Amanda Riley Foundation

Supporting Children Battling Cancer
Making a difference...one SMILE at a time! 

 Riley Warriors Stories

 Below are details of some of the children that we are or have worked with. These are some very precious kids that unfortunately are in the fight of their life, unfortunately, some have lost their life. Everyone's story is different but still the same. Hopefully one day soon this page will be empty because we would have found a cure for cancer.  Until then, we will do everything possible to support them through their journey, one child at a time.   



This is Olivia.  She is a sweet 12 year old young lady fighting cancer for the 2nd time!  She was originally diagnosed in July 2014 with Ewings Sarcoma.  They found a tumor under her right armpit. She had 2 surgeries and chemo for 9 months.  After completing treatment she was declared cancer free!!  All clear scans.  She spent the summer of 2015 getting back into her routine and loving life. She loves her church, family and friends and was so excited to be feeling good and being able to spend time with them.  


In early November 2015, she was away on a retreat when she started feeling sick again with a headache, nausea and fever.  Her mom initially thought it was strep and took her to the doctor.  Little did she know her cancer nightmare had returned.  This time she was diagnosed with AML Leukemia.  A secondary cancer due to the treatments she received to cure her from the first cancer.


Olivia entered the hospital the following day on November 4th and within 48 hours was in the Pic-U.  They had no idea that they would be spending the next 2 months there!!  She got a horrible respiratory infection, was intubated and they almost lost her more than once.  She finally turned the corner and was able to be moved to the AFLAC Cancer floor where the family spent Christmas.  She was finally able to come home a few days the end of December but was back for another month long stay soon after.


Olivia is currently home and is feeling better.  She will return to the hospital the end of March for a stem cell transplant.  She will spend 4-6 weeks in the hospital and will then transfer over to the Ronald McDonald house for a few weeks.


This special young lady is in the fight of her life but has great faith and will pull thru with His help.  Please add her to your prayer list.

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 Our daughter Anna Mott was diagnosed suddenly in August of 2012 with a rare brain tumor, pineoblastoma. Absorbing the news was the most difficult thing our family had ever faced. We were shell shocked as she was immediately transported by ambulance... To read more click here: Anna's Story

 

 

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 Grant's Story

 

 

 Grant is a 2 1/2 yr old child that was diagnosed with stage 4 Rhabdomyosarcoma in Sept 2013.  Rhabdomyosarcoma is a rare cancer that is found in the soft tissues of children.  At the time of Grant's diagnosis he already had 5 tumors - one at the base of his brain - one in his right arm - two on his spine - and one in his left leg.  Along with those tumors the cancer was also throughout his bone marrow.

Grant is currently undergoing daily radiation treatments along with weekly chemo treatments. The results after Grant's first scans were better than anyone could have hoped for.  The tumors have shrank drastically and his bone marrow came back 100% clear of cancer!!
 
Grant is in the thick of his battle - but he is one strong fighter.  Grant's treatments don't keep him from doing the things he loves and bringing so much joy to his family and friends. 

Grant is the 2nd child of his very precious family.  His 3 1/2 yr old sister, Elizabeth, is his best friend and they are pretty much attached at the hip.  Grant's 8 month old sister is the apple of his eye.  Grant is one protective and sweet big brother.  

Grant loves being outdoors, camo, and painting.  He also loves the movie cars and of course Mickey Mouse!

              

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 Brandon's Story  

             

Brandon Lowe was a healthy 17 year old boy, full of laughter, playing sports, riding jet skis and racing his dirt bikes. He raced motocross for 13 years. His life suddenly changed on June 10, 2012.  Brandon broke his left arm while wrestling with his girlfriend. He was complaining with some aching about 4 weeks prior but it would just go away. He didn't want to go to the doctor. We was thinking maybe growth pains or just overactive using his arms so much with the sports he done. Not thinking the whole time he had a tumor in his bone. Trip to the emergency room, which they overlooked, and a follow-up with the pediatrician that sent us to a orthopedic sports doctor. With several x-rays they noticed a shadow on his left humours bone...99% certain of bone tumor. They sent us 3 days later to Scottish Rite & Emory hospital for further testing. After biopsy and all scans and tests he went thru for 3 weeks he was definitely diagnosed with  Osteogenic Sarcoma (rare bone cancer). He had a 2x4 tumor in his left arm and 5 micro size tumors in his lungs. We started chemo immediately on July 1st, 2012. 

 

 

I was an emotional wreck and I just wanted to just pick him up and just run away and not ever come back. I never thought I would be in this situation yet alone my son battling cancer.  Cancer does not discriminate. 

 

Thankfully, we had met a wonderful lady named Barbara Cox Riley at our stay at the hospital. We became close and she is very good to my son and my family. She made our stay at the hospital a pleasant one, serving all families on the Aflac floor lunches, dinner and surprising the children with gifts.  Seeing their face light up while undergoing chemo is priceless. We were very overwhelmed with what she and her organization has done to help so many families. Hearing of her child with cancer and the loss of her daughter was just heart wrenching to me. I didn't know what to expect with my son being diagnosed. We had many emotions going thru our minds, scared, mad, frightened, worried, crying, stress. My whole world just shattered beneath me.

 

He had his tumor removed in his left humorous bone and replaced with a prosthetic bone and he has had 4 lung surgeries. The tumors keep developing in his lungs and now he has another knot to appear again in his left arm where he has his prosthetic bone. He has been fighting cancer now for 15 months. Unfortunately, he has had 9 types of chemo that has not helped so wer were advised to go to MD Anderson in Houston Texas to continue treatment.

