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

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.