March IVIG Infusion

In the oncology world you get to be kept in isolation until you test out of a virus.  Which means this week even though Max is feeling just fine and having no symptoms he was kept in isolation all day.  He did get another round of virus testing but this time it was sent to the mayo clinic for results so we weren't able to test out today.  Which meant that we got a very private room in isolation, however I felt bad for the nurses who had to completely gown up every 10 minutes when his vitals were checked and of course we got a wonky machine that seemed to alarm as soon as the nurse left the room, I know how to silence the alarms and take his vitals and offered to help but of course they have a new charting system and every little incident has to be properly recorded at bedside.  We got lots of anti-nausea drugs on board very early today and it seemed to help a lot, we also got one of our favorite nurses who just so happened to get stuck helping with clean up last month during his puke-attacks. So she kept an extra close eye on him today so we didn't have a repeat of what she called the "chocolate fountain".  The anti-nausea drugs also helped make him sleepy so he was able to doze off, although as we turned up the rate, he would quickly wake up and let us know his tummy hurt, so we would turn the rate back down and he would become more comfortable.  It is so nice that he is getting older and can begin to communicate these things to us. 

It was a busy day in the infusion clinic which is attached to the hematology/oncology clinic.  An unsuspecting sibling of a patient walked through the waiting room with a rash that turned out to be chicken pox, you can only imagine how quickly the ward shifted into contagion mode.  The drug of the week was IVIG.  Every oncology patient that could have possibly been in the hospital that day got an infusion to boost their immune system, so the unit was a well oiled machine when it came to Max's regular infusion and all patients were checked for spots and educated. 

His labs are looking really good, his lymphocytes and ANC numbers have all started dropping like we have been hoping, the chemo seems to be working, we are hoping for more of a decrease and hopefully that will come in the upcoming weeks. The chemotherapy drug that he is on should keep the attacking antibodies at bay for 4 months. Which means that we are ready to start trying to taper his steroids to actually see if this agent is going to work for Max.   We would appreciate your prayers as we do this,  we are really hoping that this new treatment worked and will hold for awhile and we won't see any breakthrough symptoms. We thought we went slow last year with our taper, but now we are going even slower.  We had originally hoped to have him tapered over 4 months so that he would be off steroids before the new antibodies would begin multiplying, but our oncologist told us otherwise, realistically we shouldn't  expect to be off the drugs for another year or so.  Which we were prepared for this given that many kids in this situation remain on steroids for 5-7 years. This means weekly lab visits, dr appointments, many many therapists working with him to watch for new symptoms, monthly IVIG infusions, and another year of a weakened immune system. 

Max did have a harder time getting his appetite back after this infusion, it took a good 4 days before we saw him back to normal.   This brand seems to give him more of the flu like symptoms, which is completely normal, but we may consider trying another brand soon to see if it works any better.  We are up to 3 supplements a day with pediasure or carnation instant breakfast, hoping to get the majority (1000) of his calories from supplements,  he also gets them topped off with whipping cream.   He is very good about drinking them, I can hardly stand the smell of them when I make them, but as usual he is so compliant.