Where we’re at
It’s been longer than intended for this post, but we’ve been scrambling around, trying to get our feet back underneath us. Our 2nd meeting with Dr. Foreman on Tuesday was even more dismal than the first. He had a conversation with Dr. Gore (she’s in charge of the clinical trial we were considering) and they both agreed that Ben was not a good candidate for the trial. Dr. Foreman does not feel that Ben will be able to meet the minimum life expectancy for the trial. He instead strongly encouraged us to begin hospice care, and to live life as full as possible with Ben in his remaining weeks. This was a difficult and devastating conversation for all of us, even Dr. Foreman.
Ben is actually doing quite well, which makes all of this so surreal. His balance appears to be what’s affected the most, but he still continues to skip and climb all over the house. The right side of his body is weaker than the left and he has started to use his left hand more. His speech has become slightly slurred, so he’s had to slow it down a little to be understood. All of this causes him frustration since he must slow everything down, and no 6 year old wants to be slow at anything!
We have decided to begin hospice care only with the understanding that we can continue to treat Ben with homeopathies, as well as, a final treatment option that we are currently waiting for more information on. It’s a shot in the dark, but we’ll take anything we can get. We’re not ready to throw in the towel just yet!
On a positive note, as many of you may or may not know, Ben was not able to feed the elephants on his Make-A-Wish trip (if you don’t remember, this was his actual wish, to feed an elephant). Thanks to Dean’s brother Pat and his associate Fofi, Ben will finally get his wish this Sunday at the Denver Zoo. We’ll take lots of pictures to be posted here later.
We are thankful for all of the tremendous support and prayers from everyone. It’s the only thing that helps us through each day. We’ll post things that you can do to help as we get more organized this next week.
