Ben's Wild Adventure

D Day (Diagnosis)

2011-03-03T07:25:00.000-09:00

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!

New Family Blog

2010-11-21T19:50:00.001-09:00

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

2010-09-24T16:48:00.000-08:00

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

2010-08-03T19:22:00.000-08:00

Little Green Men Cupcakes

Sticky Hands (prizes)

We are a happy family!!!

Happy Birthday to me . . .

2010-08-02T07:39:00.000-08:00

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

2010-05-13T12:58:00.000-08:00

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!

2010-04-23T08:08:00.001-08:00

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

2010-04-14T14:33:00.000-08:00

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

2010-04-13T15:13:00.001-08:00

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

2010-04-02T09:07:00.000-08:00

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

2010-03-24T17:19:00.000-08:00

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

2010-03-19T12:42:00.000-08:00

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

2010-03-17T18:58:00.000-08:00

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)

2010-03-15T20:19:00.001-08:00

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)

2010-03-15T20:12:00.001-08:00

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)

2010-03-15T17:45:00.001-08:00

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)

2010-03-15T14:25:00.000-08:00

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)

2010-03-15T11:59:00.000-08:00

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!!

Ben’s Wish – Day 1

2010-03-15T11:12:00.001-08:00

Before Ben left Seattle he was selected by the Make a Wish foundation to receive a wish. Want to take on challenge, figure out what the lifelong wish of a 2 year old is from minute to minute. He decided that he wanted to visit Mickey Mouse's house so we put in for the chace to have a family vacation in Disneyland.

The day finally arrived.

We left Anchorage on the 0-dark-thirty flight with a stopover in Seattle and then on to the Orange County Airport. The kids were pretty good on the flight despite being completely wired and excited. Alaska Airlines had our names as being on the flight as a part of a wish. They called the "Allred party" to the counter just as Cari and half of the kids headed to the bathroom for final pit stops. Once we got rounded up we boarded the plane and got first crack at complimentary snacks, digi-players, you name it. I felt pretty spoiled.

We got to Orange Co. and just as we stepped off the plane, standing there were two Orange Co. firemen, and two more sheriffs asking if this was the Allreds -- a little unnerving to have so many uniforms with guns looking for you. The sheriffs and firemen escorted us to the baggage claim and car rental desks, carried our bags, had badge stickers and color books for the kids and even took Nate for yet another pit stop while I was waiting in line for the car. We found out later that these guys came to do this all after their shifts. They were AMAZING. I thought Nathan was going to talk their ears off.

Well, we bid the OC firemen and sheriffs good bye and thank you and loaded the crew in the van and headed for the hotel. Both Cari and I were exhausted, not having slept on the flights. We arrived at the Paradise Pier Disneyland Hotel and the rooms were not quite ready for us so we hung out for a few minutes figuring out what we were going to do for the morning. One of the rooms came available so we headed there to get settled after taking a picture with Goofy in the lobby

The rooms were nice. Because of the size of our group we had two adjoining rooms. That was really nice.

The kids were excited to get things underway. Cari and I were excited to rest for a minute or two. We compromised. The kids watched Disney on TV for 30 minutes while we got to rest. As you may imagine, it was not peaceful rest, but it was nice to close our eyes for a minute or two.

Next, the pool. We headed down to the third floor outdoor pool. It was a bit windy and we were the only people outside at the pool. Come on, it was over seventy degrees outside and having come from under thirty degrees, it felt plenty warm to swim and slide. There was a waterslide, a kiddie pool, a larger pool and a hot tub. After spending between two and three hours attempting to wear out all of the above we walked over to the rain forest restaurant in Downtown Disney for dinner. All of the food was great.

Next, back to the hotel to meet Cari's sister Threesa and their family for Family Home Evening. We had a lesson on Captain Moroni given by Joseph (cousin) and then went swimming again (this is going to be a recurring event throughout). We swam for an hour or so and then headed back to the room for treats and the kids watched TV while the adults played Pitt. I think we finally called it quits around 10pm.

All in all a great first day of vacation. The kids were finally tired and neither Cari nor I could focus our eyes any more so we all crashed pretty hard.

St. Baldricks Fundraiser Event

2010-03-06T13:35:00.000-09:00

We went over to the Iditirod this morning and watched some of the teams take off. The kids got cold pretty quick so we headed over to McGinleys Pub. There were tons of people there.

We got in line and I got my before and after pictures taken and then Ben went to work. He is quite the barber. He kind of has a Michael Jordan thing going on with the tongue hanging out. Megan was our videographer. I think she did a pretty good job.

The end results . . .

A cross between Lurch and Uncle Fester . . .:)

St. Baldricks

2010-02-21T19:09:00.001-09:00

What does Benjamin Allred plus a pair of hair clippers plus St. Baldrick’s children’s cancer research fundraiser equal . . . John with no hair!

One year ago today Benjamin was diagnosed with ATRT brain cancer. We are extremely grateful for the incredible support and the prayers on behalf of our family over this past year.

On March 6 Ben and I will be participating in the St. Baldricks Foundation fundraiser held at McGinley’s Pub here in Anchorage. We are gathering pledges from folks who would like to see me lose my hair to benefit children’s cancer research.

If you too would like to see me lose my hair for a cause you can go online to www.StBaldricks.org, click on “Donate” and search for my name (John Allred) as the participant to support. Thank you again for all you have done for our family this past year. This is a year with Ben we would not have been able to have without your kind and generous assistance!

Airplanes and Santa

2009-12-16T07:40:00.000-09:00

Ben has been energetic, active, and enjoying life at home over the past three months. Yesterday was our next check in MRI to see if anything nasty has returned. We have to keep remembering that Ben's cancer is a highly recurring type and to enjoy every minute. Over the past few days Cari and I have both felt the stress of the next MRI beginning to weigh on us. Emotions tend to get pretty close to the surface and you just always wonder what will be.

We got to the hospital for the MRI at around 730am after dropping off the other kids at a friends who would take the girls to school and Nathan could play at home with their son. They put numbing cream on his wrists and gave him some versed to get him to start calming down. After they put in the IV it must have looked a lot like an airplane on his wrist because Ben started playing with the board and IV like it was one. He flew it around the bed and it crashed multiple times. Then it seemed to transform into a fighter jet or maybe Iron Man's arm because he was shooting everythig from Sponge Bob on the TV to the bed posts.

He went in for the scan just fine. Cari and I went and got breakfast and then waited in his room for him to return and then to wake up from being sedated. Again, while waiting you try to read every statement, every emotion from anyone who walks into the room while you are waiting. This time the chaplain came in to say hello. The alarms immediately went off in my head that the answers were going to need a chaplain. Then the pediatric oncologist came in and said the magic words: "It looks like it is going to be a Merry Christmas". WAHOOOOO -- three more months clear of cancer. We know they need to take the scans to the Tumor Board at Seattle Children's and do longevity comparisons, etc., etc. but we will take no baseball size tumors for now.

We celebrated by taking the kids all tubing at Kincaid Park. It was cold and already getting dark at 430pm but everyone had fun and we were all excited to have another three months together.

We love you all and Merry Christmas from Ben and the rest of us!!!

Signs point to YES . . .

2009-09-28T18:25:00.000-08:00

We had to be at the PICU this morning at 7am for Ben's MRI, kidney function test and lumbar puncture. We got checked in and then kind of hung out while the numbing cream and Versed (a tranquilizer???) took effect so Ben could get his IV in his hand. Ben likes Versed. He gets pretty happy.

Once the IV was in (9am~ish) we walked to the MRI room and left Ben with the doctors. We had a couple of hours to kill so we got some breakfast and then went back to his room to wait for him to come back. The time went pretty quickly, but I definitely like Bob Barker better than Drew Carey on the Price is Right. Once we Ben got back they did the lumbar puncture. While the doctor was doing the puncture the doctor said something like, "I like to see the scans for myself. and "I can get the verbal report but I really like to see what is going on so I can better explain it". Immediately my mind went to the worst possible scenario. We sat around waiting for Ben to wake up for a half-hour or so. After two hours under anesthetic it took a while on oxygen before he was interested in much.

When Ben finally started coming around he was VERY groggy. Even with the enticement of french fries, he was pretty out of it. The doctor came in and we braced for the news. He said that it looked as good as it possibly can. Ben's brain has continued to fill in the space once occupied by the tumor. There will still probably be some ongoing adjustments there; his counts all were in good ranges; there was no sign of cancer cells in his spinal fluid. WAHOOOOOO!

We are extremely excited to say the least. They will send these results to Seattle for final reading and evaluation by Ben's team. One of his doctors is headed to Alaska in a couple of weeks and we anticipate having the opportunity to meet with him. We are just happy that this hurdle is over. After having this be so totally consuming since February it is a little different not to have an appointment scheduled or to know a new test schedule.

One of the negative attributes of ATRT cancer is that it has a high rate of recurrance. For now we plan to simply live every day. To that end we will probably not spend much time here updating the "wild adventure". It has truly been an adventure thus far and will continue to be I am sure, but with no immediate news (other than the hopeful return of Ben's hair) I imagine we will spend most of our time chasing kids and their various activities rather than updating the blog.

We continue to be every grateful for the love and support of family and friends. Many we have met along this journey, and many more who have just always been there when we needed them. To friend both old and new, Ben says thanks!!

Signing off - - - - It is time to go get Ben into the tub and try to scrape off the layers of cotton candy and ice cream from the celebration party we had for Family Home Evening!!

Love,

The Allreds

No more eyelashes

2009-09-21T18:43:00.000-08:00

Well I guess Ben isn't quite done with his chemo side effects. I looked closely at him the other day and found that he has only one lower eyelash left and the top ones are getting thinner by the day. It really looks weird to have no lashes! Good thing he could care less. Ben still gets stared at everywhere we go. My favorite is going to pick up the girls from school. When classes pass by us, in a line of course, every single kid turns as they walk by to get a better look at Ben. He is going to grow up with a serious "its all about me" complex! He is so happy though and we are so glad to be home!

