September is Gold

SeptGoldPic

September is Childhood Cancer Awareness Month, and the color is gold. Pediatric cancer is not a popular subject. It isn’t something we like to discuss or think about. What parents want to imagine their child with cancer? We didn’t want to. Unfortunately, avoiding the thought of it didn’t prevent Robot Boy from developing brain cancer. A PNET-primitive neuroectodermal tumor-to be exact. It’s a long word, but it’s one this mother won’t forget. A PNET is a rare type of brain tumor that carries with it a survival rate of approximately fifty-three percent. My son, RB, was given a forty percent chance of survival.

Brain cancers aren’t the only types of cancer that afflict our youth. According to the National Cancer Institute: “Among the 12 major types of childhood cancers, leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of the new cases.” (http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood) Cancer is the leading cause of death by disease for those under the age of nineteen. Even though, pediatric cancer is the least funded and least acknowledged of all cancers. Maybe this is because we don’t want to talk about it. But we aren’t doing the children any favors by avoiding the issue.

Brain tumors are the most common form of solid tumors in children.
Brain tumors are the most common form of solid tumors in children.

Childhood Cancer Awareness is important because pediatric cancer isn’t as widely publicized as other cancers. For this reason, it isn’t funded as much as other cancers, too. It is rare, compared to other types of cancer, but it is just as important. On Sunday September 1, I’m shaving again for Childhood Cancer Awareness. Not my own head this time, but someone else’s. Someone else who is interested in helping to bring recognition to this deadly disease. He asked specifically that RB and I be involved with his selfless act to help bring attention to pediatric cancer. We are more than happy to oblige.

I went bald by choice. Unfortunately, due to harsh, poisonous medications, children with cancer don't have the choice.
I went bald by choice. Unfortunately, due to harsh, poisonous medications, children with cancer don’t have the choice.

The last time I shaved my head was for a St. Baldrick’s Foundation Event, and though this shave isn’t for any event, you can still visit RB’s St. Baldrick’s Foundation home page (http://stbaldricks.org/teams/robotboy) and make a donation. If you’re wondering why you should donate to St. Baldrick’s Foundation, I’ll let you know that they are the second largest entity that dedicates funds to pediatric cancer research (the U.S. Government is the first). I’ll also explain that they dedicate more funds to research than any other cancer foundation-over eighty percent of each dollar donated. They’re funding research in many areas, including those for cancer treatments that are less harmful than current treatments-those that can leave patients with a variety of disabilities.

Robot Boy before we learned he had cancer, before the surgery and treatments that later disabled him, most likely for life.
Robot Boy before we learned he had cancer, before the surgery and treatments that later disabled him-most likely for life.

According to St. Baldrick’s website, 175,000 kids are diagnosed with cancer each year. A child is diagnosed every three minutes. There isn’t much hope for a cure for some children, but because of improved research and treatments, kids’ overall survival rate has dramatically increased over the last sixty years. (http://www.stbaldricks.org/about-childhood-cancer)

Please share. Please donate if you’re able. Any amount is helpful (and much appreciated!). Childhood Cancer is a vicious, insidious killer. Sadly, it’s one that little is known about.

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Pressure

I get about one day a week off from my nearly 24/7 duties at Children’s Hospital. (If you’re just joining us, you can read about all that here.) This day is Friday, when my mom comes to stay with Robot Boy so I can go home, have a real dinner with my husband, decompress, and sleep. My mom works most Fridays, and she is wonderful enough to come after work and sleep at the hospital. Well, I shouldn’t really say “sleep at the hospital” because anyone whose ever been in a hospital or stayed with a loved one in a hospital knows you don’t sleep. Not more than an hour or so at a time, anyway.

It’s suffice to say these evenings I get away from the hospital are sacrosanct. I do my best to get home in enough time to go out to dinner with my husband and at least spend some time with him before he has to go to bed, as he works Saturdays usually. My home is approximately an hour and a half from the hospital, depending on traffic. The drive is hardly bothersome under normal conditions. For the last five years, I’ve had an hour commute to and from work-sometimes before and after working 12+ hours. I don’t mind driving, as long as the traffic is moving and there aren’t very many fucking assholes inconsiderate drivers on the road. I turn up the radio and exercise my vocal chords.

