Wednesday, May 6, 2015

I often feel like I am proof of God’s sense of humor. Such bothersome, frustrating events and outcomes that cause no real harm drive my days, and really leave no emotion but laughter with which to face them. I can not believe it is Wednesday night already. I feel like I have not been home since I’ve been home. We got in late Sunday night, and prepared for field day at school with Abbey and Caleb on Monday. Remember, we left Houston Sunday morning, the last day of his cultures growing that were pulled due to his fever on Thursday. It is pretty standard procedure to draw cultures when a kid with a port, or line, or lumbar puncture has recently been accessed has a fever because that could be a sign of a bacterial infection, due to contaminants that has been
introduced directly to his blood stream (germs found a way to get into his body when he was accessed). They can know from tests if there is a bacterial infection, what and where it is. But, a bacterial infection is serious and can escalate quickly. So, while waiting for the 48-hour test, he is put on a antibiotic just in case.

Eli was showing no sign of anything. Was in a good mood, went to field day, even wanted to sit with his class while they ate lunch, which is a pretty big deal because he is not very friendly. But, this is the only school class that he has ever known, (his only full year of formal schooling is kindergarten. He was diagnosed after half of first grade. Treated until the second half of second grade. Relapsed after the first half of third grade, and then homeschooled), and he feels the need to belong to a class like other kids. So, I think, he still feels a connection because he knows he is suppose to have a class, even though he is far behind them academically and physically. And, they are so sweet (and crazy wild). When we walked up they were on the one of the blow-ups, and started yelling for him and cheering and chanting his name. He tried to hide behind me, and I could tell that he was trying not to smile. We do love our
school, the people at the school, really, and we have enjoyed what involvement we could have with the homeschool cover. It was incredibly impressive, and we learned so much. The kids there that we encountered where just outstanding. Eli got a huge care package, huge, from some kids there and a family that we have met. And, they don’t know him at all, but just blew him away with snacks and toys. The girls in Hannah Grace’s class have been so nice to her, and have been good to include her in outings.

So, back to Eli at field day. MD Anderson called me just before lunch to tell me that something had grown in the cultures. And… get this… “it was odd.” I am tired of Eli being an anomaly at MDA.
 Both blood from the arm and from his port was showing a contaminant. So, they wanted the cultures to be re-drawn. Well, the only place that would culture a port is St. Jude… yep, St. Jude, our LOCAL hospital for children. I could not have even one day, without cancer. So, we dropped everything, and headed to the St. Jude clinic. Eli was not at all happy about any part of it, except getting to go to the clinic to see everyone there. We had already planned to do that, just not officially.

So, they drew the cultures again, which is strange because he is on a antibiotic, so it should be clean by now. We will find out tomorrow. The other strange thing is that his immune system was really low! We were told that methotrexate wouldn’t really affect him that much. But, of course, we can't be part of the majority. Then suddenly his nose started slowing dripping blood, and was blowing out lots of blood. I took him back because that could be a sign of low platelets. His immune system was a lot better, but everything else was still low. Not enough to infuse.His nose got increasing worse las night, and he spit up some blood this morning (flem-like blood). So, yep, for a third day in a row, we headed over to St Jude, I also had two appointments for myself, the kids had dentists appointments, and I had an interview with the Decatur Daily this afternoon. His immune system was much better, but I think that is because he is fighting a cold virus. I think the body upped its white blood cell count to go fight the virus. Hg and Vic both have colds, and Abbey is saying that she used to have one. He still seems to feel pretty good, and has no other symptoms. We will go Friday to check his chemistries before we travel back to Houston.

We hope to know how Eli’s cells are doing Friday, but I don’t know if we will get to or not. They are not suppose to be ready until Tuesday. He should have a baseline MRI on Monday.

Thank you for the continued prayers, and for sharing Eli with your friends and congregations.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.