No more Tubes!!

2009-09-16T12:57:00.000-08:00

Ben had his surgery this morning to have his Hickman Catheter taken out. I called to see if he was sore, or cranky. He had just moved the rocking chair over to the pool table, climbed up and begun to launch pool balls all over the room so it seems that he is feeling pretty good.

Additions to the team

2009-09-11T07:36:00.001-08:00

We have been meeting with our Anchorage team members for a couple of weeks now. Good news, it looks like Ben will be getting his catheter out on Wednesday. WAHOO, no more plastic covered baths and "one-sie" undershirts that are not nearly long enough for his long torso! I think Cari was considering "dropping" some scissors nearby and "accidentally" ruining the tubes if there had been any hesitation about removing the catheter. Ben is more than ready not to be forced into maintance cleaning episodes any longer. We are scheduled for our next MRI and lumbar puncture on the 28th and will hopefully see no signs of returned cancer.

For now, Ben is loving running around with his siblings. He hates getting left out of any game or rough-housing. He has all the moves of Kung Fu Panda and can flash his lightening bolt just like Lightening McQueen. His sisters can hardly leave him alone. The only time they seem to leave him is when they are fighting to be nestled into mom's side, and with only two sides and five kids there is a significant amount of rooting, pushing, pulling and jockeying for position (and usually some tears . . .).

We are so grateful for the continued support of our family from everyone. We have truly been blessed through this experience.

Triumphant Return!!

2009-08-26T07:05:00.000-08:00

Monday (8/24) Ben went in for regular labs. His platelet count was not high enough for them to remove the catheter in preparation for his return home. That was the last “to-do” left to get “to-done” before heading for Alaska. Not having been smart enough to purchase flight trip insurance when we purchased our tickets we got the opportunity to pay some exorbitant fees to Alaska Airlines when we changed flights for home. The cost of an entire new ticket and a few hours later, Ben and Cari are finally home in Alaska!

Since it was kind of a last minute change we decided to keep it a surprise for the kids. Cari and Ben arrived in Anchorage yesterday just in time to go and pick up the girls on their first day of school (or at the end of her first week for Elizabeth). Nathan and Grandma successfully navigated their way to and from the airport. Cari decided to go get the kids from their classrooms. Megan looked and just stood there because – (her words) she thought it was just a dream. Sammy took a minute and then was surprised. Elizabeth lost her mind and has not let Ben out of her sight since they arrived home.

We are extremely excited that this part of the adventure is over. Now we wait. . . .Hopefully all of these pokes, prods, stabs, and sticks have done what they were intended to do and we will not see any more signs of ATRT.

Ben let Cari out of his sight for a while and ran around the house with his siblings. All of them are glad to have him and mom home. I don’t think Ben or Cari are too disappointed either. Cari is now milking the “I don’t know where you have put anything, you’ll have to . . .”. I can’t imagine that anything has really changed in six months and one day have they?

Ben and Cari's contact information is now (hopefully for a long, long time):
7640 Jason Place, Anchorage AK 99502
(907) 243-0039

Long Day

2009-08-20T21:56:00.001-08:00

Today was a very long day and I am exhausted....so why is Ben sitting at the table coloring when it is nearly 11 oclock at night?

We started the day off by heading to the hospital for a blood test. After the test they called and said that his platelets were less than 5. So we needed to go back to the hospital so they could give him platelets. Before giving him platelets they gave him some medication so that he wouldn't have an allergic reaction....no such luck. The transfusion had barely started when hives broke out on his arms. They had to stop the infusion and give him some different medicine to stop the allergic reaction. Apparently the more often you get blood products the more like you are to react to them. Ben still needed to get platelets but they couldn't give them the ones that caused the reaction. We had to wait for new platelets. Fortunately no reaction this time. We left the hospital at about 6pm. If I had slept last night... I guess the good news is that his reaction was mild and they were able to give him the platelets he needed! Now if he would just go to sleep!

plane tickets

2009-08-14T13:57:00.000-08:00

Ben is at the hospital today recieving the last of his stem cells today. Hooray for final treatment! We are so excited! They said we can leave on the 28th, barring any illness. We wasted no time buying our tickets. We can't wait to go home!

The Last of the Chemo!

2009-08-09T12:36:00.001-08:00

Benjamin checks in to the hospital tomorrow morning to begin his last round of chemotherapy. Hooray!!!!! It feels so good to be finishing up treatment and looking forward to heading home.

After Daddy and the siblings left on Wednesday, Ben and I were a bit sad....but it didn't last too long because we got and impromptu visit from Aunt Hopie!

Oh what fun we had!!!! We loved, laughed, shopped, and ate the yummiest cupcakes ever with our friend Carolyn. How blessed we are to have such wonderful friends and family!

We also had a visit from Ben's future wife. My friend Emily and her family were in town for a wedding and we got to visit with them both Friday and Saturday evening. Apparently all of the pictures ended up on Emily's camera so....
Again, what wonderful family and friends we are blessed with!

Better Than Ponies

2009-08-07T17:29:00.000-08:00

You can imagine how tickled Ben was when his daddy showed up at his doctor appointment last week. As good as ponies are...daddy is better. Now just imagine the betrayal and sadness as Daddy and Ben's siblings drove away on Wednesday. Ben just loves being with them. Soon...hopefully by the end of the month...Ben will be able to go home. Ben only has only one more chemo/stem cell treatment left. Then we wait for him to get sick and then recover. There are a few tests that need to be run and his blood counts need to be good before Ben can leave. Ben may not be able to see the light...but Mommy can!

Amazing Gifts . . .

2009-07-31T18:42:00.000-08:00

Many kind people donated their time and services to give Ben an awesome birthday party. We all headed over to one of the parking lots at the hospital where the staff had put upa big awning tent and placed straw around it and brought in a couple of ponies for pony rides for Ben and his siblings.

Funny Benjamin

2009-07-29T06:33:00.000-08:00

Nice outfit eh? Mine was just about as good yesterday. We went in to have a blood transfusion yesterday morning and he puked all over himself and me as we sat in the waiting area. My kind nurse managed to find scrubs for me and a hospital gown so we didn't have to wear our grody clothes for the next 5 hours!

This is Benjamin's latest food love. Guacamole! He'll eat it for breakfast, lunch, or dinner and he can eat the whole avacado himself!

Benjamin was putting his popsicle to bed in this picture. He lays the popsicle, wrapper still encasing it, on the pillow and then puts the blanket on top. I'm not sure where he got this idea! The other funny part about this night was this is not his bed. Note the pillows on the ground...He brought his pillow and blanket into my bedroom and set them all up. Guess where he slept that night!

And here we have Ben's favorite movie. We watched it all day everyday last week. Apparently he wanted to watch it last night before bed... this is how he fell asleep! He really is a funny dude!

Blackberries Revisited & Mountains of Poop

2009-07-26T17:17:00.000-08:00

I know...its a disgusting title but... it was a disgusting day. I weaned Ben off one of his antinausea medications and then got behind on the one I am still giving him so.....the delicious blackberries we picked and ate as we walked along the trail came up to say hello again. I wonder if Ben will eat them still? Then later Ben, who hasn't had a bowel movement in a WEEK, finally had a bowel movement. One bath, floor mopping, and a trip to the outdoor garbage can later.... That was seriously a weeks worth of poop! (I even threw away his undershirt!) What a fun day!

Free Again!

2009-07-23T14:00:00.000-08:00

Not from the hospital...at least not until tonight! But free from isolation. Hooray! Now Ben can leave his room for walks or even visit the children's playroom. It was kinda funny because as soon as they said it, he was ready to go for a walk. Do you think he hears and understands what is going on?

He got his chemotherapy on Monday and Tuesday, took a break yesterday, and then got his stem cells today. Unfortunately he has thrown up once every day. We are continuing his antinausea meds. In fact, he is using two different antinausea meds this round. He is somehow managing to keep his weight up so we haven't had to have a feeding tube. All in all, things are going as well as can realistically be expected. Who wants to be realistic though?

Food & Fun

2009-07-15T20:08:00.000-08:00

Ben's favorite food lately is popsicles. You would be surprised how many he can put down a day! He is also quite picky about the flavor. He no longer likes orange. I don't know if he got too much of it or if the medicines he is on makes them taste weird.... Jello, any flavor, is also off his list.

Here's the "fun"...I don't know if it was fun for him to do or just fun for mom to clean up! Whatever the case, he is obviously proud of his latest art work. Thanks to a little help from rubbing alcohol and baking soda, this art project is a thing of the past!

Ben is feeling good this week. Monday he goes back in to start the next round....

Yuck!

2009-07-10T07:42:00.000-08:00

I asked Johnny if the last posting sounded pitiful...he said yes. Well, sometimes I guess I feel pitiful! Fortunately that is not always the case. The funny thing was that I found out my telephone in the apartment is broken. No one had been able to get a hold of me for a couple of days! Too funny!

Yesterday was not Ben's greatest day. It seemed to start out okay. He ate a few bites of pancake for breakfast and drank a little bit of milk. We even went for a walk to the park where we played until a daycare group showed up. His day went downhill from there. He was moody and clingy. He didn't eat or drink anything. And then the diarhea started. It sounded and looked a lot like baby poop. Needless to say we spent the afternoon on the couch just watching PBS and changing clothes and diapers....his and mine...clothes not diapers! Then just after five oclock he crawled off my lap and walked over to the now cold hot cocoa I had made trying to entice, force, coerce him to drink earlier. And he drank the whole cup! I started in on some dinner. I offered him his favorite soup with crackers and a bean burrito. He took a couple of bites but was fairly uninterested. Then he opened the fridge and started looking. He wanted eggs. I thought, whatever, I'll just throw it away if he doesn't eat it. But he did!!!!! He made me cook him a second and he ate that one too! Woo Hoo! I thought we were past the worries because the rest of the evening seemed to go just fine. Then when I went to go to bed, Ben woke up vomiting. By morning I had one bed he had thrown up in, another he had leaked diarhea all over, and mine he crawled into with his leaky diaper! Oh YUCK! Thank goodness for a washer and dryer in the apartment! Thank goodness Johnny got here at two in the morning and can help!

