Olivia Caldwell was born on February 19, 2012 along with her twin brother, Wyatt. She was born early at just 32 weeks and spent a little over a month in the NICU learning how to eat and grow on her own. Olivia and Wyatt both came home on oxygen and seemed to be doing well. But everything changed when Olivia hit 3 months old. Suddenly she began to have nystagmus (eyes bouncing). She slowly lost her vision until it was clear she couldn’t see anything – even toys dangling just above her face or the faces of her family. Her newborn startles reappeared and she began to have seizures. She also began to sleep more and more throughout the day and wasn’t interacting very much with her family. As her mom, I knew that something was wrong. I called her doctor nearly every day but most of her symptoms could be written off as being from her prematurity.
Finally, on July 16, 2012 at just 4 months old, Olivia’s mom took her to the doctor once again to be checked out. This time Olivia had a seizure in front of her physician and it became clear that this wasn’t something minor. Olivia was taken by Life Flight to Presbyterian St. Luke’s in Denver, CO and the first image of her tumor was found on a CT scan that night. That day was the day our lives changed forever and our daughter’s cancer battle began.
Olivia spent a few days at PSL before being transferred to Children’s Hospital Colorado. She spent another 2 weeks in the hospital while they performed a surgical brain biopsy to determine the type of tumor and another surgery to place a mediport. Her biopsy revealed that Olivia was battling a grade 2 astrocytoma. By the time we found it, it had already spread throughout her brain and down her spine. She didn’t have a solid tumor that could be surgically removed, but instead her tumor was diffuse and spread everywhere in her brain like a spider web. Olivia went through 7 months of chemo to try and beat her cancer. During that time she also battled epilepsy caused by the cancer and a more severe form of epilepsy (called infantile spasms) that were very damaging to her brain. She also suffered from developmental delays, right side weakness, and vision loss.
On January 14, 2013 we got the news we had been waiting for. Olivia had beaten cancer. Her scan showed no more evidence of a tumor, but simply the abnormal signal that would always remain. She had her last chemo treatment on February 13, 2013, just 6 days before her first birthday. We were overjoyed. Our baby had been spared and we could finally enjoy her and watch her grow.
Or so we thought… Cancer had different plans. God had different plans. On June 6, 2013 Olivia had an emergency MRI after her once well-controlled seizures came back and we discovered that her cancer was back. And the tumor was bigger than before. Her neuro-oncologist, Dr. Nick Foreman, told us that the odds were not in our favor. We could choose to try chemo once again but the chance it would work was fairly small. We chose to keep fighting. We couldn’t lose our daughter. Didn’t God know how much we loved her?
Once again Olivia went through chemo. She went to the oncology clinic every single week and continued to fight for her life. And for 4 months she was stable. Her tumor neither grew nor got smaller. She seemed to be doing so well, although she still couldn’t walk, crawl, stand on her own, sit on her own or talk. We decided to add in another medicine, Avastin, on top of her chemo to try and shrink her tumor. We hoped and prayed for the best.
At the end of September everything began to change for Olivia. Our once happy, full of life little girl began to sleep more and more. We rushed her to hospital where an EEG and an MRI were performed. It revealed that her infantile spasms had returned and we needed to treat them with the ACTH steroid that had worked once before. Her MRI still revealed that her tumor was stable and we let out a sigh of relief. We took Olivia home and waited for her to get better. But she didn’t…
Over those few weeks we watched Olivia continue to deteriorate. She was hardly ever awake anymore and her vision once again became non-existent. We spoke to the oncology clinic nearly every day and on October 17, 2013 they performed a shunt series MRI to check for fluid build-up. That afternoon we got the worst news imaginable. Our daughter’s tumor had exploded in growth in just a few weeks time. She wasn’t going to make it. We took Olivia home the next morning on hospice care, expecting to have at least a few more weeks with her. We had only 5 days. Olivia left this life on October 22, 2013 at 7:09 p.m. She was in the arms of her mommy and daddy and as her soul left she opened her eyes (which had been closed for 24 hours) and let out the most beautiful, peaceful breaths as her soul flew to heaven.
Every day we mourn our daughter. To say we miss her is the understatement of the century. We will never know why she had to get cancer, and why she had to leave us so soon. But we will honor her memory every single day through the Olivia Caldwell Foundation. Our mission is to find a cure for pediatric brain cancer research. We chose to fund the neuro-oncology research lab at Children’s Hospital Colorado because not only are they doing innovative, top-notch research in pediatric neuro-oncology that is benefitting children all over the world, but they were a huge part of our lives. They cared for our daughter and always had her best interest at heart. In fact, they cared for our daughter so much that one of the first research projects they hope to do through our funding is to find a better treatment option for diffuse astrocytomas. Here’s some information about this proposed research project, written by Dr. Nick Foreman:
What is missing is a good treatment for children with diffuse astrocytomas such as Olivia’s. These tumors often respond to initial therapy but have a high recurrence rate, being very invasive. They are often centered on the thalamus, deep within the brain and tend to occur in young children. It is my belief that these tumors probably have either a unique mutation or a specific misreading of a set of genes. I would propose then to do deep sequencing of the entire genetic make up of a number of these tumors. The other possibility is that a set of genes are being misread and this sends a message to the tumor cells to grow. We then would also look at the messages being translated from the genes for errors which would potentially be driving tumor growth. This would entail looking at messages (mRNA) being sent from the genes to the cell. On finding either a mutation or a misread, we would then use our resources to look for a targeted therapy for these invasive brain tumors.
Help us find a cure for pediatric brain cancer and honor our daughter’s memory! You can donate via GoFundMe by clicking here: http://www.gofundme.com/5j5h4w. You can send us a check through the mail to:
Olivia Caldwell Foundation PO Box 1112 Rawlins, WY 82301
Or you can donate directly to our foundation’s bank account at any U.S. Bank location. Olivia Caldwell Foundation bank account #147490735163