4. Sometimes, you know more about your child’s medical problems than trained doctors and nurses know.
We traveled from California to Minnesota for our daughter’s amputation ande decided to drive the first time around, making a fun road trip out of it. It was a great time, up until our daughter’s broviac line exploded in her neck when we were in Colorado. We took an unplanned trip to their hospital and, upon entering the emergency room, uttered the words “cancer” “open line” and “pain” and got placed into a room immediately. Now this was a completely new set of doctors, new nurses, new people who knew nothing of our daughter’s extremely rare condition. They tried to brush it off and tell us to wait until we get to Minnesota to get it fixed. But I saw the pain in my daughter’s eyes. I knew she was not okay. I had to push. I ended up getting our doctors to communicate with them and they admitted us. That very day she had surgery because, as I told them, the line was broken and was unable to be fixed. They finally believed what I was saying was correct, and helped us out in the end.
When your child has a rare or extreme medical condition, you know more than most about their specific disease or disorder. They might be doctors, nurses, and technicians that have gone to school and studied for years, but I am my daughter’s main nurse. I am with her 24/7. I know when she has actual pains, or she’s faking. I know what’s normal and what’s not. That’s something you have to push for when you’re dealing with new people: for them to hear your voice. Your child cannot tell them what’s wrong, and in my situation not at all because she was an infant. You need to stand up for them and let everyone know that you’re right. No one knows your baby more than you do. And you will do anything in the world to protect them from everything you can. Sometimes that includes things you wouldn’t think of as being deadly, like germs!
5. Every tiny germ is scary. Like, terrifying.
Kids get sick. Kids get sick all the time. Seeing a sick kid is just the norm. Snotty-nosed, sneezing without covering their mouths, licking the tables. To a normal person, a normal parent, you may cringe a little and look away, not thinking anything of it for the rest of the day. But as a cancer parent, it’s very different. Every little cough, sneeze, any type of fluid leaving a persons mouth, is terrifying. When your child is undergoing chemo, they have no immune system at all. None. So every little germ is dangerous. They could develop pneumonia, an infection, or even a small cold. But those things could be absolutely detrimental to a small child going through chemo.
So you get scared, of everything. Malls, restaurants, parks, doctors, everything. You carry sanitizer, wipes, and gloves. You don’t let anyone near you if they’re even remotely sick. And, ultimately, you end up secluding yourself in your house for your child’s safety. We got lucky when our daughter was going through chemo, we only took 2-3 trips to the ER with a fever-related issue. If her fever ever got over 100.5, it was an immediate ER trip because of the open line in her heart for chemo access. So in my opinion, I would rather stay home than risk being in the hospital more than we already were! And now that we’ve been through that horror and realized how hard life can get, we started:
6. Appreciating the small things in life.
Now that we don’t have to worry as much about germs and baby girl getting sick, we make sure to not take that for granted. We talk frequently about how hard life used to be, just to remind ourselves to appreciate the fact that it has gotten easier. We still have to worry about infections (she has 3 expanders in her skin, so that’s three ports that could get infected), but being around others that are sick, isn’t an issue anymore.
We make sure to appreciate little things that we might not have had. Sharing life with our little angel that could have quite literally, become an angel. I love to watch her learn new things, and see the world through her eyes. I love to see her experience life like a child should, not in hospital rooms. I also think about our son, how lucky we are that he is perfectly healthy. How we are still standing, despite being sent through this massive storm. Nothing makes you look at how great life can be like a huge setback, sickness, or loss of something you loved. We are so thrilled just to be considered cancer free. We still have to deal with our daughter growing up without an arm, but that’s not life- threatening. We have learned that we will go with the flow, take nothing for granted, and most importantly…