Hope Floats

I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie.  Either way, if I am flipping through the channels and it is on, I stop and watch.  Every time.  There is a line in the movie about giving hope a chance to float up.

We spent today at Johns Hopkins.  Dave was due to start round 3 of the clinical trial.  He had labs and a CT scan done before meeting with one of the doctors.  She did not have good news for us.  The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before.  The words “innumerable tumors” were used in reference to his lungs.  All around a sucker punch to the gut.  Completely unexpected.  On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”.  What this means is that Dave did not start round 3 of treatment today.  Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him.  So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment.  We will let hope float up to take the place of utter disappointment.

After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity.  Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic.  I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment.  I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future.  They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist.  I am excited to have an expert team take a look at my girl.

Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here.  Together I know that we will come up with a plan that will get us back on the right track.

xoxo,

Robyn

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4 thoughts on “Hope Floats

  1. Robyn, I ams so sad that this didn’t work. My heart goes out to you. The fact you mentioned Hope Floats, Joe worked on that. The fountain in our back yard was in Gena Rowland’s yard! I like the symmetry of of flowing water recharging in the fountain I’m listening to, to help w/ some sort of healing for your family. Miracles do happen, but it doesn’t mean that the news you weren’t expecting doesn’t suck! I believe in science but I also believe in hope! I love you guys!!

  2. I am so sorry Robyn… I cried when I read
    this today-please don’t loose hope and yes
    let your hope float up!
    Mike and I will continue lifting him in prayer
    along with your family and you !
    Stay strong and don’t give up!!

    Sent from my iPhone

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