Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.
My Story is the introduction to our CaringBridge site.
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In November of 2006, our five year old son Zach began having random bouts of nausea and vomiting accompanied by an increasing loss of coordination.A CT scan performed 11/14/2006 revealed a posterior fossa brain tumor and resultant hydrocephalus.On 11/16/2006 at Shands UF Dr. Pincus removed Zach’s tumor.The follow-up MRI indicated the surgeon had successfully removed all the tumor tissue.Pathology reports diagnosed Zach with “Classic Medulloblastoma”.A lumbar puncture on 11/28/2006 showed “suspicious cells” in Zach’s spinal fluid.
Zach’s treatment plan calls for radiation therapy to his entire brain and spinal cord, additional radiation to the posterior fossa where the tumor was located, and then 8-10 rounds of chemotherapy.As of 01/07/2007, Zach has completed the craniospinal radiation and has begun the radiation therapy focused on the posterior fossa.The radiation therapy will be completed by the end of January.After a 4 week break, the chemotherapy regimen will begin.
As a side effect of the brain surgery, Zach developed cerebellar mutism.This is a difficult concept to understand and describe, but what follows is my attempt.The connection between Zach's conscious/cognitive mind and his physical functions are disjointed/disconnected as a result of the trauma to his brain from the tumor and its subsequent removal.It appeared that Zach has regressed to an infant like state.He could not walk or talk and had to wear a diaper again.Yet cognitively he was still in there.He knows everything and everyone he did before.He just can’t make his body work right.
The good news is that this is a transient condition.Zach has been working diligently with Physical Therapy, Occupational Therapy, and Speech Therapy.Zach no longer has to wear a diaper.He communicates through self taught gestures, roars, squeals, and sign language.He is controlling his body much better with sitting up unaided, crawling & scooting around on his own, and standing & walking with support.Zach is on the way back.All he needs is time to strengthen and heal.
Check Zach’s Journal for a Historical Email account of his story.
Tonight finds us home again. Zach and Levi are already enjoying being back in their beds. Mom and Dad will be headed that way shortly.
As always it is stressful getting there on time for the MRI and being there for the MRI and getting Zach stuck for the contrast infusion. Yesterday was no different.
First we squeezed in a trip to Downtown Disney and the Lego Store aka Zach's favorite store. A quick supper at the TREX restaurant preceded the do we really have enough time trip to APCH. We made it 30 minutes early. Then a failure to communicate revealed at the last minute that Zach was only getting a "brain" scan not a "brain & full spine" scans. After a phone call and quick email to his doc. We were assured all Zach needed was a "brain" scan because Zach is Six Years Off Treatment now. Mom & Dad were only mildly freaking out because last years three MRI artifact hunt was all in Zach's spine and now it wasn't even going to get scanned. As it typical goes Daddy holds Zach still for the needle stick. Heads in hotel beds by 10:45.
Today we were up and off to find a Chickfila on the way to APCH. Found it and got to the appointment late. We went right back. The doctor came right in and was amazed at the sight of Zach and started talking away. Screech! "His scans looked great. Sorry I should have said that as soon as I walked in." More than an hour of questions answers and planning later we were on our way home again.
In summary, Zach is a walking, talking, amazing miracle. Zach's doctor was amazed at what he has accomplished since last year. Black Belt in karate. Great grades in school. Growing into a young man from the little boy I carried easily through Shands that November this journey began seven years ago. She really knows how this story often goes and Zach's story is a fairy tale among his peers.
Thanks to you all for the prayers, love, and support. We feel them and we truly appreciate them all.