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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

Amen, Scans all clear again!

We are back home after 36 hours of trips South, round & round, and back North. First landmark event, Zach got stuck for his IV while he sat alone in the chair Monday evening before his MRI. That was a monumental first. Then he had the MRI. This morning he kept the big boy act going as he sat alone statue still as the nurse drew blood for labs. Then time for bone age and scoliosis screening xrays. After reporting Zach's scans looked "perfect", Zach's doctor spent a lot of time talking to him about his life - school, grades, moving around between classes, PE, changing clothes for PE, friends, interactions with peers, leisure time activities, level of physical activity, activities of daily living, time management, and responsibility. Then we all discussed these topics and the significance and importance of these different aspects of life. Lots to consider for our new fourteen year old young man.

Our visit ended with the affirmation that given the possibilities Warrior Zach exceeds all expectations and is a blessing and a gift beyond measure to us all.

The silver lining to this trip for Zach was getting to be in charge. He picked his favorite places to eat - Olive Garden, Chick-fil-a, Don Pablo's. He got to take his Birthday Money & Gift Cards shopping - Target, The Lego Store, The Ghiradelli Chocolate Store. He commented upon arriving home and bringing in his loot,"This was quite a haul."

Tomorrow he will start the day by getting his teeth cleaned while his braces are still off. He will get his braces back on next Monday. Since he will have missed 2 1/2 days of school this week and he will have a lot of catching up to do at school the rest of the week.

As always, we greatly appreciate all the prayers, kind comments, and support as Warrior Zach continues his Survivor's Journey.

Praise God From Whom All Blessings Flow!

The Last Journal Update follows below -

That's Right Ladies & Gentlemen. Zach turned 14 today. Here's the twist. Today Zach celebrated without any family members. Our little boy is growing up and he chose to go with the youth group from church on their Fall Advance to Panama City Beach this weekend. As a result, Mom and Dad were not with Zach on his birthday for the first time ever. When we dropped him off Friday he smiled and hugged us goodbye. Today the group leader posted these pics on Dad's Facebook page. A Pokemon cake and a smiling b-day boy. Seems like it has been tougher on Mom and Dad than it has been on Zach.

A month after Zach's 5th Birthday he was transformed from a kid to a survivor. To say the future became a question mark was an enormous understatement. On this birthday Zach's future is still a question mark. Zach, however, has made another transformation to Warrior. So 9 years later he continues to get up every day and answer the question mark.

Today I had a friend who's life has been quite hectic lately say,"Hopefully my life will get back to normal soon." I replied,"Normal is overrated." Since our family has been on this journey with Warrior Zach, we have learned that normal is just a word. Your life is your normal and there is no wisdom in comparing your journey with anyone else's normal. All Zach can hope to be is the best expression of the gifts God has blessed him with so far. Today we celebrate Zach living out the life he had been given to the best of his ability.

In our normal routine next week, we will travel to Arnold Palmer Hospital for Children in Orlando Monday for Zach's annual screening MRI, and Tuesday morning we have an appointment with Zach's Pediatric Neuro Oncologist to discuss the findings, his past, and his future. Then the next week, our normal routine will include getting Zach's braces put back on because he had to have them removed this week for his MRI. After that, we'll have to take Zach for bloodwork and xrays in preparation for his next trip to see his Pediatric Endocrinologist. There we will discuss the meds he takes now and will might have to take in the future because of the effects of his previous treatment.

Meanwhile we will worry, ponder, and think about school, grades, puberty, internet safety, bullying, screen time, sibling interactions, friends, etc just like all the other parents.

Thank you for all your previous and continued support thru prayers, kind words, encouragement, and love for Warrior Zach.

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Mari-Ann Kelam
By Mari-Ann Kelam
Praise God, indeed! From Him all blessings (and miracles) flow! And a quotation from C. S. Lewis: "Miracles are a retelling in small letter of the very same story which is written across the whole world in letters too large for some of us to see." In these difficult times, it is miracles like Zach that keep some of us going! Bless you all!
With love from Estonia
1 person hearted this