Saturday, March 16, 2013

Eli showing his NED muscle
(No Evidence of Disease)
We are NED! I am sorry to be behind on the blog site. It was a whirlwind of trying to finish appointments after we got the good news, check out of the Grizzlies House, distribute cookies, and head home. My phone doesn't allow easy updates to the blog. So, now is the first time I could sit down at the computer. (I will look into doing it from my phone for the next time) The doctor seemed genuinely impressed with how well Eli is doing. I was turning blue and about to climb the walls waiting in the room for him. When he came in he said "wow, just look at you. I mean wow, you look great!" Then he looked at me and said "doesn't he look great?" And looked back at eli. I said, "yes, he does but what about on the inside?" He said again, "I mean wow. " Then the nurse said "I think she wants to know about the scan." YES! I haven't taken a breath in days! He said, "oh, yes of course, they looked great I mean really, really good. Beautiful." THANK YOU!!!! Breath. The tissue at the pituitary gland had not changed or might have been even a little better. So, they still believe it to be scar tissue. The spot on his spine had not changed from the very first scan over a year ago. They believe it just may be a piece of bone. His ventricles looked good, the shunt look good, and all of his chemistries were normal except for the protein which was a little high. They want to contribute that to the supplementing that we are doing, but I don't really see how that could be because I rarely do the protein powder. He had gained almost 1 pound,
The doc is showing me a comparison of all Eli's MRI's.
 but he is not going to put on weight very fast eating healthy. The other significant thing from the trip is that he was fitted for hearing aids. He is borderline to need them, but I don't think he can turn them down until he knows what he is turning down. It's like the first time a kid that needs glasses, gets glasses. They don't realize how well everyone else is seeing until they get the glasses. I just don't think he can make a choice until he knows his choices. We are going to try it to see if it makes a big enough difference for him to want to wear them. If he decides not to then I think he will be fine. There could be another drop in about five years, so they will watch it. I am not terribly upset about the hearing aids because I know that there will be a cost to win this battle, and I will gladly pay this price. It was a great trip, all the way around. Caleb was very good for me (manageable bumps), and I think Eli enjoyed having him with us sometimes... sometimes.
Our assembly line to label the boxes (From Friendsof Eli)
 We got there late enough that the only rooms left were the suites, but early enough that we did not overflow to the hotel down the road. Each morning we got a parking place in the basement directly next to the door, and at lunch both days we had a table next to the window that overlooks construction of the new building.
We visited Target House to deliver some toys and Girl Scout cookies, then had time to play at the playground and in the playroom. We were almost mobbed when we had the Girl Scout cookies to give out for free at the hospital. I felt the need to tell the boys to just run away and let the cookies go. Some of the employees were calling coworkers on the cell phone to come to where we were. AAHHHhhh! I will definitely do it differently next time, but it died down quickly and we had more than enough to hit the places that we knew and wanted to hit. We delivered 215 boxes. Just the day before, a lady was selling cookies around the hospital, so when we pulled our wagons and I would ask an employee if they wanted a box they would just say no.
We were loaded down with donations.
Then I said, they were donated to employees of St. Jude, they usually changed their minds. Well, except one lady who actually only wanted to buy a box to support girl scouts, but didn't want to disrupt her diet... who does that! I made sure to remember the guards at the gate, and they seemed the most surprised of all. So, we finished all of that and were gone at 3 p.m. I met Vic at Iuka, MS,
 to give him the boys to take home so that I could head south to Birmingham to be with Abbey at A Girl Scouts overnight in the museum. I was a zombie puppy by the time I got there, but slept probably as good as I usually do. I found a nice quiet piece of concrete floor in a dinosaur exhibit on which to crash. We raced home Saturday morning, so that Vic and Eli could go to a Monster Truck Jam show featuring Eli's fav MT, the Grave Digger. They were taking a couple of buddies and had tickets for the "pit" before the show to see the trucks and drivers up
We filled the wagons like this twice.
close. Hg headed off to babysit my nephew, and Abbey is again gone off to a birthday party. We missed a couple of things that we wanted to do - softball practice, and an easter egg hunt - but it is a blessed non-stop whirlwind of normal activity. I will never be rich enough in any currency to repay what we owe to the masses that pray on Eli's behalf. But know
that every day I look for a way to do something good for someone, someway, somehow, hoping that at least in a small way that debt is being offset. I hope that you personally receive some sort of benefit from your efforts in Eli's healing knowing that the Lord is glorified. There is no more awesome sight among the wonders of the world than seeing a mountain move. And, there is no peaceful comfort greater than that which comes from knowing our Creator is merciful, kind and in his will is our best interest. Please join us in prayers of Thanksgiving and continue to remember those who have lost and have the potential of loss. I received a letter from the University of Alabama (as did Ryan’s mom and his dad) to thank us for the donation to the libraries in Ryan’s name. It shared a copy of the memorial nameplate that would be in 28 books being purchased with what was donated. Also, while we were at St. Jude this time, we were able to find Ryan’s brick that we bought back in October through your donations to St. Jude. Eli still doesn’t know, and didn’t ask why I wanted his picture
The brick representing your donation to St. Jude.
with it except that it said “Friends of Eli.” Thomas in Birmingham, who fights the same cancer as Eli, is not doing well, and his parents have decided to take him out of the hospital and to go home. I don't think they have a plan from there, but his future is likely short. To witness and realize the power of evil, its weight, breadth, depth and force, yet then understand that our Creator is even more powerful than anything evil can do and does should really put into perspective God’s awesomeness.

Eli and Vic with Grave Digger

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.