Thursday, August 4, 2016

Off Treatment Means It's Over, Right?!

Look. We will be the first to tell you that we know many are tired and worn of hearing about Jace and cancer. We know people talk negatively about it and maybe even talk negatively about us. In the last three and half years, we've had it happen more times that we'd like to admit from people we've loved and thought were for us. 

We did not ask to be put in the middle of this disease and did not ask to have to miss out on so many "normal" everyday moments. We know that many care so much for Jace and maybe care not-so-much for the rest of us. That definitely comes with this territory as we've recently learned.

However, I'm fully confident that someone, including us, is learning some sort of lesson surrounding all of the above. Maybe the lesson is grace or compassion. Maybe the lesson is holding your tongue more and giving out love in lieu of criticism and judgement. The lesson might even be to find joy even when joy isn't anywhere in sight.  We've, personally, learned lessons in trust, discernment, and extending undeserving grace. 

Today as we embark on a new season, our family stands together moving slowly into a new normal while many around us will not understand the emotions and complications of this new life we are living. 

Tomorrow Jace will get his port removed. We are joyous that he will be able to experience life without it. We are excited that a small fever won't mean a rushed trip to the ER. But no matter how faithful we are, we are still human. We still pray everyday that he is cured, we ask for healing from his head to his toes, we cry out victory over his life and we hope with everything we have that he will spend many, many, many joyous and fun years living life to the fullest. We constantly have to put our faith over our fear now. 

Cancer/Leukemia will always be part of who we are. We will talk about it. We will be passionate about it. We will work to raise money for families affected by it and for research to cure it. It is intertwined into all of our individually unique life stories. 

For that reason, I will continue to give you a small peek into our perspective in the current moment. 

Our new challenges are different, but equally as daunting some days.  

One of the challenges is getting people to understand that just because Jace is off treatment and has his port removed that everything is as normal for us as it is at their house.  "Cured" in our case usually isn't used until several years off of therapy. 

Another challenge is helping others understand that many of the side effects of the many medicines that flowed through his body will not show up right away. Often learning difficulties or educational challenges take some time to show up, but we have friends ahead of us on this path and have confirmed classroom struggles that were not present before.  We've also had friends tell of unempathetic teachers or administrators who refuse to keep the kids who are off-treatment on their 504 plans while in the classrooms. (NOT in our district) As an educator, my heart so goes out to these kids and families who are struggling themselves to adjust to a new normal and still help those around them understand that "this isn't exactly over." 

Some effects do show up right away. The rash that he battles all over his body that could take up to a YEAR to go away is something we didn't even think about until now. His legs and muscles still ache and hurt and his bones are still weak. He still gets exhausted like before. 

I won't even bore you with the financial or emotional burdens we face everyday. We aren't unlike the majority of people in the world. 

There are days that we still cry overcome by the emotion of it all and moments that we feel like we can't breathe because this journey was hard. And because it was hard and we had to work everyday to keep lifting our face to our faith, we are now trying to relearn who we are now, what we like, what our relationships can be while not being surrounded by chemo. 

Off-treatment, monthly checkups and no port IS a great season to be in, but like anything else it, too, comes with it's challenges and lessons and as long as we get to do that along side of this sweet face, we will be good. 


1 comment:

  1. ❤️ Continued prayers. It's a long road. I remember my sister saying that removal of her port really helped bc it made her feel more human again. Love to you all.