Tuesday, May 10, 2011

It Ain't Fun!

The antibody therapy has begun and it ain't fun.

Here's a quick overview of what is happening:
  • Daily shots to boost his white bloods cell count which fights bad cells.
  • The antibody in infused over a 10-20 hour period.
  • The antibody attaches to the neuroblastoma cells and flags them as "bad" to the body. (Since the body produces the cancerous cells, the body's immune system doesn't recognize it as bad or foreign on its own)
  • The white blood cells then seek and destroy the flagged cancer cells.
The infusion affects the nerves and can be quite painful. The key is to manage the rate it is infused and the dosing of pain medicine. It cannot be infused faster than 10 hours or longer than 20 hours and a new round starts every 24 hours for four days.

William started out as the trooper he is. This is always a concern because he is so tolerant of pain because he is so used to feeling crummy. The rate of infusion started at 5 which is the 20 hour plan. 10 is the max rate for 10 hours. (I don't remember the units they refer to, but you get the picture, I hope). William was doing well and after an hour, was up to 9. The nurses were impressed and checking his vitals every 15 minutes when suddenly his heart rate skyrocketed and he started moaning and grabbing his chest. Several nurses hurried in and stopped the infusion, reassessed his vitals and explained that he needed to push his pain button whenever he felt pain. The sweet little boy just though he could tolerate it. The rate was decreased in increments, but within another hour, due to his pain, we were all the way back to 5, where we started, in order to get the pain moderately under control.

We coached him on how to push the pain button often and he improved. However, sometimes he was pushing his morphine button more than it actually dispenses the medication and getting frustrated that the pain wasn't decreasing. Then he would stop pushing the button thinking he would just have to ride it out. What a trooper! I keep having to remind him to keep pushing it because it will eventually dispense. It has parameters set to only administer meds every 8 minutes to avoid an overdose.

So obviously, Monday night was rough and neither of us slept much. William made up for it by sleeping until after 3 PM today. He woke up to eat a bit and watch part of a movie. Since the rate was decreased so much and even stopped for part of the time, he was given the antibody over the full 20 hours and didn't actually finish the entire amount. He had a brief break before round 2 started up. So far he is tolerating it well. Sleeping through it helps. His basal morphine (continuous infusion) has been increased and he gets more each time he pushes the button. The rate of antibody infusion is being set no higher than 8. He's at 8 right now and holding.

The side effects he is experiencing are normal: fevers, pain, swelling, and low blood pressure. He is getting precautionary antibiotics because of the fevers and additional fluids to help the blood pressure.

Last night during all the chaos and discomfort, I had a mommy moment where I second guessed our decision to be part of this treatment. I had to remind myself that we have had feelings of peace when making this decision, knowing that it would likely be hard. Ryan and I have felt strongly that we should fight this cancer as aggressively as possible since it is a hard one to treat. If his cancer returns in the future, we will know we fought it as hard as we should have the first time around. The nurse must have seen the anxiety and concern in my face because she calmly reassured me that this was all normal and that she's seen this treatment really work.

On a funnier note, I am learning that all frozen/microwaveable meals are not created equal. I think the presidents of these companies should be on the tasting panels. Or maybe they should think about creating tasting panels. Bleck is all I can say about some Tai Pei sweet and sour chicken mess. Thankfully I discovered the Jamba Juice that was under construction across the street during William's transplant is now done. Hallelujah! Although the 4 block walk to the other one was pleasant too. William will be pleased. I'll tell him when he wakes up.


  1. You are both troopers. I guess a timed test a day is a little out of the question for this week, right? :-) Noah sends William a big, smiley hello and can't wait to see him next week.

  2. Trooper for sure! We are thinking about you.

  3. Yeah, that doesn't sound fun at all. I hope the week goes by quickly! We are praying for you both.
    Soren told me on Monday he had a good idea for a name for our baby...Julie! :) (Hey, you can understand where he'd get confused, with all the names that can go both boy and girl.)

  4. William never ceases to amaze me..he is one strong, courageous kid. I'm thinking of you both this week. Tell Will I'm missing our Yahtzee multiplication game :-) Hugs.

  5. You guys are so incredible! Way to go super William--I think about you guys all the time and you're in my prayers!

  6. Julie,
    A bad hospital day AND bad food! That is too much! I am so glad there is a Jamba Juice to save the day. If there is anything I can do, please call! You and William are amazing. The Bahouth Family is praying for you. Most importantly, happy birthday. Although I don't get to celbrate WITH you, my heart celebrates for you. I'm so glad you were born and I get to know you! Sincerely, Jayme

  7. You are all troopers! Hang in there! Praying this well goes successfully and quickly and with as little pain as possible! Wish I lived closer to bring you some homemade meals into the hospital!