 

With all the travel, motel stay, medicine we were struggling to manage. As a mom, I traveled with my son to get his treatment while my husband stayed home to work and take care of things at home. Barbara and her organization helped my family a great deal. She gave me cash to travel, many gift cards for gas and food. Unable to afford my husband to visit us and our finances low, Barbara flew my husband from Georgia to Texas twice to visit us for 3-4 days each time. Without her help, I don't know what we would have done to make it for a couple of weeks. And for her to fly my husband 900 miles is just wonderful. She is just an absolute blessing. My family Thank You Barbara and for your Amanda Riley Foundation that you have created. Many prayers to you and ALL you have done for my family to make things easier. WE Love You and Your such a blessing to many families. I see their reactions on their faces at the hospital. GOD Bless You

 

Today, Brandon has graduated high school and has been accepted to college so he can follow his dream. He wants to be a pediatric oncology RN and do radiology. He's unable to attend college right now and it being put on hold while we are in Texas doing treatment..

He is still fighting cancer now for 15 months. He is scheduled for more chemo and surgeries. We pray each day for a cure and a miracle for Brandon. He is staying positive, praying and always keeps that perfect smile on his face even thru the pain he has daily.

 

HELP FIND A CURE FOR CHILDHOOD CANCER. NO CHILD SHOULD FIGHT TO SURVIVE. THEY NEED TO BE KIDS AND ENJOY LIFE....NOT FIGHT FOR IT!

 

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Just wanted to Thank all of you for providing meals to us & the gift bags full of goodies & the snacks in the lounge. Connor was disgonsed this past May with Tcell leukemia & has had some ups & downs. Thanks for putting a smile on his face!! God Bless

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 My daughter is eight and is being treated at Scottish Rite's Aflac Center where she received an Amanda Riley Foundation goody bag. She was so thrilled and all smiles!! She had fun with the goodies while she was in the hospital and couldn't wait to take her brothers and sister to Chik-Fil-A with the gift card when she was able to come home. Thank you for all the smiles you put on her face- both at the hospital and at the restaurant. I can't tell you how proud and happy she was treating her siblings to lunch and having a great time with them....................................................Amanda will always have a special spot in our hearts....Rena

 

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 Our 4 yr old daughter, Adelai was just diagnosed with A.L.L. two weeks ago. I just wanted to thank your organization for the goodie bags and essential items you made available for our stay at Scottish Rite. It's the little things that make a huge difference in knowing that you aren't alone. Thanks again.

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 BRAXTON'S STORY

Braxton is a 7 year old child that was diagnosed with stage IV Neuroblastoma in November 2010 which is a disease in which cancer cells form in nerve tissue of the adrenal gland which is located on top of the kidneys.  His most recent scans in June were not what they had hoped for. The cancer has now spread to the bones and lymph-nodes. He made several trips to Philadelphia for a new therapy but unfortunately, it was unsuccessful. The next step will be antibody therapy once the protocol opens up.  

Braxton is truly in the midst of his battle but that has not stopped him from being a wonderful outgoing little guy.  He loves being outside hunting and fishing.  He loves the movies, Cars and Toy Story, and loves country music.

 

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MILLIE?S STORY

On Thursday,  August 4, 2011, Millie began vomiting in the middle of the night and complaining of a stomachache. Her mother felt her stomach Friday morning, and noticed a knot. The following morning, they took Millie to the Emergency Room at Scottish Rite.  They immediately x-rayed and performed an ultra sound of her stomach. Her blood pressure was also extremely high 159/119. At first they thought their machine was not working properly and had to take her blood pressure manually. This confirmed that indeed her blood pressure was very serious.

Soon afterward, the Emergency Room doctor came in and delivered news that would forever change this sweet girls life. She had a very large tumor, the size of a grapefruit in her left kidney that was cancerous. He believed, at the time, it was a Wilms tumor.She had surgery to remove the tumor and her left kidney.  Fortunately, tests show the cancer was contained in the kidney area only seeping a little spillage but has not spread.

Millie was diagnosed with having a rare form of kidney cancer called Clear Cell Sarcoma of the Kidney, stage III. This type of cancer affects only 20 people in the United States per year. She has undergone radiation and is currently receiving chemo treatments.

Millie is the forth child for this very sweet family. I had the pleasure of meeting her and her sweet mom recently. April, the mom has tremendous faith and know that God has a plan for Millie.  They are weathering this storm, taking each day as it comes and is trusting in God for strength and courage to get them through.  


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DUSTIN'S STORY

Dustin was born on April 27, 2011 and was immediately diagnosed with Neuroblastoma. He has disease in the adrenal glans-at kidneys, lungs and neck. He immediately started chemotherapy treatments. The first of November he was re-scanned and unfortunately, the chemo treatments are not working.  The tumors are not dead but they have not grown.  

Dustin is the baby of the family with 3 siblings ages 4, 7, and 8.  We have been and will continue to work closely with this family to do all we can to make life for the a little easier as they go thru this cancer battle.  

 

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 PSALM'S STORY

In His Mothers Words:

 

My son Psalm was a 11 month old baby when we were informed that he had cancer. They discovered a tumor in his left kidney called Wilm?s tumor.  This type of cancer is usually found in kids at age two or three so it was just a blessing from God that the doctors found it so soon.  This news still made me feel like my heart was ripped out.

The next steps were surgery and chemo.  My son had his left kidney removed and now he is living with just one. My son now has to do chemo once a week for the next six months.  He is only one so the chemo medication is very light and doesn?t really bring him down unless he takes two medications in one chemo setting.  Despite this situation, my son still keeps a smile on his face and mine too.

My word of advice is to keep God first, because if it wasn?t for Him, I wouldn?t have my son or my joy. Psalm is my first and only child so that makes him even more special to me.  So I say to everyone reading my sons information ? stay strong and keep the faith. This experience will be a testimony for my family and yours if your child is battling this disease. Keep your head up and heart open. Pray and cherish every moment with your child.

Thank you Ms. Riley again for the box of goodies and for your foundation. You guys have touched me and my son in the storm we are battling. I hope this information on my son Psalm will help and touch lives of others.

