Monday, September 4, 2017

The Fight is Never Over.

When your child first gets diagnosed with cancer, you're thinking about the now and the near future. You're thinking... "Will they make it until tomorrow?" or "When is the next scheduled chemo?". For a while, I never really thought about our life post childhood cancer. I continuously thought about our life before cancer because I longed for those days, where our worries about sniffles seem so ridiculous now. When she was first diagnosed [i'm talking.. THAT night], we received tons of information about her treatment plan and we had to decide if she was going to be a part of a study or not. We had to make the decision by the next day. Late that first evening we sat together in her hospital room and tried to read through the information. Much of it was foreign language to us. Included in this information was a list [huge list] of most of the medications and chemotherapy she would receive during the 2.5 year treatment plan. It was listed in a simple table over the course of several pages. In one column was the name of the medication and in the other columns included side effects rated by severity and long term adverse effects or complications. This was very overwhelming to read. Although these medications were there to save her life, what about her life after cancer? At that moment, we just wanted cancer free. It's hard, you just don't know how you're child will do with these medications and how it will have an affect on them as an individual. So we pushed those long term effects to the side and focused on the present. This is what we did for a while.

There are many factors that will impact the types of late effects the child is at risk for. The type of cancer, age at diagnosis, genetics, use of radiation - all impact the late effects. Kids who receive Intrathecal Chemotherapy [chemo injected directly into the spine] are at a higher risk of learning disabilities. Intrathecal chemo is a staple in treating Acute Lymphoblastic Leukemia.

Childhood cancer survivors can deal with:

  • PTSD
  • Anxiety
  • Cognitive Impairments [which may only show up once they reach school]
  • Behavior problems
  • Lower test scores
  • Headaches
  • Seizures
  • Growth delay
  • Secondary Cancers
  • Bone/Heart/Lung problems
Late side effects vary greatly and it's also hard to tell if things like behavior issues are related to the chemotherapy history or if they were going to occur on their own. It's so important for parents to be aware of these issues so they can be addressed quickly.

Vienna has her own set of issues that we deal with daily, but we have our child - and that's what matters most. Those toxic chemicals saved her. We continue to help her through her daily struggles and get her the help she needs to continue with a normal life.

September is Childhood Cancer Awareness month - are you helping to raise awareness? 
#GOGOLD #kidsgetcancertoo