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.

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

Stay with me, Sweet Boy.

xoox,

Momma

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19 months. today wasn’t gonna be easy…then cancer came back.

Diddy,

Today began much like everyday. I got out of bed, walked down to your room, and began our morning ritual. I whispered the many hopes and dreams I have for you: some old, some new. Each at the forefront of my mind as I face the dawn of yet another day without you. I told you how much I loved and missed you, and explained yet again how I wished a million times over that we could trade places. I shared many other secrets in the spaces in between. All the while searching and scanning the world on the other side of your bedroom window – – just in case today would be the day you’re outside waiting for me to come and rescue you. Then I ambled into the shower, got myself presentable, and set out into the ‘real’ world. (Also known as my ‘fake’ world.) Though I don’t recall the commute, I arrived at BCHS: parked in the spot reserved for me 13-ish years ago, entered the set of doors I’ve pulled on a million times over, navigated the hallways in which I’ve surely worn a pathway, entered my classroom, switched on the lights, landed safely at my desk…and was met by your beautiful face smiling right at me. Then, I exhaled.

I have become very adept at eluding eye contact with the 1300 students which fill the hallways at any given time throughout the school day. I avoid looking too deeply into the eyes of babes who, despite their individual stories and struggles, do not know anything about the dark, grim, gruesome world in which I live. Part of my avoidance comes from sparing myself from the pang which stings my soul when the realization strikes that you will never be in 9th, 10th, 11th or 12th grade, worried about a test, excited about a girl, donned to the nines for prom, decorated as a stud player on the basketball team…the list goes on. The other half, is sparing the kids who should they look too closely into my eyes, will surely end up getting sick and dying. But mostly my avoidance stems from the fact that I know I live in a parallel universe. I realize that no one in that building could ever come close to understanding the aforementioned – let alone a teenage kid. None of those teenagers: with the exception of two, little, lovely Lancers.

I met the older of the lovelies three years ago when she was a freshman. She is a spicy monkey. Spicy enough to be one of my students. Spicy enough to run hurdles to boot. It was during track season that I got to know her best. At the time, I was going through IVF treatments to conceive you. She and her family were rallying around her little brother who was in the final weeks of his victorious battle with brain cancer: medulloblastoma. He endured and triumphed over 56 rounds of chemo and 28 rounds of radiation. I remember the day she brought celebratory bracelets into a team meeting. The night before, her brother “rang the bell” at CHW. (At the time, I had no idea how intimate I’d become with the notion of one day watching you reach up to tug the string on that same bell.) I recall silently sobbing in the coaches’ office as I watched the video she made of her little warrior brother ringing the bell. My tears were those of sheer joy…the sobs I blamed on the assortment of drugs surging throughout my body. In retrospect, I wonder if the world was silently trying to prepare me for matters of which I wouldn’t have understood, nor heeded, had they been emblazoned in neon, flashing lights.

Today one of my closest BCHS friends, who apparently pulled the short straw, sat me down and delivered a brutal message. The little warrior boy, who rang a bell over three years ago, just received the crushing news that his cancer is back. His cancer is back in the same spot as the original tumor…at the base of his brain. His cancer is fucking back. How is this even possible?

One of my new-world survival techniques is compartmentalization. In fact, it is the single most effective tool in my arsenal. I simply cannot allow my real world to overlap with my fake world. That being said, I don’t do “cancer-talk”, “Paxton-talk”, “personal-life talk” while I’m anywhere other than at home. On top of the collision of my two worlds, the nature of this news shoved me right down my ‘isolate to survive’ rabbit hole. The net result left me paralyzed. As tears began to push against the backs of my eyes, and vomit started to creep up my throat, I merely uttered, “This is not good. This really is not good.” Bless her heart and soul, my sweet friend gently replied, “I’m sorry, Danna. I am so sorry.” And the exchange of those two sentences continued on a loop, until I walked away…and “deep six-ed” into my rabbit hole.

Many hours later, and in the safety of my own space, I called my friend. I asked her to make sure this family knew that I will do anything I can to help them – anything at all. I am fully and wholly committed to their every last need. No matter what it is, when they need it…I am here. The offer stands infinitely. She promised she would make sure they knew. And she did.