 

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NYAIA'S STORY

Sweet little Nyaia just turned 2 in September but is already in the battle for her life.  In July she was diagnosed with Rhabdomyosarcoma which is a muscle cancer that attaches to bone. Her tumor is on her right thigh.  She will be having surgery on 11/22 to have this tumor removed. She is in the 4th month of her treatments which include chemo and radiation. 

Nyaia lives way down in Columbus but has to commute back and forth to Atlanta for treatments. She lives with her mom and her 3 year old sister. Due to her illness and the numerous trips required of them to come to Atlanta for treatment, Nyaia?s mom had to quit her job, which has cause a tremendous hardship on them financially.

This family is only 4 months into a 10 month treatment plan.  We have been and will continue to work closely with them to try to make their lives a little better as they weather this storm. 

 

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 ZACKERY'S STORY

Zackery is a 3 year old little guy with kidney cancer called Wilm?s. He was diagnosed in July 2011.  In September he had surgery to remove as much of the cancer as they could. They had hoped that the cancer was localized to the kidney but unfortunately, they saw that the cancer had spread.  He is currently undergoing chemo treatments and they will continue for the next 6-12 months. 

Zackery has a very difficult time handling the chemo treatments having bouts with extreme nausea and vomiting as well as fevers.  This is extra hard for his mom because he is so young and helpless.  In addition to having Zackery with cancer, this dear mom has to deal with his sisters that are 10 and 11 that don?t understand why mom and dad always have to be gone and they have to spend so much time with a sitter.

A letter we received from Zackery's Mom:

First I would like to say thanks to you and your staff for all that you have done for me and my family. We are so greatful for everything. It means so much to me to see how someone care about someone that they have never meet before. I dont even know how to repay you for what you have done for us. GOD BLESS YOU ALL!!!!!! Well now a lil about Zackery story.


One Friday we were sitting at home having fun Friday with the kids and Zackery nose started to bleed and wouldnt stop. Nose bleeds run in are family he gets them all the time but this one would not stop. So we took him into the hospital and the doctor check him from head to toe and then he went back to his belly and start rubbing all over his belly and ask for us to hold on please and he will be back and then he went and got another doctor and he check Zackery and ask us if he has been saying does his belly hurt. I was thinking to myself what does this have to do with his nose. By this time Zack nose had stop bleeding and no signs of bleed but what was on his shirt. Now the the doctors was not talking to us any more they were talking to each other. I was getting very upset because no one was saying anything to me. On top of that another doctor had walked in. So I ask what is going on with my baby. One doctor said we need you come back first thing in the morning just saying that we need to run some test saying that everything will be ok. checking his nose one last time and said we will see you in the morning. So we came back to the hospital and they had us go to the other side of the hospital and the place that we went to it was call " CANCER AND BLOOD DISORDER CENTER" me not thinking nothing about CANCER because we brought Zackery in for his nose. We were there for it seem like for ever and ever. We came back for to weeks just taking test. The last test the nurse said please follow me she took us back to a room where no one was and ask us to have a set. His father and I said we were ok what is going on she said the the doctor will be in. Zackery and his dad were just playing around like boys do. The doctor then came in and seen them playing and said to his dad dont hurt him in a joking kind of way. Zackery and his dad said we ok. The doctor said to me have a set. I said I'm ok what is going on with my son. He said you may wont to have a set Anthony yell out NO what is going on seeing me get upset. That is when he said Zackery has CANCER it is call WILIMS TUMOR. I went into a yelling mode holding my son. I thought I was going to lose my son he is only 3yrs old. We were very upset asking all kinds of questions trying to see how we can make it go away. Fast fowards a little the hospital were great they did rounds of  chemotherapy on Zackery to make the tumor smaller. That was very hard to see because he was always sick. It seem like we had moved to the hospital because his little body couldnt take the chemotherapy. The chemotherapy did make the tumor smaller and now he could have surgery. They had to go in and take his left kidney out and a lil of his right. Zackery is doing great now he is still having chemotherapy to make sure all of it is gone. He still get a little sick but not bad as it was when the tumor was in.


 

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AUDREY'S STORY

This sweet 6 year old little girl has really had a tough time of it.  She was diagnosed with Stage IV Neuroblastoma back on November 2, 2010.

We received her application in February and upon contacting her mom we found out that she had just returned from Philadelphia where she had surgery.  She was about to have a stem cell transplant. When one receives a stem cell transplant, they are in isolation for 30 days!! Her mom was very concerned about how Audrey would do being confined for such a long period of time.  We sent her several items to help occupy her and to help her through it. 

Upon speaking to her mom after the transplant she said it was an absolute horrible experience.  She said sweet Audrey was so sick that they almost had to move her to intensive care on several occasions and was not sure she would make it through.  Unfortunately, the procedure did NOT WORK and this sweet girl had to go through it all over again!!

I spoke with her mom on 11/7 and they were back in Philadelphia receiving antibody treatment. Audrey is doing much better and they hope to be finished with all treatments by the end of the year.

 

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ERIC'S STORY 

The following is his story written by his mother. 

My son Eric Mathis was diagnosed with stage 4 Rhabdomyosarcoma (muscle cancer) on July 29, 2010. I would always see the kids on T.V., but you never know what someone goes thru unless you walk thru their shoes. I was devastated, I was changing his pamper on  July 12th and I found a knot on the left side of his stomach. We went to the doctor the next day and he thought that it was a boil so he gave Eric antibiotics, and of course it didn?t go away. A week later he was put in the hospital and that?s when we found out that it was a tumor. We went to Atlanta by ambulance the same day to Scottish Rite.

At first all I would hear from the doctors was bad news. They would say 50/50 chance that they could cure him.  It?s bad to say but I was tired of talking to them because I was tired of hearing bad news. Eric had to have 16 rounds of chemo. The first treatment he ran a fever. We live 3 hours away from Atlanta in a small town called Albany.  Anytime Eric would run a fever we had to go to Atlanta (since there are no cancer doctors in Albany) until the fever went away. But yet with all the poking of needles, fever, and immune system really low, blood transfusions, Eric was still a trooper. He would brace himself every time his port had to be accessed and he would say, ?I?m ready mom.?  For about a month we were back and forth to Atlanta because of fevers, but he would still be full of joy so the nurses started calling him ?big man? and he loved it.

