Allex

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.

Another Surgery

Hey All..

We just got back from a weekend trip to Childrens hospital... Allex's central line refused to flush or draw last night which is an immediate cause of concern.  We did yet another chest x-ray and it shows her line is now kinked off- somehow it is no longer placed properly and has slid down into the very top of the right atrium just above the valve.

sooooo.....
Monday will be surgery where we will be removing her line and placing a new one.  Guess it will be another long day at the hospital.  Not sure what time the surgery will be as we are working into the schedule.  Since she has a fluid build up around both her lungs and heart the surgery carries more risks than it did back in December.

We'll let you know more later...

Sharon & Aaron

ps- We did start Tarceva on Saturday.. woo hoo!

More Tumors

Last Thursday she was having difficulty breathing so we did a chest x-ray, this showed fluid build up around her right lung and continued growth on a lung tumor.  Today we did a new chest CT which confirmed the fluid around the right lung, but also fluid around the left lung, and heart, as well as growth of 3 tumors.  A further heart echo showed definite fluid around her heart now too.  The fluid levels are not at a critical level today, but they seem to be increasing rapidly so we will be back at the hospital on Friday to run additional monitoring tests.
Based on current lab results and these findings Chemo is no longer an option.  The chest radiation we were looking to start is also out of the question due to the dose size that would be necessary to deal with these 3 fast growing tumors.

So we are left with trying to get our insurance to approve Tarceva.  They contend is it not FDA approved for use in anyone under 18.  We know that, but we have a valid Rx and doctor approval.  So Childrens has decided to order the drug for us and we will just have to either gain insurance approval or we will soon have a huge bill to deal with ($80 per pill/ 60 pills per month= $4,800).  Success rate is not great- 10% see a 2-3 year life, but it is the last option available so we have to try.  There are still no clinical trials available.

Make A Wish trip needs to happen very soon or it will also be out of the question.  The next month may be about as far as we will get with travel approval from the doctor.

Buzz Cut

Last week was a 4 day week at Children's Hospital- lots of testing and the discovery of fluid build up around her right lung.  Round 2 of Chemo continues tomorrow, chest radiation is now needed for a lung tumor that is not responding to the chemo- it will begin as soon as there is an opening in the schedule at UW, and the shingles (adult chicken pox) are finally starting to heal.  The blood transfusion from a little over a week ago has helped with Allex's energy level and she was able to attend her grandfathers funeral this last weekend.  She came home exhausted from the trip but happy that she could go and say goodbye to him.

Allex was down to about 10% of her own hair so she finally opted to buzz the last few strands off..on the condition that Pete and Aaron shave all of theirs off at the same time.  Aaron has hair that grows back so fast though it never really got smooth...LOL

Luckily she still has a sense of humor on most days!

We are still waiting to hear on dates for the Make A Wish trip....hopefully soon.  Allex's over all health has been declining so our window of opportunity for travel is diminishing.

Still waiting on approval for Tarceva from the insurance.

Make A Wish does not cover it (Tokyo Disney) since it is not part of her specific wish.  There coverage is for the transportation to Tokyo, hotel for 8 nights and the specific wish to see the Animation Studio.

Donations

Through your donation, we are raising funds to help the family pay the cost of the last drug available to improve and prolong Allex's life.  While the family has a valid Rx and doctor approval, the insurance company is balking at paying.  At $180 per pill and 2 pills per day, that leaves a monthly bill of $10,800.

In addition, we also recommend the following charities:

Children's Hospital - Seattle
Click "Memorial or Special Occasion"
Name of Person:  Allex Apley

Make A Wish
In Honor of:  Allex Apley
Recipients Email:  DesignCafe@aol.com

February 14th

Allex is having a rough time.  Her little face is so swollen you can barely see her nose and the shingles look awful.  She went down to the hospital yesterday for lab work to see how well Friday transfusion worked, but ended up going back today because the shingles rash has grown substantially worse in the past 48 hours.

January 2006

Allex has been having a tough time.  Feeding tube lasted about 30 hours before nausea won out.  We have added 3 new drugs to her mix to combat the headaches, nausea and grumpiness.  She is down to 100 pounds and missing half her hair.  I found a lung cancer specialist in St Louis who called me back and talked for about 30 minutes today.  He has an  associate in Seattle at Swedish who is willing to consult with us.  May lead to a trip to Missouri yet.  Overall her spirits are still good most days.

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Christmas Picture

We just wanted to share this beautiful family Christmas picture with you. Allex is the one with the glasses. You can click on the photo to see a larger version.