Allex

Memories to Share

Video
You can now see Allex's Memorial video by clicking here.

Memorial Program
To download Allex's Memorial Program click on this link: Download Program.pdf .

Newspaper Article -- Front Page

"Heartfelt words touched girl's life"

EVERETT - Two cardboard boxes sat on a kitchen table, barely holding all the letters and cards. One card was filled with messages from classmates. "Fight on! We are rooting for you," one student wrote. "Stay strong and remember our love," another said.

Click here to read entire article...

From her classmates:

Spokane, WA Spokesman Review Newspaper on Friday April 14, 2006:

IN MEMORY OF
Allex Apley-Conner
03/17/1988 - 4/6/2006
"Our gentle, quirky friend, with a mischevious
sense of humor who
radiated joy & delight".
-The Students and Staff of North Central High School-

Allex's Memorial Notice

Here is a link to Allex's published Memorial Notice.

Allex Memorial

To Our Extended Friends and Family:

With great sorrow we send out a final “Allex Update”.  On Thursday night (04-06-06) at around 9:00 pm Allex passed away.   Our family is extremely saddened but is comforted in the fact she is no longer suffers.

We were overwhelmed with the amazing turnout on March 10th at the Flying Pig as many of you supported our family in person and financially.  The event was fantastic and Allex had a wonderful time.   She enjoyed meeting everyone, the awesome music by Station House Blues, and Sgt. Britton’s serenade!  Allex didn’t want to leave at the end of the night.  Thank you for spending time with us and your support. 

On March 14th – 20th we flew to Tokyo for our Make-A-Wish trip.  Allex picked the location because she was a HUGE fan of anime (Japanese visual animation) and manga (Japanese written cartoons).   We spent 3 fast and furious days touring two creation studios, the Mandrake anime shopping center, a museum and Tokyo Disneyland.  We met the original creator of “Tech-Mech” creation (Transformers and the like) and the artists of several of her favorite anime characters.   Allex understood everything, but most of it went over my head.  The museum was beautiful - Our tour began 30 minutes before the doors opened and we were allowed to take pictures.  (Aside from marketing – taking pictures inside are prohibited.)   The trip was great and we had a blast.  Allex maintained great spirits and health throughout.  Pictures of the trip are here.

After returning home Allex took several days to recover.  On March 25th (Saturday) Allex was invited by Make-A-Wish to SakuraCon in Seattle (anime convention) where she had a great time as a guest of honor and shared the day with one of her best friends, Barrett Taylor.   She quickly fatigued and her health declined over the next several days.

On March 29th (Wednesday) Children’s ran the 6 week CT and MRI scans again.  The results were shocking.  All of the original brain lesions returned but were dramatically enlarged.  There were also numerous new lesions.  Additional scans showed Allex’s labored breathing was due to a collapsed left lung.  The right lung was 50% filled with tumors and 25% fluid.  The Tarceva, chemo and radiation had failed and the prognosis was days.  Allex was admitted to Children’s Hospital.  If Wednesday was horrible, Thursday was worse.   During a short period of consciousness, Sharon and I told Allex the medications failed and her body couldn’t fight anymore.  Allex replied, “I guess we will see if it really is mind over matter.”   During the next several days Allex’s health declined but much to everyone’s surprise she made it to the weekend.  The weekend and following days were the hardest Sharon or I have ever experienced.   We watched helplessly while Allex deteriorated and her organs began shutting down.  Late Thursday afternoon Allex’s remaining lung began filled with fluid.  The final 2 hours were awful as Allex continued to struggle and fight.  In the end she was finally at peace.

We cannot thank you enough for your support over the past 4.5 months.  Your thoughts and prayers were welcome and calmed our family.   We appreciated the wonderful food, help and financial support.  Allex’s journey was too short and extremely tough but your support kept us strong.  It was wonderful knowing so many people were praying for us.

There will be a memorial service at 2:00 pm on Saturday April 15, 2006 at Timberlake Christian Fellowship (4505 236th Ave NE Redmond, WA 98053) with a reception to follow.  Child care will be provided during service and social time. 

Sharon & Aaron Snell

Links

A local newspaper, The HeraldNet, wrote an aricle about Allex on 3/8/2006. It's called Courage stands in for cure.

And this is a letter to the editor from Officer Jamie French, who was the main organizer for the Benefit event. It was published on 3/18/2006.

Update

Allex is not doing well- she is inpatient at Children's hospital in Seattle.  If you would like to visit, she is registered as Allexandra Apley-Conner and she is in the SCCA, 3rd floor, room 3290.  Visiting hours are 10am till 8pm.

Allex's health has dramatically declined since we returned from Japan.  She had a few days a jet lag, a day of pure fun when she received a huge box of gifts from Japan and spent the afternoon at SakuraCon (An anime convention in Seattle), but then she changed and she ate and drank very little and was not awake or coherent.  Allex complained of sever pain in her neck, shoulders and right arm. 

Last Wednesday (3/29) we headed into Children's hospital for Allex's weekly doctors appointment and the 6 week MRI's and CT's to gauge how well the Tarceva and other treatments were going.  The results were poor.  The MRI shows dozens of new brain tumors and the tumor in her brain stem has regrown.  The CT scan shows her left lung has collapsed - causing her heart to shift right and forcing it to work harder.  The right lung is about 50% tumor and 25% collapsed and is surrounding by a growing amount of fluid.  The tumors elsewhere in her body are multiplying and growing in size.  The news was not good.

Allex was admitted to Children's Hospital that night where she remains heavily sedated. Her oxygen sats have sagged to as low as 72 and she struggles to breathe.  We have her on oxygen to make her more comfortable.   Anti-seizure medication and morphine ease the pain and make her body less aware of the lacking oxygen levels.   Doctors are not pushing a feeding tube and we have discontinued IV fluids because they don't believe it is necessary now.  The optimistic outlook last week was 7-14 days and she has fought for each of the last 5 days.  We pray for a peaceful passing but always remain hopeful for one last miracle.

Thank you for your prayers and support.
Aaron & Sharon

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.

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!