Tag Archives: scary shit

An update on Konner: A diagnosis (finally)

Posted on by
3

Shortly after I posted my last update on Konner, I got a slew of texts from Sandy with, finally, some answers. It’s been hard for me to do any writing here at all, so I apologize for how late this is.

Konner did have that post-strep glomerulonephritis disease. (I’m not sure if I wrote about it, but that’s what they were thinking when they originally sent him home from Yale.) Basically, it’s a disease that kids get sometimes after having strep throat. It attacks the kidneys, and since our baby only has one kidney, he was in all kinds of trouble. His C3 levels are back to normal, and are actually the highest they’ve been since he was born. Because of the kidney disease he was born with, Sandy couldn’t potty train him completely (even though she did try a few times and he was actually doing okay before he stopped being able to produce urine). However, because of all of these things together, a large amount of ecoli grew in his urine over a period of time, which caused the complications that led Sandy to take him to Yale again (vomiting, diarrhea, swelling in his feet, inability to urinate, etc). After putting him on some ammoxicillin, the amount of ecoli in his urine has gone down.

Konner had six interns working on his case around the clock, and after sixteen hours straight, they put all of the pieces together and figured it out. (This seriously sounds like a crazy episode of HOUSE or Grey’s Anatomy. Unfortunately for Konner and Sandy, it was all very real.)

Konner is now home and, as far as I know, he’s steadily recovering.

We are still doing the Kidney Walk. Please donate if you can. Click here to make a donation to the National Kidney Foundation. Your donation will help me make my fundraising goal for the walk, so every little bit helps! I am trying to raise $200, and so far have raised $10 (which was my donation). All donations go to research, which will help Konner and all of the other people who have kidney diseases.

Thank you so much for your help and your support throughout these last few months! I’ll keep you all posted.

An update on Noni: Test results

Posted on by
3

For most of my life, I’ve always poured my heart out into my journal. When I started blogging, I kept that same what-I-feel-is-what-I’m-writing habit. I even drifted completely away from my paper journal, and wrote down every event here.

Lately, I can’t seem to get the words down.

I’ve known for almost a week now what Noni’s tests came back with, and I just couldn’t write about it. Part of it was that I wanted to wait until my sister knew (because she’s been at school, so Mom wanted to tell her face-to-face), but I couldn’t even write a password-protected or private post. It’s hard to even talk about it. It’s as if my mind just won’t let the message across to my mouth or fingers.

But because I’ve always felt better after writing something out, I still feel the need to write about this. But the words don’t come easily.

On Tuesday, the 12th, Noni found out that her cancer is aggressive. It is not in her organs, but it is in her bones: her hip and shoulder blade. Her doctors ordered another biopsy of the tumor in her arm pit, and are testing it to see if it responds to estrogen-based treatments and a couple of other kinds of new treatment. If it does respond, they’re going to hold off on the surgery to remove the tumor so that they can use it as a way to measure progress.

She told me flat out that she just wants everyone to be positive, because she wants to see her grandchildren get old. I’m kind of glad she couldn’t see my face (because of the way the light was coming in through the window), because I have no idea how my face looked. I’ve never been good at controlling my facial expressions; everyone I know says my face is an open book.

On Friday, when my mom told Lauren about the test results, I also found out that they’re considering this stage four. To be completely honest, I had been afraid to ask Noni when I talked to her. I asked her other things, but completely avoided asking THE QUESTION.

This feels like Popi, all over again. My family just went through this. We found out there was cancer. We waited for test results. We hoped that things weren’t too bad. We got test results, and found out that it was as bad as bad can be. And still, we hoped. Or at least, everyone else did; I just walked around in silent denial. I did not think that cancer would take away my grandfather.

Now, I’m reminded all too much of that stoic denial, and I don’t know how to feel. My mind wants to do three things, all at once: be in denial, hope for a good outcome, and scream. Mostly, it just goes blank, something I never thought it could do. Everything is black and white: Food, sleep, don’t think about the bad stuff.

An update on Noni: Tests tomorrow

Posted on by
1

I just unlocked the two posts that were previously password-protected and private. They are:

Again, I apologize profusely if anyone felt like they were being kept out. I just did not want my cousin to read about it here before her dad had the chance to tell her. It would have been a shitty way to find out. At the same time, I needed a place to let out my feelings. Password-protecting these posts was the only way I could do this without inadvertently hurting her. I’ve been texting her all night. She found out Monday. I so wish she wasn’t so far away so that I could hug her.

So here is the deal. My Noni — Dad’s mom, Popi’s wife — has been diagnosed with breast cancer… again. She had it when I was young and beat it relatively quickly, if I remember correctly. I got the news a couple of weeks ago, and I am still honestly in shock.

Tonight Mom told me that Noni is going for all of her tests at once tomorrow — PET-SCAN, blood work, etc, etc — and will see the doctor for the results on Tuesday.

The waiting game begins.

I am not good at waiting. I am by nature an impatient person. Also, my Noni is my entire world. I am pretty shocked and shaken.

But I have faith in my family. We’re a close knit group, and we have each other to lean on. Whatever those test results say, we’ll still have each other.

I just hope that I can still have my Noni.

An update on Noni: A surgery date

Posted on by
2

Noni has been approved for the state insurance. They’ve scheduled surgery for the 28th to remove the tumor, and are scheduling further testing to make sure the cancer hasn’t spread anywhere else.

I’m still in shock, honestly, but am taking it a day at a time. It feels like someone’s fucked up joke, and I am fucking terrified.

Every little thing is gonna be all right

Posted on by
4

This is my message to you: No matter what’s going on, no matter how bad it is, it’s going to be okay. Hang on to your support system, even if that support is a pen, or guitar, or whatever. In my little corner of the world, we’re getting poured on — hard. But I have a wonderful family and the best friend I could ask for, and I’m going to be okay.

I might not feel like it right now — in fact, I’m fucking terrified — but I have to believe that everything is going to be okay.

If things are rough in your corner of the world, let’s hang on to each other. We’ll be okay, as long as we have each other. Vent away in the comments, or email me. I’m listening.

PS: If you want the password for my post, The C word again, just shoot me an email at elizawhat@gmail.com. I don’t care who reads it; I just password-protected it because there are still people in my family who don’t know what’s going on, and I thought a blog would be a shitty way to find out. Like I said, though, it’s open for anyone. I’ll remove the password as soon as I know that the people who don’t know yet are in the loop. (Really it’s just one person I’m concerned about, since she lives out of state and I’m not sure if she’s talked to anyone yet. Please know, also, that I’m not purposely withholding this from anyone. In this case, I just feel like it shouldn’t come from me, if that makes sense. I did the same thing with my first post about Popi, though I didn’t have to password-protect it because I couldn’t even write about it for a while, and by the time I could, everyone who needed to know, knew.)

Hugs and love to you all.