On November 9th 2010 he had surgery and they removed 99.9% of the tumor. The doctors said the chemo did what it was supposed to do. He went thru radiation for a month with no fevers and no blood transfusions.

 I thank GOD every day for everything he has done for us.  It went from bad news all the time to good news. Everything that the doctors said that would happen didn?t. They said he would lose his left kidney and would have to wear a bag for the rest of his life and he still has both kidneys. GOD is so amazing! They said he would walk with a limp and he doesn?t. Eric would always tell me that his body would be alright.  As long as you put GOD first you will make it.  The last chemo treatment was March 25, 2011. We go back every 3 months for check-ups. I hope and pray that there will be a cure to end all types of cancers.

Thank you so much Mrs Riley for everything that you have done.

 

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KIMBERLY'S STORY

Kimberly is a 3 year old little girl that was diagnosed with stage IV Rhabdomyosarcoma. Her tumor is in her stomach.   I had the pleasure of meeting this sweet little girl and her mom last week.  Unfortunately, Kimberly is not doing very well.  She is in the NICU at Scottish Rite and has been there for approximately 2 months.  Her mom said that she cannot move anything but her eyes.  Please pray for this precious little girl.

 

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FERNANDO'S STORY 

Fernando Is a 13 year old young man that was diagnosed with Osteosarcoma back in March 2011. He had surgery to remove the tumor which included having his leg amputated.  He took all this in stride though and continues to have a positive attitude. He is from a very large Hispanic family where the primary language spoke is Spanish.  Most of my contact has been directly with Fernando which has been very cool.  He called me just a few days ago to ask for some wresting related things for Christmas.  He said he is doing really well, finished treatments about a month ago.  He loves the clothes we sent to him a few months back and loves the WII we sent to him. 

 

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LAURA'S STORY

Laura was the first patient that we helped and one that is very close to our heart.  She and Amanda had a lot in common, were about the same age and both loved to run. Laura ran for Etowah High School before being diagnosed with Osteosarcoma. 

Laura's Story in her mothers words:

On September 11th, 2007, Laura (now 17) was diagnosed with a malignant bone tumor in her right femur. She was treated at Scottish Rite in Atlanta. Her treatments included multiple rounds of chemotherapy and at the end of November 2007; she had a limb saving reconstructive surgery on her leg. They removed half of the femur bone and replaced her knee. They performed several tests on her femur bone afterwards and confirmed that the chemo worked. As we were told, it's "very treatable but will be very, very hard on her". Even though each round of chemo was a struggle and it took lots of hard work on Laura?s part to rehab her leg, she pulled through and was able to get back to being a normal teenager. 

 

Almost one year to the day upon her diagnosis, Laura wrote this ?I remember? story about her cancer battle:

Hello everyone!!! Today is September 1st, exactly 10 days until the one year anniversary of my diagnoses. Wow. Praise God. So much has happened in the last year. My life and the lives of my friends and family have been changed forever.

I was inspired by Madison Winn to write an "I remember story": I remember one year ago, going to the doctor to get an x-ray of my knee because I would lay in bed at night crying because it was throbbing in pain.

  • I remember the doctor telling me, "You should get an MRI." and my dad looking at my worried face and saying in a joking way, "Don't worry, Laura, you don't have leg cancer." ha.
  • I remember sitting at Olive Garden with my parents stuffing my face with lobster ravioli after getting my bone scan because I wasn't able to eat all morning.
  • I remember my surgeon calling us and telling us my appointment was on September 11th, and
  • I remember the horrible feeling that gave me. I remember the looks on my parent?s faces when my doctor sat down and said, "Now I don't want to beat around the bush. I think you have a malignant bone tumor."
  • I remember getting measured for my crutches, and going immediately to the hospital to get blood work done for my biopsy on 9/14.
  • I remember my mom getting the call that they had checked my CT's and that there were no tumors in my lungs, and how we cried.
  • I remember seeing my oncologist for the first time, and all of the statistics he told us, and then the social worker walked in with a doll that showed me what a central line was and told me I would lose my hair. Then I cried.
  • I remember the drive home that day, driving through downtown and hearing church bells.
  • I remember getting my central line in. That night was my first chemo.
  • I remember I tried to crutch to the bathroom one time, but fainted instead, and I woke up to my whole family screaming at me to wake up.
  • I remember when my hair started to fall out, and when my mom shaved it.
  • I remember being in the hospital on Halloween, being disappointed I couldn't go trick or treating.
  • I remember my surgery, waking up at 4 am after spending the night in a hotel, on the 12th floor that looked out over the hospital where my life was about to be changed forever.
  • I remember my first PT, and the night we thought I had a brain tumor.
  • I remember going into the clinic for a blood check, and I had a temperature of 101.2, and I cried because I didn't want to be admitted into the hospital again.
  • I remember my last chemo, being ecstatic and scared all at the same time.
  • I remember the Celebration of Courage, walking around Centennial Park, celebrating my survival.
  • I remember my 90 day post-treatment scans being clear, declaring I am cancer FREE.
  • I just can't get over what I've been through. It seems impossible. God proved to me how much he loves me and how he has the ultimate plan for my life.
  • I want to thank all of you who have supported for me and prayed for me this year. I will be forever grateful.

It feels so good to say, "I am healthy."

 

1 year and 1 day after writing this ? THE CANCER WAS BACK!! This time it presented itself in the lungs. She had an operation to have the tumors removed on September 1, 2009. Follow-up scans came back clear and she was once again declared CANCER FREE!

Unfortunately once again, the joy was short lived.  In February 2010, just 5 months later they once again found tumors in her lungs that were cancer.  This time she would have to go through another 6 months of chemotherapy.

