Brock Rocks

June 27, 2012

The rest of the update

Filed under: Uncategorized — Vanessa @ 11:53 am

You should’ve known better than to believe me when I said I’d be back the next day with the rest of the update. 😉

If you follow Brock Rocks on Facebook or twitter then you probably already know that he had an appointment with his oncologist last Wednesday. He got iv chemo and we talked about a few things that have been going on with B (more on that in a minute). Brock woke up that night (about 2am Thur morning) with a fever, diarrhea, and vomiting. Any time he has a fever he has to go to the ER for a CBC and blood cultures. Jay took him so I could stay home with Reese (having a nursing baby means Jay gets the short end of the straw on middle of the night ER visits). They made it home in a record 2 hours and he was totally fine by the next morning. I have no idea if it was a virus or just side effects of the chemo.

Ok, so here’s what we talked about with his doctor.

his g-tube

His g-tube has been leaking for a few months. We’ve tried a few things but nothing is fixing it. He’s got an appointment next month to go see the surgeon that placed the tube. Jay and I are hoping that he just needs a bigger size. (He wouldn’t need surgery for that – it’s something Jay or I can do). But we need the surgeon to make the call on what size.

his skin

If you’ve seen Brock in person then you know the skin on his arms and face are really red and really dry all the time. It’s been that way for so long that I can’t remember when it started. He’s also EXTREMELY sensitive to the sun. Just incidental sun exposure from walking from the house to the car can cause him to burn. He’s also developed sun spots (age spots) on his arms, hands, and face. His oncologist said “His arms look like an 80 year old man’s!” Lastly he has a couple of moles on his arm that have gotten bigger and darker. SO. We have a referral to see the dermatologist. They can’t get him in until the middle of August. Boo. Honestly, I’m a little worried about his skin.

his size

Brock’s a little guy. I think I’ve told you before that he’s in the 0th percentile for height. That means 100% of kids that are his age are taller than him. Last month I asked the PA that we saw in clinic if we could test for a growth hormone deficiency. And she said no. *Ahem* So last week I asked Brock’s oncologist and she said “absolutely!” So they drew blood for that last week but we don’t have the results yet.

his eating

We talked to Brock’s oncologist about how we felt like we weren’t getting much guidance in this area. She suggested we talk to the psychologist in the hem/onc clinic and that we find a speech pathologist who specializes in feeding therapy. We met with the psychologist on Monday and we have a referral to see a new speech path on July 9th. I’m hopeful that this new speech path can help him but I’m HEARTBROKEN about leaving our current speech path. I love her and so does Brock. She’s wonderful with him. I’m so so sad about it. (As a side note, I haven’t told her yet. For those of you that know her, please don’t tell her until I can talk to her when we go this Friday.)

So those are the things we’re praying about. Please join us also in praying for my friend Tina. Her baby boy Corban passed away on Monday night. My heart is heavy for her and her family.

Thank you so much for continuing to walk with us down this long, long road.

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June 22, 2012

Hi there and FAQ.

Filed under: Uncategorized — Vanessa @ 8:42 pm

Good grief. Where did the last month and a half go? I don’t update because there’s really nothing to tell you and everything is normal (our kind of normal) and then BAM! hit by a bus there’s a lot to tell you.

(And if you get the “hit by a bus” reference you might be my new best friend.)

I’ll be back tomorrow with the lot to tell you part, but I wanted to answer some questions first so that the rest of it will make sense.

Soooo….here are answers to the questions Jay and I get asked the most.

“Is Brock 3 yet?”

Brock will actually be 4 in October. But he’s a little guy and he has developmental delays because he was literally fighting for his life the first few years of his life instead of learning to eat and walk and talk like healthy kids do. So because of his short stature and his speech/cognitive/physical delays most people think he’s about 2.5.

“Why doesn’t Brock eat?”

If you could answer that then you could find a solution for hundreds of kids that don’t eat by mouth and you’d be a millionaire. It’s a combination of things. He was really really really sick – on the verge of death sick – right after he turned 1. He was still nursing when he stopped eating. He never really learned how to eat. And not learning that skill during a critical developmental stage when most people learn to eat makes it very difficult to learn later in life. To compound the problem, he has severe oral aversions. For as long as he can remember, everything that came toward his face was bad: intubation tubes, suction yankauers, mouth swabs dripping with chlorhexidine. To a one year old who has no memory of ever eating and can only remember those bad things, even a popsicle coming toward your mouth is bad. (I could say a lot more about this: about how it’s a neurological issue and he’s not just being stubborn or picky and asking him to “please please just try a bite for me?” will not fix the problem. But I’ll spare you. Just know its a complex issue.)

“If he doesn’t eat then how does he get nutrition?”

He’s fed through a g-tube.

“Is Brock in remission?”

Yes! Praise the Lord! Brock has been in remission since October 15, 2009 – eight days after he was diagnosed with and began treatment for leukemia.

“If he’s in remission then why is he still getting chemo?”

In short, because if he doesn’t, the cancer will come back.

“How much longer does he have to take chemo?”

7 months and 15 days. Not that we’re counting. His last day of chemo will be Feb 8, 2013.

“How often does he get chemo?”

Everyday. He takes oral chemo at home every night and he gets iv chemo in the hem/onc clinic every 4 weeks. He also gets chemo into his spinal fluid every 12 weeks and takes a round of high dose steroids every 12 weeks. He’s been doing this for about 2 years. It’s called the “maintenance” phase.

“Does he still have the fungal infection?”

Yes and he probably will for a long time. Maybe forever. Our hope is that once he’s off chemo his immune system will recover and he’ll be able to fight off the infection for good.

What about you? Are there any other questions you’ve been wondering? I don’t mind answering!

And because this might be the longest most boring post ever, I’ll try to end with a picture.

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