Treatment for your child begins. You will never forget the day your child started their first round of chemo. I know for me, it was the first day of my new life. A life where cancer is the first thing I think about each morning, and the last thing I think about each night.
Everything happened so fast, there was very little time to process it all. Now that my child’s journey is over, and I have the time to really think about everything that happened, there was a lot I wish I had known from the start.
1. Make sure you know everything going on. Pay attention to detail. I know for me, I knew what medicine my daughter was going to get and when. Write it all down and ask questions, lot of questions.
2. When you are faced with statistics, remember that every child is different. No child reacts the same way to every medication or procedure. But, like a doctor once told me, when you are a parent, statistics mean nothing. It’s either 100% or 0%.
3. Find your resources. Many hospitals have assistance with hospital debt. They also may have assistance with meals, gas, and much, much more. Ask your social worker what is available.
4. Make sure you hold onto all medical records. Ask for copies of everything that happens. When a child is diagnosed with neuroblastoma, it will stay with them for the rest of their lives. You will need to have their medical history in a binder. Not only that, but it will allow them to learn their story later on and show them what a fighter they were.
5. Try to keep everything somewhat normal. I know that is hard to do when normal doesn’t exist anymore, but you need to let your child remain just that, a child. For us, we took our daughter for rides in the wagon and let her walk the halls. Of course it wasn’t “home” but we had to remain active. There were times that she was bed ridden, just too tired or too sick to get out of bed. So when she was in good spirits, we made life as normal as we could.
6. Research, research and research. Know exactly what neuroblastoma is.
7. Make sure to stay positive through it all. You are not only helping yourself cope, but by remaining positive you are helping your child cope and heal.
8. Pray, pray and then pray some more.
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