Waseem Syed
03/22/03
3 years old at diagnosis
East Chicago, Indiana USA
Riley Children's Hospital in Indianapolis, Indiana

Waseem was your typical toddler.  He loved to eat, he loved to play, and he was what I would think of when someone said, "full of life". 

One day in August, he wasn't as active, and he was spiking a temperature.  He also didn't want to eat, which was not like him.  I gave him Tylenol, and when the fever didn't want to stay away, I took him to the emergency room.  

Labs and cultures were drawn, and the doctors couldn't find anything wrong, so we were told that he had a virus and to give him plenty of fluid, Tylenol, and Motrin intermittently.  I did that, and he seemed to get worse.

During the course of that month, I tried everything in my power to get him to eat, and we were going to different emergency rooms almost daily, and nothing was ever found.  By the time we went to his pediatrician for a follow up from 3 weeks before, Waseem looked very pale, had dark circles under his eyes, and he did not want to walk (when I tried to get him to walk, he would say "ow").  

I had to carry him into the examination room, and the doctor ordered a CT of the abdomen, which showed the tumor.  He also had a large bump on his head, which the doctor said, "He probably got that when he was playing", but Waseem had no energy whatsoever to play. 

The ambulance was called, and he was rushed to Riley Children's Hospital.  A bone scan, an MIBG, another CT, countless blood draws, and even a bone marrow aspiration were ordered and done.  After the results were in, we were told that Waseem had stage IV Neuroblastoma. 

It felt like someone had punched me in the stomach, and then dragged all of the life out of me.  I was in pieces.  After that, chemo was ordered we were given a schedule of the chemotherapies, what would happen each month, and what to expect after each chemo stay.  Waseem went on to have the 6 rounds of chemo, stem cell harvest and transplant, 12 rounds of radiation, and 6 months of Accutane therapy.  

Also, we were told of the cancer on a Tuesday, and the following Friday he was diagnosed with Autism. 
 
Even though we felt like our life was in pieces, and we felt like we lived with a broken heart most of the time, Waseem was shown so much love...not only by us, but by the Child Life team that brought him stacks of paper he loved to rip up, Magna Doodles, string, and Legos galore. 

When he was neutropenic (had a low white cell count), I tried to get him to eat anything.  So, even though I wasn't comfortable with it, he would gorge on Cheetos (his absolute favorite snack)...but he would nibble at other things as well, so that wasn't his only nutrition. 

He loves to play with my daughter's Barbie hair, so if this keeps up, I think he might be an awesome hair dresser.