Her chemo treatments were extremely hard on Laura and at times almost unbearable. She did make it through and was declared CANCER FREE for the third time on July 17, 2010. In November Laura did have a kidney scare and was minutes away from going onto dialysis but was able to avoid that. 

Today Laura is back to living the life she deserves.  She is a student at Kennesaw State University and is enjoying and appreciating life each day.   We are so happy for her and her family that they can get back to a normal life and Laura can enjoy her college years.  No one deserves it more than she does.

 

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RASHEEDA'S STORY

 

Rasheeda is a 10 year old little girl that was diagnosed with stage III Rhabdomyosarcoma back in November 2010.  Her tumor presented in her elbow and fortunately recent scans showed the cancer is still localized to the elbow  area.  She has been receiving chemo treatments as well as radiation.

Back in June scans showed the tumor to be dead but had not shrunk as they had hoped and considered amputation of the arm.  Since then, they changed her chemo regime and thankfully it worked!! In September Pet Scans and MRI came back clean.  She continues chemo treatments and was scheduled for a biopsy this month.  Will keep you posted with her progress.

 

 

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 ANSLEY'S STORY

 

On July 2, 2010, Ansley at the tender age of 12  was diagnosed with an inoperable brain tumor called diffuse infiltrating Astrocytoma.  It is so rare that doctors told the family there had only been a dozed or so documented cases in the last 20 years. It's even rarer in children, with Ansley being just the "third or forth" diagnosed with the tumor. Ansley battled for 16 months before earning her angel wings on November 23, 2011.  

 

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DUSTIN'S STORY

Dustin is the forth child in his family, born in April 2011. He has siblings that are 4, 7 and 8. Upon his birth he was diagnosed with  Neuroblastoma. He has tumors in the adrenal glans, lungs and neck. He has been receiving chemo treatments for several month.  Unfortunately recent scans show the chemo treatments are not working.  His tumors have not grown or reduced in size.  I am not sure what future treatment plans are for Dustin but we will stay close to the family to make sure we do all we can to help them as they weather this storm.

 

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MCKENNA'S STORY

In her Mothers words:

 

In April 2011, McKenna?s daddy noticed that she had a knot in her abdomen area.  We kept an eye on it only for a few days, and then we took her to the pediatrician.  They immediately sent us to Scottish Rite (Children?s Healthcare of Atlanta) for tests.  Once there, she had an x-ray and ultrasound to confirm that she had a tumor.  The following day, she had a CT, which told us that it appears the tumor is contained in the liver and has not gone to other organs?which is a good thing.  After a liver biopsy, McKenna was diagnosed with having Stage 3 Hepatoblastoma.  This is a very rare cancer than affects approximately 100 children in the US each year, so the doctors do not know very much about it.  The treatment plan was for her to receive 3-4 rounds of chemo, have a liver transplant and then receive follow-up chemo to ?clean-up? anything that might still be lingering. 

Chemo was very hard on McKenna, including many major side effects of making her nauseous and not being able to hold anything down, getting mouth sores that were so bad she couldn?t swallow, low blood counts that made her very prone to infection, running several fevers, making several trips to the ER and severe bone pain when her counts would start to come back up towards the end of a chemo cycle.  And, the latest side effect that we are working on now of moderate hearing loss in both ears due to the Cysplatin (chemo drug).  In July 2011, McKenna received a liver transplant.  She did amazingly well considering what a major surgery she had.  And, following the liver transplant, she went through one more round of chemo.  At this point, McKenna is considered to be cancer free and will continue to get monthly labs to monitor her tumor marker and quarterly scans to monitor from a visual perspective.

McKenna loves to watch Barney, play outside when it's nice and especially loves to play with her older sister, Samantha.  Samantha and McKenna just recently became big sisters to Ryann and she is always giving her lots of hugs and kisses.  She also enjoys feeding our two dogs, Daisy and Dash, their food and treats.  McKenna has been AMAZING, to say the least, throughout this journey!!  She has been a trooper from the very beginning and continues to be as we, as a family, fight this horrible disease with her.  She is sure to bring a smile to anyone?s face!! 

 
 

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 TYLER'S STORY

 

 

Tyler is a four-year-old little guy that was diagnosed with Wilms Tumor Stage I back in February 2011.  He had surgery to remove the tumor which also included removal of his left kidney.

It was a very rough road for him. Each trip to the clinic was a struggle for his family since he had a great fear of needles and treatment. He has now finished treatments and is doing great except for some walking issues due to his chemo treatments.

Tyler loves trains and with the help of some of our special angels, he was able to get a VIP tour of the train museum in Norcross. 

Tyler finished treatments in July and is cancer free! Praise God!!


 

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 EDITH'S STORY 

Edith was 11 months old when she was diagnosed with Wilm?s tumor on her kidneys in April of this year. She went through chemo treatments and today is doing great! She is cancer free and per her dad doing great.

 

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  INDIA'S STORY            

 

India was originally diagnosed with stage IV Rhabdomyosarcoma back in March of 2007 at the tender age of 13. In February 2011 she relapsed which is when we met her. 

Since she had already received her maximum doses of chemo, the only thing they could offer her was oral chemo and unfortunately that did not work.  India lost her battle in July 2011. She was able to graduate high school though which I am sure was exciting for you as you can see in the attached picture.   

 

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 SCOTT'S STORY

This case hit really close to home.  When speaking to his dad, I felt like I was speaking to Steve about Amanda. Scott is an uprising senior and was a 3 sport athlete.  He was nationally ranked long snapper in football and was being recruited in baseball for his pitching ability and also played basketball.  He was diagnosed with Osteosarcoma in May 2011. 

Below is an article that details Scott?s battle.  I have had several conversations with Scott?s Dad but Scott refused to take anything from the foundation.  His only request was that we help another little guy that has the same cancer as him.  This is a very brave, classy young man.

