I Didn’t Even Prepare an Acceptance Speech

Winning. Not something that’s been a big part of my life. Much like the unfortunate likes of Charlie Brown or the Amazing Luckless Peter Parker, I’ve been one acquainted with catastrophe. Literally, and I’m not misusing literally.

I’ll never be the person who wins the Powerball twice in ten years (bastards) or finds a briefcase full of a million dollars (okay, seriously, that’s mob money). You won’t see me winning any competition. I’ve often joked that if there were a contest which required its winner to be named Donnell Jeansonne and have my social security number, some identity thief would win it.

But when you are a luckless schlub, you learn to really appreciate the things in life that some people might find trivial. To be completely cliché I’ll maintain I’ll never be wealthy, but my life is enriched by the people in it. Some of those people are close friends and family. Some are new friends. Some are acquaintances. Still, some are folks I’ve never met in real life, and may never meet.

One of those wonderful people is a lovely lady and author of the blog Pinwheels and Poppies. We met as WordPress bloggers when I first read her blog The Coming Adventures of a Soon-to-be Baldie in which she writes of an upcoming trip to Chicago to participate in a St. Baldrick’s event. The blog was posted on March 19, 2012-just thirteen days after I learned my own son, then twenty-eight months old, had a malignant brain tumor.

We’ve corresponded via the Internet since then, and today she shared something with me. Although I’ve been behind in blogging (I promise all of my free time is spent working on my novel.), she’s awarded my humble blog with the Liebster Award.

Coincidentally, I studied German for three years in high school and two in college. I can’t say I’m fluent anymore as parts of my brain have gone on permanent vacation. But I do know that among the word’s meanings, one of them is beloved. And with this knowledge, I want to thank my friend at Pinwheels and Poppies for awarding my blog, and as always for dedicating herself to helping raise money for pediatric cancer research.

My son Robot Boy and his dad

Now there are rules that go along with this award. Just like Spidey says, “With great power comes great responsibility.” These rules don’t appear to be carved in stone or anything, but basically they are intended for bloggers to pay it forward by acknowledging the blogger who awarded them and to pass it along to other, also lesser known, blogs. According to seemingly official Liebster Award criteria posted by P&P, an awarded blogger should recognize three to five other bloggers with less than 300 subscribers.

Past bloggers have also passed down rules that an awarded blogger should state eleven things about herself/himself, and should answer eleven questions set by the person giving the award. And that we should write eleven questions for our own awarded bloggers.

Since the lovely lady who has seen fit to give me this award has followed the eleven question rule, I will follow suit.

11 Questions for Me:

1. What is your earliest memory?
A tight squeeze and a bright light. Just kidding. My earliest memory is from last week. Who am I again?

2. What are your personal religious/spiritual beliefs?
Spiritual yes. Religious hardly.

3. Favorite comfort food?
I really can’t answer this question. I’m from NOLA. Everything is comfort food.

4. Are you crafty? If so, what’s your crafting niche?
Is sticking yourself repeatedly with sewing needles and burning yourself with hot glue guns a craft? Because if so, that.

5. Who do you think is hotter- Johnny Depp or Robert Downey Jr?
Johnny

6. What’s your astrological sign? Do you believe in astrology?
I was born on the Virgo/Libra cusp. I’m a little of both and a little of neither. I lean more toward the Libra in me. For entertainment purposes only.

7. How many countries have you been to? Which ones?
Four not including the USA. Mexico, St. Maarten, the Bahamas, Grand Caymen. Also the US Virgin Islands which I didn’t count because it’s the US.

8. Have you read 50 Shades of Grey? Opinion?
Nope.

9. Which decade do you feel like you belong in? Why?
The Seventies. I could see all the cool bands, man.

10. Do you garden? If yes, what kind of gardening do you do?
Does watching my husband mow the lawn count as gardening? Then yes.

11. What blows your mind more- outer space or life as we know it?
Outer space, man! Seriously. The universe is fucking awesome.

Now that that’s finished, here are eleven things to know about moi:

1. When you’re on fire you don’t remember to stop, drop, and roll. I know this from experience.

2. I say fuck a lot. But not as much as motherfucker.

3. I think if I had a British accent I’d be much funnier.

4. I once tap danced in front of the Cabildo and made $11-true story. Also, I can’t tap dance.

5. I’m pretty sure I’d make a successful psychic. I can’t see the future, but I’m pretty good at bullshitting people.

6. I like the Regular Show.

7. Me and my bestie once played Spider-Man for Playstation 2 for twelve straight hours until we finished because we didn’t have a memory card.

8. I’m fairly jolly for a person whose life’s in the shitter.

9. I am a book hoarder. I buy books I never read, some I do read, some I read multiple times. I am addicted to buying books.

10. Anyone who’s ever heard my name knows how much I love Queen and Freddie Mercury.

11. My fantasy destination in Phuket, Thailand.

Phuket

And here are the next award winners of the prestigious, glamorous, delicious Liebster Award. Drumroll please……..

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1. Crazy Dumbsaint of the Mind
2. Transitioning Mom
3. hollyanne gets poetic
4. kimberliah
5. Mullings of Mind Tramp

Now to notify the winners…

Thank you again to Pinwheels and Poppies for considering my blog for this award!

