Bday pictures

Little Green Men Cupcakes

Sticky Hands (prizes)

We are a happy family!!!

Happy Birthday to me . . .

We have been remiss on keeping the blog up to date. What better time to correct this than on Ben's birthday. We had an MRI early on in July and when we heard back from his Seattle team, they not only said that things had not progressed, but might even be shrinking. We are still not sure what it is that we are looking at on the scans; another type of cancer, scarring, who knows, but it does not act like the ATRT cancer we have been battling. When they read the scans they said it even looks like some of the edges are getting better. We will take that news any day!!!

Ben had a great birthday. Despite what he told everyone who asked, he is not four, only three years old. When we told a friend sitting next to us in Sunday School that it was Ben's birthday she commented, oh, is he five or so? We said no, only three. Her comment hit spot on - wow, he has experienced a lot in three years.

Ben had a Toy Story birthday. He got Woody, Bullseye, Buzz, and Jesse. I don't know which sibbling put more miles on the gifts. Sunday afternoon the kids all got their squirt guns and headed out in the backyard. Dad had set up some pictures of Zurg on milk jugs. They were all taken out quickly, reset, taken out again, reset, etc., etc. As you can imagine, dad quickly became the target for guns and wet soaker balls. The kids, however, did not think it fair when he got even. All of the kids played games they made up around a Toy Story theme -- instead of duck, duck, goose they played Buzz, Buzz, Woody. There was also another game along the lines of hide-and-seek that tied in the characters somehow, but I did not even begin to understand all the rules. Later in the afternoon they all watched both Toy Story and Toy Story 2, and had little green men cupcakes with ice cream.

For a day that we wondered many times if we would see, an outstanding birthday.

Status Unchanged - as far as we can see

Ben had another MRI this morning. It appears that there is no change from the past two scans. We asked the doctor to show us the scans so that we had a better idea of what the highlights looked like. There is an asymetric spot in about the center of where the tumor was, but not on the surface like the previous tumor, that is 11mm X 17mm.

They will send the scans to Seattle for final word. In the mean time, we will continue to enjoy our Ben. We are very excited for vacation to Utah in two weeks, for Ben to meet some of the family he has not met yet,and to eat some fresh tomatos and corn on the cob!

Ben's doctor from Seattle called this week.  The spot on Ben's MRI is still there but they don't see any changes from last month.  They are still concerned about it and they are unsure what it is.  They have talked to a neurosurgeon about doing surgery to remove a piece of it to find out for sure.  As always there are risks to having surgery.  The benefit would be being able to treat it now if it is cancer instead of risking it growing wildly and being harder to treat later.  Just as a reminder, treatment would be to slow the growth of the tumor not to cure Ben's cancer.  The doctors would like Ben to have another MRI  in 4 weeks again.  I've asked to hold off on a decision about surgery until after then.  The doctor didn't seem to think that would be unreasonable.  Perhaps it will start to shrink????  That would be best case scenario and why not hope for the best?!?!?

Heaven and Hell and Purgatory

That is what the Dr. said when he took us to the other room to talk about the results of Ben's scan today. There is heaven and hell and purgatory, and I am putting you into purgatory. He had reviewed the MRIs from today and there is some change. There is more color in the contrast scan but no real answers as to what that means. Basically, the rollercoaster continues with no answers.

The scans will get sent to Seattle for further review. We are not sure if we are back to a three month cycle for scans or if we will be on a monthly visit until they get a handle on what they are looking at with the changes. My guess is the latter.

For now, we will just enjoy more time with a happy and healthy, definitely two-year-old crazy Ben.

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