Bye bye babies

2009-07-08T19:10:00.000-08:00

Elizabeth and Megan headed back to grandma's house on Tuesday leaving Ben and mommy alone in Seattle. A day is really long when you have nothing to do. Mommy goes running, Ben goes in for labs, and they both eat....Mommy more than Ben... We'd love phone calls!!!! Daddy says he'll come see us again this weekend. That will help a little, but what we really want to do is GO HOME!

Zoo Again

2009-07-05T11:34:00.001-08:00

In an effort to find something fun to do while avoiding germs, we took the girls to the zoo yesterday. They really wanted to go to the aquarium, but that is indoors with crowds of people... so zoo it is! Look at this cute "chick" that just hatched!

Ben got to touch the turtle but note the lady holding the hand cleanser. We washed and washed and washed all day long!

The girls started fighting over who got to be in the wagon. They wanted to ride but they couldn't stand to do it together. Alaina and I were more than frustrated with their behavior so...we just got silly! Here she is pulling me and Ben in the wagon instead.

...And behind the wagon, Lizzie and Megan were pulling Mom's hair. That didn't last too long, but look...they are smiling!

Besides avoiding germs, Ben is also supposed to avoid the sun. Alaina bought him this great hat that pretty much covers his whole face! Sunscreen had to take care of the rest of hime!

Puke Bucket

2009-07-05T11:20:00.000-08:00

Well so far Ben has only vomitted two times. Not fun for Mom who worries about him, but also not unexpected. For the most part Ben looks as happy and active as ever. The constant blood count checks begin tomorrow morning. Because the chemo drugs he is on right now are different than the ones he was on before, we really don't know what to expect.

Alligator Moons & Chicks

2009-07-01T06:59:00.001-08:00

Ben is as energetic as ever. Here he is wrestling his blowup alligator. He is also riding "the rocket", doing puzzles, building blocks, and watching WAY TOO MUCH televsion!

I didn't dare put the moon picture on.... Ben's diaper needs to be changed about every hour or so because they have him on IV fluids. That means we go through a lot of diapers fast. Unfortunately the package of diapers they brought us are defective. The adhesive strips aren't securely attached to the diaper so we spent the day being mooned by Ben.

Here are the chicks! Alaina, Elizabeth, and Megan arrived in Seattle this morning and Ben is so happy! They spent the day in the hospital with us. We decorated flip flops, went swimming, and ate popcorn while watching a "chick flick" of course! The hard moment was bedtime. Alaina had to carry Megan out of here crying because she wanted to stay with mommy. Mommy was holding Ben who was crying and saying, "I want to go!". Mommy wanted to go too... We still long to be together as a family.

Round 3

2009-06-29T11:56:00.000-08:00

And it begins . . .

Cari and Ben checked in this morning around 8am. That makes for an early morning getting packed, eating breakfast, and getting things ready for both living in the hospital and for visitors to arrive. They started on fluids not long after Ben got settled in a room.

The first room they got sent to was REALLY tiny. Odd because the floor is kind of a ghost town today. The crib in the room barely fit. Cari asked for another space since Ben is still on isolation and will have to stay in the room not only for the meds but to play between doses as well. They got another room without too much heartburn -- or at least that is how it was presented to me anyway. Hopefully they will be able to relax and rest some today while Ben gets his meds. He also got two new prescriptions to go along with the chemotherapy -- an antibiotic that is supposed to head off pneumonia that frequently comes with chemotherapy and an anti-fungal medication to stave off the fungi that sometimes attack the system when the defenses are down.

Cari is WAY excited to see Elizabeth, Megan, and Alaina tomorrow. All seems to be going well with getting started with this round. We continue to be grateful for all of the prayers and kindness we receive on a daily basis.

Space Needle and such

2009-06-27T07:51:00.000-08:00

Today was a pretty hoppin' day. We started out with the audiologist at 9am. The chemo drugs that Ben is taking have been known to impact the ability to hear higher pitches. He sat and let them put the earplugs in his hears (first time) for the testing and then when he got bored did some "field" testing for sound. The only bad news there was that Ben could hear the sounds and react and dad could not. It is not just selective hearing when Cari talks . . .

Next we went and did labs and then had a 3 hour wait until our meeting with Dr. Geyer. We wandered around some of the gardens at the hospital and then found a biker group in the parking lot that were showing their bikes to the kids in the hospital. Ben was a little torn, bikes or hippo??? He rode the hippo statue a little and then went to play on the motorcycles. Cari made the comment that if you promise to get old enough to be able to ride one, you can. The bikers said to "get that contract in writing". Cari said she was more interested in having the other half of the contract in writing -- that of Ben being around to become a biker.

After the bikers we had a great meeting with Dr. Geyer. It was a good meeting. Dr. Geyer has always been pretty straight forward about our odds in this battle. He was very positive about the labs, the MRI, the audio test, and our prognosis. I think both Cari and I left knowing we are not out of the woods but that things have been moving the direction we will continue to pray for.

As we were leaving the hospital we got a call from Uncle Reed, Aunt Kay, Brianna, Andrea, and Kathryn. They had made a special trip from Portland where they were attending a funeral to visit. It was GREAT to see them!! Ben decided he wanted to play like he was a knight. There has been lots of talk about cognitive concerns due to radiation treatments. I think he is doing okay if today was any indication of his cognitive abilities. First, he played swords with Brianna. Notice that his sword (stick) is about two-and-a -half feet long. The sword he chose for Brianna was about four inches. Not so dumb, eh . . . After easily vanquishing the dark knight Brianna and her paltry dagger he moved on to Kathryn.

Feeling that the dagger challenge was well beneath him he provided a foot long sword for Kathryn. Again, Sir Benjamin reigned victorious. He chased the girls through the maze, giggled while they pushed, and pushed, and pushed him on the swing (and pushed, and pushed, and pushed . . .). Since our travels in Seattle have been limited to walking distance we took up the offer to go and see the Space Needle with Reed & Kaye and their girls.

We piled into the SUV and headed downtown. After arriving we were dismayed to find that it costs $16 to ride the needle to the top. We were all too cheap to pay the fare to ride an elevator. You know that expense is a regular complaint when the wandering tour guide has a prepared speech about how if the cost of the needle ride had grown with inflation from the time the needle was built and the original cost during the World's Fair blah, blah, blah, blah . . .

We wandered around for a bit at the Needle. Everywhere we went there was Michael Jackson music playing -- go figure. Brianna walked ben down to a cool fountain. I think she might have been more bummed than him that he could not run in and get his tubes wet . . .

We left the Space Needle and were to meet Kelly and Mike Kinney and some of their friends for dinner. They were up from Houston on vacation. After some really bad directions from dad, Reed was able to get us through the maze of streets to the restaurant and drop us off so they could head back for Portland. We are so very grateful for the love and support of family. To drive 4 hours one way to hang out with us for a little while was truly above and beyond. Thanks Hammonds!!

At dinner, Ben splashed water, threw crayons and generally went nuts waiting for food to arrive. I guess he really was not to much to handle. Dinner was pretty good other than Cari found a bug crawling around in the bottom of her bowl. She had wondered about the delicious "raisins" in the salad anyway. The restaurant was grateful to comp the meal . . .

After dinner we went for a walk on the piers. Ben was in heaven again running with the Kinney kids. Wells, Jack, and Quincy all took turns either being chased or chasing around and around and around the pier. We walked down past the Aquarium and found a game center with a carousel. Cari commented that she wonders what carousel addicts become as adults because they are definitely one of Ben's favorite things in the world. We had green (apple) cotton candy, and donuts, and drinks.

We walked back to the restaurant and Mike drove us back to the RM house. All three of us hit the bed sound asleep. We were beat. What a great day . . .

New Digs

2009-06-22T15:54:00.000-08:00

We have moved again. Here is the address:

Benjamin Allred B14
c/o Ronald McDonald House
5130 40th Avenue NE
Seattle WA 98105

Our social worker stepped in and arranged for us to be in the apartments. Hopefully this will keep Ben from picking anything up, germs and so forth. It is huge and I am already feeling guilty, hoping we are not keeping someone who needs it more than us from having it. It has been nice though. The kids are much happier particularly Alaina and myself. I'll post some fun pictures soon!

MRI

2009-06-17T20:53:00.000-08:00

Ben had an MRI today. When we met with the doctor afterward he said that he thought it looked good. One more good test...hooray! We've still got some more testing before we start the chemotherapy.

While we wait we might as well play. Ben and I are totally enjoying having Aunt Alaina, Samantha, and Nathan here. We spend a lot of time outdoors at the park. Tomorrow we are going to try walking to the beach. Hopefully Alaina and I won't have to carry the kids....

Home Again

2009-06-15T12:15:00.000-08:00

I think Benjamin recognized to Ronald McDonald House here in Seattle. We got "home" late last night and were met by a kind friend. We are glad to be back because it means we are that much closer to going to our real home in Alaska. (mid September maybe) Chemotherapy will not start for about two weeks. Part of the reason for the wait is so that his body can heal from the radiation treatment. They typically wait 2-6 weeks. We are going for two. The other reason for the wait is they have some tests they need to run such as a new MRI. We hope it is clea r. On a more fun note, Aunt Alaina, Samantha & Nathan will be spending a week here in Seattle with Benjamin and I. We hope to have a really fun time!

Here is our address:
Benjamin Allred A278
c/o Ronald McDonald House
5130 40th Ave NE
Seattle WA 98105

Email me if you need our phone number!