I couldn’t allow my commitment to this little warrior boy to be my ‘something different’ on the 12th of this month. I forced myself to do something else. It ended up being horse-shit because my heart, which is smashed into 12 billion pieces, couldn’t muster up anything meaningful. Plus it was hella late in the night. For that, I apologize. For committing every last resource I personally have and that your Foundation has generated to this brave and beautiful boy, I do not.

I still have a hard time wrapping my head around my reality, which I know is also the reality for so many other parents across the land who have lost a child. It’s a reality you never get to escape from or take a break from. It’s a reality that is tremendous and cumbersome to carry around – and the load never gets any lighter. But, I don’t ever want my reality to be another parent’s reality. One blonde haired, blue-eyed boy is one too many. How many more need to be spared? What do I need to do to stop cancer from stealing another child?

Please help this little warrior boy. Please help Dr. Jogal, Dr. Firat, Nurse Renee and the other all-too familiar cast of characters at CHW who compose his Dream Team find a way for him to (once again) defy the gruesome odds. Please help him find his inner-warrior strength and reign triumphant over medulloblastoma, a PNET sarcoma, which has yet again declared war inside his sweet, innocent body.

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I miss you each and every day, I truly do. But today I’d especially have done anything to have been able to rush home, scoop you into my arms, and plant a kiss atop of your innocent, beautiful head…as I thanked the angels everywhere for letting you be born healthy and happy.

I am so very sorry you got sick. I will never, ever stop asking why. I will never, ever stop fighting either.

Stay with me, sweet boy. Stay with the little warrior boy too.

xoox,

Momma

Sorrow: masqueraded with a smile.

Little Diddy,

Momma is bursting at the seams with pride, thus needing to talk far too fast for Daddy to keep up. So I need to bend your ear to tell you about all the wonderful things that have been happening. (If you are busy, just smile and nod while you pretend to listen. I understand.) The past few days I have received so many unexpected messages which have made me smile. Each one of them were about you. It takes a whole lot of super-packed power to make Momma smile…especially on the outside, these days. You have managed to do the trick, at least three times in three days.

On Monday Ms. Sara told me about an extremely kind donation, accompanied by an even more endearing message, Team Paxton received from a man named Nick. Nick has a heart of gold. Momma went to high school with him, but he graduated with Lala. (My guess is it won’t be long before you notice the trend in people reigning from Cudahy and this heart-of-gold quality…just saying.) To remind you, Nick sent a bucket of goodies to CHW in June when we were inpatient. I was stunned to learn he knew of your diagnosis, but more so that he took the time to find, purchase, and send a goodie bucket filled with nuks, squeaky duckies, and crochet hats all the way to Wisconsin just to let you know he was thinking of you. Over the weekend, Nick made a generous donation in honor of your upcoming 1st birthday. He has a beautiful daughters of his own, lives out of state, hasn’t seen me in 20 years, and never had the good fortune of meeting you. Yet, your indomitable spirit has impacted Nick in ways I am certain he could not even explain. When you have a chance, can you please watch over Nick’s beloved little girl and see to it that good things come her way?

Yesterday I received an email from Lisa, the Patient Care Manager at CHW. She wrote to let me know that the hangers Team Paxton purchased for the floor have served as a tangible, and cherished, example of how ‘…little things make such a big difference’. She too is moved by the way in which your impact on this world continues to persist, despite your far too abbreviated time here with us. She and I have a plan in place to help purchase a (much needed, highly coveted) blanket warmer for the HOT unit floor. Do you remember how much you loved those warm, toasty blankies…especially after imaging, transfusions and surgeries? As you already know, there are no blanket warmers on the HOT unit. The warmers are only downstairs by the CT scans, ultrasounds, MRIs, and at the MACC Clinic. Momma always did her best to sweet talk the nurses into getting you one when proximity allowed. Or when Nurse Renee was on hand to hold you tight, and keep you safe, I would go on a commando mission and find a warmer unit (tucked in some secret cubby, in a dark hallway, behind a “Staff Only” door) and ‘borrow’ one for you. I didn’t mean to be defiant; I just needed things to happen faster when it came to making you comfortable. Nonetheless, once we were trapped on the HOT unit – no warm blankets were available. I know you agree – that was some serious bullshit.

