Raging New Year

Happy New Year!  

Siena and Sinatra partying on New Years Day.

Being at home this week has been great. We are adjusting to giving meds and managing through Sinatra's newly developed "roid rage" and crazy appetite. One of the side effects to her meds is that she may become irritable. Ha! If by irritable they mean screaming at the top of her lungs in a rage and pointing at her high chair because she wants to eat yet again, then I guess that's irritable! It's unbelievable the amount of food this child is putting down. She even bit Jenn during one of these rage sessions most likely because we were out of milk (Sinatra's currently favorite thing in the world). We have dubbed Sinatra 'Baby Hulk' thanks to the rage.  The rage is not only weird but thankfully we find there is a bit of humor when Sinatra rages, (although we feel bad laughing) and when we laugh it helps bring her rage down to a mild simmer.  By day the rage is tolerable, but at night when Sinatra is sleeping it is becoming more difficult. Sinatra is normally great sleeper and would normally sleep from 7:00PM to 6:00 AM.  However now, she wakes up she has trouble falling back asleep because she  realizes that she is starving. Poor Siena who shares a wall with her is not liking it at all. We really hope we can figure out how to help her and get back to our routine because we are sure to be tired after multiple days or weeks of Baby Hulks middle of the night rage sessions!

As expected, the Cornelius household had an uneventful New Year this year. Fortunately, we were thrilled to ring in the new year with some good news. We told you before that Sinatra also has a genetic mismatch (MLL) and this makes her and is considered a very high risk Leukemia patient. We also told you that one of the major milestones is our Day 29 (about two weeks away) Minimum Residual Disease (MRD) test.  This test will tell us the percentage of leukemia cells that are in Sinatra's body. What we are looking for at the end of the first 29 days (which is about two weeks away) of treatment is a number below .01 . So the news is that just 8 days into treatment they did an MRD test and she is already at .071! We don't know what our starting point was but when Dr. Huyhn said it could be a 25 and it turned out to be so low this early, we were excited. Lets hope the trend continues downward. This is great progress and shows that the meds are working so we are thrilled.

In other news, Santa comes to our house tomorrow night, Jan 4th, so we have been scrambling to get caught up on things that we missed while we were at the hospital.  We had to finish some Christmas shopping and wrap everything but we are now ready to go. Keeping the Christmas jig up has been hard but we don't think the girls have noticed. If they were any older we think we would have been in trouble. Even though our tree is brown and an absolute fire hazard we are ecstatic that with all of the recent events, we are still able to celebrate Christmas as a family at home. So to all, Merry Christmas!