Gong Out II

2009-06-13T12:44:00.000-08:00

Here it is. Ben's last day of radiation. He has no idea of course. For him its just another day. We checked in at the front desk and then Ben went to have his vitals taken.

After vitals we went to the upstairs playroom to wait for his turn. They have been a couple of hours late all week so.... Today they were early!!!!! It's time to hit the gong!

Bongggggggggggg!!!!!!!!

Cheers! Hugs! Balloons! Presents! (They gave him the monkey that he has hugged, kissed, and danced with every morning.)

Nothing to be afraid of in here! Time for a little nap while the machine does its thing.

Meanwhile the food is laid out. There are at least five people gonging out today. There was fruit, bagels, muffins, kolaches, chicken minis, cheesecake, carrot cake, etc... Thanks to Kelly for putting on a great spread!

Ben is not asleep anymore! It is time to EAT!!!!! He looks a bit like a newborn pup...his eyes are closed but he is stuffing it in!

Do you like the napkin the nurse put under his chin so he didn't get his shirt dirty?

It all ended with a sponge Bob cake! It is supposed to read "Leaving for Bikini Bottom" but.... Ben and Trent didn't really care! Happy Gong Party!

Gong out

2009-06-12T19:45:00.000-08:00

Well Ben hit the gong today signaling the end of his radiation therapy. We have left the Ronald McDonald House and are staying with Kelly for a couple of nights. On Sunday we are returning to Seattle to continue with chemotherapy. It has been a really weird and emotional day for me, (Ben's mommy). I think these transition times are times where I have to think about where we are and why. Ben has a brain tumor. Ben has a nasty brain tumor. And I get scared... And I have to remember how blessed I am to have Ben.... How happy and alive he is despite everything... But most of all I have to remember who is in charge... And then I move on.

My new look . . .

2009-06-08T13:29:00.000-08:00

Like my new look??

Proton Beam Radiation

2009-06-07T05:55:00.000-08:00

When we arrive at the Proton Therapy Center each morning, we check in at the front desk before heading downstairs to do vital signs. His cute nurse, Matricia, has nicknamed him Benji. He has become so comfortable with her that lately he just walks in, sits on the chair, and lets her take his vital signs. (When we first got here we had to hold him down and try to distract him in order to get vitals done.) After his vital signs we go sit in the waiting room until the radiation team is ready for him. Sometimes it is over an hour but usually its more like half an hour. When the radiation team comes to get him, he runs smiling to them. Maybe he thinks its fun???? Or maybe he's just smart enough to know that when it's done he get to eat????

The first thing he does in the room is pick a monkey hangin from the machine. He likes the black one the best.

Then he sits down, notice he's not on my lap anymore, to get his anesthesia. Lately they have been letting him push the buttons on the machine that pushes his medicine in. Most of the time he just lets out a big sigh as the medicine takes affect. Then they lay him down on the table.

It's hard to see because this picture is so small but he is totally out of it. They are positioning him. He has to be in the exact same position every day so they do an xray each morning to make sure he is positioned correctly.

This is my favorite shot. They put this woven plastic mold on his face, again trying to hold him in the right position. They they tape an oxygen tube across the nose opening. We get to keep the mask when we are done....lucky...

Then Mommy leaves....and they do what they do to her sweet baby Ben. What a crazy life!

Getting a Facial

2009-06-03T13:34:00.001-08:00

While eating yogurt the other night, Ben decided he needed a facial.... If you look closely you'll see he applied it handful by handful. You can actually see the handprints where he slapped his hand against his head and face repeatedly until it was covered. He is sooooooo almost two years old! It is funny how much energy, creativity, and curiosity he has. I managed to laugh at this latest escapade and even got a picture before cleaning him up.

I don't know if you can see the radiation burn on his head very well in these pictures but he does have some. It is getting darker and redder right at the front where he had his brain surgery. I'm not sure how bad it hurts but they have told me it is probably tender. If he can just hold out a bit longer... his last treatment is Friday the 12th!

Kemah Boardwalk

2009-05-30T16:05:00.000-08:00

We drove down to the Kemah Boardwalk today. It is a mini-amusement park, a bunch of restaurants, and shops right on the shoreline. Ben was pretty jazzed because he got to meet Sponge Bob right off the bat.

We got there about 10am and it was still very quiet. We decided to go for a speedboat ride. The boat was called the Beast. We got out past the wakeless area and the cool wind from the speed was great. Then they had the crew get in the front of the boat and slowed way down. I was sitting on the edge and got completely soaked. Ben got splashed some sitting on Cari's lap and Cari hid behind Ben. Despite this act of cowardice she was not spared and got pretty wet herself. We wandered around the Boardwalk for around 5 hours today and I never did get completely dry.

Next we found the "yee-hah's". Ben loves carousels. He must have ridden it six or seven times during the day. He really had a blast. Mom and dad took turns standing in the shade while the other rode round and round.

The next ride were the kids planes. They are designed to gho up to about 8 feet and then down to a couple of feet and round and round. You can see how cramped the quarters were for Cari. Well, dad was the first one to ride with Ben. I squished in sideways and off we went. The didn't give us a warning, however, that we were FAR exceeding the weight limit. When the other kids planes went up to 8 feet, Ben and dad's would only go up to about 4 feet. Anyway, the ride attendants, mom, and dad all got a good laugh out of it. Cari decided to rescue Ben and give him a real taste of what the ride was supposed to do.

Next was the ferris wheel. There were no other riders so it was pretty quick on and off. Except for a dough head attendant who slammed Ben's fingers in the gate when he was locking them in all went pretty well.

This is where all of the pilots who can't fly thier planes above the 5 foot mark get sent. . . . .

All in all we had a fun day. The sun was hot enough to rip the hide right off you. I have set an audition to replace Rudolph for next Christmas with my glowing forehead. Cari and Ben either wore hats or were smart enough to stay out of the sun more than I.

On the way home we drove past NASA. We would have been excited to see a rocket standing their or a shuttle or something, but no, only lots of buildings. Maybe another time. It was a really fun day for my last trip to Houston.

Memorial Day

2009-05-29T16:44:00.000-08:00

Benjamin has watched a little too much Dora the Explorer. When we got ready to head out for our Memorial Day festivities, Ben had to take along a "back pack".

First we headed out for great burgers. Ben mostly ate a chocolate malt.

After lunch we went to a park with a bunch of animals...chickens, ducks, owls, and bison to name a few. (Okay Ben might have killed a garden gnome before heading to the park but....that's another story!)

The park was HOT so we decided to have a swim in the pool when we got home. Kelly devised this great plan to keep Ben's tubes from getting wet. The "pool in a pool" was a lot of fun. It felt like you were laying on a water bed. The millions of balls turned out to be a colorful and entertaining addition to the pool as well!

These are Ben's tubes. They are supposed to be covered by the plastic bandage attached to his chest but.... you can see them hanging out the bottom of the bandage. We have tried most everything to try to keep him bandaged up.

We had a marvelous Memorial Day!

Just Visiting

2009-05-28T17:18:00.000-08:00

It was great to see family after nearly two years away. Elizabeth and Megan were very excited to finally get done with school and to get to "town". Ever since we moved to Alaska the girls have refered to Utah as town. I guess they feel like AK is the boonies. It may have something to do with the fact that half of the street just off ours is still unpaved. Nathan and Sammy were very glad to see their siblings and I don't think Sammy got more than a couple of feet away from me for more than 15 minutes for the whole time we were there.

I arrived here in Houston yesterday. It was GREAT to see Cari and Ben. Though the morning was a lot harder than I thought it would be (leaving the kids) I was excited to see my beautiful bride and baby. Ben has been going non-stop. We went to Jim and Melissa Kellers for dinner and had a great time. Unfortunately, Ben fell asleep on the way home so he was up forever. We went to the Houston Waterfall today and Ben chased pigeons and ran away from Cari and I as often as he could. We enjoyed a leisure lunch with Kelly and Quincy and then have been lounging around Ronnie Mac's this evening.

Cari seems to feel like she needs to entertain. "What do you want to do now? . . . . ." I have been to her a lot like Sammy was to me in Utah -- not more than foot or two away for more than a minute. I think she must feel like she has a giant freakish growth attached to her hand all the time. Anyway, I am having fun just being close for a few days.

It feels really redundant to say, but I cannot thank everyone enough for all of the support and love we have felt. We are especially grateful to Grandma and Grandpa Allred for taking on four very active children. We were teasing Grandma today wondering what she was thinking. There is no way we would be able to do what we have been able to, nor what we will need to without all of their help.

We love you all!!

Accident Prone?

2009-05-23T11:57:00.001-08:00

It's not going to be the cancer that gets Ben.....He has fallen and banged his head up so many times recently! I don't know if he's unsteady because of the radiation, if he can't see because he is totally farsighted, or if he is just a regular active little toddler. His knees and elbows are covered with scrapes. His shins are covered with bruises. I am pretty sure its all just normal...but with as many bumps and bruises as he has you begin to feel like a bad parent. Last weekend he tried on our cousins shoes. They were way too big and he fell hitting his cheekbone on the edge of the window sill. Huge bruise of course. Then on Wednesday we stopped at a little park to play for a minute and he fell through some metal bars. He hit the back of his head on a bar and some how managed to make an inch long gash along a huge bump where he hit. I used tape to close the gapping wound and then the nurse dressed it for me at radiation therapy the next day. On the way home from therapy he decided to climb out of the stroller as I was jogging across the street. Horns started honking and then I heard a thud thud as I ran over Benjamin with the stroller. He, of course, landed on the back of his head rebruising the bump on the back and adding scratches around the newly bandaged wound. The next night he walked of a curb.....and last night he tripped and hit the front of his head on the end of a slide. Can we say accident prone! Like I said, it won't be the cancer that gets little Ben! Despite it all, he seems to be VERY happy especially when he is hanging out at cousin Kellys house!

