Zackery's Story
written by mom Jill

Zackery was born on May 14th 1992. He was 4lbs 16 oz. I remember that day like it was yesterday. Zackery was so strong as I watched the nurses clean him up after his birth he raised up on his stomach and turned his head facing me with the meanest look, from that day I knew he was unique.

We had no problem with him at all. From the time he was born until he was 7 he had only mild colds like all kids have. Nothing out of the normal.

Around the time he was 7 going on 8, he then started to worry me. He had bruising on his legs and arms that didn't seem right. I took him to our primary care doctor and I wanted them to check him for Juvenile Diabetes. I told the doctor that I just wanted them to do a work up on him because I knew something was wrong but didn't know what. They did do the blood work and all his counts came back low. The primary care doctor sent us to a Hematologist and they in turn did more blood work and no diagnosis. This went on for months going to have blood drawn and bone marrow aspirations.

We started to believe that maybe Zackery just had low counts and he would grow out of it? We had a lot going on... seemed one bad thing after another. First we were right in the middle of a Florida Wild Fire. The fire was right in our back yard. Things like this kept coming up and we missed appointments to get blood drawn.

One day Zackery came home from his grandmother's and his leg was all swollen from his groin to his toes. No reason, no trauma, nothing. So I again took him to his Primary care doctor and had him call the Hematologist. They had Zackery admitted to Tampa Children's Hospital and after eight days still nothing. His leg was swollen twice the size of the other and the MRI, ultra sounds, x-ray showed no block, no blood clot nothing. It’s called Lymphedema... a collection of lymph fluid under the skin.

Zackery's doctors still had no diagnosis for his low counts so we were lead to another doctor. This one was an Immunologist, he did a few more blood tests and again nothing, so he sent us to another group of doctors and they did blood tests, bone marrow aspiration and biopsy and came up with he diagnosis of Myelodysplastic Syndrome with Monosomy 7, which is a bone marrow failure disease. The Monosomy 7 means he only has one number 7 chromosome.

August 22nd, 2001, our lives will never be the same after the doctors told us we were in complete shock. We went though stages, first we were crying, upset, then we were in denial thinking they must be wrong. This has to be mistake. You only see stuff like this on TV or it happens to someone else, not us, not Zack. We wanted a second opinion.

On October 4th, we went to Wilmington Delaware to see Dr Trigg. After that meeting we knew where Zackery need to be treated and have total confidence in this doctor.

We were at a point where we wanted to learn all we could, to better understand the changes he would be going through.

After we took Zack to Delaware for a second opinion we decided we were going to have his Bone Marrow Transplant done there at A I. DuPont Children's Hospital.

In December 2001, Zack had his Make-A-Wish. We thought it would be best for him to have his wish before he went for the BMT. Zackery's wish was to meet KID ROCK. The whole Make-A-Wish was a dream come true for Zackery. Kid Rock was the most pleasant, polite person you'd ever want to meet. He tried so hard to entertain Zackery. The day of his Make-A-Wish, we went to Kid Rock's recording Studio and listened to them play songs and then he asked Zack what songs he would like them to play. Zack was given tons of posters and even a hat that Kid Rock wore in concert. Kid Rock invited us back for a second day to show us where he lived and gave Zack a ride on his 4 wheel drive Mule. It was great, more than we ever dreamed. Kid Rock also called Zackery months later, after hearing that he wasn't doing well and sent him a signed guitar for his birthday.

In February 2002, we left for Delaware (we live in Florida). When we first got there Zack endured hundreds of tests, then on to the BMT, Chemo and Radiation. At first we thought it was going well.... He was sick had some problems but we thought he would be OK.

After months of an emotional roller coaster We lost our son to a Fungal infection. He was the extreme fighter until the end. Our whole world has changed, we no longer have our son. Still all these years later, I still ask Why? I wrote a small passage that sums it up the best for me:

Zack,
I miss you today, just as I did yesterday, I'll miss you tomorrow, just as I did last week.
I'll think about you today just as I did last night. Today is no different from Yesterday.
Your memories make me happy and put a smile in my heart.

I love you Zack!

Mom