Thursday, September 19, 2013


I feel thankful this Thursday. It might be because our boy is still acting jolly and active, or the gorgeous fall weather, or that front porch sitting is probably my favorite thing to do (and we do a lot of it these days)... whatever it is, I am filled with gratitude.

Watts and I met with our new pediatrician here in Greensboro and were able to do a CBC without traveling all the way to Winston Salem. Of course, I nearly had a panic attack taking Watts into a germ-filled doctor's office, but I calmed down after they whisked us straight back to a room (per my request). Hopefully, once I get the thumbs-up from our insurance company, we can start going to the pediatrician when Watts only needs labs done. It probably saved me 2-3 hours in travel and wait time. And thank you, Cathy, for hanging out with Piper!

Watts' labs show that, while his body does seem to be recovering, he is not ready to start the Consolidation round tomorrow. His white blood count and platelets have doubled but his ANC has dropped to 150. A little perspective: I've read that a normal child's ANC is somewhere around 3,000-5,000. An ANC below 1,000 means a child is neutropenic. When the ANC is lower than 500, they are considered severely neutropenic and at risk of developing a serious infection.
We'll hang low this weekend, check his CBC again in a couple days, and hopefully he'll be ready sometime next week.

Commonly asked questions:

Why does he have a tube in his nose?
Watts has an NG tube in his nose as a preventative measure. He first got it when he was in the PICU intubated and sedated and we've opted (and have been strongly encouraged by our doctors) to keep it in ever since. He has maintained his weight since all of this started four months ago but also hasn't gained any either. We have been told by his doctors that the kids with great nutrition tend to do the best during treatment, so we have kept the tube in and used it whenever his appetite drops or when he has mucositis in his mouth, etc. We also can give him all his oral medications down the tube which has been a huge plus!

Does he eat anything by mouth?
Watts still nurses when he feels well. When he doesn't, I pump and put it down the NG tube along with Pediasure. He also drinks water out of a sippy cup but will not drink milk or juice. He loves Baby Goldfish and Lance Peanut Butter Crackers. He will try most crackers but will not eat anything that is sweet or cold or pureed. He also wont eat anything off of a spoon. Or any fruit. He likes boxed macaroni and cheese and homemade spaghetti. I've tried mixing in pureed veggies in with the noodles but have not been successful with sneaking them by him. We have been told that this is normal for babies on chemo and are trying to not stress about his food aversions.

Can he walk yet?
Not yet. We have been told to expect delays but overall have been really impressed with Watts' determination and drive. He is crawling, pulling up on things, cruising, and even attempting to say some words. 

1 comment:

  1. Just think, when this is all over, Watts will have a grand old time finding all the new tastes that he thought he hated when he was on chemo. It will be a whole new adventure for him! :) I'm catching up on you all since we were out of town and starting school here. Feel a little like I'm riding the huge waves with you as I read. What a ride you're on. We constantly pray for you all. May God be glorified through all of this. Love, Jenny


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