Make-A-Wish and more!

(October 28, 2009 Post)

Wow, it's been a busy week or two! First, we had the Mayo Clinic Bone Marrow Transplant team reunion dinner. This was held at the Hall of Flame Museum and it was a very nice evening. It was great to see the doctors and nurses who were with us through such an emotionally intense time. Then the Make-A-Wish wish granters came and brought a little party to our house and Aaron asked to go to the Disney Animal Kingdom and Disney World. We will spend six nights in Orlando at the Give Kids the World resort and have passes to Disney venues and SeaWorld. Give Kids the World is only for wish kids and it is a really fantastic place. They will give us money for food and souvenirs, so it truly is a free trip. We are hoping to go in February after Aaron's fifth birthday.

Aaron is having surgery on November 2 to have his port removed. It is a quick procedure and thankfully outpatient.

We have been having lots of good times lately including a day trip to Sedona. He is really doing well with not being able to walk and just gets around by scooting or using the walker. He will have another xray in one month to reevaluate if he can start bearing weight again.

Ben started back to the JumpStart program today and he did very well and is using words more. He is still not truly communicating just imitating, so please pray that soon this will all click for him.

Here are some pics from the dinner and the Wish party.

Make A Wish Party:


Mayo Clinic Bone Marrow Transplant team reunion dinner:

Trying to Surprise Damon

Hi all,

Tuesday October 20th U2 is coming to University of Phoenix stadium for a big concert. Any of you who know Damon know that to say he is a fan is to put it mildly. He has a concert ticket, and actually HopeKids is offering tickets as well, but I am hoping that someone with some connection to the stadium may be able to get him a backstage pass or meet and greet time. I know this is a shot in a million, but it would be a pretty amazing thing for him, and sometimes I try to be a nice wife and do something cool. Not often enough, but occasionally!

Barbara

Surgery success

This update is coming a little delayed. According to Dr. Seidel
and the anesthiesologist, the procedure went perfect. They found
what was expected and replaced the 2 previous screws in the graft
with 4 new ones. Aaron is resting and only has a little pain. He'll
be monitored overnight and come home tomorrow or Friday at the
latest.

Aaron is in Surgery Now

Aaron in surgery now...
Should last about 2 hours. He was a little upset this time outside the O.R. Barbara had to peel him from my arms he was holding on so tight. It was actually a really nice feeling that he was holding so tight.

Aaron is really vulnerable to illness at the hospital. We're praying he doesn't catch anything, especially c.diff.

More to come...

Damon.

Surgery on Wednesday

Dr Seidel saw us today and we found out that basically where the donor bone had grafted to his bone just above the knee it has cracked and the screws holding the plate have pulled out. The graft bone is straight, but his own bone is tweaked to the side. We are not sure if it was a single injury or a combination of things but the result is that Dr Seidel will take out the old screws and put in new, larger ones. Aaron will hopefully only have to spend one night in the hospital and then he'll have a soft leg immobilizer brace and will go back to using the walker for a few weeks.

It is definitely a disappointment to have to start over with physical therapy, but obviously we are so happy that it wasn't a tumor that it seems like good news! Please just pray that Aaron experiences little pain and that the procedure goes smoothly.

Barbara

Today's x-ray results

I just heard from Barbara. Aaron's xray showed no tumor.
However, it did show that two of the screws in his leg had come
out, so he will need to have surgery later this week to repair it.
Also, he cannot walk on it at all, because it could break, so he
will be back in his wheelchair for now. Praise God that it is not a
recurrence!

~Tricia

Please pray

Aaron has a hard bump on his left leg (the same leg as his primary Ewing's tumor). I was actually out-of-town and Damon took him to the ER last night. Basically, the e.r. doctor talked to Dr. Watanabe and he thought it was highly unlikely that a tumor has grown to that size in the month since his last scans. Still, we are obviously nervous and there is no explanation as to what it could be. Tomorrow we are going into the office where Dr Watanabe will examine him and I suppose run tests. Please pray that this is just some kind of injury or something very minor.

Barbara