After a shorter than expected stay, and only one day of treatments this time, we are now home from round 4 of immune therapy. Because Curtis retained 4 kilos of fluid over a period of three days in round 3, and as a result ended up in the ICU for two days with fluid in and around his lungs, our doctors felt it would be in Curtis' best interest to only receive a 50% dose of the hu14.18-IL2 drug this time around. We were quite anxious about this as it was obvious this drug was having a cumulative effect on his little body, and we weren't certain how this week would go. Still, with Curtis in remission, this treatment is clearly working, and the general feeling among our doctors, was the more drug he can get, the better. This was our feeling too, until this week.

During the four hour infusion on Monday morning, things seemed to be moving along quite smoothly. Curtis' blood pressure was good throughout, he had no pain or nausea, and was generally feeling quite good. It wasn't until after the infusion was over that we started to see the effects the treatment was having. It started with a full body rash, which was not something we had seen before. Benadryl was given to help control the rash, but unfortunately it also made him tired. After sleeping for about two hours, it was time for a blood pressure check, and we noticed his pressure was starting to drop. Our nurse started doing more frequent checks and at one point he dropped to 70/30. His heart rate was also on the rise, maxing out at about 150 (although once or twice it may have hit 160). Finally, his temperature was taken and he had a fever of 38.8. We were able to get his blood pressure and temperature under control within a short amount of time, however his heart rate remained high for the next twenty four hours or so. By Tuesday morning, Curtis had retained 1.4 kilos of fluid, and was not peeing very well.

Taking into account everything that happened during day "1", we all felt that it was far too risky to move forward with another day, and perhaps with any more rounds. Having made the decision to stop treatment for the time being, Curtis was monitored for the day on Tuesday and for most of today. With the sudden appearance of another rash yesterday, we were at risk of another night's stay, but when it didn't get any worse, we were able to go home.

As for any future rounds, it's safe to say that we do not feel comfortable moving forward with anything more. Our primary oncologist and case manager also feel this way, however Curtis' case is currently being discussed with the study chair. We're not certain there is anything the study chair could say to convince us to move on, but we'll certainly listen to what he has to say.