June 11, 2007 – September 6, 2014
Diagnosed: September 20, 2013
Written by Alex’s family
Alex was our world, she was our first born who brought us into the crazy world of being parents. She was fun, independent, smart, had a lot of spunk and sass in her. She laughed all the time, it was such a contagious laugh too. She was happy, always happy. She danced and played soccer. She enjoyed Minecraft and Candy Crush, she was good too. Alex loved animals, especially bunnies and kittens. She said when she was grown up she was going to have an animal shelter so she could find animals homes and be a veterinarian.
When Alex was 6 and in the 1st grade she started coming home with headaches. They continued to get worse so we brought her to the doctor. At first they thought it was allergies but they continued to get worse so they sent her for a CT scan. On September 20th, 2013 we were told that Alex had an inoperable and incurable brainstem glioma…she had 12-18 months left to live. Doctors told us up front there was no treatment but we could try some things to try to slow the growth of the tumor which is the route we took. Alex went through the 6 weeks of radiation and began oral chemo. They worked for a bit, the tumor shrank giving us some false hope but then it just progressed faster. We spent some time at St. Jude’s, which is where they told us that what she had was a DIPG and it was already too advanced to try any other trial treatments.
We came back home and Alex continued her oral chemo and steroids which were to help slow the symptoms. We spent lots of time with her. We worked from home, went to movies when she felt up to it, spent time at Disney World and Universal Studios, and went all out for each holiday. We made lots of memories with her, especially for her little brother who was only 3 at the time. Although it sounds like we tried to make the best of things it was extremely hard. Alex experienced many symptoms from both the medication and tumor that really messed with her emotions and attitude as well as physically. Alex ended up losing the use of her legs and some movement in her right arm. Her eyesight got worse and she gained a lot of weight which put even more strain on her body. It was really hard to watch her continue to get worse and not be able to take away the pain or fix it.
Through everything Alex never complained about what was happening, I asked her once if she wanted to talk about everything going on with her. She just told me no and that she didn’t like what was happening but she wasn’t mad about it…that it would all be okay. One time she even told me she thought it was her turn to go meet Jesus and his family. Through it all Alex remained the strong one, she would often tell me it would all be okay…I miss hearing her say that, she was so brave. The weekend before Alex passed she asked to go to the movies, out to dinner, and shopping. This was big for her because after she put on all the weight from the steroids it messed with her back so the car rides were painful. But after she asked, we got all excited and went to see Guardians of the Galaxy, had some dinner, and even went to a few stores to get toys for her brother and did some window shopping for her baby brother on the way. She was fun, laughing, goofing around with all of us. It was one of the best weekends we had in a long time.
The following week Alex was a bit crankier and tired. She slept most of the time but still hung out with us in the living room and had dinner with us, we assumed the weekend just made her extra tired. Friday afternoon was rough, she was in a lot of pain. It was so scary. Her hospice nurse had to come over and give her some pain meds so she could get some sleep. Friday night she was in and out of sleep so we just stayed in her room with her. Saturday Alex just slept, and wouldn’t wake up for anything. Her dad, her brother, and I (her mom) all ate lunch in her room and watched TV while she slept. That evening her dad and I were both lying in her bed with her, just holding her hands and waiting for her to wake up, but she never did. She took her last breath that evening while we were with her. It was shocking, we didn’t expect it to happen so soon. We just held onto her as she slept and made her way to heaven.
Alex passed away on September 6th, 2014 almost 1 year after she was diagnosed. We miss her, painfully. Every day is hard without her here. Her little brother still talks about her daily, she also has another little baby brother who I was pregnant with when she passed. They never got to meet which breaks my heart because she was so excited. If only there was some treatment that could have helped slow the progression of this awful tumor or better yet, a cure for it. Who knows, maybe I would have a picture with all 3 of my children together.
We love you and miss you Alex Jo, every day you live on through us. You will forever be in our memories and in our hearts sweet girl. We will be together again someday.