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 http://www.eightsgr8.blogspot.com/.

As I said Ben is doing well.  We have moved our family and changed insurance....an 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!

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!!

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

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.

Ben's Wish - Day 4 (California Adventure)

Thursday morning we walked over to California Adventure. We were excited to find out that the guest pass worked here too. Our first ride was the giant ferris wheel. You could ride the stationary or the rolling cars. Of course we chose the rolling cars and began the day nice and green (nauseated). Unfortunately for me, it never went away all day on the rides.

We were a little worried as we walked around because a lot of the rides were under construction. The kids had fun just playing on the fire boat.




Cari took some of the older kids to ride one of the coasters. While I played with the little ones on the fire boat. On the way back they snuck in a cotton candy without bringing it our way - Busted!


Ben was extremely excited to find the carousel working. He rode it a number of times during the day. I think his favorite was the seahorse . . .

Next, we rode the roller coasters. They were pretty awesome. Most of the little kids were too small so they got to go an meet Woody. They liked the Toy Story ride where they got to shoot targets with their own guns.

In the Bugs Life area the kids had a blast on the Tuck and Roll pill bug bumper cars. . .

We wrapped things up in time to catch the last show of Aladdin. It was pretty awesome. I loved Iago and the elephant and horse costumes . . .

After the show Cari and some of the older kids rode the Hollywood Hotel drop ride. I took Ben back to the bumper cars in Bug's Life. The whole park closed at 6pm. I was still green from a day of roller coasters and spinny rides. The kids were still going strong.

We all headed over to IHOP for dinner. I can only imagine what the servers thought as all 15 of us piled in for dinner. All in all it was a pretty fun day.

Ben's Wish - Day 3 (more Disneyland)

For day 2 in Disneyland, our cousins joined in the fun again. Right as we walked in we met Goofy . . .



Next we wandered around a bit and rode a couple of ride. We decided to split up the group and Jennifer and Jordan graciously took Elizabeth, Megan, Sammy and headed to ride the more fun rides -- roller coasters, get wet rides, etc. Cari and Threesa took some of the other kids and went to ride the Nemo ride. Who knew that Nemo was so entrenched in our family now that Cari bawled through the entire ride. During Ben's treatments he did not always sleep regular hours so Cari would throw on Nemo and let Ben watch while she slept next to him.

Nathan, Joseph and I stayed to watch Jedi Training. Nathan got picked to be trained. He had all the moves down . . .

To hear Nate tell it he single handedly chased off Darth Vader . . .

Nathan taking his Jedi oath . . .

After Jedi training, and numerous trips up and down the stairs and ramps between the Autopia and he rest room, we drove the cars. I must say that Nathan was a much better Jedi that he was a driver. Both Ben and I got jostled and bounced about to our limits.

After the Autopia it was off to Toon Town for lunch and more rides and games . . .

The kids loved Daisys boat and Goofy's house . . .

Then the ride that dad REFUSES to ride . . .the DREADED TEACUPS!!

We rode rides until the park closed. By the time we headed back the kids were spent, yet again.

Ben's Wish - Day 2 (Disneyland)

We got up early (for vacation early anyway) on Tuesday and headed over to Disneyland. We rode the monorail over from Downtown Disney, only to realize that it would have been easier to walk but the train ride was fun for Ben. After getting off the monorail, first stop - Pixie Hollow.

Even though it was early in the morning there was a bit of a line. We were given a Guest Services pass that we had no idea was such a wonderful thing. All we had to do was show this and we got to enter through the exit and skip waiting in ANY lines all day long. Unbelievable!! Ben ran up to any and all fairies and hugged them within an inch of their lives. Funny that the kids were all the same size as the fairies . . .

Next, on to ride Dumbo. Ben had said from day one that he wanted to ride Dumbo at Mickey's House so off we went . . .

Next Sammy got to pick her favorite and we headed for Casey Jr. and the railroad. Fitting car for our group . . .

Next we rode on the Peter Pan ride. Ben and Nate talked big about getting Capt. Hook with their swords. Then, who should happen to walk up, the Capt. himself. All the talk was out the window and Ben ran up and gave him a big hug. Not much of a lost boy protector after all . . .

We had only one appointment to keep all week, and that was with Mickey Mouse. We all got to spend nearly an hour playing with Mickey. The kids were a little shy at first. They talked a bit and we tried to interpret because, of course, Mickey can't talk. Finally they settled in and played UNO fro almost a half hour. Who gets to play UNO with Mickey for that long. What a great time.

We laughed because Mickey kept nearly winning and then would get slammed with draw cards. We finally called the game because Mickey had other places to be. When he got up he pulled out the cards he had been stashing under the game cabinet they were sitting next to. Mickey . . .cheating . . . we all laughed a lot at that.

And then a pictureof our true personalities . . .

and of course, mom had to cry at Mickey too. . . (at least dad kept his tears hidden for the picture:))

We walked out from playing cards with Mickey and ran into Aladdin and Jasmine. Who could have even hoped that Megan would get to meet her FAVORITE princess

And then around the corner to run into Cruella. I think Sammy's Halloween costume was cuter than this one but the girls got a kick out of the attitude . . .

Next we saw Minnie . . .

As the day wore on it got a little dark, a bit chilly, and Nate kind of gave out.

For one last ride, we hit the rockets . . .

What a cool first day in the park. In between and betwixt all of these character meetings I think we truly rode EVERY ride in the park. We went to Fronteerland for lunch and dad got picked to be a participant in the Dating Game show that was going on on stage with the Mayor, the Sheriff and the Mayor's not so attractive daughter. Fortuntely, he also had the camera on his belt . . .

Like I said before, that Guest Pass thing was amazing. No lines in Disneyland can truly wear you out. And best of all, I remembered sunblock on my newly shorn head and had no suburn - Wahooo!!