Jordan was diagnosed with a brain tumor back in May of 2015 following an ER trip for a headache that had lasted a week. Shortly after this visit we were transported to Phoenix Children’s Hospital where she had a biopsy done which told us it indeed was a cancerous brain tumor that was actively growing. She then had a few other brain surgeries that followed to attempt to remove what they could of the tumor. Since the beginning of her journey Jordan has had a total of 4 brain surgeries as well as had to get a port placed for her meds. Due to these brain surgeries, the tumor itself, as well as the treatment she has received, Jordan unfortunately has developed some brain damage along her journey. This damage makes life at school much harder for her and even life at home is a battle. Simple tasks for us like remembering to wash our hair when we shower are hard for her to remember, so we have to have lists all over the house as well as use constant reminders to help her with everyday life. We still haven’t done radiation or much of any harsh chemo treatments because we are remaining hopeful that the clinical trial will help her tumor stay stable as it is inoperable due to its location and it not being a simple easy normal solid tumor. I fear as a mother for the day when she has to receive radiation or chemo.
Since her journey began we have traveled back and forth every 2 months for 2 years to Los Angeles Children’s hospital on my own dime for a clinical trial she was on. She was on the study drug for almost 3 years and is just at the end of the study now but we no longer are fulfilling the study with CHLA in Los Angeles. Jordan has since had her care and the study trials transferred over to St. Jude’s research hospital in Memphis, TN. This has been a much better experience and journey to have to go through since we have been going to St. Jude’s every 3 months. Her tumor is still growing but it is small growth. We remain hopeful that one day they will get it to stop growing! Right now we just are letting her live her best life as normal as possible so we don’t hold her back from any of her goals, dreams or simple things like joining the softball team as we know tomorrow is never promised.
HopeCam has helped Jordan stay in contact with her friends as well as her school the many times she has been in and out of the hospital as well as when we have to travel for her care and treatment. It’s been nice to know she doesn’t have gaps in her studies when she has to miss school. It also is good for her and her quality of life I feel because when we have to travel for her treatment and appts she is away from her friends and people can’t always come visit, but with HopeCam she can video chat her friends and keep in contact with them through email or social media and apps. Her journey is still just beginning and every day it’s a different battle or sickness that kicks her butt or causes us a hospital stay but we won’t let it knock us down. We are still learning how to live with a cancer diagnosis but we remain hopeful for a long and positive future with Jordan cancer free and hopefully a cure for cancer!!