Chuga chuga choo choo

2009-05-19T20:08:00.000-08:00

From the minute we pull away from the Ronald McDonald house you can feel the stress melt away! It's so nice to be on vacation with cousin Kelly again! This weekend was as fun as the last. We ate well and played hard! Here is a picture of Ben and his cousins waiting to ride on a mini train.

Mommy sat right behind Ben to make sure he didn't fall off...or just climb off mid ride! You never know with Ben. His love for escaping continued this week as he learned he can open a car door while driving down the road!

Look close... he's about to jump! (Both feet are on this side of the track.)

See you later choo choo! We're off to the store to buy chocolate for the chocolate fountain party tonight!

Galveston

2009-05-15T18:17:00.000-08:00

Ben loved playing at the beach in Galveston!

(Almost as much as his mommy....)

Keeping him out of the water was a bit difficult.

Fortunately there was plenty of sand!

Way too short

2009-05-11T14:55:00.000-08:00

We had a great visit with Cari and Ben in Houston over the Mother's Day weekend. Megan, Lizzy, and I are sitting in the George Bush Int'l airport waiting for our flights to Salt Lake and then on through to Anchorage. Wish us luck, our flight is 30 minutes late here departing and we have 10 minutes in SLC to get from the B to the D gates. Not much of a chance but we'll see . . .Worst case Delta is paying for hotels and meals in SLC if we miss our connection because the delay is due to mechanical difficulties.

It was really interesting to see the Proton Therapy machine. First, Cari walked over to the bed with Ben and they injected him with a sedative, about one second later -- flop, he is out like a light. They put the mask on him that holds his head in place and he looks like some little psycho hockey goalie laying there. They showed us the 12X12X2 inch solid brass plates that they use to direct the proton beams and the same size plastic looking plates that focus the depth of the beam. Pretty cool stuff.

On Friday we arrive late because of delays and did not get to see Cari and Ben until around 330pm. We picked them up and headed for Jim and Melissa Kellers house. The Kellers are some AMAZING neigbors from when we lived in Clinton, UT. After we hooked up with them we headed to the beach at Galveston. The wind looked like it was howling so we were worried it might be cold. When we stepped out of the car we remembered where we were. The wind, though blowing, was very warm. The water too. We hunted for seashells, jumped waves, built sand castles and played for hours. That night we had crawfish for dinner. My first time having crawfish. They were pretty good. We ate a ton.

Saturday, we spent a great day with the Kinneys at their pool. We swam, ate, swam, ate, you get the picture. Though we sunblocked pretty good we all ended up getting pretty fried. The girls were pretty miserable with sunburn that night.

Sunday, we double dipped and went to Church with Kinneys and then ate lunch. Then we headed to Kellers for dinner. It was great fun to hang out and relax both places.

Today, Monday, went way to fast. We went to Ben's treatment as I noted above and then pretty much ate lunch and headed for the airport.

Well, they are going to board soon. Hopefully we will make our connection in Salt Lake. We are already missing Cari and Ben more than I can describe. This was a good visit, but, again, being apart may be one of the biggest challenges of this whole adventure. We love you Cari and Ben!!

See you in a couple of weeks!!

It has begun...

2009-05-05T18:35:00.000-08:00

Today was the first day of Ben's radiation treatment. Something wasn't quite ready so he wasn't able to go in until noon. That meant he was very hungry because he hadn't eaten since dinner the night before! When we arrive each day we check in at the front desk before going downstairs to the recovery room. His nurse meets us there to take his vital signs. After that we are taken to the radiation room. The machine looks like something out of a sci-fi movie. I sit on the bench holding him and they hook up an iv to his hickman catheter. The nurses and radiology doctors sing to him as the white milky fluid enters his bloodstream. It doesn't seem to take long, seconds really before he falls asleep. Then they take him from my arms and I leave the room. The next time I see him is in the recovery room where I wait for him to wake up. He was HUNGRY today. He ate a fig newton and then drank a bottle of Boost as we walked back to the Ronald McDonald House. His personality seemed fine. He wanted to play but wanted me to carry him while he played. I'm not sure if he was tired from sedation or radiation or if he had a headache... by evening he was running around on his own again though. I think we'll be okay, but I'm still a little bit anxious. We won't know the long term effects (loss of IQ, behavioral problems, etc...) for a long time. AND....did I mention how badly I miss my other babies!!!!!!

Here I Am

2009-05-01T08:40:00.001-08:00

Benjamin Allred Room 50
1907 Holcombe Boulevard
Houston TX 77030
713-795-3550

Swine Flu

2009-05-01T06:09:00.000-08:00

I was a bit nervous to fly into an area thatf was starting to have problems with the swine flu. Ben is considered immunocompromised because of his treatment. I tried to have him wear his mask but he is one after all and he resisted me. He also spent time making snow angels on the airport floor. Embarrassing, gross, and what can I say besides he's one! Fortunately we got seated in first class and had a little bit more space between us and all of the germs on the plane. Now we are here at the Ronald McDonald House in Houston and we are seeing precautions start being put in place. We are no longer allowed to have visitors in the house. They have cancelled the dinner groups. Families from Mexico are not being accepted in the house and some have even been asked to leave. Several of the local highschools have closed. I am not sure how bad the problem really is here... We will just do our best to stay out of harms way I guess.

As far as treatment goes, Ben has met both his radiation doctor and his oncology pediatrician here. They both seem like good doctors and I feel comfortable working with them. Ben had his 'simulation' run yesterday morning. They sedated him and then....well I'm not really sure what all they did because I was in the waiting room but basically they fitted him for molds that will hold him in the exact same way every day and did a dry run. Next Wednesday he is scheduled to start for real. He will go in every morning at 10:30 until mid June with only Saturday and Sunday off. We are excited to get started and hope that there is as little damage to his brain as possible. But then...that's why we travel all this way for proton therapy isn't it!

Deep in the Heart of Texas

2009-04-29T17:48:00.000-08:00

Can you say flashback??? For those of you who don't know, I grew up in Texas. As Ben and I headed to the baggage claim I could smell and then feel the wet air. It is very humid in Texas. Later that night after Ben's blow out, gross to say the least, I drew him a bath of....brown water. You should taste the stuff!!!! I had to take my shoe off to feel the spongy thick bladed grass that grows here. To top it off, the people who brought dinner in tonight brought Mexican food...and I mean REAL mexican food. It was sooooooooo good. Even Ben ate well. (He loves beans and tortillas!) All of this brings back fond memories of growing up in Texas. The title of todays blog is part of a song I learned in Texas History class. We are having a lot of fun at this point in our journey.

What I haven't told you yet is that there was an angel greeting us at the airport. For all of you who have wanted to come put your arms around Ben and I, comfort us, make us smile, and just plain take care of our needs....consider it done. We love her and you for all you do. Thanks!

Today's Scans

2009-04-27T15:43:00.001-08:00

Good news. Ben had a lumbar puncture the other day to check his spinal fluid and an MRI today of his brain and his spine. All came back clear!! There is a little fluid in the cavity left from the tumor but that was expected.

Now they can fly off to Houston and try to dodge the swine flu on the way . . .

Houston

2009-04-25T12:09:00.000-08:00

Well we did get out of the hospital on Wednesday and it was wonderful! Since then Ben has had blood labs drawn and a Lumbar Puncture, but other than that we have been free. The only other thing scheduled is his MRI on Monday afternoon. They are checking to make sure that there are no new signs of cancer. On Tuesday we are off to Houston to get his radiation started. We "think" we will be staying at the Ronald McDonald house there but we won't know until Tuesday. So for now we are packing and saying our goodbyes to friends here. Many won't be here when we return (good for them!) but others will. When we get to Houston I will post a new address. Thanks again for all of your love and support!

Discharge???

2009-04-22T11:20:00.001-08:00

We were just told that Ben is a "candidate for discharge". I was too excited to ask when however! His ANC is 252 this morning. (That means he has white blood cells again!) He also is afebrile. (That means he doesn't have a fever!) His CT scan looked good. (Other than he needs to poop...he has been holding it!) He would still need to take antibiotics orally and if he gets a fever then he has to come back for evaluation. No problem! Wish us luck with his "candidacy!

Cowboy Up

2009-04-21T17:09:00.000-08:00

I've always loved this saying. I even considered putting it up on my little boys bedroom wall. Ben doesn't need it on his wall, he is truly living it. Everyone has been so amazed at how happy he always is. One of the nurses on his team asked what it would take to get Ben down. Unfortunately I've come to the conclusion that he probably has been feeling pain all along, but his personality has been masking it. The past few days he has had a hard time. Every bowel movement is excruciating for him. It took him half an hour yesterday to calm down afterwards. He cries and wants me to hold him...then he wants to lay down...then he wants to leave...he just keeps looking for something that will get him away from the pain. I feel pretty helpless because there truly is nothing I can do. They have been offering oral pain meds but he is usually past the pain by the time they would kick in. After 30 minutes screaming and crying last night they now are giving him morphine through his IV instead. Tomorrow morning they are planning to do a CT to see if they can see anything going on that needs to be addressed. (beyond the pain meds and antibiotics) Hopefully all will be well. Hopefully his white blood cells will recover soon and his body can start to heal. In the meantime, he smiles, plays, and blows kisses to everyone between bouts of pain. What an amazing little boy he is!

2009-04-18T16:24:00.000-08:00

It's Saturday evening and we are still here!!!!! Ben's white blood count is still zero and his platelets aren't much better. They gave him platelets for the third time this week. Of course now he gets Benedryl and Tylenol before any blood products just in case.... They say he can't leave until his counts are better. Probably a good thing in the long run, but man we are tired of this box!!!!! On the bright side, the sun is out in Seattle. While we can't go outside we have great windows on our box!!!

Our box is big enough to ride around the room on his rocket.

