Sunday, June 5, 2011

Round 2 of the Antibody Treatment

Last week William spent Monday and Tuesday at UCSF under observation while his IL-2 infusion was started. He was then sent home to finish the remaining time of the continuous 96 hours of infusion. A home health nurse came to the house each day to take vitals, draw blood for labs, and change out his infusion bag. All stuff I could have done for free, but sometimes we just follow the rules. He received a low-dose of IL-2 which is basically a drug that helps boost his immune system in preparation to receive the antibody infusion starting tomorrow (Monday). Remember, the antibody flags the neuroblastoma cells as bad so the body's immune system can attack and kill them. All went about as planned; William was tired, felt a little crummy, and struggled to eat large quantities of food to gain much needed weight. Then the unplanned hit. When his infusion finished and I disconnected him, he spiked a fever of 103 degrees F. This can be normal due to the IL-2, but we can't take chances that it could be an infection elsewhere. We called UCSF and then headed to our local hospital where William and I spent a leisurely 5 hours getting antibiotics and labs drawn. Ryan and I were supposed to be out of town on a one night getaway that night, but our plans and babysitter fell through the day before and we couldn't have been more relieved and happy they did!

In the morning, Ryan (it's his turn) and William will be heading back to UCSF until Friday to get the antibody again. However,William will also get a high dose of IL-2 at the same time. The two drugs do not play nice. We've been warned it will likely be even more unpleasant than last time, but we're switching up some of the pre-med dosing and adding in an additional pain med that is more specific to neuropathic pain, Neurontin, in hopes it will go more smoothly.

The only other anxiety causing event is the probability of an NG tube for feeding (up the nose and to the stomach). William started taking an appetite stimulant, Periactin, this past week, but we have yet to see striking results. The doctors feel he needs to gain more weight in order to better tolerate his treatments. Ryan and I agree. He is teetering quite close to his lowest weight again and that ain't much. So although William has serious aversions to tubes of any kind shoved in any orifice, (he's a smart one!) we've explained that it may happen and it will help him feel better overall. He's a trooper and made only one request: Versed. See? He really is smart. He can request drugs by name that prevent any memory of events!

Here's to another week of hospital living. May it pass quickly and be uneventful.


  1. I also hope the week passes quickly and uneventfully- at UCSF and in Folsom. You and Will both have ammased quite the medical knowledge!!Loves-

  2. Julie: I hope this week has gone well for William. I had a friend that took Neurontin for severe pain and it did help her. So I'm hoping and praying that the combo of drugs helps William!!

    No fun on the feeding front, it sounds like. It certainly isn't for a lack of trying from you! :) I had to marvel that William knew to ask for Versed by name for his NG tube insertion. He's no dummy! (And let's face it, these drugs today are, for the most part, so amazing. I still remember when Natalie had her BMT, Zofran was relatively new. The RNs there at Stanford said before Zofran, you would walk down the halls of the oncology unit and could hear them all getting sick. After Zofran was approved, it was like a miracle.)

    Love, prayers, and hugs to you and your family, Julie!!