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Zachary’s Story

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.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

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.

Latest Journal Update

Merry Christmas!

December 24, 2006 we get permission to pack up Zach and take him home for the first time since this adventure began about six weeks before. We load up everything we can think of that we need for ports, feeding thru the NG tube, meds, toys, diapers, and general supplies. I can't imagine we were any more terrified the first time we brought him home from the hospital years before. Home we went that grand day. A milestone in the rearview mirror.

Today it is all a blur in my memory. We arrived home to a huge beautifully decorated Christmas tree. It was overwhelming since I didn't anticipate there being a tree at all. Thanks to Ram Singletary and the in-laws I believe. Somehow we are asleep in our own beds. I don't recall how other than Karey is a Super Mom, but there were presents galore to be enjoyed Christmas morning. Our little boy that could hardly sit up and couldn't talk was home for Christmas. I can still see the picture of him sitting on the couch holding a Christmas gift, wearing sunglasses, and his head covered in the blue markings for his radiation therapy. Forty eight hours later we were back in reality on the fourth floor at Shands in Gainesville.

Tonight teenage Zach is asleep in his bed upstairs. I can't really fathom how we got here from there sometimes. I went back and read a few journal entries from that first Christmas time tonight. It is somewhat surreal to read about that time. I suggest you all do it sometime too. Others always say not to blink because time will disappear if you do and those boys will be all grownup. They aren't all grownup but oh how much has changed in the Christmases that have passed since then.

Tomorrow morning Zach will run down the stairs and will squeal with delight and jabber as he opens his gifts instead of being carried into the living room and being unable to express himself with more than grunts and grins over his Christmas loot.

For some reason I was feeling nostalgic and wanted to share my flashback with you tonight. Furthermore, I wanted to share the joy that tomorrow will hold as we enjoy our miracle boy. Hug your kids. Kiss you spouse. Tell your parents "Thank You". And Praise God from Whom all Blessings flow.

Merry Christmas to All!
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Comments

2 Comments

J.P. Maultsby
By J.P. Maultsby
I hear you!!! Merry Christmas!
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1 person hearted this
Carol Biggs
By Carol Biggs
Yes. It is a Merry Christmas.
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1 person hearted this