Home Allie's Story Video Files KT Photos Guestbook Links  
 

 

Home
9/13/04 - 9/14/04
9/6/04 - 9/13/04
8/31/04 - 9/5/04
8/23/04 - 8/30/04
8/16/04 - 8/22/04
8/9/04 - 8/15/04
8/2/04 - 8/9/04
7/26/04 - 8/1/04
7/19/04 - 7/25/04
7/12/04 - 7/18/04
7/5/04 - 7/11/04
6/28/04 - 7/4/04
6/21/04 - 6/27/04
6/14/04 - 6/20/04
6/7/04 - 6/13/04
5/31/04 - 6/6/04
5/24/04 - 5/30/04
5/10/04 - 5/16/04
5/4/04 - 5/9/04
5/17/04 - 5/23/04

  

Allie's Health Updates

Updated 10/17/2004

     

Click here for daily logs of Allie's progress

Click here for information on how to help Allie

 

Allison Leigh Scott, better known as Allie, was diagnosed with Leukemia on Tuesday, May 4th.   She has AML, Acute Myeloid Leukemia.  Leukemia is a cancer of the blood and bone marrow.  It attacks every part of the body.  During her treatment, we updated this site every evening to let friends and family see her progress, gain information about Allie, and  see her pictures.  We thank you all for your thoughts and prayers.   

 

Finding Out

Allie ran a fever consistently through the last two or three weeks of April.  She would spike fever, take tylenol, go back down, then it would start all over again.  Jenny had been sick with a viral infection or severe cold for about nine solid weeks, so we just thought that was what she had.  Over the course of one week, we visited our pediatrician, Dr. Katz, four times.  One was her four month check up.  She weighed 18 lbs 9 oz and was doing very well.  He commented that she was on the level of just under a 6 month old with her development. 

 

Unfortunately, Allie continued to spike fevers.  On Monday, May 3rd, Angela Krieger, Allie's babysitter and our very close friend, called us to say that she was running a temperature of 103 under her arm (meaning possibly 104).  We immediately called our doctor and made an appointment that afternoon. At the doctor's office, they found her blood tests to have some irregularities.  Her white blood cell count was too high for normal results being 35,000.  To put this into perspective, a normal baby would have between 4,000 to 11,000.  Her platelets were so low that they could not read it on their monitor.  With this knowledge, our doctors felt it necessary to have Allie hospitalized and have tests run to check her.  At that time, they felt it could still be something viral that was very seriously wrong.

 

We were admitted to the hospital Monday night.  Allie was anemic due to her blood results.  They could not at that point determine the origin of her illness.  Blood tests were run on Tues. at UT Southwestern to check to see if they could distinguish between leukemia and viral issues.  While waiting for the results, she had to receive a blood transfusion of both platelets and red blood cells.  Her anemia had taken over her body and she was really becoming weak.  With the transfusion, we were able to immediately see results of color back into her body.  Due to the blood  transfusion and the amounts of liquids being pumped into her little body, she  became "puffed up."  Her swelling is a common reaction, but it was hard to see. 

 

We met with many doctor's, including Dr. Lenarsky, the pediatric hemotologist and oncologist.  At four pm Tuesday afternoon, we were given the results of her blood, confirming our worst fears.  Allie's Leukemia was very serious and Dr. Lenarsky prepared us for immediate treatment.  Without treatment, she would die.  With treatment, there was still some hope.

 

She also had a severe rash as a result to either to amoxicillin. The rash was terrifying to look at, but it was actually one of our smallest worries.  It just made her look bad.  It covered her from head to toe and all in between. 

 

The Treatment

On Wed. May 5th, Allison started her first round of chemotherapy.  Chemotherapy is a combination of drugs to help attack the bad cancer cells in her body.  The bad problem is that it also attacks her good cells.  She received chemotherapy for a ten day period during her induction period, or first round.  

 

With chemotherapy, the immune system is compromised at times.  Since it kills the good cells too, she was not as able to fight off infections.  

 

One of the scariest parts of that week was a spinal tap in which they injected chemotherapy into her spinal fluid.  Leukemia likes to hide in the brain, so they were trying to protect her even more. 

 

Since that first week, Allie has had three rounds of chemotherapy.  Each round was harder and tougher than the round before, but she has taken everything very well.  Towards the end of June, she got a severe infection that almost killed her. 

 

On July 1st, we found that she was in remission, with 5% of leukemia cells left in her body.   By July 6th, blood tests were showing that Allie was slipping out of her remission state.  A cord blood transplant from an unrelated was the next step on July 17th. See week 10's journal for a really good explanation of this process.

 

On Aug. 3rd, test results came back that Allie's body is not responding to the donor.  Only 7% of the cells in her body were the donor cells, 93% were still Allie.  We took her off steroids and her anti-rejection medicine in the hope that it will let the donor cells take hold better.  Graft vs. Host disease is a severe disease that anti-rejection medicine and steroids help ward off.  By taking her off these medicines we were intentionally trying to give her GVHD to see if the donor cells could take hold.  The doctors were not optimistic and said her chance for survival was slim.  In mid-Aug., Allie's cancer had reared its ugly head again.  Too soon after her transplant and last chemotherapy treatment, we weren't given many options.  A drug called gleevec, was our last shot, the "shot in the dark."

 

After three weeks of gleevec, her cancer was still in her body, and she was getting worse.  We went to "comfort measures" the first week of September to keep her comfortable and as pain-free as possible in the final days of her life. 

 

Allie's battle ended on September 13, 2004.  All her friends and family were present. It was one of the most peaceful events we have ever witnessed. 

 

 

 

Her Doctors, the Hospital

For the first six days, we were in the Pediatric ICU of Medical City of Dallas off of Forest Lane and Central Expressway.   During our stay in the hospital, to help with the risk of exposure to infections, only parents, grandparents were allowed in Allie's room. 

 

We moved to 12th South Stem Cell Transplant Unit on May 8th, 2004 and have been here since.  She lived there until the end of her life on Sept. 13, 2004. 

 

They all came to love Allie.  They have been with us every step of the way.  Dr. Lenarsky works with his two partners Dr. Goldman and Dr. Weinthal.  These three doctors and their nurses became some of the most important people in our lives.  We have complete faith in their abilities to make sound decisions and provide excellent treatment for our sweet baby. 

 

What can you do

I

Can you donate blood?  Please do so, if you can. 

Allie had a total of 68 blood transfusions, red cells and platelets.  Local blood banks are always in need of blood donations.  Platelets only have a shelf life of five days.  Without an adequate supply of platelets, patients are left waiting. 

 

 

**Thank you so much for the outpour of love and support. We couldn't make it through this time without our friends and family.  Please continue to check the site for updates. We will be dating the entries so that you can see exactly what is going on. This will also help answer any questions you have. The more everyone can be educated about her illness the better.  Feel free to do other research on AML on the internet that you would like. Visit the links page at the top of the main page to help you find some sites for researching.

 

Main