Brock Rocks

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.

20120622-214036.jpg

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10 Comments »

  1. Praise God that your precious boy is in remission! One of my grandsons, born at 29 weeks, had a g-tube from the time he was 2 months old until he was 3 1/2 years old.. He never learned how to suck, so the muscles used to chew got tired easily and it was easier to use the g-tube. My stepdaughter brought in a behaviorist doctor to work with him when he was 2 1/2 years old until he was 3 years old to break some of the things he would do to get sympathy, push his mothers buttons, etc., to be fed through his g-tube. It was a real battle. Meals were more of a chore and not fun for the family. Meals consisted of not being able to talk to him except to tell him to take a bite, show me empty (he would hold food in his mouth), take a bite, over and over again.The specialist said the only reason he was alive was because of his fighting spirit. He was at the bottom of the charts for height and weight. When he turned 3, he started asking when he could have his “button” taken out. Once he realized it could be taken out if he would eat, he started eating. There would be one step forward and two steps backward until his eating issues were resolved. Now, he eats like a normal child. He also had sessions with a speech therapist and occupational therapist to learn how to chew, swallow, and all the things we take for granted when we eat. I pray Brock will want to try to eat and will enjoy eating so he, too, can have his g-tube removed.

    Comment by Valerie Olmstead — June 22, 2012 @ 9:19 pm

  2. I have been following your story since the start and i just have to say… you and your family are one of the STRONGEST people i know!!! im SO happy to read all this progress! I’ll continue to follow y’all! GOD IS GREAT!!!

    Comment by ashley watts — June 22, 2012 @ 9:43 pm

  3. What beautiful family! You will always be in prayers!

    Comment by Deborah Smith — June 23, 2012 @ 4:42 am

  4. Oh Vanessa, what a trooper you are and what a GREAT GOD we have. My prayers are always with you and I know that God is in control of all things. Your comments were very enlightening. The picture is beautiful. Your mother would have been proud of you and your family because she did an awesome job raising you and your sister. How is your father doing? I hope well. Love you, Olga

    Comment by Olga Pruett — June 23, 2012 @ 6:39 am

  5. Brock is a true super-star!! I pray for you and your family daily. I can’t imagine all that you must go through ever day. Brock is so blessed to have you as his mommy (and Jay as his dad). You have a beauitful family! I admire your faith and strenth. Keep keeping on. Stay gold. ; ) A wise woman once told me this.
    P.S. I know exactly what you are referencing.. Favorite show.ever!

    Comment by Jennifer Sims — June 25, 2012 @ 8:12 am

  6. Thanks so much for this update! And for the family picture — your kids are all just so cute! I hadn’t ever thought about how Brock’s cancer would affect his eating but it makes sense. What a trooper and a fighter he is. We’ll continue to pray for all of you! Love and prayers 🙂

    Comment by sedutcher — June 25, 2012 @ 9:42 am

    • Thanks Susie! I hope your sweet family is doing well!

      Comment by Vanessa — June 27, 2012 @ 11:20 am

  7. thank you, Vanessa, for the update and beautiful picture. You helped me get my mind off my own troubles of the day. Maybe Brock would enjoy finding out about the chimpanzee @ the OKC zoo who also had a very rough beginning. She has an amputated arm, but when I looked up her story on their website, I found out the story had numerous chapters. She was born prematurely to an elderly mother who they didn’t realize was pregnant. Then she was diagnosed as failing to thrive at a young age, because her Mom’s milk didn’t give her enough nutrients. The zookeepers started feeding her formula but, like Brock, she wasn’t interested in eating cause she hadn’t learned to enjoy it. So the zookeepers had to make monkey noises, and do all kinds of things to make her want to eat! They didn’t want her to bond with the humans, cause she needed to go back to being with the monkeys. So, when she was reaching through the cage being friendly with a grown-up chimp, the grown-up took hold of her arm and accidentally pulled it out of socket. This resulted in the partial amputation, cause her little arm wasn’t strong. I was so inspired to see her playing everywhere, making accommodations for her handicap.

    Comment by Carol — June 26, 2012 @ 7:11 pm

    • What a neat story! Thank you for sharing it with me! Brock loves to go the zoo. We’ll have to look for her next time we go.

      Comment by Vanessa — June 27, 2012 @ 11:21 am


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