Airplanes and Santa

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 . . .

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

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!!

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

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!!

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

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!