Monday, June 23, 2014

We are enjoying God’s blessings tonight as Eli’s cancer is continuing to respond to the chemo treatment. The lesions have shrunk more, and his spine continues to be clear. They are really having to hunt for the spots, and it may just be one spot at this point. You would think I could remember that, but we look at so many scans over all the months, and I just get lost some times. Eli’s oncologist seemed genuinely pleased with the response, and said that Eli’s body - all of his chemistries and organal systems - was handling the chemo extremely well. He seemed genuinely pleasantly surprised at how well he was doing over all. We are so relieved, and mindful that we are in the Exceptions to the Norm group of kids so far for relapse. I am grateful for your prayer efforts as they are obviously being heard. I was really worried this time as we know that we are promised nothing with this treatment, so any results that keep us moving in a positive
Trying to wake u after anethesia
direction is exciting relief. The Onc was going to move the scans from every two months to every three months, but I think he saw the anxiety in my face, so he kept the checks at two for now. So, that made me feel good that he was comfortable checking him less. But, this monster is so aggressive that it can do a lot of damage in a month, A LOT! We just can’t play catch up with this thing. Some have asked me how long Eli would be on this treatment and I have always answered “for as long as it is working.” Which is true, but really it is either until it stops working or for about two years (if his body can take it), which ever comes first. The doc asked me a lot about school, and about his social interaction, emotions, and wanted to make sure that he was being evaluated at St. Jude for cognitive changes. So, that also made me feel good that he seemed to be thinking about some longevity issues, whereas before he has seemed to have more of an attitude of just keep Eli happy,

don’t worry about all that other stuff. So, we are flying high tonight, and will ride it for as far as it will carry us. Caleb and Hg have been good, and it was nice to have Hg here for when I had to be
 with Eli in sedation recovery. Caleb can’t go back there, and sometimes it takes a while, like today. I thought we would never get him to open his eyes. And, twice today, I caught StJ with mistakes - which is unusual both in me paying attention enough to notice and in St. Jude seeming a little off its game. Eli has a programmable shunt. It is a little tube that runs from his brain through the skull, down to his torso that relieves fluid build-up on his brain. It is programmed, or set, to pull the least amount of fluid. When he has an MRI, the magnet changes the setting. So, we always have to have the NP put it back to the correct setting. They did not have the correct final setting, so I had to ask them to come back and fix it.  So, glad it is not major brain surgery to keep that setting write. Thy just use a little magnet to turn it. But, we are so thankful to be coming home tomorrow. Please, remember to send letters in June to St. Jude. The details are on the blog side bar.

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