Deep in the Heart of Texas

Can you say flashback??? For those of you who don't know, I grew up in Texas. As Ben and I headed to the baggage claim I could smell and then feel the wet air. It is very humid in Texas. Later that night after Ben's blow out, gross to say the least, I drew him a bath of....brown water. You should taste the stuff!!!! I had to take my shoe off to feel the spongy thick bladed grass that grows here. To top it off, the people who brought dinner in tonight brought Mexican food...and I mean REAL mexican food. It was sooooooooo good. Even Ben ate well. (He loves beans and tortillas!) All of this brings back fond memories of growing up in Texas. The title of todays blog is part of a song I learned in Texas History class. We are having a lot of fun at this point in our journey.

What I haven't told you yet is that there was an angel greeting us at the airport. For all of you who have wanted to come put your arms around Ben and I, comfort us, make us smile, and just plain take care of our needs....consider it done. We love her and you for all you do. Thanks!

Today's Scans

Good news. Ben had a lumbar puncture the other day to check his spinal fluid and an MRI today of his brain and his spine. All came back clear!! There is a little fluid in the cavity left from the tumor but that was expected.

Now they can fly off to Houston and try to dodge the swine flu on the way . . .

Houston

Well we did get out of the hospital on Wednesday and it was wonderful! Since then Ben has had blood labs drawn and a Lumbar Puncture, but other than that we have been free. The only other thing scheduled is his MRI on Monday afternoon. They are checking to make sure that there are no new signs of cancer. On Tuesday we are off to Houston to get his radiation started. We "think" we will be staying at the Ronald McDonald house there but we won't know until Tuesday. So for now we are packing and saying our goodbyes to friends here. Many won't be here when we return (good for them!) but others will. When we get to Houston I will post a new address. Thanks again for all of your love and support!

Discharge???

We were just told that Ben is a "candidate for discharge". I was too excited to ask when however! His ANC is 252 this morning. (That means he has white blood cells again!) He also is afebrile. (That means he doesn't have a fever!) His CT scan looked good. (Other than he needs to poop...he has been holding it!) He would still need to take antibiotics orally and if he gets a fever then he has to come back for evaluation. No problem! Wish us luck with his "candidacy!

Cowboy Up

I've always loved this saying. I even considered putting it up on my little boys bedroom wall. Ben doesn't need it on his wall, he is truly living it. Everyone has been so amazed at how happy he always is. One of the nurses on his team asked what it would take to get Ben down. Unfortunately I've come to the conclusion that he probably has been feeling pain all along, but his personality has been masking it. The past few days he has had a hard time. Every bowel movement is excruciating for him. It took him half an hour yesterday to calm down afterwards. He cries and wants me to hold him...then he wants to lay down...then he wants to leave...he just keeps looking for something that will get him away from the pain. I feel pretty helpless because there truly is nothing I can do. They have been offering oral pain meds but he is usually past the pain by the time they would kick in. After 30 minutes screaming and crying last night they now are giving him morphine through his IV instead. Tomorrow morning they are planning to do a CT to see if they can see anything going on that needs to be addressed. (beyond the pain meds and antibiotics) Hopefully all will be well. Hopefully his white blood cells will recover soon and his body can start to heal. In the meantime, he smiles, plays, and blows kisses to everyone between bouts of pain. What an amazing little boy he is!

It's Saturday evening and we are still here!!!!! Ben's white blood count is still zero and his platelets aren't much better. They gave him platelets for the third time this week. Of course now he gets Benedryl and Tylenol before any blood products just in case.... They say he can't leave until his counts are better. Probably a good thing in the long run, but man we are tired of this box!!!!! On the bright side, the sun is out in Seattle. While we can't go outside we have great windows on our box!!!

Our box is big enough to ride around the room on his rocket.

Here is Ben making his own fun....he decided to wear my shoes. He managed to do pretty good. We have also launched blocks with the construction truck, shot saline across the room from a syringe, and built swords out of thermometer covers. Life is what you make of it! Hope you are all having fun!

Ben's Friends Helping Hands Benefit

Some amazing folks I work with put together a benefit fund raiser on the UAA campus. They had this video running in the background. Thought folks might like to see it.