Cruise’s Story

Site created on April 12, 2011

Howdy folks...and welcome to my very own Caring Bridge site! I hope this site will keep everyone up to date on my progress as I try my hardest to whoop this cancer thing!!! Yep, I have a rare cancer currently diagnosed as a Malignant Rhabdoid Tumor.  Though it's not a brain tumor, it is in the middle of my noggin. I sure appreciate all of your thoughts, good energy & prayers! Thanks for supporting my family as well! Enough typing...it's time for me to go outside and play!!!



Hi Friends,
This adventure began December 16th, 2010 as we headed for the airport on our way to a white Christmas in Colorado.  Cruise's right eye was not tracking 100%.  A conversation with our beloved pediatrician made us think it was probably a side affect from recent teething & fevers...so we hopped on our first flight with the plan to watch it closely.  In the next 2 hours, his eye became permanently fixated up & out and the pupil dilated.  Our layover happened to be in DFW (thank goodness!)...and after another call to our pediatrician, we decided to hop in a cab & head to my old (and also much beloved) pediatrician's office.  He booked us an eye appt the next morning...and we went feeling quite calm.  The doctor was an alumna from my highschool, and graciously worked us in at 5:45am!  She examined Cruise and told us that he likely had a tumor. We were in disbelief.  We then went for an emergency MRI.  The day felt like 2 years....but 10 hours later, we were sent home with the joyful news that there was NO tumor or aneurism!  And Christmas was glorious!
With the worst case scenario off the table, we then were in hot pursuit to figure out what was going on with Cruise's eye. Our next appointments were the Monday after Christmas...followed by 34 more doctor appointments in the following 8 weeks as we searched the country (with amazing help from so many of you!) Around this time, Cruise's eye began to center which thrilled us.  Our Emory appointment was soon to follow & they felt that the "improvement" we perceived was actually a regression...meaning the eye was centering because more nerves were being compromised...not because it was healing. With that news, we booked another MRI for Friday...still NEVER dreaming it would be a tumor as doctor after doctor had said, "This little guy is far too robust, active & happy!"  "There is slim to no chance there's a tumor in there." 

Saturday, March 5 at about 6:30pm, I hung up the phone in disbelief.  The MRI showed that Cruise had a “mass.”  Around 8pm, we were told to be at the hospital at 6am that next morning for emergency surgery.  All six biopsies taken during that surgery showed normal tissue...but were deemed inconclusive.  The mandatory next step was serious brain surgery.  Another amazing surgeon made a 10" incision, removed the bone between his eye & ear, went in along the exterior of his brain and then cut the roof of his orbital globe.  The original surgeon then took over and removed about 1/3 of the tumor for a successful biopsy...and then he delivered the news that Cruise had a malignant tumor.  Four weeks into this journey, I still get literally nauseous as I even begin to write about what has transpired since.
An excruciating 5 days later we hear the first diagnosis:  Proximal Type Epitheloid Sarcoma.  It's rare & tough to beat.
We both then employed every research skill we ever learned in trying to seek out and contact the top oncologists in the country.  The pressure was further increased by the fact that we were scheduled to start chemo in 3 days...but if we began treatment, many of the top pediatric oncology facilities will no longer consult with you.  After much deliberation, we pulled the plug on beginning treatment and continued to research.  Again, the help from many of you was invaluable!!!

In the following month, both sets of grandparents put their lives entirely on hold for weeks...to come & help us attempt to hold it together! (I”m not sure how we would have otherwise survived! Thank you all!)
Then it all starts to blur. The diagnosis changed on Week 2 to Malignant Rhabdoid Sarcoma (an equally rare & tough tumor) though Cruise's cell size, shape, organization, his age & tumor size are not consistent with a typical Rhabdoid.  We flew to CHOP where Joe Verdecchia, Joe Helfrich & Rob Cox joined Cruise's entourage.  We then changed Atlanta doctors & hospitals and feel very lucky to be with this team!

Then chemo started Tuesday April 5th...we experienced our first ER trip & extended it to a 5 day stay...and that brings us right up to today!
I've aged 5 years. I've cried more than I thought possible. And, I've wondered how I would make it through the next day!  I've also been totally BLOWN away by our family & friends! I've taken tremendous pleasure from the most ordinary things...a sunny day, a blooming flower, all my boys being asleep under the same roof!  I'm forever changed.  Scared to death about what lies ahead.  And forever grateful to our amazing support team! Thank you for everything!

Newest Update

April 29, 2023…from Jen

Journal entry by Drew Verdecchia —

Hi dear friends & family,

It makes me smile and cry at the same time to read your posts, texts, etc and feel your love and support.  You truly CARRY us in times like these…thank you so very much!!!


It’s been a crazy and stressful few months, incredibly intense few days…bringing us to what now feels nothing short of a miracle.  

Cruise and Dr. Ed Smith are quite simply rock stars!


The courage and calm that Cruise demonstrated as they prepped him for surgery…I will never forget it.  We’ve been hearing the possible consequences repeatedly for months and, even the day before, the surgeon’s exact words were, “I can all but guarantee some level of paralysis…” I kept thinking about the impact this would have on the sports Cruise so loves…holding a lacrosse stick or dribbling a basketball…how do you process that and keep going at 13?!  How does he continue to make jokes, find a smile, be so polite…amidst so much constant pain and in the face such a daunting surgery and potential outcomes?!

We laid in bed the night before and he, only one time, calmly said, “Mom, I’m scared.”   

I thought, OH MY GOSH, buddy.  I am COMPLETELY freaked out!  (I definitely didn’t say that…but that was 100% my reality!) A friend had very accurately said he would be playing off my energy…and that I had to stay calm and strong for him…making this last week one of the hardest walks I’ve ever walked. 


And, Dr. Smith…words cannot express my gratitude for his discipline, dedication and the sacrifices he and his family have made for him to operate at this level.  It went significantly easier and faster than they anticipated.  Cruise’s brain allowed for relatively easy entry and Dr. Smith resected the entire lesion missing every nerve in his path.  “No strokes and no bleeds…no seizures,” as Dr. Smith report after surgery.  Incredible relief!


Outside of a couple big bandages and some incision pain, Cruise looks and feels GREAT and appears to have no weakness much less paralysis!  More miracles. And, no headache for the first time in months.  Doctors are cautiously optimistic…there is still a bit of wait and see…and no big activity for this kiddo for about 3 months.  But, we are over the moon to see our child comfortable…and beyond grateful for this best best best case scenario!  


Thank you all so very much for your support and love!!!  It has meant the world to us!  Now, time to breathe and live again!

Jen

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