Monday, September 28, 2009

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!!


The Allreds

Monday, September 21, 2009

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!

Wednesday, September 16, 2009

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.

Friday, September 11, 2009

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.