Their Story

Talan

Talan was 3 years old when he got diagnosed with Acute Lymphoblastic Leukemia on August 26, 2011. That day all of our lives changed forever. The week before he began to run a fever on and off for a few days and he was also complaining of stomach pains. We brought him to the local emergency room where they drew blood and gave him a CT scan where they eventually told me he had some lympnodes in his stomach which was probably a viral infection. They told me to check in with his pediatrician in the morning. His doctor called me first thing the following morning to check in and also let me know that his blood work looked like a viral infection as well. He said that if he gets worse or no change in the next couple days to bring him in.

The next day Talan was still complaining of stomach pains and he also started to not move his neck. He would not look up or side to side, it was all by eye movements. He was also acting like he threw his back out when he went to bend over. I took him into the urgent care clinic at the pediatrician and he told me to take him to South Shore Hospital for further testing as this was not normal for an otherwise healthy 3 year old. So, at South Shore Hospital where they specifically have a pediatric ER, they drew more blood and also got a chest x-ray. The x-ray came back clear, but they told me that his red blood cells were off. They said either his body was not producing them or his body was killing them off somehow. The transferred Talan and myself by ambulance to Children's Hospital Boston right away where he was admitted.

Over the next week they ran blood work daily and kept an eye on his temp. He had stopped running fevers, but his blood counts were still off. Eventually, they wanted to run a bone scan to check for any infections that they couldn't see. They had to sedate him for the scan since he needed to stay still for about 45min (which was not a pretty site). The scan came back showing he had some very active sites in his marrow and they wanted to do a bone marrow biopsy. The doctors told me it could be leukemia, but it could also be other things as well.

That night the results came back positive for leukemia. Our "new normal" for life was not about to come into full effect!! Talan has had some very big hurdles to overcome through this process and he is only 7 months into treatment. He has a long way to go, but he will beat this! He is fighting this fight and he's not giving up! He is truly my hero!

Jenna

Jenna is our sweet, silly, and spunky 9 year girl daughter who is battling acute lymphocytic leukemia. She was diagnosed in October of 2010, just two months shy of her 8th birthday. She has fought a tough battle against leukemia (high risk), and is winning!! She is treated at UNC in Chapel Hill, NC. Jenna loves soccer, reading, and art. She takes a drawing pad with her almost everywhere! Lime green is her favorite color. She was so excited to get back to playing soccer in the fall of 2011 until pain from a bone infection in her legs kept her from running. She is fighting this battle with all of her might too, and smiling through it all!! Her plan is to be back on the soccer field in the fall. Jenna is an inspiration to so many; she is so strong!

She is so excited to get her shoes from Peach's Neet Feet!!

Reef

Baby Reef Carneson was diagnosed with Acute Lymphoblastic Leukemia at the age of 5 months during a routine pediatric check up. He was sent immediately by ambulance from the doctors rooms to Donald Gordon Medical Centre (DGMC) where he was met by an oncologist who did not mince her words and told us the horrible news. She further stated that his chances were not good because a) he had an extremely high white cell count (600,000) and b) he was under the age of 6 months - both of which were against his chances of survival.

A month into the Chemotherapy treatment Reef went into renal failure and had to be rushed to Morningside ICU and put on dialysis ... which he survived ... he then returned to DGMC and continued with an extremely aggressive protocol of chemotherapy. Approximately 3 months into his treatment he started seizing and these seizures could not be brought under control for 3 hours. He was again rushed to ICU at Garden City Clinic and treated for "epilepsy".......to read the rest of Reef' story please go to his website @ http://www.savebabyreef.com/journey.

Eva

We carefully chose her name to honor her great-grandmother; the name Eva means Life. So when radiologists told us that our ultrasounds, when I was 4-months pregnant, were showing conditions that threatened that very Life, we were devastated. My husband and I prayed, our family prayed, our friends prayed, people we didn't even know in church prayer circles all prayed. We prayed that the fluid on our unborn baby's brain would shrink, and that her brain would grow to fill that space. We prayed that she would survive this terrible conditions they called Ventriculomegaly and Microcephaly.

Then we were told about the hole in her heart. And then we were told about several other "markers", or conditions, revealed on further ultrasounds, which indicated she would have Trisomy 21, known as Down syndrome.

The prayers continued as we pored over medical publications and family accounts of what this all meant, educating ourselves and preparing for what our baby might need.

After Eva was born, genetic tests confirmed that she had Down syndrome. Further testing showed another hole in her heart. She failed all of her newborn hearing tests. But the fluid on her brain had decreased, an answer to our prayers.

At 7 months of age Eva received her first pair of glasses for extreme far-sightedness, and we were also told she would likely need to wear headphones to be able to hear her teachers in school.

Although Eva's eyesight has worsened over the last 2 years, but her hearing has improved and the holes in her heart have closed. She has learning delays, speech delays, and motor delays, all typical for children with Down syndrome. She has lots of therapists to help her learn, walk, eat and drink, and we have been teaching her American Sign Language.

And now, at 2 years, 4 months of age, Eva can walk, is starting to drink thru a straw, and uses over 50 signs to communicate with us! Eva's wonderful new PNF shoes depict her love of dogs, rolling a bouncy ball, the "I Love You" sign, and the Down Syndrome Butterfly fighter ribbon. Eva will be proudly wearing her beautiful new Fighter shoes when she walks at this year's 'Step Up For Down Syndrome' walk!

Thank you to Peach's Neet Feet and their generous sponsors for giving our baby girl this heart-warming gift!

Dianne & Sam Tourville

Ava

Please meet Ava. She is a 9 year old rock star currently undergoing treatment for T-Cell Lymphoma. She has totally kicked cancer to the curb and living a full and happy life again! She was diagnosed on Christmas Eve 2010 when she went to Shands for an excisional biopsy of her very swollen cervical lymphnodes. The diagnosis was devastating to Ava and her whole family...especially at Christmastime.

She had many ups and downs as she and her mom had to live for three months away from their family in Gainesville, FL to be near her treatment facility, Shands Children's. In April, 2011, her care was transferred to Arnold Palmer Hospital in Orlando. She underwent very painful shots in her legs, radiation, adverse reactions to chemo and inpatient stays for fevers. Through it all she sang, danced, smiled and coped bravely. She met many wonderful people like Joey Fatone, Shawn Stockman from Boys II Men, Joey McIntyre from NKOTB, and best of all, Justin Bieber! She loves music and is taking guitar lessons in her hometown, Clermont, FL. She wears her PNF sneaks ALL THE TIME and loves explaining how all the designs represent her!