Here's the problem with your kid surviving cancer... (That's right, I just said that!)
...You start living your life again like normal.
You do the things you did before like grocery shop and put off doing the dishes and get busy with life. You go back to work and get back involved with activities outside of the hospital. You get back in a groove and you slowly start letting pieces of that cancer story leave you.
Then, your child gets a temperature of 100.5 at midnight. Now for you, this means giving a dose of Tylenol and a favorite plush friend and putting them back to bed. For us, the protocol is to call the on-call oncologist and head to the ER. But we have been off of chemo for 7 months and haven't recently had the port accessed so we rolled the dice and did the Tylenol thing. Again, for you, you go back to sleep easily but for us, we lay in bed wondering if we made the right decision or if she will be septic by morning.
Then, the next morning, your child wakes up and is acting great and dancing around the kitchen. You have breakfast and head to work. The kids play and then take an afternoon nap. You get home from work when naptime is over and your oncology baby has a red face and feels warm again. This time it's 3:30 pm and the ER doesn't sound as inconvenient as it did at midnight. Your only plans were to fold some laundry and cook a chicken and all of that can be put off for tonight.
So...Go to ER, Labs, Antibiotics, Tylenol, Fluids, Home. Round trip: 4 hours + peace of mind.
The next morning, same child is back to dancing but you decide to take things easier. Work from home, movies, low stress day. Again, naptime calls and when your oncology baby awakes the fever is back. Oncology says it might be because she just woke up so wait an hour and a half and see if the temp comes down on it's own.
We aren't rookies: Shower, Snack, Pack a bag, Fold that laundry, and go ahead and leave that chicken for tomorrow. Time's up! Thermometer reads 102.0 and oncology says they will let the ER know we are on the way.
Go to ER, Labs, Strep Test, Flu Test, Urine Test, Antibiotics, Tylenol, Fluids, aaannnd Admission! The doctors decided to keep her overnight for observation and then another night just to be safe. (Cultures grow within 48 hours so they decided to have us wait it out there.)
So back to my original statement, here's the problem with your child surviving cancer, you have a life again. Again, you have plans that have to be cancelled. Again, you have things you want to do and things you need to do and you can't do either from a hospital room. Again, you are reminded that your life has forever been changed. Yes, you are so, so glad that your child has survived and you have some normalcy again, but dang if that doesn't make those dips back into it all the more difficult!
Tonight, we were discharged from the hospital. No more fever and no real answer. Probably just a normal kid virus. Our plans were altered for 4 days as we waited on something to develop that never did. So tonight, we came home and celebrated normalcy by finally cooking that chicken.
