Alexa was our 4-year-old little girl who was diagnosed with stage IV neuroblastoma on December 12, 2005. She had several rounds of chemo, 2 MIBG therapies and a BM transplant. All unsuccessful. We spent 21 months on experimental therapies to prolong her life as long as possible. On June 25, 2008 she passed away in our arms from an infection. Now she is our angel.
Alexa was our 4-year-old little girl who was diagnosed with neuroblastoma stage IV on December 12, 2005. Alexa received protocol treatment at the Children's Medical Center of Dallas until May of 2006 when it was determined that her cancer was not responding. In July we took her to CHOP in Philadelphia to take part in a clinical study involving MIBG therapy and a bone marrow transplant to try to save her life. Sadly it did not work and the cancer had spread. She was not expected to live past Christmas. In January, we discovered she had a delayed reaction to the treatment, so we tried a Phase II clinical trial involving humanized anti-body therapy. Alexa had a major allergic reaction to the medicine, so we were unable to continue the treatment. We took her back to CHOP for another MIBG therapy and then spent 10 months on a phase II clinical trial oral chemo called ABT-751. In May 2008 she started having fevers and on June 25, 2008 she passed away in our arms in the ICU at Children's in Dallas from an unidentified infection in her lungs. We found out later it had also spread to her liver and her kidneys had lost so much oxygen they were almost in failure as well. There was nothing we could have done. I guess it was her time to go, but I would give anything to have her back.
Thank you for coming to visit Alexa's Angel journal. This is the story of my very bright, talented, beautiful, strong and courageous little girl. She was full of life and LIVED every day and made it fun no matter what was happening. I
n October of 2005, Alexa was 18 months old. She had a small bump at the bottom outside corner of her left eye. It was not worrisome as it would depress when touched but it was not normal. Our pediatrician referred us to an ophthalmologist who referred us to a plastic surgeon at Children's Medical Center of Dallas. On December 12, 2005 after an MRI, we met a doctor who told us that Alexa's bump was in fact caused by a tumor growing behind her eye and it had metastasized from a larger tumor growing on her left adrenal gland. Further testing revealed several other tumors, bone disease, bone marrow disease and a diagnosis of STAGE IV NEUROBLASTOMA.
You can imagine my husband and my reactions. We were devastated but there was hope so we clung to each other and decided to start the fight together. The next day the tumor was removed and her port placed. A few more days later on the 16th she stared chemo therapy. She was extremely sick from the first round. It was the harshest drug, Cisplatin, and although we didn't know it at the time, it was the one that caused her hearing loss at well. Another blow, as Alexa was just beginning to really develop her language and singing skills.
She was incredibly ill from the chemo and as we headed home from the hospital for the first time on December 21st- she threw up three times before we drove the 32 miles home. On Christmas day, she didn't even care about the presents we had bought. She was too sick to move. I remember she was sitting on my lap and we were visiting with family. All of a sudden she started throwing up again. I rushed her to the sink and talked her through it. She was frightened but she was tough. It was the first of many, many bouts of sickness in her 2 1/2 year journey with cancer.
Later that night she spiked a fever from her blood counts being so low. We had to rush her back to the hospital which turned out to be a long trip because one of the antibiotics they gave her was causing her to have an allergic reaction. She was having more fevers and a terrible, painful full-body rash. During this trip, her hair started to fall out. I can still remember the feeling of my fingers running through her hair as I rocked her in a chair and strands of it coming out with each movement. She was bothered by the hair in her eyes, so I decided the best thing to do would be to shave it. I was devastated at this thought. So much of the fun in having a little girl is doing her hair and her hair was just beginning to fit in pony tails. I sat Alexa next to the sink and shaved her hair pretending for her that it was a lot of fun and telling her it would be better now that her hair wouldn't get in her eyes. When I was done, I was touched that she still looked so beautiful. I put her in the crib and went into the bathroom and cried and cried. That was one of the hardest moments in my life.
We spent New Year's in the hospital and finally left on the fourth of January 2006 with a happy, playful little girl again. It was the beginning of a very rough year. This journal picks up shortly after that. You will see that 2007 will always stand as the best year of our lives. 2008 was the hardest. Alexa passed away on June 25th and now our Princess is an angel. I hope you enjoy reading and re-reading about this incredible young child who touched more lives and accomplished more in four short years than I will ever hope to. She is my everything and I will miss her every day until we meet in Heaven and I can hold her in my arms once again and tell her how much I love her. My daughter, my best friend, my darling little girl. This is for you.
The Princess Alexa Foundation was created in her memory. We celebrate the childhood spirit of seriously ill children through dress up and play. Please visit the website to learn more: www.princessalexafoundation.org