Thursday, December 6, 2012

Square One: Taking a Few Steps Backwards

Getting right to the point...

Spencer, ear infection and all, and I went downtown to his clinic yesterday. He's up to 19 pounds 2 ounces (Sully isn't far behind), no fever, good blood pressure. But his blood work wasn't great. Not horrible but not what we want.

Both his platelets and infection-fighting white blood cells have dropped and the blasts are still showing up. The good news, the only real good news, is that there aren't more. The percentage has stayed the same. But they're still there, numbers are still dropping, and we still don't officially know what's going on. These results aren't something you can ignore.

So for now, he just keeps having weekly blood work so we can "connect some dots". We need to see a trend whether it be everything getting worse or everything getting better. We can't stay in limbo. But luckily, the upside to going every week is that they will catch anything they might need to SO EARLY. His doc said they may have done the bone marrow biopsy too early but they didn't want to miss anything. This means there could possibly be a repeat biopsy in a few weeks or after the holidays.

We're back at square one.

He didn't cry when they took his blood. He hasn't been lately. His doc said its sad when kids get used to all of this. It's not something you want them to get used to. Not something they should have to get used to. But it's better than holding my son while he's screaming because they can't find his veins. Still, I would trade anything for him not to go through this. And for us not to be at this weird in between point. I want it to resolve but have a funny feeling it's not heading that way. Like they're waiting for the Leukemia to develop.

But I was wrong before. Happily wrong!

He can have his flu shot booster but no more vaccines until his Oncology/Hematology doc gives the green light to his Pediatrician. We need to keep him germ free. And I want to keep him happy, which isn't hard to do. He's the happiest, goofiest boy I've ever known
and I love that about him. I love that he's still unaffected after over a year of this garbage. Todd and I are plenty affected. No need for him to be.

I spent a lot of yesterday upset. I shouldn't assume the worst but I hate being back at square one. Spencer is staying home from the sitter today due to his ear infection (his 1st, went 16 months without being "sick") and I know hanging with both of my boys will make me feel at least a little better. And speaking of my boyS...

Sullivan had his first vaccines this week and handled them like a trooper. He's 12 pounds 6 ounces and 24" long. His doc said he's TALL. 90th percentile. And 75th percentile for weight. He's a sturdy dude and is looking great! But did you know it's normal for a kid on boob milk to not boob for 11-14 DAYS??? And that leads to what I call "an unavoidable ass explosion". I'd feel bad for him if he hadn't actually seemed to be enjoying himself being all poo'd up! And I mean POO'D UP! To his NECK! It was both disgusting and hilarious. I'm totally in love with my little bruiser. Especially now that he's smiling and laughing like a maniac. My heart melts.

But does Sully lose out during all of this? He is also my top priority. He's NOT just a "speaking of". Not at all.

So there you have it. A bunch of drama for the holidays. Still hoping for a resolution so we can get on with our lives. I don't want this mess to be what defines us. I'm tired of it.

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