Allex

Allex Admitted to Hospital

Wednesday is our regular day at Children's hospital and we were scheduled to update all of our MRI's and CT's to gauge how well the Tarceva and other treatements are going.  I wish yesterdays scans would have showed encouraging news for Allex's health, but unfortunately it was the opposite result.

Based on the test results Allex was admitted inpatient at Childrens yesterday.

The MRI shows dozens of brain tumors and the tumor in her brain stem has regrown.

The CT scan shows her left lung has collapsed and this has caused her heart to shift in her chest and it is now working even harder.  Her right lung to be about 50% tumor and then 25% collapse and is surrounding by a growing amount of fluid.  Her oxygen sats were as low as 83% last night and she is struggling to breathe.

The tumors elsewhere in her body are also multiplying and growing in size.  We have her heavily sedated and on anti-seizure medication to ease the pain and make her body less aware of the lacking oxygen levels.   

She is at Childrens on the 4th floor due to admit timing but we expect to transfer her to the HemOnc inpatient ICU sometime today.

The doctor says we only have a matter of days left.

Sharon

Tarceva

We've received many emails from people wondering how Tarceva works, so we thought we would post it online for everyone to read:

Many different types of cancer cells, including non-small cell lung cancer, have a "receptor" on their surfaces called the "epidermal growth factor receptor." This receptor receives signals that tell the cancer cells to grow and multiply. Tarceva works by blocking this receptor and depriving the cancer cells of these signals.

Sharon

Japan Trip

We are finally back. Check out the pictures by clicking here.

Japan was the whirlwind to say the least! We left on Tuesday March 14th- arrived in Tokyo on Thursday afternoon... went Seattle to Atlanta, GA to Tokyo-Narita. Someone with a private jet really should consider the tax deduction of a donation to Make A Wish!

Thursday night we went to bed early to adjust to the 17 hour time difference and to be rested for our adventures to come.

Friday we spent 2 hours driving to Sunrise Studios where Allex spent her time learing how to draw Anime from an artist.  I think her picture is quite good too. Jordan and Ryan also tried their hands.  Not only did Allex meet the artisit Nao, and get her autograph on the picture, but she also received a cell, a stuffed character and a framed sketch!  She was so excited! Of course it was also her birthday so we celebrated with a cake and a nice dinner.

Saturday found us Shopping at the Mandrake shop for Manga and the local toy store then on to having lunch at a noodle shop in the mall.  Then it was off to Satelite Studio.  We met not only the man who designed the Valkyrie fighter plane and turned it into transformable toys (from 3 planes into 2 unique battle creatures), but also the director of Hellsing, and the owner of TokyoPop, Stu, who is working on a joint venture movie with Satelite Studios.  Lots of excitement to tour the facilities, meet lots of people and learn a ton about Anime from many different perspectives.

Sunday was a private tour of Ghibli Museum.  We were able to go in an hour before anyone else (the line was a block long too) and we were given special permission to take a few photos.  Ghibli is where Hayao Takahashi preserves all of his best work and lets you into the inner workings of his anime.  We were also able to see a short movie that just started playing.  I think we could have spent days there exploring it all.  But after all the crowds came in it was very difficult to get Allex around in her wheelchair.

Our afternoon was also booked with Tokyo Disneyland!  We took the minvan cab out to Disney -- about 90 minutes away from Ghibli.  Our timing was not great for weather and we had a very cold and rainy afternoon.  It was also a very busy weekend for Disney and there was thousands of people there.  We were able to get on the "It's a small world" ride and Allex voted for the "Star Wars Adventure" ride too.  I was a little worried about it being a simulator ride (nausea and fagility and all) but she really wanted to go...She had a blast and was smiling the whole time.  Finally we went to the mouse house.. a tour of Mickey Mouse's house where we were able to snap a quick picture with Mickey himself.  We took the train back to the hotel and now have a greater appreciation for cattle cars.  Just kidding- it was crowded, but still lots of fun.  Allex was loving the whole adventure.

Like I said, a whirlwind tour.  We had to leave Monday morning at 1030 to get out to the airport in time for our 1630 flight.  International airports are chaos enough and trying to get a wheelchair thru was an adventure only second to the Tokyo trains.  We managed to only loose 1 piece of luggage -- Jordans suitcase.  She claims she really did not need her favorite clothes and school books with her homework anyway.. She says I should just send a note to school and take her shopping... hmmm... not sure how that really works.  She is dissapointed to loose her digital camera card and some souveniers.  Hopefully we will track down her bag.

Today was getting life back to normal- catch up on sleep and another day at Children's Hospital.  Not any news from the hospital this week.

Next week Allex will go back to UW Medical Center to meet with the Radiation Oncologist to start radiation treatments on her right arm and sternum and have an MRI to check the status of her brain tumors.  She will also have a CT scan at Children's to see how the fluid build up around her lungs and heart is progressing.  Based on how she is feeling it seems to have gotten worse.  All the flying time probably did not help much either.  But she says it has been worth it to see Japan and meet such amazing people.

Thank you to everyone at Make A Wish-Seattle, Make A Wish-Japan and all the amazing people at Sunrise Studio, Satelite Studio, TokyoPop, Ghibli Museum, and Disneyland who made all of this happen.   I have not seen Allex smile this much in years!!!

March 1, 2006

Other than a few minor complications on Monday, the surgery went well overall.  She is having a lot of trouble with nausea and we just added 3 new meds to her list so hopefully something helps.  Her counts are all dropping left and right and we are really pushing to get her trip fast.   Wish it was better news.

Tarceva is going- will take a few weeks before we know if it is working.  We will run the set of tests that will confirm or deny success around the end of March.