Monday, January 11, 2016

Eli had a very early morning for his MRI, but the appointment was changed on us a bit. We will not receive results until tomorrow afternoon. He only had his brain scanned today, and then will do the spine in the morning. They split the appointments so that he doesn’t have to be sedated. The last we heard they could not get the two separate appointments, so we expected him to be sedated today. Thankfully, that opened up and he did not have to be drugged for it. He also had an endocrine appointment, and it looks like his cortisone level is low. This kind of thing is pretty normal for kids that have had high dose radiation. We are to see the doctor again tomorrow about it. The day dragged out some, and the boys and the adults are very tired tonight, even though I went to sleep at 9:30 p.m. last night. We didn’t get
 to lunch until 3:15 p.m., and I didn’t want to drive very far because I knew the boys would fall asleep in the car. So, very conveniently, we went three blocks over to eat at the Fish Bowl in the Bass Pro Shop at the Pyramid. It was nothing special as far as the menu was concerned, or the preparation of the food, but it was nice to eat and then walk around a minute just to be able to say that we did something today. My phone has been dead most of the day, so I do not have pictures from the pyramid… Eli was very glad. I will let everyone know the results as soon as I can after our appointment with the oncologist. It is not
until later in the afternoon. I also want to remind everyone that this is a phase one trial with a drug that on paper should affect his type of cancer. There has been success with similar cancers to Eli’s, and some success in the lab…. Similar…. In the lab. As far as we know, Eli may even be the only kid with his cancer on it at all. So, in addition to those two strikes, as a phase one trial, the purpose of the trial is to find the highest, tolerable dosage, not to find out if it fights cancer. They know it can fight cancer to a degree, but they need to know how much of it they can give to a kid without killing him or her, and hopefully accidentally find out what type of cancer is affected by it. So, to have even stable success as far as the cancer goes would be unusual, and, really, an example of providential intervention, in my opinion, due to the prayers that you are so diligent to offer. Thank you for that work that has carried us so very far.

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