I’m kinda sick of my almost-12-year-old kid having all these old people problems: cancer, hearing aids, balding and now pneumonia. I’m waiting for dementia and Alzheimer’s to set in, too, and perhaps a side of gout. Why not turn up the fun to eleven? If you get that reference, well, you rock. Seriously, though. I’m considering getting him a Rascal to cruise around on, complete with a slot in which to carry a bottle of oxygen. If his hair wouldn’t have fallen out so freaking fast, I would have styled it into a comb-over to complete the look.

I really really want to write but I keep jumping the line between being absolutely filled with anger to having the emotional capabilities of someone who’s smoked a big bowl of weed. All I can eek out is a half-hearted “meh.” Then I start all over again with the anger. It’s a hellish merry-go-round. I’m furious that my kid can’t catch a break. But there’s nothing I can do about it so what good will bitching do? Grrrr. Meh. Grrrr. Meh. It’s a freaky kind of bi-polar.

So, here’s what’s been happening. Ben has been inpatient for over a week. He originally came in for neutropenia (low blood counts) which is totally normal after a round of chemo. It happened a little faster than expected, but we knew it would happen. So, he battled some fevers and had a bunch of nausea. A few days later we focused on pulling out his hair, another messed up milestone on this cancer journey. Then a day or two later he couldn’t seem to beat those fevers and his counts just weren’t pulling up. It was apparent that his bone marrow had taken a pretty brutal beating during the course of chemo. The goal all along was to get him out before his birthday, which is Saturday, June 22. We were on track for that. Then, he had to have his port needle changed because it had been in for a whole week. This caused a big fiasco because no one could get a new needle placed. He was poked and re-poked and poked some more, to the point where he was an emotional mess. X-rays showed that there was no plausible reason why the port wasn’t working – it wasn’t cracked. It wasn’t broken. It wasn’t clotted. It just wasn’t cooperating.

Matt was pushing for surgical removal/replacement and I was on board with that plan, too, if they couldn’t get it accessed. My main problem with simply replacing the port was that Ben’s ability to fight infection was super low. If anything happened to cause infection, it could kill Ben. Dr. Greffe felt that giving it one more try would be the best thing to do. I trust him with my whole heart. So, Ben got lots of Ativan (an anti-anxiety drug) and lots of numbing cream before the the final try to access. Rebecca (my new hero) came in and TA-DA! Accessed his port without issue. Turns out that Ben’s port tilts up slightly and they had been trying to put the needle in the wrong place. Rebecca figured it out and she’s now written into my will. Unfortunately, I have nothing of value to give her, but I am totally grateful for her expertise.

Ben was totally traumatized though. He’s usually extremely brave about everything but this event did a number on him. After Rebecca accessed it on the first try he broke down in tears of relief. He’s just been through too much.

So, as the sun does its rotation and pulls us closer to the 22nd, it becomes more and more apparent that we will not be out of here for his birthday. And with today’s development of freaking pneumonia, there’s no way we’ll reach that goal. So, we’ll just do the best we can with what we have. Pop Pop (my step-dad) is here from Ohio, which is awesome. I’m sure we can set up a virtual Mine Craft party and I’ll bring in a cake, so we’ll celebrate to some degree. We’ll make it happen.

As for next week, who knows. He’s supposed to start chemo again on Monday but I have a feeling we’ll still be inpatient. His counts aren’t recovering fast enough to hit him again with another dose of chemo anyway. So, we’ll just play that by ear.

For now, Ben is lying in his hospital bed, one thin leg crossed over the other as he intermittently coughs into a paper towel. He is like a little old man. And if he’s that old, how old does that make me? I’m nothing more than a skeleton. A shell of my former self propped against the wall watching my son suffer through a bunch of bogus crap that cancer keeps throwing at him.

I feel helpless. I’m ready to help my son fight it but it’s so hard to battle such a sneaky adversary. I just never know what that underhanded bastard is going to attack next.


Join the Conversation


  1. Sarah you are one tough cookie. Ben is an incredible human being for battling everything that is handed to him and he is a strong fighter. I’m saying soooo many prayers and being hopeful and positive so all my energy can transfer to you all and keep you going.


  2. Dear Sarah, I have followed your blog through our friend Dara — I have to say you are the strongest, bravest person. I do wish things were different for you little boy. I will be praying for him…and your entire family.



  3. Sarah, I just want you to know that I am always praying for Ben, Madelyn, and you. May God give you strength beyond your imagination.

    Patty (Shawn’s mom)


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