Surprise, Clarification, & Still Waiting

Surprise
For those of you who don't already know, Ben is expecting a little sister in September.  Or at least the doctor is fairly sure it's a girl...  Ben's siblings are busy making name lists and deciding who is going to room with who.

Clarification
Johnny and I are doing just fine.  Our marriage is as strong as ever and I am still grateful to be married to such a wonderful man.  Some of you have asked... I guess my latest blog where I didn't want to state his feelings made some of you wonder.  My own feelings and emotions change from moment to moment, I'm sure pregnancy is helping out a bit with this.  At any rate, no need to worry about our marriage.

Still Waiting
Tomorrow is Ben's MRI.  Hopefully this will give us the info we need to begin moving forward with decisions.  It has been hard to make any kind of plans or commitments not knowing where we will be after tomorrow.  The medical team in Seattle said to have our kids planned for and to have an OB appointment before the MRI and just be ready to move on the information we recieve.  We still hope for a miracle but I believe we are prepared to deal with whatever lies ahead.  We continue to rely heavily on Heavenly Father.  Our eldest daughter prayed for strength the other night.  We have been blessed tremendously and are grateful for all of the love, prayers, and support that we are recieving.  Thank you.

Today

I'm finding that being told that your baby is going to die is a much different emotion than just being told that your baby might die.  For me, that is what I feel like the doctors told us this week even though we haven't seen the new MRI.  Our meeting was full of a lot of, if this then maybe this or this....  Most of the talk was of slowing the growth and maybe adding a few months.  I've been reluctant to talk about it.  Perhaps I'm grieving already I don't know.  I am struggling to get by each day.  How is Johnny, well you will have to ask him.  We are supporting each other as best we can and trying to prep the children for what is ahead.  We continue to be in need of your friendship, prayers, and support.  Thanks for all you have done for us.
Cari

News

Dr. Geyer called from Seattle today.  They are very concerned about the spot they see on the MRI but they are not without hope.  We are scheduling another MRI in about 3 weeks to look at it again and then make more decisions.  In the meantime we are planning a phone conference next week with Seattle, Alaska, and Johnny and I to talk about option/possibilities if the cancer is back.  Dr. Geyer thought it might be good to look at some decisions before we are destitute of hope...  There is always hope.  What do we do while we wait?  Keep on living and trying to enjoy each precious moment.  We could use your prayers.

On a lighter note, Ben looks really cute in a pink leotard!  His sisters had fun dressing up both and Ben and Nate in dress up clothes.  They took pictures of course so I'll try to post them soon.

Cari

Bad News

Well, we got a call from the oncologist here in Alaska with bad news.  She said the MRI image with contrast was "lighting up" at the tumor spot.  This may be an indication that tumor activity has begun again.  After talking to our contact in Seattle I learned that it may also just be scar tissue.  The scans are on their way to Seattle and she will call when they get them there.  Also, the tumor board meets on Wednesday and will most likely be reviewing Ben's scans at that time.  I'm not sure what we are feeling at this time.  Ben is an amazing little boy.  We love him and are grateful for the quality of life that he has had despite his disease.  We hope to have many more happy moments with him.  Whatever the outcome... all is well.  We are an eternal family.  God does comfort and watch over us.  And we are so grateful for that blessing.  --Cari

Today's MRI

It was really a pretty uneventful visit to the hospital today. Ben got his IV in pretty easily, he had a brain and spine MRI and we waited . . .

Good news - we are still living the miracle. I think I try to steel myself for these visits and turn everything off -- brain, heart, feelings, thoughts, etc. But when the Dr. told us things preliminarily looked good, what a huge relief. We will be waiting for the official read from the radiologist and from the Seattle Children's team but we will take what we can get. We are so grateful for all of the prayers that I am positive are the reason we are where we are in this battle.

Ben's Wish - Day 6 (triumphant return)

We cleaned up the room for most of the morning. At 11am we checked out and and headed over to the movie theater and watched Alice in Wonderland in 3D. What an amazing flick. The kids liked it almost as much as I did.

After the movie we grabbed a couple of treats and some lunch and headed for the airport. To say that the kids were a bit wiped out from the week of adventures would be an understatement. I think they had a great time. Nate got to his seat in the terminal and then didn't move. He sat there zoning, leaning on his backpack. After a while I looked over and he had crashed.



The flights home were fairly uneventful. I am not sure if we were sad leaving California and warm sunny weather or just dreading going back to the weight of everyday life.

Ben has his next MRI on Wednesday -- keeping our fingers crossed. What a great chapter to this wild adventure. Ben's wish was a real dream come true vacation for our whole family! We are extremely grateful to everyone who took care of things while we were away and who made it possible for us to spend such a fun and exciting week together at Mickey's house.

Ben's Wish - Day 5 (the beach)

Friday we lounged around for a while and then headed down to the pool. The kids swam until I thought they would turn to prunes and then the cousins arrived and they swam that much more. After a non-nutritious McDonalds lunch we gathered everyone up and headed for the beach.





The beach was warm and beautiful. We saw a seal and dolphins playing in the surf. The kids gathered seashells, built castles, swam and played their hearts out.