Here is Ben making his own fun....he decided to wear my shoes. He managed to do pretty good. We have also launched blocks with the construction truck, shot saline across the room from a syringe, and built swords out of thermometer covers. Life is what you make of it! Hope you are all having fun!

Ben's Friends Helping Hands Benefit

2009-04-16T09:39:00.000-08:00

Some amazing folks I work with put together a benefit fund raiser on the UAA campus. They had this video running in the background. Thought folks might like to see it.

Scary Day

2009-04-15T15:23:00.000-08:00

Cari called this morning and said Ben seemed to be a little off this morning. He was clingy, moody, sleepy and not his usual active self. She could not find a fever so there was no real reason to go in to the hospital early.

They had just finished up doing a platelet transfusion not too long ago. On the way out of the hospital Cari looked down at Ben in the stroller and he was shaking like crazy.

She picked him up and headed immediately back to the infusion center. She says she only ran over a few people on the way back.

It looks like he had a reaction to the platelets and was going in to shock. His nail beds were all gray, his color was awful. They are checked into the hospital now and Ben has been given some medications to help get the shock and other symptoms under control.

Cari is sure he is not only fighting the shock from the platelets but whatever had him feeling out of sorts this morning. It looks like things are back under control. Cari was able to have one of the hospital volunteers come into the room while Ben is sleeping so she can run back to the Ronald McDonald house and get a bag packed to stay in the hospital until they have Ben stabilized.

Alone again

2009-04-09T07:03:00.000-08:00

Well Grandma, Samantha, and Nathan took off for Utah yesterday. Daddy, Elizabeth, and Megan are back at school and work in Alaska. That means Mommy and Ben are alone again in Seattle. Ben is in the middle of his second round of chemo and doing well as usual. Unfortunately, he is still in isolation. It is amazing how long that flu bug stays in your nasal cavity!

Ben is enjoying playing with all the cool stuff in the room. From taking his own blood pressure to shooting the covers off the thermometers, he definitely knows how to make his own fun. Here he was playing in a pair of the infamous blue gloves.

Most mornings I wake up to a new nurse whispering, "He's so cute!" Despite his shiny head he is still collecting girl friends. Yesterday he was blowing kisses and passing out hugs...He really is fun to watch. We love our Ben!

If all goes well. We will be out on Friday!

Update

2009-04-06T07:52:00.001-08:00

Well, I am running out of catchy titles so this will be pretty boring. Elizabeth, Megan and I returned to Anchorage on Sunday morning. We hopped on the shuttle at 5am to make an 8am flight that was canceled. Fortunately we were able to catch the 10am flight so we didn't have to sit in the airport all day long. I had been praying all week to let me stay healthy long enough to be of some assistance and to give Cari some time with the girls. I got what I asked for, but about the time I hit the airport on the way home the sock hit the back of my throat and this morning -- look out.

Cari is in with Ben in the midst of his next round or chemotherapy. He seems to be doing well. As energetic as ever. Unfortunately he is still on isolation so the room is very small with an energetic little boy tethered to an IV pole. We have had fun with Skype being able to video call each other.

Sammy, Nathan and Grandma couldn't come to the hospital because Sammy and Nate are still trying to get over flu symptoms and folks get pretty antsy with immuno-suppressed kids around anyone with a cough. They head for Utah on Wednesday.

That's about all for now. Thank you again to everyone who is taking such good care of us.

Success!

2009-04-03T21:11:00.001-08:00

We got word back on the stem cell phareses. According to the fellows that I spoke with they target 15 (not sure of the unit of measure -- I assume million could be thousand) stem cells to be considered a successful harvest. If we hit 15 we do not need to try again tomorrow. Ben hit 86 so he blew the numbers out of the park.

They will do some tests for kidney function in the morning and then will start the next round of chemo tomorrow.

Stem Cell Harvest starting

2009-04-03T11:25:00.001-08:00

Well, the surgery to place the second line went as well as it could have. Ben came back pretty groggy tired but well. The nurses are hooking him up to the phareses over the next couple of hours. He is resting well, hopefully he will stay calm through the procedures today.

The plan, as we know it, is to do the harvest the cells today. They will do a check to see if we got enough and let us know by this afternoon. Hopefully tomorrow they will begin the next round of the chemo.

Elizabeth, Megan, and I will head back for Anchorage on Sunday morning. Samantha, Nathan, and Grandma will head for Utah on Wednesday. Cari is not excited about the prospect of being alone again, but we do what we have to do.

A new line & stem cell harvest

2009-04-03T08:51:00.001-08:00

Yesterday was long. Early in the morning Ben and I headed in for labs. His numbers skyrocketed. The count they are looking at is his white blood cells and they were 390 two days ago and then 1941 yesterday. We only needed anything over 1000 to shoot for the stem cell harvest. They also look some at the stem counts and need something over 100 and he had something over 400 and that before the double dose of hormones that are supposed to increase their numbers.

We heard from our Doctors that we would have surgery this morning but did not get a call back from the surgery center all day and were pretty stressed out. We arrived at the hospital this morning at 645am for a 730am surgery and were not in the computer. It took long enough to get us in the computer that we got bumped this morning for a couple of hours.

Anyway, Ben is in surgery now getting a groin line put in. Once it is in place he will be able to do the stem cell harvest. This one is only a 45 minute surgery. Afterward we hope to have great success on the stem cell harvest and then he will be admitted to begin he next round of chemotherapy. To get Ben to be calm going in to surgery they took Cari into the operating room just for as long as it took to get him under. Great outfit huh?

The other kids are hoping to get to go swimming today. The flu has been running through the whole lot. Sammy was pretty down and out yesterday. Nathan made the most awful sounds all night long and had somewhat of a fever. Lizzy has been pretty mild, other than one bout with a techicolor yawn while Ben and I were checked in before. Megan and Grandma are the only two unscathed so far (and me). We hope that keeps up (especially for grandma).

Good News

2009-04-01T08:40:00.000-08:00

I got a call from Houston yesterday asking for my insurance information. Hooray! I hope that means we are in! We probably won't go there until May though. We still need to harvest Ben's stem cells and then go through round 2 of Ben's chemotherapy. Ben's ANC (blood counts) were up today so that's a good sign. Johnny thinks they will let Ben out of the hospital again today. We are looking forward to actually spending some time together as a family!

Isolation Sucks!

2009-03-31T10:19:00.000-08:00

So Elizabeth, Megan and I arrived early Monday morning and hopped the shuttle to the Ronnie MacDonald house. It was SOOO good to see everyone and be together. Ben had been to the ER on Sunday due to the flu (influenza B) and started on some medications. Cari was also feeling punk so dad set down his bags, picked up Ben and headed for the morning round of tests.

We did the blood draw quickly and then had a bite for breakfast. Just as we got back to the Ronald MacDonald house we got a call and the draw had been mishandled so we headed back for another lab draw. We also met with the doctor for a few minutes. We got back and were able to hang out with everyone for a minute or two and then we decided to go get Cari a flu shot to try to stop any other strains of flu from knocking her out. On our way out the door we checked Ben's temperature -- skyrocketing.

Dad and Ben were back to the hospital. Unfortunately, we were 30 minutes late for the Hem/Onc office to see us so we went into the ER again. After 3 hours there getting fluids, Tylenol, and other meds we got checked in.

We are now in isolation on the third floor. This means that Ben and Dad get a 12X12 room together and everyone who comes in has to gown and glove and mask up. I think Ben figured out how to twist the catheter lines so that he could get more visitors. Because Ben is on fluids all the time I forget how fast they go through him. He totally wet through all layers around 2am. Unfortunately, our nurse was a brunette and Ben thought it was mom. When she left after changing the bed he did not like dad very much. He woke up enough to calm down and then slept next to dad for the rest of the night -- and I thought a fold out chair was tight alone . . .

Grandma and all the girls came to see us this morning. Ben was NOT happy when the left without him. He has loved all of the nurses coming in and flirts with every one of them. He is playing with a couple of the hospital volunteers right now. I think the nurses were glad to see dad head for the showers after a couple of days without a shower. Ben's counts are climbing, slowly but surely. We will probably be hanging out in isolation for at least today and tomorrow, then if no more fever we can get released. We'll see how things go. Cari is still under the weather and I guess Nathan started to cough and hack last night, LUCKY!!

The sky is falling....

2009-03-29T08:36:00.001-08:00

Okay, maybe it isn't the sky but there is definitely ash falling on Anchorage right now. Johnny and the girls were supposed to fly to Seattle last night but their flight was cancelled. They rebooked for tonight but.... At some point I am sure we will see them.

Not only is ash falling, but so is Ben's hair. I did a "pull test" last night and ended up with hair in my fingers. Lucky he has such a cute head!

Someone sent me a fun quote recently. "The impossible can seem possible if you're awesome!" I think the quote is from the new Pixar monster invasion movie. We have decided it is a great quote for Ben. He truly is awesome!

Moving Forward

2009-03-27T22:50:00.000-08:00

They are wtill watching Ben's numbers pretty closely. He went in today for labs and they were surprized to find that he did indeed have some white blood cells forming. He needed a transfusion to get his red cell counts back to where they want them so he has had his first of what may be many transfusions. Being new to this it is a bit unnerving but I guess things are going exactly as planned. They are targeting early next week for his stem cell harvest.

Once his counts begin to climb he will get a dose of hormones that will speed up the production of stem cells. This should not only increase the numbers for the harvest but help him recover more quickly from the affects of this last round of chemo. Monday or Tuesday they have tentatively scheduled surgery to place another line to be able to do the harvest. Unfortunately, once this line is in place he will be bed or lap bound and not able to walk or run around. I am sure that will make for long days until the harvest is completed. Not long afterward he should probably begin his next round of chemo.

