Week 28

Hello from the Robinson family!  So much has happened since my last post, this will likely be lengthy…..so get a cup of coffee and kick back, this is going to take a while.

First I’ll update you on Davis’ treatment as I’m sure you are eager to hear how he is doing.

Davis just completed week 28 of 43 weeks of treatment.  He has made it through so much, and yet has so much farther to go.  We have been in and out of the hospital due to fevers.  His feet hurt daily due to the neuropathy, and his gait is unsteady.   We believe that the compounding effect of having to endure so much in his little body, he is becoming more negatively effected by treatment.  Thankfully he still recovers eventually, and we are able to experience some good times in the midst of his rigorous treatment schedule.

About 5 weeks ago, I was in the clinic speaking to his oncologist.  I was talking about my dreams of week 43, when treatment would be behind us, removing his port, traveling whenever we possibly could, running through crowds of people, touching public elevator buttons without disinfecting afterwards, you know the life we knew before.  When I was sharing my hopes, my oncologist’s face shifted and my stomach turned with it.  I know that hesitance, that shift in affect says bad news is coming.  She then informed me that she had been advocating with her team of oncologists that Davis undergo a 6 month maintenance chemo protocol following this 43 week treatment plan. 

I wept.

Since this initial blow, we have learned the studies done in Europe for Intermediate – High Risk Rhabdomayosarcoma patients have shown a higher chance of survival and lower chance of re-occurrence with this extended treatment.  In fact, the overall survival rate with only the 43 week treatment plan is 77% but by adding the maintenance protocol it increases overall survival rate to 87%.  This is good news!

My stomach turns to even type statistics.  There is a deep pit in my stomach that carries the weight of holding my child’s likelihood of survival around in every day moments.  Regardless of statistics, it will either work or it won’t for Davis.  So we just hold hope that it’s working.  Nothing is telling us otherwise.

So as you can imagine this change in his length of treatment comes with good and bad.  Even if it raised his chances by 1% we will do whatever we can to get Davis through this.  I’m heartbroken that he will have to keep his port in, and have to continue pumping poison throughout his body, and it will keep him immunity compromised.  But, he will be able to go back to school, he will get his hair back, and there are far less symptoms during this maintenance period.   See, good and bad!

Davis is such a warrior.  As he endures more and more of this intense chemo protocol, his body is getting tired.  Symptoms are more frequent, trips to the hospital are regular, and his energy level is depleting.    For every 6 weeks, we have 2 weeks of Davis feeling good and energetic.  So we take advantage and try to enjoy those two weeks as much as possible before the next treatment brings him down again.

Lily finished her second grade year at Scottsdale Christian Academy.  Considering the year we have all had, this is no small thing.  There were times where I wasn’t sure we would be able to do it all.  In the midst of everything with Davis, Lily still had school, homework, art club, show choir rehearsals, performances, and that’s not even including just a desire to have play dates and be with friends.  Her summer will look different than any other summer we have experienced.  We will be here, enduring the heat all summer, and spending much of our time at the hospital.  Lily is often torn when she has plans with friends because often it doesn’t include her family.  She rarely went to play dates, or outings without our whole family going too.  We suffer from serious cases of FOMO (fear of missing out) often times.  Now, if she wants to go to a movie with friends, swim, or do anything she is often alone with other families.  This can be isolating. 

There is a joke in our house that May is the month of Amanda.  May is the month that holds our anniversary, Mother’s Day, and my birthday, see….Month of Amanda!  I have always loved a good reason for a party and this month was no exception.  Lance and I were able to get away to a hotel here in town for a night, I spent a night at a hotel with some dear friends, we celebrated mother’s day, and my girlfriends took me to a Brad Paisley concert on my birthday.  Good times were had!  And yet, throughout this whole month I have been processing the reality that we as a family will be walking through 6 additional months of treatment. 

6 Months more.  How is it possible we are here?  How is it that Davis’ diagnosis is so significant that he is required to endure such an intense protocol?  And yet, I’m so thankful we have the ability to do something about Cancer.  It’s not a guaranteed cure but it’s something.  I was going through some old paperwork from when Davis was first diagnosed and ran across his treatment plan.   I remember when our oncologist came in to have me sign away our life to his treatment, and on the front page you have to pick what the goal is, and she checked off CURE.  I wept (noticing a theme?).  Cure.  We are committed to this outcome and will do whatever necessary to get Davis there.  Even in this commitment to a cure, it feels vulnerable to ask the Lord for healing.  It’s not guaranteed.  At all.  What if He doesn’t heal Davis?  What if it comes back and we have a nightmare ahead of us of even more treatment.  What if he’s healed from cancer but has terrible side effects from radiation?  What if….What if….What if. 

I’ve been listening to The Bible Project’s series on The Holy Spirit.  If you have not listened to this podcast series, it is a must!   I highly recommend it.  They discuss God’s Ruakh (Hebrew word for Holy Spirit) being the invisible presence of God here on earth.   A very shortened and unsatisfying summary is that Ruakh (Spirit) means wind, breath, God’s spirit, and man’s spirit.  They discuss how the Holy Spirit did three main activities in the Old Testament; empowering people for specific tasks, creating and sustaining life, and re-creating the world and humanity itself.  It is God’s Holy Ruakh that I have experienced deep comfort and empowerment in this unwanted calling. I am a testament to the Holy Spirit having called our family to a divine calling/task, that we ourselves would never ask for or want.  The Spirit is my only source of sustaining during times I didn’t think my next breath would come. My breath has been an ongoing theme that the Lord has reminded me of His presence, love, and intimacy in the midst of my pain and suffering. He is also transforming me into a new creation.  I am no longer who I once was.  I am being re-created with each new task, hurdle, calling, sacrifice, and suffering.  The Spirit is transforming my heart to believe how much more I could endure than I ever thought possible.  I can see that truly in Him and His power I can continue to put one foot in front of the other.  I have more kindness for my emotions.  I am a stronger advocate for the people I love.  I have deepened my loyalty and protection of those whom I live life with.  I have dreams for my family that are bigger than I ever held before.  I have dreams for myself that I never allowed before.  These transformations are the re-creation of my spirit aligning more and more with the power and purposes of the Holy One.  My heart so desperately longs to be more like Jesus.  I strive to be capable of walking through life with His eyes, empathy, mourning, capacity, wisdom, and courage.  I so desperately long for those of you who haven’t had the privilege of knowing Him, to see the richness our life holds when living in relationship with our Creator King.

In the same way that God’s Ruakh is sustaining me, He is also sustaining Davis.  Davis has been called to an unthinkable task.  He is being sustained and empowered through the impossible.  Davis will forever be transformed through the cancer process and suffering that he is enduring in this life.  God’s Ruakh in Davis is a mighty force, empowering Davis to move through his treatment with grace, and beauty.  Davis has more courage, tenacity, strength, and will power, than anyone I know.  His spirit is also being recreated.  He will never be who he once was, but is being re-created to reflect more and more of God’s purposes in his life.

I’m not sure which “What If” will be ours to walk through.  They all come with their own sufferings, sacrifices, and losses.   What I do know is the Ruakh that provides  breath in each of us, is the same Ruakh that empowers us to continue to put one foot in front of the other, endure suffering, and continually transforms us to reflect more of Him.  That is a privilege that I desperately cling to in gratitude, that I know each breath will come, because His Ruakh is ever present in my being.  Oh goodness…..here I go again……weeping.

Kristen Adams