Posted Apr 3, 2009 1:11pm

Chase had a good night's rest April Fool's night and slept in until noon on the 2nd. He would have slept MUCH later had I allowed him. Given that I had to force him to go to sleep at 1 am the previous night, I didn't want him sleeping any later.

Chase's energy level was wonderful yesterday. On the 1st, he had received both a blood and platelets infusion, which really helped his energy level tremendously. When I walked with him, he didn't wobble or seem to be weak in the knees whatsoever! In fact, he took a hold of his IV pole and headed off down the hallway. Actually, Chase got a bit perturbed with me because I didn't have a destination in mind before we set out. I'll know better next time though.

We weren't back in the room for long when his two physical therapists came by to work him over a bit. When he got back, they had him sit on the sofa with me because they wanted him to sit up a bit more than he had been. He wasn't sitting with me long before he stretched out his legs and started to try and push me off the sofa!! Yes, he's back to harassing me. Why? Because he wanted me to turn the TV on, but I would have nothing of it. He read a book of his for a while instead.

Dr.Cooper, one of Chase's oncologists dropped by to visit to tell us that they had received some of the genetic results from his bone marrow sample. It turns out that Chase has a Philadelphia chromosome, which is mostly found in adult versions of leukemia, specifically CML (chronic myeloid leukemia). Also present was Inversion 16, which is generally associated with AML - the type of leukemia Chase has been diagnosed with.

Just to refresh everyone, AML is typically an adult leukemia. Typically, only 10% of pediatric leukemia cases are AML. Even MORE rare in children apparently is the CML type of leukemia, which accounts for 3% of childhood leukemia cases (less than 100 per year nationally). However, given that Chase has BOTH Philadelphia chromosome and Inversion 16 makes his case possibly even more rare. Dr.Cooper referred to his situation as like one of those "case studies" you read about where there are only 3 or 4 annually.

What does all this mean?

First of all, because the Philadelphia chromosome and CML are found in adults, Chase's doctors are going to consult with the adult leukemia doctors at Emory University. There is an existing "wonder drug" called Gleevec, which specifically targets the Philadelphia chromosome. At this time because Chase is responding so wonderfully to the treatment plan they have him on, they aren't going to change a thing. However, they may also include this new oral medication Gleevec to treat the Philadelphia chromosome. At this point, we don't know yet. They are also going to see if we have any records of blood results for Chase from years past so they can check his white blood cell count. Apparently, CML patients can have leukemia for years before it can all of a sudden produce "blasts", which them produce sudden symptoms like what Chase was exhibiting.

I apologize for being unable to more clearly state what is going on, but it appears we are now and a whole new learning curve.

On a fun note, Egleston has a weekly Bingo night that we attended. Chase actually went all the way downstairs and walked to a classroom behind the cafeteria where he played three rounds of Bingo. The prizes are really great for the kids and EVERYONE wins during each round, meaning they keep playing until you win. I'm not sure where the prizes come from, but Chase ended up with a small Lego set and a set of Hot Wheels cars. He did win a third time, but nothing on the table to choose from interested him, not even the DVD The Princess Diaries 2.

From what we were told by one of his nurses, as the holidays grow closer, the prizes get bigger and better and if you're too sick to attend, they have it live via closed circuit and you can still play from your hospital room - cool! He seemed to really enjoy himself and I've got to hand it to Egleston for arranging the activities for the kids.

I was at home with William last night, but I'll update on Chase for today as soon as I am debriefed by Dad.

God Bless!!
The O'Bannon Family