Thursday, March 10, 2016

Waiting for Treatment

Photo: Caley Newberry Photography

Yep, that's right. We're still waiting.

Today marks 4 weeks since we learned that my cancer has grown in several places. That day my Nashville oncologist said "I am sending you to Miami to enroll in a clinical trial that looks very promising." So we boarded a plane 4 days later to Miami for a consult that went VERY well. The trial looks very promising, the science behind it is solid, and it's a treatment option that ASPS patients have never had before. Sign me up! 

The problem is that the trial isn't open yet. In most cases, patients who are referred to a clinical trial are joining during an enrollment period, meaning the trial is already open and a patient can immediately enroll if they meet the criteria for that trial. This amazing trial I am hoping to participate in has not even opened yet. I will be the first patient to enroll on this trial. The very first (which is super cool and very annoying all at once).

The staff at U Miami was hoping that the trial would be open around the first of March. Well, it's now the 9th of March and it's still not open. In the last 4 weeks we have only taken one trip to Miami and are ready to start the travel we have been mentally preparing for during this time of waiting*. So PLEASE PRAY that this trial will open soon. I'm super ready to get started on new treatment and am growing a little bit antsy. Okay, a lot antsy. I've been quite pestery to the staff during these 4 weeks and they assure me that it is super duper close to opening. So we're going to pray it open, okay people??

I have been antsy for sure, but still quite content. 

I've decided to look at this time not as a period of Waiting. Capital W Waiting is when a period of time is defined by a time of waiting. Though we are waiting for treatment, our waiting has become more like *sabbath. It's been a tricky time in lots of ways- parenting, daily normal people tasks, and planning have become more difficult. But there has been so much opportunity to really cherish the moments we've had in the waiting. Thank you for making this time easier for us- for the amazing food, flowers, cards, donations, texts, calls, company, and prayers. We feel so loved and well cared for. Thanks for being my people.

And let me tell you about this little gem that got dropped off at my door- it's a trail mix bar!! With nuts and craisins and chocolate covered raisins and m&m's. Isn't that the coolest ever?! She even put some chalkboard labels and a chalk marker in there. She knows me so well :)

1 comment:

  1. I know the waiting is horrible, but God must have a wonderful plan for you and it will come in His time. May you be calm and peaceful as you wait. Take the best care of yourself possible and be ready for what is to come. I know you dread being away from your precious daughter, who looks a lot like you, but friends and family will love her to pieces. Keep us updated and we will pray for healing in God's time. From a stranger in Texas...