Thursday, August 27, 2015

Done with the trial. His platelets
were so low that his port would
not stop bleeding, so it is coming
through his shirt.
Victory is the only option! Eli completed the third and final cycle of the phase one trial of methotrexate into the fourth ventricle at Children’s Memorial Hermann today. His exit MRI was moved to Monday, so we have the weekend to enjoy… or be tortured. We had an early morning with an appointment with the oncologist at MD Anderson to check Eli’s bloodwork. We haven’t checked it in three weeks, and I was a little curious because he seemed a little fussy, a little pekid, and he’s had to have a transfusion before. Sure enough, his platelets were low, really low. So, after having his blood drawn at MDA, we went to Memorial Hermann for his last treatment, then back to MDA for a platelet infusion. It was a long day, and Eli was very stressed this morning, cried with treatment, and about having his port accessed (and what really stinks is that they didn’t get something they wanted to get, so we have to go back in the morning for him to be accessed again.). But, we are done with the trial, and he has made his contribution toward a better treatment for victims of childhood brain cancer.

We went to the zoo this week… twice. Eli is pretty bored with the other kids not here (although he will only sit on the couch, but he loves the activity of them around), and I am not a good playmate or very entertaining. He really just wants to “go somewhere” all the time. I do not. We tried twice during the summer when the others were here to go to the zoo, but literally could not find a parking space. So, school finally started back, we were able to get a parking spot easily. After we were there an hour, a storm chased us out. Eli wanted to wait it out, but it was
nasty coming. The treetops were whipping around, the monkeys started yelping, and if there is one place that I do not want to be if a storm comes through and blows all the cages open and breaks the snake habit glass, it is the zoo. He was very disappointed, so we went again on Wednesday and it was a much better day to go. It was actually cooler on Wednesday, I think it got down to 95. We have been using the wheelchair as much walking as we have been doing, so that helps us get places faster, and keeps us in better moods.

Thank you for staying with us through this trial… a trial in so many ways. Someone recently wrote that she wished she could do more than just offer prayers, but there is nothing more than we want or need or that is more useful to us. I hope to know some results late Monday.

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