Allex

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.