HAMA+

I’m having difficulty finding the time to do a real update, but I at least wanted to let everyone know what was going on. Eli has once again developed an immunity to the 3F8 treatment (meaning he’s HAMA positive). That means there is no point in doing another round of 3F8 at this time. The team decided to move on with the last part of his 8H9 treatment, which calls for several rounds of Temodar (oral chemo) and more Accutane. We got the HAMA positive news on Tuesday night and by Wednesday, our amazing pharmacist (Jake at Somerset Pharmacy in Ames) had the Temodar for us and Eli got started that night. Eli will be taking 50mg of Temodar (4 pills) once a day for 42 days. Then he does 2 weeks of Accutane and then another 42 days of Temodar. This goes on for quite a while. Somewhere around November 5th or so, we will do another HAMA test and see if his HAMA level comes down at all. Anything above 1,000 is HAMA positive and Eli was somewhere between 3,000 and 4,000 (it certainly could have been worse). If his HAMA level hasn’t decreased, Dr. Kramer says we will likely start an antibody called Rituximab, which is used to lower HAMA levels so once Eli becomes HAMA negative again, he can resume the 3F8 treatments.

So for now, we stay home and won’t be heading to NYC any time soon. Eli has been getting in FULL weeks of school and things are going really well. We are enjoying watching our Cyclones have a promising season and the Hawkeyes having an amazing season (if you watch either team, you’re likely to see an Eli bracelet on some players’ wrists). Thank you for all of your prayers for Eli and for his little friends going through the fight. I know this has been going on for a long time, but we still need your prayers just as much today as we try to ensure that all of Eli’s disease is gone and stays that way. Thank you so much!