Stories of Inspiration: Vague Beginning…Moving Future

Sometimes a story has a vague beginning.  When did Zack’s story really begin?  Did it begin the summer he was five awaiting the start of Kindergarten?  A handful of times that summer Zack had episodes of vomiting and we weren’t overly concerned.  Kids are pretty good at throwing up!  Does Zack’s story begin his first day of Kindergarten when the school nurse called us by 10am letting us know we needed to pick up our son from school because he had vomited and seemed a bit disoriented on his way to the clinic?  Had we ever seen this behavior before?  Well, yes, for the vomiting and no, for the disoriented part.  As his mother I kept thinking maybe he was just nervous….first day jitters???

His story may have begun on August 28th, 2005 when again Zack began vomiting.  This time it was very apparent something was terribly wrong.  On that day I had decided to make a turkey, and yes, with all of the trimmings!  That day Zack had a grand mal seizure which lasted longer than any seizure ever should.  On August 28th, 2005, I rode in an ambulance for the very first time in my life with my son convulsing violently behind me.  I was afraid to look back at him from the front seat…it would make it all too real. 

Zack was taken to CHOA at Scottish Rite and it was confirmed he had had a seizure.  My husband and I decided right then and there we never wanted to see a seizure again!    When the ambulance arrived, so did our neighbors and they stayed with the other kids until I got home.  My husband stayed with Zack in the hospital that night and was told by the neurologist on call that evening that our son may have had a stroke.  A stroke?  How many five year olds do you hear of having a stroke?  I just could not believe what was happening. 

Early the next morning I arrived at the hospital just in time to sit with Zack while he had an MRI.  That MRI was his first of many.  The MRI confirmed Zack did not have a stroke (thank God) but it did confirm he had an abnormality on his brain in addition to a great deal of swelling.  The doctor thought it was either a lesion on his brain or a very low grade tumor.  They explained to us “it” had been there for a very long time and may have been present in utero.  At that point we began anti seizure medication and became very familiar with the CHOA campus.  The plan at that time was to monitor the lesion, which meant MRI scans every 6 months and to take the anti seizure medication, Trileptal.  We checked in with our neurologist who recommended we see a neurosurgeon.  This was hard to digest for us and we were very fearful of the outcome.  At that first meeting with Dr. Roger Hudgins, the plan was again to wait it out to see if this “lesion” would change. So, that was the plan and waiting sounded a lot better than the alternative…surgery was too much to digest at that point.

In May of 2007, another MRI revealed Zack’s “lesion” was in fact a tumor.  It had grown larger and had a cystic center.  The doctor was still pretty confident that the tumor was not cancerous, which was a huge relief.  The reality though, for our 7-year-old, was that he was going to need brain surgery…the scariest surgery of all!  My husband and I were the ones who were scared…Zack was never scared.  He handled all of this better than anyone!  Needle sticks, MRI’s, doctor visits, medications were just things he had to do.  He never complained, not once.  He loved Dr. Hudgins and just knew he would be well taken care of, which he was.

On November 2, 2007, Zack’s surgery was performed by Dr. Hudgins at Scottish Rite.  Zack was the first patient to have a surgery with the newly installed Intraoperative MRi (iMRi).  Zack thought this was really cool and he was even allowed to tour the operating room to see where his actual surgery would take place.  It was comforting to me to see the room where they would be removing Zack’s tumor…not sure why, but it truly was.  On that day, we met a lot of the medical professionals who would be present at Zack’s surgery.  I felt as though we were all in good hands.  I was also feeling very fortunate that this state of the art facility was basically right in our backyard and we didn’t have to travel far from home to have his surgery. 

After several hours of waiting we learned Zack’s surgery was successful and that our son was fine….such a relief!  During the surgery the iMRi revealed a small piece of tumor left on the brain, which the surgeon was able to remove right away before they closed.  We felt very fortunate Zack was a good candidate for the iMRi because that machine probably prevented Zack from needing a second surgery in the future. 

We learned Zack’s tumor was a dNET tumor, which we also learned is a good tumor to have if you have to have one.  It was benign and they got it all!  Our son was recovering well…what more could we ask for???  Many people were horrified by Zack’s story and still are when the subject arises.  Sure, there were horrifying moments, but at the end of the day…we would never change Zack’s story.  It is what it is and he came out a survivor, as did the rest of us.  During this whole process I got through each day thinking “things could always be worse” so that made me stay focused on doing all that we could to help Zack get through it all.  At least we still had Zack in our lives.  We couldn’t change his story if we tried.  People would wish his tumor away.  I never did that because where would it go??  Would it come back bigger and scarier than it already was?  Let’s just deal with this setback in Zack’s young life and move on…the tumor was there and we needed to deal with it.  Looking back I think we dealt with it all pretty well!

Zack is currently in the 5th grade at Garrison Mill Elementary getting ready to make the transition toMabryMiddle School in the fall.  The day he takes his last steps around the halls of his current school will be hard on me, I think.  I am trying to prepare myself for his Walk of Honor…Zack has done more while being at that school than most of the kids in his class will do in their lifetime…his story began the first day he stepped foot in that school and they have been with us through it all.  I honestly believe I was able to send my son to school everyday because I knew the school nurse was there and that he had the best teachers in the world.  Everyone at that school is looking out for Zack…he is well taken care of there and it is such a relief.  Again I am overwhelmed by how fortunate we are! 

Zack continues to do well.  He has an annual MRI and attends Brain Tumor Clinic once a year to be monitored, which is comforting.  There is a certain feeling we get on the campus of CHOA that is hard to describe, but I do know that we feel very well taken care of there. 

In addition to preparing to graduate from elementary school, Zack is also getting ready for his spring piano recital.  The child has such a gift…his music moves me.  I am really impressed by how far he has come.  I truly believe this child can do anything he sets his mind to do…after all; he is a brain tumor survivor!

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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