  

Three-sport athlete Scott Shockley is not one to back down from competition. But now, after having been diagnosed earlier this year with bone cancer, the senior at the Walker School in Marietta faces his most imposing competitor.

Shockley has been busy his entire high school career playing football, baseball and basketball. This past year, he played part of basketball season with what was initially diagnosed as ?Runner?s Knee? and all of the baseball season this past spring with pain in his right knee. As it worsened, another diagnosis was warranted ? and it was a stunner. Shockley was diagnosed with osteosarcoma, a rare form of bone cancer.


Approximately 400 children and teens are diagnosed with osteosarcoma each year, according to Diane Vaughan, senior development officer for AFLAC Cancer Center at Children?s Healthcare of Atlanta where Shockley receives treatment.


A college prospect as a long snapper on kicks and the starting wide receiver for the Wolverine football team, Shockley, not surprising to those close to him, responded to the news with an attitude to overcome his disease. ?I don?t consider myself brave,? he said. ?It?s either you do what you have to or you don?t. If you don?t, then your chances of surviving aren?t very good. You have to do it. There?s no choice.?


Upon diagnosis, Shockley completed 10 weeks of successful chemotherapy treatment at AFLAC. In August, a world renowned orthopedic oncologist, Dr. David K. Monson, performed a rare operation on Shockley, removing the diseased bones (8 inches of the femur and an inch of the tibia) and replacing them with an endoprosthesis and cadaver bone. To date, Shockley has successfully completed 2 of 18 weeks of post-surgery chemotherapy at AFLAC while continuing to attend school.


Shockley said that staying positive is tantamount to winning his battle. ?Some days you get down and you get tired and you ask yourself why did this happen to me and not somebody else ? but then you think you?ll get through it. You?ll be fine and you?ll be a better person in the end. You?ve got to stay positive,? he said.


Shockley?s strong will and determination make him stand out to his coaches and peers. ?We tell our players all the time that failure is not getting knocked down, it?s the inability to get back up,? said Walker Assistant Athletic Director and Head Varsity Football Coach Ben Williamson.


?His experience athletically adds so much to that inner strength to handle adversity and ability to wake up every morning with a determination to fight, to stay positive. He understands he?s going to have bad days just like teams have bad days and players have bad days, but he has the ability to put that behind and wake up every morning knowing that he can make it through,? said Williamson who coached Shockley for four years.


?Scott has that relentlessness. He?s modeling every day what it is to be successful by showing, even if you knock me down today I?m going to get back up tomorrow and be even stronger,? Williamson added. ?As a coach, you wished you had 40 kids like (Scott) because you?d beat most of the teams on your schedule every week.?


?Scott is a leader for us,? stated head Walker Varsity Baseball Coach Mike Brady.


Considered one of the top four pitchers for the Walker baseball team by his sophomore year, Shockley earned Walker?s Pitcher of the Year award for the last two years. He played an important role when the team went to final four state playoffs in 2010 with a combined record for his sophomore and junior year of 9-2, 58 strikeouts, .320 batting average and 2.5 ERA. Described by Brady as ?a bulldog on the mound,? colleges have already inquired about Shockley as a prospective pitcher.


?If there?s anybody who can be that light for our guys to see somebody overcome adversity, we believe it?s Scott with his strong will power. He is that guy who will battle and nothing will keep him down,? Brady said.


?Scott?s telling me he wants to make it back. He?s said, ?Coach, I?m going do everything I can to get in shape to come back,? which really excites me,? Brady said.


For Shockley, his biggest challenge is everyday tasks. ?You take for granted getting up and walking downstairs or getting a bowl (of cereal) for breakfast. I can?t do that so it?s tough. I can?t do everyday tasks that normal people can do,? Shockley said.


Shockley expects to be in a wheelchair for 3 to 5 months and then transition to crutches. He takes physical therapy to help with muscle atrophy and to keep the knee bent to avoid scar tissue.


His basketball coach, Leigh Block, former assistant athletic director at Walker School, also described Shockley as ?a bulldog.? Now in his first year as athletic director at Lancaster Country Day in Lancaster, PA, Block said, ?Scott has always maintained a healthy sense of perspective. He knew that he had to sacrifice personal stats and glory to make our basketball team better. He knew that each coach had valued his contributions, and he was able to contribute to all three programs because he never lost sight of the importance of balancing his many commitments. He is even-keeled, and this healthy perspective is what will get him through this challenge.


?(Scott) faced his challenges as a student and an athlete head on and realistically; he?s doing the same thing now,? Block said.


Shockley attributes his healing to support of family and friends and his faith in God. ?I appreciate life for what it is. There?s a lot more out there than just school and sports and things like that. It?s given me a greater appreciation for life. Definitely,? said son of Terriann and Steve Shockley of Marietta.


Shockley said he might take a year off and travel before he goes to college. He is contemplating a career in sports medicine. After 10 years, he will be considered officially cured if there is no recurrence.


?You have to do what you have to do to get better. That?s what I keep telling myself. I?ll get through this and I?ll be fine and I?ll get better in the end,? Scott said.



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BROOK'S STORY

 In his mothers words:

Brooks was diagnosed with Ewing?s Sarcoma, a rare bone cancer that usually affects children, on June 22, 2011.  His summer started off very normal and fun; he made the All-Star team in his t-ball league.  At practice one afternoon in early June, his mother noticed a swollen bump on his jaw.  It seemed to just appear literally, overnight, and she thought that he?d been hit with a baseball.  Brooks had not been hit; therefore, a trip to the pediatrician was necessary the next day.  He was treated for over two weeks for what was thought to be an infection of the salivary gland.  The ?bump? continued to grow along with the concerns, and three weeks after noticing the ?bump? on his jaw, Brooks was having a CT scan.  A few hours after the CT scan, the family got a call that they will surely never forget - a call that would change their lives forever. 

