gone. I will find a way to make the statistics surrounding childhood cancer improve. I will insist that we soon live in a world where eradicating childhood cancer from our society tops our politicians’ agendas instead of banter over taxes, guns, and “forbidden” love. I will not be quieted; I will not be intimidated; I will not be ignored. I will see to it that our voices are heard – yours and mine, Diddy. Take my hand, we’ll make it I swear.

1349517769310646

Stay with me, sweet boy.
xoox,
Momma