I sound nothing like Gonzo while singing this medley.

As I’ve said, under normal circumstances, I don’t mind the drive. However today, today my decisions led to me into very unusual driving conditions for my Friday night of freedom. My mom didn’t work this Friday, and she was at the hospital earlier than usual. Instead of leaving the hospital shortly after she arrived, I chose to stay and visit a while. I also have a terrible time tearing myself away from RB. Especially on nights like tonight, when he was watching me pack my bag, knowing that I was leaving. Not that he doesn’t love his grandma. He is very excited when she visits, but Mom is the safety net. Mom is there to make sure nothing goes awry. And also Mom knows-or thinks she knows-exactly what he wants most of the time.

I don’t regret my decision to stay, but I was less than pleased to be stuck in the horrendous traffic which accumulated at the precise moment I left the hospital’s parking lot. I made the unwise decision to leave at exactly 5p.m. on a Friday night. Oh and also on the night of a Hornets game. I sat on the same street for no less than 30 minutes. Someone in a black Yukon that’s license number I did not memorize for use in future voodoo ceremonies nearly caused an accident by purposely skirting around me while I was clearing changing lanes to avoid an 18-wheeler. I hardly berated the driver before he/she sped away.

Photo c/o Microsoft Office Free Clipart

I finally made it to the interstate, only to discover the traffic was almost as bad. With my bladder’s fluid gauge on full, I approached the High Rise, which any native knows is another traffic nightmare. At any rate, I finally got through the city and crossed Lake Pontchartrain en route to my home.

I exited as soon as possible and hit a gas station to fill up and utilize their surprisingly clean restrooms. I bought an enormous coffee (and a six-pack) and returned to the road. Instead of heading back to the interstate, I remained on the highway, which proved to be an unfortunate decision since everyone else in the state also decided to do the same thing on the same road. I was stuck in more traffic. But, with an empty bladder, a serious caffeine high, and good music, my two and a half hours in snarling traffic already seemed much less unpleasant, and at the exact moment I was contemplating driving through servitudes and on private property, the Muses graced me with a rather fitting song on the radio. . .

This song describes my entire life right now.”Pressure pushing down on me/Pressing down on you/No man asked for/Under pressure /That burns a building down/Splits a family in two/Puts people on streets.”

I, of course, recognized the fortuity. As I began to sing (both David Bowie and Freddie Mercury’s parts in perfect pitch, I might add), my foul mood was interrupted by tolerance and stoicism. What importance really, in the grande scheme of things (if there is one) holds traffic? I felt most uplifted: “Pray tomorrow gets me higher, high, high!”

Perhaps it was the music, or my utter madness, or the realization that there is no use being upset when you can grin and enjoy a major caffeine rush, or perhaps it was all these things, but I was wearing a smile and feeling so much better. “Cause love’s such an old-fashioned word/And love dares you to care for/The people on the edge of the Night/And love dares you to change our way of/Caring about ourselves.”

When the song ended, I felt like I needed a decent follow-up. You can’t just come down off a high like that. With my iPod on shuffle, I skipped the next two songs until I found a great song to accompany the first.

This is the cutest video ever.

“That time will come/One day you’ll see/When we can all be  friends.”

This interestingly unrelated piece of free clipart c/o none other than Microsoft Office

Under Pressure was written and performed by Queen & David Bowie and appeared on Queen’s 1982 album Hot Space.

The Miracle was written and performed by Queen and appeared on their 1989 album of the same name. The four boys from the video are Paul Howard as Brian May, James Currie as John Deacon, Adam Gladdish as Roger Taylor, and Ross McCall as Freddie Mercury.

Bohemian Rhapsody was written by Freddie Mercury and performed by Queen. It appeared on their 1975 album A Night at the Opera (titled after the Marx Brothers’ movie of the same name).

The Muppets were created by Jim Henson and currently belong to The Walt Disney Company.

