Distinguishing between duty, conscience, and selfishness

We may be sitting exactly where we prayed so hard to be, with a thriving Charlotte who currently has no signs of cancer, miraculously no evidence of any major health problems related to treatment, and yet we sit precariously. We sit here uncertain. Charlotte’s disease has so many uncertainties even now that she has successfully finished frontline treatment. It is these risks and uncertainties that brought us to press on, seeking the Vaccine study in order to help combat disease that may resurface in these children. The same uncertainties we acknowledged a year ago are still hanging over us, tipping our balance and creating the unsettling feelings that Brian and I simply live with and accept as our new reality. The stomach knots that come and go, the sick worried feelings that surface and dissipate, the uneasy acceptance at times of what appears to be normal life ready to be lived again. This is our reality and will be so for some time. So, how do we know which decisions we make are out of emotional necessity and understanding verses rationale, logic. I’m beginning to understand the answer to this question: it is impossible to distinguish between them.  The decisions are a mix of both emotional which feels selfish, but also well thoughtout and researched logic.  And this is because there is not a single person on this planet that can help us.  There is not a single doctor, trusted or of expertise.  Not a single parent who has been here before us or along with us.  Not a single human being that knows what is best for Charlotte.  There are ideas and schools of thought and speculations.  There may be a majority, or a common consensus.  But when it comes to how to keep this cancer that she worked and fought so hard to beat back from ever returning....this decision alone belongs to Brian and I.  

So today, over the next week, we pray for guidance in any way it comes.  We pray we listen to that inner voice and feeling we know as our conscience, as Gods voice. We will gather what information we have with the knowledge that our window for moving on to the next potential step is closing fast.  We have gathered information and have scheduled a live face to face conference over the computer with Dr. Sholler out of Helen DeVos Children's hospital.  She is running a study we have been interested in for some time: DFMO, which is an oral medication taken over a course of 2 years along with some specific dietary restrctions and guidlines in order to essentailly "starve" neuroblastoma cells of a key product necessary for metabloism and proliferation.  Could this drug, along with what we hope the neuroblastoma vaccine trained her immune system to do, work together to keep our girl cancer free during this window where relapse rates are terrifying?  Is she a candidate?  Are there any draw backs in participating in this 2 year study? We have so many questions.  Some of our questions have been answered, and yet we need the wisdom to understand those answers.  We cannot turn back once this window to join this study closes.  We have less then 3 weeks to get everything in order if we chose to begin.

We wanted a Thanksgiving and a Christmas season to be free of the burdens that come along with Charlotte's diagnosis.  We initally celebrated her clear scans last month with the thought that this meant we got to enjoy the holiday season as a carefree family, hoping there would be no worries that would surface regarding Charlotte. We knew we had this DFMO study hanging over our heads with decisions to be made, yet I was naive. We cannot move on until we have decided if Charlotte should take this DFMO medication for the next 2 years and join the study.  As much as I want to hide my eyes and pretend the worst and hardest is behind us, we cannot know or say this.  As much as I want a carefree holiday season this year without cancer treatment, hospital visits, clincial trial appointments....we cannot have selfish motives either.  I tear up writing this to you because I am really struggling with this.  At the end of the day, we are still often scared parents trying their best, trying to find the right path. Please pray that we have a clearer path to help guide our decision after we meet and talk with Dr. Sholler next Wednesday afternoon via this online conference.  Please God, keep guiding us and helping to lighten the heavy load we feel when it comes to how best to help heal our baby girl.  We love her so much, but as much as we love her....supposedly you love her MORE. I cannot fathom that, cannot grasp it.  But I will try to believe it, and try to keep following the faith I have felt grow within over the past 2.5 years of this journey. As always, thank you for your continued prayers as we make this important and necessary decison over the next week. 

My babies on my birthday last week! They helped daddy make it a special evening

Charlotte getting ready to go "Turkey Hunting" on Thanksgiving day with Poppy, her dad and her brother and sister.  She made a sling shot to stun the turkey and is doing some target practice here:)~(and by turkey hunting, I mean a walk in the nature park with homemade spears and a turkey call pretending to hunt a turkey...but don't tell them this. They love it!)

Evening Yoga with Taylor: this is lizard on a rock pose.  Love them so much

Charlotte was told to go get ready for her make up dance class.  Her eyes welled up in tears and she got so sad when she learned "make up class" meant to go to a class she missed so....I agreed!  Make up class should entail MAKE UP!

My girl on mommy's birthday

Playing Go Fish, one of her favorite games, with her preschool class pet Charlie she got to bring home last weekend.

Make up class yall!