After a biopsy and bone marrow aspiration the family learned that Brooks? tumor was localized, which means that it had not spread to other organs.  He began chemotherapy treatments immediately.  The tumor was extremely aggressive.  His treatments were every 14 days.  The treatments alternated between 2 day and 5 day hospital stays.  Scottish Rite has become their second home. 

On September 26, Brooks had surgery to remove the tumor.  The doctors removed a rib to replace the damaged bone in the jaw.  The tumor was removed with clear margins (no cancer cells were found in the bone or surrounding tissue)!  He will continue systemic chemotherapy treatments every 14 days until February.   

Brooks is a strong and courageous little boy who finds much comfort in his favorite Bible verse:  ?Be strong and courageous.  Do not be terrified or discouraged, for the Lord your God is with you wherever you go.?  Joshua 1:9   His attitude is contagious and inspiring.  He is fighting a battle that no child should ever have to fight.  He turned 7 years old on October 4th.  

    

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 TYLER'S STORY

 

 

In His Mothers Words:

In 2009 my son Tyler was 16 when he was diagnosed with stage IV Ewing's Sarcoma. He had been having knee pain for a few years and we thought it was from an old football injury. The pain would come and go then got worse. We went and visited 2 different orthopedic doctors who X-rayed and did MRIs of his back and knee. They felt he just needed physical therapy to build up his thigh muscles. He did physical therapy, we went to a chiropractor after little relief I finally went and got a 3rd opinion. I will say that I prayed this doctor would find out what was wrong with his knee. Well I got my prayers answered. We found out in about 5 minutes it was tumor on left femur. All he kept saying is that it was bad. The official diagnosis was Ewings Sarcoma. He then had total body scans and they found the cancer to be in his left Femur and 4 or small spots (the size of pencil erasers) on his lungs. We immediately started an aggressive treatment with at Egleston that was a National protocol for Ewings.  Treatment was to include chemo, surgery, and radiation.

By the end of 2009 Tyler had completed his chemo and radiation treatments and had knee manipulation surgery just before Christmas.  He was declared cancer free in January 2010 but had to continue treatments which included scar tissue removal on the knee and a partial hip replacement. All scans continued to come back clear until March 2011 when spots were found in his lungs. Yes, he had relapsed! He went through 4 more rounds of chemo and received a stem cell transplant this past July. He is now home recovering and awaiting scans.

 

In His Words:

Those were the facts, here is the reality:

While most of his friends were busy with high school events like prom, hanging out with friends, spring break, and planning for college, Tyler was enduring chemotherapy, radiation, mouth sores, and multiple limb salvage surgeries, not to mention drinking green smoothies with every possible vegetable I could put in them. He is now 18 and has started college and is still undergoing scans and rehabilitation. Unfortunately, because of his medical issues and our financial situation he still has to live at home and commute to a local community college. Although he hasn't complained, I know this is not the college path he had planned especially since he is still living at home. So much has been taken away from his youth and as a mother it truly breaks my heart. Tyler found out that with his limited mobility he could no longer play ball, or paint ball, ride four wheelers, or mountain bike. With one diagnosis all of that was taken away and we learned a lesson of a lifetime.... that life is not fair. Yet throughout his treatment he remains upbeat. He has spent hours on his pottery wheel and spent time playing his guitar and ukulele for the hospital staff and other children who are patients.

 

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SYDNEY'S STORY

 

 

Sydney is an 11 year old girl that loves to dance and cheer but her normal life as a happy healthy young girl came to a screeching halt this past August when she was diagnosed with a rare form of bone cancer calling Ewing Sarcoma. Her tumor was found on the T-5 vertebrae on her spinal cord. Thankfully, the surgeons were able to biopsy the tumor and feel it is localized.

Sydney is currently in the midst of her battle, having chemo treatments that make her extremely sick 3 weeks out of 4. In addition to not feeling well, she is having a very difficult time dealing with the diagnosis and the interruption this has caused in her life. Some days she just wants to be alone and sleep per her grandma but on good days, she is still trying to go to school and keep up with her school work. 

Sydney?s mom shared a story with me that upsets me greatly that I would like to share with you all.  First of all she sells real estate but had to take a job in the school cafeteria to make ends meet and to carry the insurance for the family.    She contacted the American Cancer Society to see if they could help them out in anyway, maybe assist with gas cards or something since they live an hour away from the hospital and have to make many trips back and forth.  THEY TOLD HER NO!! Said the family makes too much money!! Of course upon hearing this, we sent her funds to help out with the day to day expenses of getting back and forth to the hospital.  Sydney?s battle has just begun and we will continue to work closely with them and help ease some of the burdens caused by having a child with cancer.

I wanted to share with you the email I received from the family after Sydney received an I-Pad from us:

 I wanted to let you know that Sydney received her iPad yesterday!  She was so excited - we had just returned home from the AFLAC center (treatment all week), so it was a great surprise for her.  Although she could hardly keep her eyes open, as she had been dosed with 2 different nausea meds, she managed to admire it and then immediately asked me to download all the apps and music from her iPod.  She took it to clinic today and stayed busy most of the morning organizing her apps.  I have told her that it is not just for playing and that tomorrow we will use it to finish her science research report!! 

A simple thank you doesn't express our gratitude for all you have done.  We appreciate you and the work of your foundation.  As I stated during our phone conversations, I look forward to the day Sydney is healed and we can help make a difference for another child and family.  Thank you for being an inspiration!

 Sincerely,

 Dyron, Tammy and Sydney

This is just one example of how our foundation is   bringing SMILES to Children Battling Cancer.                    

 

 

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 GAVYN'S STORY

 

Gavyn is a sweet little 4 year old boy that was diagnosed with Wilms Tumor in August of 2011.  He started having pains in his stomach and upon examination, the doctors found that he had a tumor on his right kidney and it had ruptured. The pain was due to the rupture. Upon diagnosis, he spent a full month in the hospital where they removed his right kidney and started chemo and radiation treatments.  