We are still pretty up in the air regarding radiation treatments. We found out that he is not a slam dunk candidate for the proton radiation treatment our doctors have been discussing all along and that only one in five of those that are a slam dunk candidates get in to Boston. We are still on lists for Boston and Houston and hoping that the treatment is available in the timeline we need it. We know the doctors have Ben's best interest at heart and are doing everything they can to get him the treatments he needs.

The girls and I don't have words to express how excited we are about joining everyone in Seattle on Sunday -- barring any travel changes caused by Mt. Redoubt. It erupted again today but there has been some air traffic. Guess all we can do is wait and see what happens tomorrow . . .

Looking up

2009-03-25T12:11:00.000-08:00

Ben still has a little bit of a fever so he can't go to lunch with mom, grandma, and the siblings but he is much improved from yesterday. When I called he was riding a tricycle around the floor and seems to have some of his energy back. He is NOT happy about being confined away from the other kids. His newest trick is to grab mom's cell phone and lick it or lick her and then giggle as he gets away.

Hopefully he will only be in the hospital for a couple more days to watch his cell counts and then released for a bit between treatments. Ben's neighbor in the hospital has the same cancer. She was out for 5 hours after her last treatment and then back in so this may be a recurring theme but for now we will take the improvement.

Rough morning

2009-03-24T13:08:00.000-08:00

They have been tracking Ben's blood cell counts pretty closely. As intended his treatment has caused his white blood cell count to plummet to nothing (less than 1% yesterday). So obviously he has no defenses to fight off any infections. This morning he woke up and was pretty pale, very lethargic, and had a fever. Cari and he are checked into the hospital where he is getting a dose of antibiotics and they are working on getting rid of what ever it is that he has come in contact with.

They are waiting on labs now but it looks like they will be in the hospital for a couple of days. We don't yet know if this will set back the timelines for his stem cell harvest or his next dose of medication. It will all depend on how he responds to the antibiotics and how fast his cell counts improve.

I spoke to grandma this morning and it has been kind of unreal to this point. Ben has been so full of life and energy and playing as hard as he can with his siblings. This morning it got real. There he was, a sick little boy looking pretty helpless and resting on his mother’s shoulder. This is not unexpected, just obviously not hoped for.

We extremely grateful for your continued thoughts and prayers!

Fun at the house

2009-03-22T20:14:00.000-08:00

The kids have been enjoying playing together. There is an indoor play area in the basement of the Ronald McDonald house. There is a giant tree with a slide down one side, a big leopard and a turtle to crawl on, as well as a hollow log to crawl through and a bridge to crawl over.

Nathan is such a ray of sunshine as always. So sweet and yet all boy. He thinks all bodily functions are hilarious and lets them rip at many an inappropriate moment!

Ben's head seems to be healing well. I was checking it out tonight to see if I could feel where the bone had been cut... I really am a science geek. Should've gone into nursing like I started out to do.

It won't be long and I will cringe when Ben goes out to play. His blood counts should be dropping rapidly and along with infection I will have to protect him from bumps, cuts, and bruises. It's so hard to have to curtail normal child behavior.

There was a group from a local high school that brought lunch in today. They also brought the easter bunny and some eggs and candy. Ben LOVED the easter bunny! None of the kids ate well because they were so busy watching the bunny. Samantha is an embarassingly good easter egg finder. I made her take some of her loot and give it back so other kids got some too!

We're Home!

2009-03-19T21:08:00.000-08:00

Home, of course, being the Ronald McDonald house... Ben was released from the hospital this afternoon. It is so nice to be in our own space and to be able to spend time with family. As long as Ben stays healthy, he can stay out of the hospital for a while. I have taken a crash course in nursing and have to give medicines, shots, and take care of his central line. It is a LOT of work and a LOT of reponsibility. I already had to call the hospital tonight with questions about his medicine. Ben is happy! He runs, what's new, like any normal busy one year old. He has not thrown up once yet but he is not out of the woods yet. His blood counts should drop dramatically over the next week. We will not only have to watch for infection, but also avoid bruises and cuts. Chances are, we will be back in the hospital for some reason before the next chemo round starts. We are doing well!

Pictures!!!!

2009-03-15T12:33:00.000-08:00

This is Ben riding on his "lilly pad". If you look closely you can see the wood board he is sitting on is shaped like a lily pad.

Sorry, you will just have to turn your head...I managed to post the pictures but I can't figure out how to turn it right side up!

Ben laughed and laughed at Samantha all during lunch today. Then when we got back to our room he just crashed.

He is still my sweet baby boy!

We are still here

2009-03-15T09:58:00.000-08:00

To those of you who have been trying to contact us...We sometimes get to read email, but rarely get to send a line back. On occasion we sit by a phone...but not for long before Ben wants to run again. Your efforts are NOT unappreciated and needed. Thank you all so much for the continued support.

So, the update: Ben started chemo late Friday night, or early Sunday morning, depending on whether you are a night owl or an early bird. They took a second liver test and he passed the protocol standards to continue on with the clinical trial. So far, he really has not slowed down. No noticeable nauseau or anything else. We are waiting for the first chemo drug to leave his system before they move on to the next. He was so close this morning....but protocol says we have to wait. Hopefully by tomorrow morning. The next chemo drugs they say are more likely to make him feel sick. He is going in to this pretty strong so I am still hopeful. My goal right now is to keep him eating enough so he doesn't need to eat through a tube. Wish us luck!

Grandma, Nathan, & Samantha have arrived and Ben is so excited to have them here. I am also glad to have theme here as well. Now if we can just keep everyone well and get Ben out of the hospital we can have a little fun together.

Are you KIDDING????

2009-03-12T14:17:00.000-08:00

So after blogging last night I went back to Ben's room only to find they were trying to decide where to move him. Apparently one of his fingertips(where they previously drew blood) had an absess. The surgeon who put in Ben's central line noticed it, lanced it, and sent it off for a culture. Well, it came back positive for strep....they weren't sure which kind so Ben had to be isolated and tested. Needless to say, we moved rooms last night. Ben could no longer leave his room, the nurses had to wear gowns and gloves to enter, and I was only allowed in his room and off the cancer floor. This morning his blood test came back and he does not have flesh eating staph so he no longer has to be isolated. So while we were off having a hearing test (one of the chemo drugs can cause hearing loss) they moved us back to our old room. Ben also had an ultrasound of his kidneys and an echocardiogram done this morning. Then the doctors finally made their rounds. Ben's blood test for liver function was not good. It was one point too high to be allowed in the clinical trial for his cancer.... Now what? Ben's oncologist tried to see us before he left but he is now out of town until Monday. They drew blood again to retest...but we are waiting for results. If it's not one thing, it's another! I don't know what the plan is if he is not allowed in the clinical trial. The other contacts I have are also not in the hospital today. They will be back tomorrow and I am now waiting to hear from them.

The Seattle Marathon

2009-03-11T20:22:00.000-08:00

Today I ran the Seattle Marathon....the course winds round and round the halls of the cancer unit at Seattle Children's Hospital. Seriously, if I had on a pedometer, I'm sure I walk miles and miles carrying, pushing, and chasing Ben. If I missed your phone call, or didn't respond to your email...well I couldn't quit the race now could I?

Today was also another starvation day for Ben. They were running a kidney function test that left him hooked up to an IV post (yes I was dragging that along during the race). The test allowed him to eat and drink clear liquids and solids that had no sodium in them. I wonder where he got all of his energy? I learned first hand why we don't just let our kids each nothing but sugar all day! Fortunately he has now finished his test, eaten his weight in mac n cheese, and fallen into a deep slumber! (No nap today either...) Now I guess it is my turn. There is more testing tomorrow though....

Successful surgery

2009-03-10T21:36:00.000-08:00

Ben got his catheter today. Unfortunately, it was a really long day leading up to the surgery. Ben was scheduled to go in at 1215pm. That means that he could not eat after 530am. As you may have read previously, the most dangerous place to be is between Ben and a meal. He screamed for most of the day until they finally took him in around 430 in the afternoon.

I guess the nurses came in frequently to ask if there was something that needed to be done to help calm him down. Yes - FEED HIM! Anyway, after surgery he ate jello, fish sticks, drank juice and pretty much made up for lost time. He longingly looks at all of the older children. I am sure he will be excited to see his siblings come Friday.

Not so uneventful LONG days

2009-03-09T21:08:00.000-08:00

As luck would have it during the long days between visits to the hospital Cari has managed to pick up some kind of bug so not only does she get to deal with all of the appointments but gets to do it in a mask and weather all of the cross-way looks from people in the hospital. Ben, however is a fantastic nursemaid. He finished all of the meds that were causing constipation but not the laxatives that went with them so he was able to make a giant mess on clothes, floor, you name it. $*%# truly does happen.

Next he decided that he wanted to try to even out his haircut and got a hold of Cari’s razor in the bathtub and shaved a little patch out of his new fuzzy hairdo. Last but not least he found a care-package Cari received today and was able to shred most of the packaging and begin playing with some of the soap. Such a great caregiver.

As you can imagine, Cari would like to be able to curl up and sleep until she feels better but no such luck with Nurse Ben on duty.

Ben is scheduled to go in tomorrow (3/10) to get his Hickman Catheter. This catheter is surgically installed and the method through which he will receive his chemo, any meds, and the way they hope to harvest stem cells between treatments. He will also have a spinal tap tomorrow to test his spinal fluid for cancer cells. We hope there are none present. This will weigh heavily on whether he will be able to have focused radiation treatments or whether they will have to irradiate his entire body. The total spinal irradiation is not where we want to be because it can negatively impact growth and development much more than the focused method.

On the home front we are missing Cari and Ben more than words can say. We are extremely grateful for family, friends, and ward members. Between the meals, the service, play dates for kids, generous donations, airline miles, and heartfelt support we feel extremely blessed. I feel like not a person passes me by without checking in and offering support. We are excited that Grandma Allred, Samantha, and Nathan will be joining Cari and Ben in Seattle on Friday. I know that Cari is looking forward to having more of the family there for support and to fill what feel like very empty arms right now.

