Tuesday, May 30, 2017
It's been a busy month. Eli completed his cycle of cychlophasphamide with the indoximod without any issues until Friday. He had to have a hemoglobin transfusion one week after completing the cycle, and his
platelets are currently pretty low. But, the last month went by without any issues, save two short episodes where his hand felt tingly. The car show on the 20th was not as robust as we would have hoped, but it was enjoyable and we are always overwhelmed at the interest and support of the car enthusiast community, and our local community. We have delivered some Siblings Sacks to hospitals to give to newly diagnosed kids, and our foundation participated in a couple of fundraisers locally. We had been making plans to go to Michigan to be at the June 3rd car show that the UAW Local 3000 is hosting for the foundation, but Eli’s platelets are too low to travel, so we are waiting on those to come up, or
for him to have a transfusion. Sadly, the most devastating news is that his MRI last week showed “extensive global progression” in his brain and spine, growing at a faster rate than in the past. The tingly feeling in his hands most likely a symptom of spine progression. Plus, his kidneys are beginning to struggle, but not sure if that is just from the years of chemo, or simply because he is not drinking well - seems like a simple fix, but he takes bird drinks when asked to drink, and sometimes just ignores me when I ask him to and I don’t notice. We will be discontinuing the trial with Dr. Johnson, but he remains the main resource and catalyst for pursuing something for Eli. The most immediate issue is getting his platelets up, and searching for any non-systemic chemo options because his body is just so battle-weary. Otherwise, today, he feels good, he is energetic, engaged, and participatory. He has been excited to see the camper that we picked up today for our trip (that is postponed), and is eager to get to park in the RV Parking at Cracker Barrel. That’s the first thing he said when he saw it. I will update as soon as I can of any changes with Eli, and any changes as to any decisions that me are making. As always, sincerely, thank you for your continued prayers.