Life has not been easy for this little guy since his diagnosis.  Chemo has been very hard on his little body but as you can see by the picture, he is taking it in stride. He is in the beginning of his battle but we are working very closely with this family to help them in any way we can.  

 

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ADDYSON'S STORY

Sweet little Addyson was not even a year old when she was diagnosed with Stage II Neuroblastoma. Her tumor is near her right ear had has spread to nearby lymph-nodes. She just finished her 3rd round of chemo.

Below is the background story in her mothers words:  

 

One weekend in June, Chris, Addyson and myself were enjoying a wonderful Saturday together. Addyson was playing in the floor when I noticed her right eye looked 'swollen'. I mentioned it to Chris and did not think anything else of it.

A few weeks passed and a friend pointed out to me that the same eye was not dialating. After much encouragement from family members, I called the pediatrician. That friday morning we made our way to Watkinsville. Our pediatrician did not seem too concerned, but sent her to see an ophthalmologist anyway.

August 18, 2011 she was diagnosed with Horner's Syndrome and referred to another ophthamologist at Scottish Rite. We met with the doctor and he requested a CT of her head, neck and chest. On September 1, 2011 we were informed that Addyson had a very large mass on her neck. Dr. Pollard told us that it was either enlarged lymph nodes or possibly a tumor. Although he was almost certian it just enlarged lymph nodes.

The next day him and ten other doctors had a meeting regarding Addyson's health. Two of the ten doctors needed to see her right away, the oncologist and the surgeon. I called and made appointments for the following week. Later that morning I received a call from the oncologist. She wanted to see Addyson right away. Of course, this scared me to death. So, I through myself together and we made our way to Atlanta.

We met with Dr. Wasiluski and she confirmed my worst fear. She believed very strongly that she had Neuroblastoma.She took blood and urine sample. All the blood work came back elevated, leading to Neuroblastoma.

This is the hardest thing Chris and I have ever been through. Cancer is the last thing in the world you are thinking about when you have a baby. We have both been trying to stay strong for the sake of our daughter. She is the happiest thing I've ever seen and during those moments when all I want to do is cry, I just grab my sweet baby and squeeze her little body. Just one little smile is all it takes for me to realize that crying is not an option.

 

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 WILLIAMS STORY

 

William is a 5 year old little guy that was diagnosed with Stage IV Rhabdomyosarcoma in September 2010. His tumor was discovered on his bottom. He endured 12 weeks of chemo, radiation and surgery to remove his tumor.  He has completed treatments in June and today is CANCER FREE!! He will continue to be scanned every 3 months to make sure all continues to be clear.


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NICK'S STORY

 

 In his mothers words:

Sunday, April 17th, 2011, Nick had a great day hanging by the pool and throwing the football with friends. He had been experiencing headaches off and on for a few months and more recently he was complaining a little about his vision. We were thinking that he might need glasses and his vision problems could be causing the headaches. On April 18th Nick experienced a fall while riding his rip-stick. He had a pretty large goose egg on the right side of his head. After school the next day, he was not feeling well. He was tired, nauseated and had a headache. Jennifer noticed his eyes were dilated and suspected a concussion and took him to urgent care where they confirmed the concussion and sent him for a CT. Upon receiving the CT results we were called back in and  were told the CT scan was not entirely normal. The Dr went on to explain that Nick has a tumor in the area of the brain known as the fourth ventricle. We were told it is about 4cm. He said we would need to see a neurologist the next day. On April 20th, the neurologist, confirmed the diagnosis and stated the upper ventricles were larger than normal due to the displacement of fluid. He stated the tumor may be a medulloblastoma or a ependymoma. He referred us to Egleston Hospital.

At Egleston an MRI was done and we found out that Nick had five tumors. Surgery was needed to remove the largest one, but surgical removal of the others was not recommended as it would be very invasive and risky, and they could be treated with radiation and chemo. Following the removal of the largest tumor Nick was unable to speak or make purposeful movements and was diagnosed with posterior fossa syndrome (PFS). About 20% of patients experience PFS after this procedure. Pathology results identified the tumors as medulloblastoma, a type of cancer that grows in or near the fluid spaces in the brain & spine.

Nick was transferred to inpatient rehab to get his speech and coordination back, but he did not make good progress initially and required surgery to install a shunt to drain fluid that was creating pressure in his brain. A port was then surgically installed to facilitate chemo and he was transferred to the inpatient oncology unit to begin radiation and chemo therapy while continuing physical and speech therapy.

Nick received radiation and chemo for six weeks. About 2 weeks post-radiation he developed pneumonia and surgery was required to remove infection and install a temporary chest tube for drainage. While recovering from this an MRI was done about 4 weeks post-radiation and it showed that all of the tumors responded well to the radiation and chemo and were gone.

While still recovering from the pneumonia, Nick was moved to inpatient rehab for more aggressive speech and physical therapy. On September 13th he was discharged after making amazing progress at inpatient rehab. His cancer treatment plan calls for six cycles (approximately 6 months, but potentially longer) of chemo which started September 19th, 2011. He will continue speech and physical therapy as much as possible throughout the 6 month chemo regimen.

 

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 PEYTON'S STORY

In his mothers words:

  Peyton was diagnosed on September 15, 2010 with a Diffuse Intrinsic Pontine Glioma. It started when Peyton's left eye crossed over night. I called and got the last same day appointment for him to be seen. His pediatrician then called and got us in to see an opthamologist the next day. He then ordered a MRI. I will never forget these words "Our worst fears have been confirmed.." The day after Peyton was diagnosed we flew with the clothes on our back to start treatment at Scottish Rite. Peyton WON his battle on 6/3/2011! The cancer is dead and Peyton is ALIVE & in peace with our Lord and Savior! No more suffering!

Yes Peyton won his battle but his family still grieves for him daily.  Please continue to keep this family in your prayers.  

 

 

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