Again, I cannot express how grateful we are for the outpouring of support we have received.

We've Moved

2009-03-08T12:41:00.000-08:00

Ben and I are enjoying a relaxing...okay boring weekend. He can't stand to be in the room so I spend most of my time chasing him around in the halls. At least they are different halls today than they were yesterday. We were offered a bigger room. Our old room only allowed 4 occupants. This room is much bigger. Now we are ready for Grandma, Samantha, & Nathan to come stay with us! Here is our new address:

Ronald McDonald House Bldg A Room 203
5130 40th Ave, NE
Seattle WA 98105

Also, I have experienced some problems with my email lately. If I didn't respond...that's why. Thank you so much for all of your love, prayers, and support. You are buoying us up!

Another Good Day...

2009-03-06T22:01:00.000-09:00

The sun was shining & Ben was playing happily throughout the day. His favorite game is chase. He can open pretty much every door in the Ronald McDonald house, so he does of course. When I am preparing a meal in the kitchen or cleaning up when we are done, he loves to sneak of the door and run laughing down the hall as I chase after him. He is definitely the most active child I have seen here so far. Hopefully that will continue to be the case even after starting his treatments. The medical staff are still amazed at how well he seems to be recovering from his surgery. I don't have anything to compare his recovery with but I am grateful to have his busy fun loving self back!

We met with another member of his medical team today. She gave me a huge blue binder full of general information about cancer and the treatments and care he will be recieving. The information I recieve from the doctors, while still a bit scary, sounds much more promising than the things that many of you have read about on the internet. We were warned at the beginning of this adventure to be careful about the information recieved on the internet. Don't let it freak you out either! Johnny and I both still feel good about the decision to continue treatment here in Seattle.

On a more fun note....my children are coming! The two in school will come for a short visit before Benjamins radiation treatment begins. Then they will keep Johnny company in Alaska until summer. The younger two will come live with Ben and I here in Seattle. Mom Allred will be coming as my right hand and second mother. She is an angel and we are so grateful for her. Ben is very happy when he sees pictures of his siblings. I can't think this will be anything but good for him. I know it will be good for me.

All on my own

2009-03-05T18:56:00.000-09:00

I am feeling a bit alone tonight. Johnny is on his way home to be with our other children. I am okay though. The hardest thing for me right now is missing my other children. In order to be a mom to the one, I have to neglect the other four for now....and that is not okay with me. I've always wanted to be a mom. I LOVE being a mom. Hopefully we will be able to make arrangements for the kids to come see Ben and I for at least a little while. And eventually, we hope to be ruinited as a complete family. Home truly never sounded so good.

I can't write anything without expressing my gratitude for you, our friends and family, who are supporting us at this time. You may not feel like you are doing anything but you are. Your prayers, phone calls, emails, visits to our children, etc.... they are helping us more than you will ever know. Thank you.

Not what we hoped for but all is not lost

2009-03-04T16:22:00.000-09:00

Well, we met with the oncologist right after the tumor board today and the news was not great, in fact just the opposite. The type of tumor Ben has is an Atypical Territorial Rhabdoid Tumor (ATPT) type cancer.

Now I will try to remember everything so it may be a little sketchy. The tumor is very aggressive. We need to begin chemotherapy next week. We have a number of options to consider at this point and are not 100% on everything but this is kind of the tentative direction. Monday or Tuesday Ben would get his Hickman Cathater. Through this they will administer chemo, extract stem cells (part of the therapy -- kind of a modified bone marrow transplant procedure), administer meds, etc. By the end of the week he would begin his treatments.

Ben would do 5 to 7 days of treatment, then be off for 2-3 weeks with close monitoring for side effects. After 2 rounds we will probably need to go to Boston or Houston for a new radiation therapy called Proton beam therapy. It all sounds very "Trekkie" doesn't it. He would receive one radiation treatmene a day for 6 weeks ~ish.

Then he would come back to Seattle for the remaining 3 rounds of chemo. The whole thing will take 6 or so months. With this type of chemo the odds are not great -- 30-50% survival. He has some good things in his corner like his age, placement of the tumor, and the way he has been recovering. The center here in Seattle is world renowned for cancer treatment and in fact we have a new treatment trial available to participate in as well. We will know after the first two rounds of chemo how he is taking to the treatment and whether we will need to go to Boston or Houston or just to go home and enjoy the time we have together as a family.

We have TONS of decisions to make at this point and like I said, still finalizing things. Your continued prayers are very much appreciated.

Waiting

2009-03-04T03:12:00.000-09:00

Today we went for a nice walk and kind of just hung out again. We got a call from the Oncologist and have an appointment for Wednesday at 2pm. I don't know what that means. We are unsure if that means the tumor was easily identifiable and the procedure straight forward so we don't have to wait for the tumor committee; the Oncologist wants to just have an initial meeting; or any number of other possibilities.

It has been nice to walk around in the warm weather. We couldn't have asked for better for these long waiting days. The down side is all of the questions that you have time to think of and all of the possible scenarios you can imagine. We will try to let folks know what we find out once we hear from the Oncologist.

Just Hangin' Around

2009-03-02T17:29:00.000-09:00

We had a pretty lazy day today. We walked down the street to get Ben some clothes so he wasn't stuck in hospital pajamas. We pulled a wagon down the street about a mile to the local mall, got some clothes, some lunch, and were simply relaxed. Ben did pretty good.

We went over to the hospital to pick up some mail and ben took a ride with mom on the hippo outside. After we were done we walked back to Ronnie's and took a picture with him. Ben is a little wobbly. He seems to be using both eyes and the left one is still a little bit crossed.

We are all well here. Waiting is no fun but there are worse things . . .

Free at last - Kind of . . .

2009-03-01T15:14:00.001-09:00

It was good to leave the hospital with Ben. We hit the pharmacy and about needed a shopping cart to cary all of the different anti-seizure, anti-stomach ache because of the anti-seizure, pain meds, etc. etc.

We are now just chillin' with Ronnie until Thursday morning. Thursday morning we will find out about chemo, when, where, and how much and if we will start here or in Anchorage and how frequently we will end up coming back to Seattle for check ups.

Anyway, we are still extremely happy to be out of the hospital and have Ben with us. Soon enough we will find out the next steps in this lifelong journey.

Discharge this morning

2009-03-01T08:34:00.000-09:00

The doctor came in this morning and Ben ran over to let him in the room. He chuckled and said he can't see a reason to keep us in the hospital. We are being discharged this morning and will be at the Ronald McDonald house until Thursday.

The tumor committee meeting is late on Wednesday so we will check with our Dr. on Thursday morning to find out the plan of action from there. We will probably meet with the oncology team on Thursday some time as well to find out where we go with chemo, etc.

We are still way unsure of where we will be when at this point. We could be on airplanes as soon as the end of the week, or we could be looking for someplace to be here for treatment for a while -- no clue.

Thank you everyone for your love and prayers. Things are looking GREAT!!

Ben Unplugged

2009-02-28T19:09:00.001-09:00

Today it was really great to spend the day with "Ben Unplugged".

We rode the giraffe, got pulled around in the wagon, drew pictures, ate lunch together, and played in the soft blocks. He did some business while we were at the play room. After we walked to the room and changed him he was super tired riding back in the wagon. Just as we entered the playroom again he sacked out. We headed back to the room and let him take a nap.

We got a little behind on the pain meds because of the nap and it was not pretty for a while. We will definitely be more diligent on keeping right up on the meds.

We met with the neurosurgeon for a few minutes and he said Ben is doing super. I hate to read too much into comments but his parting remark was "he looks like he is way ahead of schedule". This was as Ben was walking off down the hall to do his own rounds.

He has really been happy Ben for most of the day. He hates it when a nurse comes in wearing blue gloves because he knows some testing, poking or other is coming. For now it is just a waiting game.

Our favorite sayings so far:

- "Stupid Cancer"

- "Brain Bumps Suck"

- "It's only a brain tumor . . ."

I think we want to make at least one of these into a T-shirt . . .:)

Moving Day

2009-02-28T12:47:00.001-09:00

We got to move out of the PICU today. Another step in the right direction. It looks like things are progressing well. As soon as he got untethered from monitors he was ready to run around. He has gone for walks inside and out, came to lunch with Cari and I and ate french fries, and enjoyed going for a wagon ride around the hospital.

We are now on the third floor room 3017.

Ben is now exploring the pull out couch, has watched a couple of cartoons and decided the spoon was too much of a nuisance so he ate applesauce with his hands. Cari just changed his diaper and Ben was trying to jump down and run away -- his favorite game at home.

We have been really worried that he would not come back with personality in tact. For now, we are excited to have our Ben back.

We are still wondering about some of the logistics and timelines. One of the neurosurgeons mentioned that we may not be kept in the hospital until Wednesday when they do the pathology on the tumor. We don't know if that means we are moved all out into the Ronald McDonald, or if we are out of there too because Ben was released. It could be a day, could be two, we just do not know.

For now we are loving playing with Ben . . .

Mail instructions

2009-02-27T20:22:00.001-09:00

We have had a number of requests on how to send mail. We can receive mail at the Ronald McDonald House at:

BENJAMIN ALLRED Bldg C/Rm 203
Ronald McDonald House
5130 - 40th Avenue NE
Seattle WA 98105

J-E-L-L-O

2009-02-27T18:15:00.000-09:00

Finally, we made it through the MRI and the wait for the anesthetic to wear off. Melissa (awesome nurse) is now his best friend because she brought orange Jell-O. He is on cup number three and still slurping as fast as he can go.

New favorites:
The blue "suzie" blanket he was given at Providence before we left Alaska (Suzie was our spotted springer spaniel in Utah. The blanket has spotted white dogs on it). He uses it to hide from the doctors and nurses when he thinks pokes and prods are coming.

Orange Jell-O, 'nuff said . . .