“Your daughter is going to die”

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I will never forget October 17, 2013. Exactly one year ago on that date, we learned that our 20 month old daughter was going to die. Olivia had been battling brain cancer for 16 months and even though we knew that losing her was a possibility, we never imagined that we actually would.

When we took Olivia to Children’s Hospital Colorado that day, we knew she wasn’t doing well. She hadn’t been herself for weeks but she also was battling another bout with infantile spasms (a severe form of epilepsy caused by the damage from the tumor) and was on a very difficult steroid for treatment that caused a host of symptoms. We thought that she probably needed a shunt placed to drain fluid from her brain, but she had just had a stable MRI a few weeks prior, so we never believed it could really be her tumor.

When Olivia’s neuro-oncologist came in for an exam as she had chemo, I could see on his face that he was worried. He said her feet were cold and her heart rate was slow. She also could no longer see and her pupils were dilated. He ordered a STAT shunt series MRI to check to see if this was just fluid causing pressure. He didn’t want to jump to any conclusions regarding her tumor anymore than we did.

I took Olivia downstairs for her MRI and sat in the room with her while they did it. It only took a few minutes because it wasn’t a sedated MRI. Then we waited over the next few hours for results.

In fact, we were so convinced that it would be a shunt surgery to fix her current state that we decided it would be best for her dad and Olivia’s twin brother, Wyatt, to go back to the hotel for Wyatt’s nap, leaving me at the hospital alone with our baby girl. We went along with the EEG as scheduled to see how her seizures were being handled.

Then when her EEG was finished I expected her neurologist to come into the room to give me results. Instead, a nurse came in and said that the neurologist was waiting for me on the oncology floor to give me results. My heart sank. I tried not to jump to conclusions but I was terrified. This was so unusual.

Olivia and I rode up the elevator to the 7th floor and we were taken to a family conference room. I sat on the couch next to my sleeping daughter and in walked her neuro-oncologist, neurologist, primary nurse, and a social worker. I have never had so many people come in for results before. Before he even sat down, her doctor said, “this is not good.” And then he looked around and realized that Brett wasn’t in there. He asked me if I wanted to go get him and come back and I said no. I couldn’t imagine waiting any longer to hear what he had to say.

He continued that Olivia’s tumor had grown astronomically since her stable scan just a few weeks before. It was so big that it showed up very well on the shunt series MRI that should have only been looking for fluid build up. He said, “I’m so sorry but your daughter is going to die.” And just like that, my entire world came crashing down. He told me to take as long as I needed and to come back the next morning with my husband so we could talk about the next steps…hospice care.

All the while my phone was ringing off the hook and text messages were coming in, in masses as our friends and family, and my husband waited for news. I ignored everyone’s phone calls. I couldn’t possibly tell Brett this news over the phone and I definitely wasn’t going to tell anyone before I told him. After a little while I somewhat gathered my composure and walked downstairs to our car. Then drove back to the hotel and had the horrible task of telling my husband that our little girl wasn’t going to make it.

The next morning we went back to the hospital and met with her doctor. You could see the pain on his face as he talked to us about the options we now had. There was nothing more they could do to treat her and her death was inevitable. We now had to either find someone to do hospice care for us in Rawlins (where there is no hospice program), do her hospice care ourselves, or live out her final days in the hospital in Denver. At the time he thought she had weeks to months to live.

Our amazing friend, Candice, is a home health nurse who works with children and their families in our hometown. She immediately stepped up and offered to be our hospice nurse so we could be at home with our angel. We are forever grateful to her for that. And after getting that care in place we made the trip home where our families and several close friends met us as we faced a horrible new reality.

Then just 5 days later, Olivia Margaret Caldwell, our perfect 20 month 3 days old daughter took her final breath and her soul made its journey to Heaven. She passed away on October 22, 2013 at 7:09 p.m.

And now we face the first of these yearly, extremely difficult anniversaries. I truly can’t believe that it’s already been a year since we said goodbye. We miss her every single day. Besides knowing that she is pain free in Heaven now, what helps to get us through is knowing that her death was not in vain. Our foundation in her memory will be able to fund research projects to save other families from having to go through the pain of losing their children. So thank you to each and every one of you that has donated and supported us. We are truly grateful and we know Olivia is too.

Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric brain cancer research. All proceeds benefit the neuro-oncology research team at Children’s Hospital Colorado. All donations are tax deductible. To learn more and to donate please visit our website at www.oliviacaldwellfoundation.org.

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