Chemotherapy and Stubborn Little Boys (And Moms and Dads)

I never thought I’d say the words, “Thankfully my son started chemo today.” Because no one should be happy that her child is receiving chemotherapy. Because in that case obviously something is very wrong. Something has gone awry, and bad. But I say that I am thankful because for the last month and a half we’ve been waiting to know if chemotherapy was even an option.

See there was a time when the doctors thought Doodles wouldn’t even make it this far. He was “neurologically devastated” and they weren’t sure if he was “salvageable”-because he’s a car or sunken shipwreck. We were told he “wasn’t going to get better” and that they were just planning to sustain him and “keep him stable.” We were even told they might have to “just let nature take its course”, to which we replied, “That is not an option.”

Because we knew what they didn’t know, and although they were reluctant to believe us, we refused to let Doodles go down without a fight. We saw what the doctors didn’t see. We saw that he was “salvageable”, and that he was conscious, responsive, and aware. We knew he was there.

Me and Doodles, in grayscale

I’m sure we were regarded as over-optimistic parents refusing to accept reality. I’m sure there are sadly many parents who might have taken the doctors’ words as testament and went along with whatever their plans were. But we’re stubborn and very hard-headed. And so is Doodles.

We had a long discussion, he and I.  I told him it was very important that he start showing the doctors that he was a strong man and that he was getting better. I told him it was the most important thing in the world. Whether he understood me or not, I don’t know, but he did what I asked. When the neurologist came to asses him she spent less than five minutes before she decided he was, in fact, not “neurologically devastated”, and that he was very much aware and alert.

Doodles finally got his tracheostomy and his g-tube (something that was delayed because the oncologists who originally looked over his case decided there wasn’t much they could do), and although he is still on the ventilator, he is breathing over the machine at almost twenty breaths a minute. They are now weaning him off the ventilator, something we were told just weeks ago wouldn’t happen.

The hem/onc team wasn’t sure if they could or would start chemotherapy simply for the mere fact that they assumed Doodles wouldn’t recover and that it wasn’t feasible. To them it seemed more feasible to let him expire, I suppose. But it wasn’t feasible to us, and certainly not to Doodles.

So today I say that I am thankful that my son started his chemotherapy because it sure beats the hell out of the alternative.

I want to add that not all of Doodles’s doctors were so fatalistic about his condition, and I’m very grateful to those who voiced their opinions and were his advocates in opposition of those doctors who were ready to close the book on him. I also want to acknowledge the many great nurses, physical therapists, respiratory techs, and other staff here who have taken to Doodles so much so that they check in on him and ask about his progress even when he’s not their patient for the day.

Findings

I’ve written in many of my past posts that my son who is two years old has been sick for quite a while, suffering from seeming bronchitis related illnesses and even pneumonia. In January he became unable to walk properly and it led to the assumption by his pediatrician that he was experiencing inflammation in the inner ear due to an ear infection. Although she was concerned the cause was much more serious, she treated the ear and we all hoped for the best.

His condition declined over January and February, which found us not even a week ago in Children’s Hospital explaining to a myriad of doctors how he’d been ill since late last year and so forth. I’ve repeated the spiel so many times I’ve got it memorized. I don’t even have to think about it.

The pediatricians caring for my child at the hospital, like his regular pediatrician, were concerned about his dizziness and instability. They were concerned enough to conduct a series of simple neurological tests that raised their concerns further leading them to order a CT scan of his brain.

I knew the news was bad when two doctors came into the room, pulled up chairs, and said they were there to talk about the results of the CT scan. They advised us it had revealed a large mass in my son’s brain. I was frozen in this moment, trying to conceptualize the reality of this information. As I held my two year old son on my lap with tears teeming, he turned around, knelt on my thighs, put his hands on my face, and said, “Don’t sad, Mommy.” Trying not to upset him, I assured him Mommy wasn’t sad. Then he reached out to tickle my face in an attempt to make me smile. And though I was still crying, it worked.

An MRI was ordered for the next day, and it showed the doctors the actual size and location of the mass. From the MRI they also learned it had travelled down into his brain stem and his spine.

Oncologists informed us in their matter of fact way that the tumor is malignant. They also told us due to its delicate location, the surgeon will not be able to remove the entire tumor and my son will require follow up treatments of chemo and radiation.

I suppose it’s needless to say that since then we’ve been bombarded with information. I’ve spoken to twenty plus doctors working in nearly every field, it seems, from neurosurgery, orthopedics, oncology, endocrinology, speech therapy, and dietary needs.

They come in pairs, sometimes more. I spoke to three ENTs, two orthopedic doctors, and four neurosurgeons. And that’s not all.

Surgery is scheduled for next week. Suffice to say I am petrified. The procedure will be extensive, it will be dangerous, and it is critical that the tumor be removed as soon as possible. The neurosurgeons are only waiting until next week because my son’s lungs are still swimming in secretions from the pneumonia.

I’m proud of myself for remaining so positive up to this point. Optimism is a trait with which I’ve rarely been associated. But I am optimistic because I won’t be any other way. Because my child is still looking at me for reassurance. He doesn’t know everything, but he knows he is sick and he knows he’s in the hospital. And although his speech is now impaired, along with his ability to swallow, eat, drink, and breath, he is still looking at me and wanting me not to be sad.