Olivia Weber
01/16/07 - 06/20/08
9 months old at diagnosis
Tampa , FL USA
Memorial Sloan Kettering Cancer Center

Olivia was diagnosed at 9 months old on October 23, 2007.

She had a mass on her left adrenal gland and small tumor on her right.  Her body was basically clear, except she also had the disease on her brain and spinal cord.  Her diagnosis was very different because children never present with it on the brain and spinal cord. Instead, that is usually where they relapse. 

We live in Tampa and only just moved here when Olivia was 5 weeks old, so we didn't have a big support system here.  She went through 4 rounds of chemotherapy, and we traveled up to Sloan Kettering for her surgery. After that, we transferred her care there. 

She fought so hard for 8 months, spending most of her time in the hospital.  It always took her so long for her counts to come back up, and there was always a fever or infection, blood transfusions or platelets.  

Olivia was away from her older brother Luke and her older sister Ava all the time, especially when I was with her in NY. They were wonderful at Sloan, but her disease on her brain and spinal cord was just too aggressive. 

On June 19th, 2008 we had all the tests done, and were ready to start the treatment the next week.  That night, she was so restless and wouldn't sleep. 

The next morning on the 20 th, she was very lethargic and wouldn't really raise her head.  I ran her the six blocks from the Ronald McDonald house to Sloan in a total panic.  They did a CT scan, and told me the disease had progressed and there was nothing they could do; it would probably only be a matter of days. 

I called my husband in a panic and totally hysterical.  He was at his grandmothers funeral at the time, and my children and my mother got on a plane as soon as they could.  My dad took a train from Maryland, and my friends from New Jersey drove up. 

The plane was delayed, and at 9:45 p.m. Livi slipped away while she was in my arms. 

As a mother, I feel so blessed to have held her when she took her first breath and also her last. 

My husband missed her by 20 minutes.

We miss her so much, and I promised her that I would try to make a difference for other children. 

I started run4olivia, a 501c3 charity that raises money for research.  So far, we have donated over $70,000 to Neuroblastoma research in Livi's name.