This is a bit raw tonight, because our hearts are hurting badly!
We all have to make a lot of decisions as parents, a lot! When you get pregnant there isn't a guideline on what to do and there isn't a handbook that tells you decisions you may or may not have to make! Prior to coming a parent, no one tells you just how many decisions come into having to be made? From small decisions to big decisions... Decisions that are easy to make and some that are hard to make! Some that could change ones life and some that could change the family's life!
But as parents with a child with cancer or other illnesses parents have to make decisions that no parent ever wants to make and no parent even wants to sit through and listen to have to make them later! When your child is diagnosed your life changes forever and you realize that you are now signing papers allowing the hospitals to give fucking toxic medicines in your child's veins! You are watching these toxics drip by drip going into your child's body and now making sure the hospital is doing everything right because you are in a fight mode! Fight this damn disease that is invading your child! Your signing papers to do surgeries knowing side effects could be life altering to your child or even worse death! Yes you have to sign these papers and each time yo sign these papers your heart breaks because it just reminds you that your child has a disease that you are trying to rid of their body so they have a fighting chance to attend grade school, middle school, have their first dance, high school, homecoming and prom , their first boyfriend and their first breakup and getting married! Fuck it hurts to even fathom the thought they may not get any or all of these firsts and just events! It scares my every being to think that Emily may not be in that rear view mirror and hurts to think that "daddy's girl"...
Today we came to the realization that the fight we once had is not the fight we have now!! The fight is no longer about trying to cure Emily, the fight is about keeping this disease at bay and keeping her comfortable and with a good quality of life! Yes really that was our conversation a conversation that no parent wants to have and to have about their child! Realization that this damn disease has a grip that we have to get our hands on!! Our hearts hurt, it js pounding with fear, sadness and worry and the heartache is painful!! It is getting harder and harder to talk about! People ask about Emily or how things are going and I've come to realize it is harder to talk about anymore to anyone, it's as if we are back at the beginning when it was hard to talk about but now it's different, our hearts hurt, they are bursting at the seams and just want to rip open and scream out!
So as parents Doug and I are forced to figure out what is next for Emily and as parents we have to talk to Emily and tell her what is going on! We have to tell her we are not almost done with treatment, but that now we have to fight harder and hit this freaking disease again! As parents we are still looking at trials and trying to decide what to do !! As parents...
Today was hard, hard to talk about what the doctor here feels that we should do and watch as these doctors and nurses that we have spent the last 2 years with have more emotion about our daughter that we all had tears in our eyes! Emily has started to talk more to Dr Gowda and loves Elaine, something that we all take notice with! Not a dry eye in that room, talking about Emily who is progressing from a damn disease that should never even be in her body! A disease (damn cancer) that should never be in any of our children's body, that we don't even know what is happening! This disease can become so aggressive that we won't even know what hit us!
Just know that we still have our big guns on and we are not ready to give up this fight, but we are bursting at the seams that we are about to blow! I would be lying if I didn't say we are not scared, because we are scared of everything! Scared of EVERYTHING!!
We haven't made any decisions just still talking them through again as parents! Waiting in scans to be scheduled in Michigan or early January!