Mother’s Day

Photo credit: Africa via FreeDigitalPhotos.net

I’m late on my post, but it’s something I wanted to share. Yesterday was a bad day for me, what with the baby in the hospital and all. I longed to be spending my time with my family-at the park and having dinner like we did last Mother’s Day.

I wanted to write this as a dedication to some very special women in my life.  Later is better than never, I guess.

I want to start with my maternal grandmother. She was born in 1926, but don’t tell anyone I told you. Her parents came to the good ol’ USA from Italy in the early 1900’s (or late 1800’s, I’m fuzzy on the details). My great-grandmother passed away when I was a toddler, but I vaguely remember that she spoke broken English and had a bird. She was a determined, strong woman who raised four kids and divorced her abusive husband-a very big deal to an Italian Catholic at that time. But she did what she had to, and they never had much, but they had what was important-lots of family. And pasta. I’m assuming the last part, but I know when I was growing up we always had a lot of that at my grandma’s.

I don’t know a whole lot about her youth, and I can’t begin to imagine what life was like for my grandma, the eldest of her siblings, helping raise the others. I figure things got pretty harsh at times, especially during the Depression. But they made it through, by the grace of God and by doing what was neccesary.

In her twenties, my grandma met and married my grandpa. They had three kids, one of which is my mother. The other two are my uncles. In his infancy, my grandmother’s middle son suffered an illness that left him disabled. I don’t even think my grandparents were given a clear answer at the time, but all I know is that my uncle suffered a high fever that damaged his young brain.

My grandmother spent days, weeks, months, years in and out of the hospital with my uncle-the very same hospital I am at now with Doodles. My uncle required many surgeries that spanned into his late teens or early twenties. She was told he wouldn’t walk or speak, but he does both-albeit with difficulty-and although age is taking the inevitable toll, he is able to participate in daily activities. He’s nearing sixty, and my grandmother-nearing eighty-six-is still caring for him.

I’ve learned that my grandmother has been inconsolable since she learned of Doodles’s illness, and I understand why. She is a mother, and she has been where I am, struggling, hoping, praying, begging for her son’s life. I am nearly her carbon copy, experiencing the same heartache, uncertainties, and longing that she did so many years ago. She is the only person near to me now that understands what it is to be me now, understands how it is to be the mother of a child with a life threatening and debilitating condition. She is one of an innumerable amount of reasons that I refuse to walk with my head down during this difficult time.

My grandmother’s youngest child is none other than my own mom. I don’t know how to begin to describe this woman. She is vibrant, exuberant, hard-working, no-holds-barred, badass, outspoken, lively, extroverted, loving, level-headed, funny, optimistic, and just a little quirky. She is the reason I love reading and writing. She is the reason I am everything I am today. I am proud to be her daughter. She is the reason I am proud to be a woman.

In this chapter of my life, my mother is my best-friend. Not always the case. There were those teenage years when I was becoming my own independent person, and we butted heads-a lot. But as an adult, and especially as a mother, I know she was kicking my ass down the right path. Figuratively, of course.

She is the woman who first introduced me to Stephen King and Edgar Allan Poe and Hitchcock and old time movie monsters and scary movies and all the frightfully delightful things I adore. She is the woman who nurtured my imagination and creativity. She’s the woman with whom I sat on so many Saturday mornings or evenings watching pitifully horrible B movies and laughing our asses off (still do). She is the woman I would be if I were a better woman.

Lastly, I want to write about my late paternal grandmother. Like my maternal grandmother, I know little of her childhood, but I do know she was born and raised in rural Louisiana on a farm. At some point, they moved to the city, then the suburbs. She married my grandfather and they had three sons, one of which is, of course, my father.

I understand that in her youth she suffered an ailment in her legs that required the wearing of braces, and she continued to have some problems into adulthood. She worked hard to raise her kids while my grandfather worked shift work at a local refinery.

After the floods of Hurricane Katrina claimed their home, my grandparents moved back to the country to live out their twilight years. My grandmother became ill and didn’t recover, passing away just over a month before Doodles was born. She was so excited to have a great-grandchild, and if there is an afterlife, maybe she’s there watching us now and sending positive energy our way.

I love these women. They have shaped who I am. They deserve recognition everyday. And I thank them.