Thursday, March 29, 2012

Back in Seattle Again

Nothing is wrong.  In fact everything is so goood.  However, Ben is starting kindergarten in the fall so I decided I had better get my head out of the sand and make sure he is ready.  We have continued to have 6 months MRI's and they have all remained clear.  (unless you count the radiation scar!!!!)  We are in Seattle for a visit to the SURVIVOR late effects clinic.   They sat down and helped us make a plan to watch for things like....secondary cancers....bone density problems...neurocognitive problems...growth issues, etc...  It was really basic and based on general cancer survivors from over a decade ago!!!!!  Scary how far behind some of the data is!  In fact the person we were meeting with did not know about the scarring that many proton beam radiation children are seeing on their MRI's.  Just a reminder to me that my job is not over.  I need to keep up with other ATRT children's blogs and other sources to see what may be ahead of Ben. 
I am so very aware of what a miracle Ben's life is.  I am so very aware of the loss of so many other children.  My heart goes out to those families.  Why one makes it and one doesn't I don't know.  I often feel guilty because Ben is alive and doing so well while others are not.  So many emotions that I don't even fully understand...

Next blog:  Neurocog Evaluation!

Thursday, March 3, 2011

D Day (Diagnosis)

It has been 2 YEARS since Ben was diagnosed with ATRT.  He is a happy, healthy, and slightly bald little boy!  Oh how we love him and feel so blessed to still have him with us!  We just recently talked to Seattle and they told us his last MRI looked great!  Celebrate!!!!!

Swimming at the Aquatic Center...

Rockin out before church...he only likes hard rock...

Self Portrait...he loves to steal my camera!

Sunday, November 21, 2010

New Family Blog

We aren't closing this blog down but we have added a family blog that we hope to update more frequently.  With the blessing of Ben's current health, it is nice to be able to focus on our family as a whole.  Family and friends feel free to check us out at

As I said Ben is doing well.  We have moved our family and changed interesting process with a child like Ben.  We "think" the new insurance has accepted him but won't feel really secure until we see them actually cover a claim.  We are also trying to figure out doctors.  There is an MRI machine in town so we may be able to get his MRI's here.  If not we will travel to either St George or Salt Lake, 1 or 4 hours away.  We are unsure of whether we need to find an oncologist or if we can just see our family practice doctor.  Hopefully we can get some good advice from our team in Seattle.

Anyway, all is well for now and we are enjoying one another!

Friday, September 24, 2010

Last Checkup in Alaska

Ben had an MRI this morning. We are grateful for all of the help. The kids went over to Hoen's this morning at 6am and not only got help getting ready for a regular day of school, but for "Crazy-Hiar-Day". Even Nathan came away with his hair painted orange and has been running around claiming to be the Human Torch (of Fantastic 4 fame) all day long.

Cari, Addison, Ben and I headed to the hospital. We have felt extremely blessed over the past year as scan after scan has come back clear but there is always some trepidation as we go in wondering if this might be the time. We are extremely grateful to all of the nurses and doctors at Providence. They have been fantastic to work with. Again today the scan came back clear!!

We head out Monday for Cedar City, UT to begin the next chapter of this adventure. We are all so grateful to friends and family who have been so generous along the way while we have been here in Anchorage. We feel truly blessed. Thank you for all you have done for our family!!

Tuesday, August 3, 2010

Bday pictures

Little Green Men Cupcakes
Sticky Hands (prizes)
We are a happy family!!!

Monday, August 2, 2010

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.

Thursday, May 13, 2010

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!