Tonight may well be the most touching message I’ve received yet. It came from a complete stranger. She learned of you, your brave fight, and your beautiful soul through an interview Ms. Sara and Ms. Kate did on Morning Blend earlier this fall. Unable to shake the impact you made on through a t.v. screen, and a few still-shot pictures – which encapsulated your contagious smile – she contacted Team Paxton. She is a mother of a precious little girl, Clare, who was born on February 12th, 2012. Just like you should be, Clare is turning 1 next month. Her request: permission to ask the guests coming to Clare’s 1st birthday party to make a donation to Team Paxton, in honor of YOUR 1st birthday, in lieu of buying her daughter a gift. I cannot yet articulate the array of emotions this gesture bought to my soul. Among them – honor, endearment, jealously, sadness, joy, love, spite, curiosity, anger, resentment, happiness. For tonight, I will focus on the most positive of all – which only your life spark can continue to bring me – unexpected and uncanny pride…accompanied by a smile.

Sad Smile

I am so humbled and honored to be your Momma, Paxton Bowe Andrews. I do not suspect I will ever understand how I got to be lucky enough to have you as my son. I wish there were some way I could have protected you from cancer – not to mention all the inhumane, unacceptable, torturous procedures I allowed to happen to you in your brave fight. None of it is right. Not one single thing. Thank you for loving me despite all of my many flaws. I promise to love you until the end of time…and forever and ever after.

Thank you for making me smile, My-My. Though it is merely a temporary mask for my pain ~ it is still a smile. And it is for you.

I will look for you in my dreams.

Stay with me, sweet boy.

xoox

Momma

Burt’s Bees & “Little-tiny-bear” Kind of Day

Lil Diddy,

There’s one good thing about it being a weekend…besides not having to get up far too early for someone who falls asleep about 20 minutes before her alarm goes off. On weekends, I allow myself to use your Burt’s Bees Lotion on my chest (right over my heart). Having a scent of you with me all day, makes me feel a tiny bit closer to you. I would use it every day, except that Burt’s Bees made the only bad decision ever – and discontinued the particular lotion. Right after you were born, your genius Nana went gangbusters and bought every bottle she could find – on eBay – even though they were five times their original price. Today, however, is one of those days where I let myself bend the rule a little. I used your lotion on my entire body. I am extra sad today; therefore, I need extra more of you with me. I also stole Little-tiny-bear from your room and put him in my purse. Little-tiny-bear was a late comer to the scene. He arrived in mid-June, but you sure loved him. Not only is super soft and snuggly, he was just the right size for you to grab onto and hold in your hands. Little-tiny-bear stayed with you when I left your body at the hospital on July 2nd. He stayed tucked under your perfect, beautiful hands until Daddy and I picked you up from the funeral home…in a box. Little-tiny-bear was placed in the box right next to you, just as the funeral director promised.

I am still so mad at myself for leaving you at the hospital. I don’t remember leaving – I only remember I didn’t want to. I do remember making Daddy go back into the NICU room to get Giraffey and your potato blankie from Britta. I insisted he get your stuffed animal & a blankie – but, I didn’t insist he go back into the room and grab you. What kind of Momma thinks like that? I guess one who is having an out of body experience because her beloved son just died. But I still will not forgive myself for it. Another thing that tortures me about my behavior on July 2nd is that I didn’t bath your precious body – – one last time.  Even though your spirit had gone, your body was still there with me.  I should have bucked up, pulled myself together, and been a Momma. Instead, I asked your favorite girlfriend, Nurse Renee, if she could do one more favor for me and give you a bath. Of course she agreed. But, Nurse Renee is not your Momma. Nonetheless, she was the last one to give your body a bath. In turn, she put the last diaper, and the last outfit, on your precious body too. I am so sorry, sweet boy.

Daddy and I are going to run errands today. We are going to go in and out of the house, the car, and the stores without juggling 18 things that came along with transporting you with us. I hate the ease in which I can come and go from place to place. I long for the days when it was necessary to invoke super-Sheerah powers in order to remember, carry, and balance the bottles, diapers, blankets, bags, change of clothing, nuks, Giraffey, car seat…and my most precious cargo of all – you…everywhere I went.

I wonder what you would have done today to make me throw my head back, laugh out loud, and thank every angel in the world for sending you to me.

Thank you for being my baby. I love you. I miss you. I hope you are safe.

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Stay with me, sweet boy.
xoox,
Momma