Sides

The sides.

All of the sides.

The Vegas buffet of sides.

I don’t think I will ever order my dressing on the side again. Just keep the dressing! No I don’t want fruit salad or fries. I Don’t want it!

The notion of cause and effect sounds simple. It feels clean just saying it. A cause gives an effect. Just like two roads diverging, but it’s not that simple as we know. Right Frosty?

The effects becomes a cause and you are left with “side effects.”

3f8 cause has one main effect, PAIN, but endless sides.

Pain is managed by narcotics. Narcotics create sides and with Jacob that is vomit. Vomit causes him stomach pain, pain requires more meds, and the endless cycle begins.

Like last night.

Out of nowhere, Jacob shot out of bed screaming in pain. We gave him pain meds, but he said: “they weren’t working.” He then pulled himself out of bed and went to his stroller and said “take me to the hospital.” This was a first. My heart pounding. This must be serious. To the hospital, we went.

Once there we learn that this pain is just a side. Of course, it is. One of the infinite sides, because no one really can tell you how Jacob will react to 3f8, shhh…they don’t know either. BUT everything needs to be taken seriously, because what if it’s an infection that could be deadly. When you have a “line” outside your body that goes directly to your heart everything is taken seriously. So the nightly heart attack run to the hospital we did. 

To end up getting more narcotics, more sides. And the cycle of continues.

Another effect of 3f8 is fever and that comes with loads of sides. The most troubling is the influx of antibiotics. It’s a precaution to treat the fever as if it is caused by bacteria. Even though the fever is most likely due to 3f8, no risks here. And it seems that Jacob always gets a fever after 3f8 so that means every round he is pumped with antibiotics. Those antibiotics kill all the good bacteria along with the bad and that causes an infection in his gut. He now has c-diff and is in isolation.

He can’t partake in any of the Halloween festivities here as he is in isolation. He can’t even leave his room.  And guess what c-diff is treated with? Did you guess it? Yep. More antibiotics. These come with their own sides.

But the biggest side is psychological. Sleep and disinterest in the world around him. Today that disinterest is especially hard. It’s Halloween. It’s the day of candy and fun. Jacob has been dressing up for Halloween even in utero.

There’s Jacob the basketball. Together we are a slam dunk!

But this year…

He refuses to put on his costume that he was so excited to receive. He refuses to even watch the other kids who parade down the hall. His curtain is drawn. And it makes me so sad. Sad for him. Sad for him to not be able to enjoy such a simple pleasure, a day of pure childhood innocence.

And it sucks. Yesterday Friends of Nightwing put together a Halloween trick or treating just for Jacob! Jacob was going to be able to have a true Halloween by trick or treating at his friends’s houses, but he couldn’t make it. He couldn’t get out of bed.

I was determined to make today better. We made presents for all the nurses that we put such love and time into. Never missing an opportunity to educate, we made Lasker Awards. I was flabbergasted by the lack of knowledge of the history of cancer of even our own doctor! None (out of the 50+) of the nurses even knew of Mary Lasker AND Sloan sits on Mary Lasker Way (York between 67& 68 is Lasker Way). I handed them Lasker award hoping to spread the word, that ordinary people (even a divorce women in the 1940’s) can change the world. That we need to continue to advocate even in the mess of our healthcare system. 

He had no interest in passing them out. I did this alone.

And this is the second time. This marks the second Halloween in a hospital. Last year, Steve and I spent the day getting a biopsy of his tumor. 

Another year held in place in time. Another year captive to a disease.

But at least we will come home tonight to this beacon. 

Thank you, Friends of Nightwing. Your pumpkin carving skills are truly exceptional.  I’m impressed!

But for now Halloween will be a side. Something I’m passing on. A day that will always be remembered by watching people I love in pain. A day of unknowing how it will all end.

So no thank you. I pass. I don’t want any of the sides.


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