Carly * St. Joseph's Women's Lacrosse

ADOPTED!

St. Joseph's Women's Lacrosse
Adopted: February 2008
Adoption Story from CSTV Let me tell you a little something about my daughter Carly. Carly has been a fighter since conception and has battled her way through many events. Throughout my pregnancy, Carly insisted on coming early and although we fought very hard to keep her at bay, Carly was born 7 week earlier than expected. Fortunately she had no effects from the early birth except being placed on a heart monitor for six months. So I new from then that she was someone very special not just because she was my daughter but because she was a fighter and in what was to come in her life the best position to be in. Carly was a typical little girl growing up. She loved to sing and dance. During the summer of 2003 at the age of 8 Carly started to experience headaches. With a family history of migraines that was what it was chalked up to be. However, they become more persistent and after several weeks and many tests and no explanations I decided to go to the ER and that was the beginning of her entire nightmare! Within three days Carly was airlifted to the Children’s Hospital of Philadelphia where she would undergo brain surgery for placement of a shunt to help control the fluid that was building up around her brain. With still no explanation as to what was causing them we left he hospital 10 days later. They knew Carly has 12 lesions in both her head and spine but none were operable and were not indicative of tumors. We could only wait. Several weeks later an MRI was done and another lesion had grown where it could be biopsied. This was when we found out that Carly had what is known as Primitive Nuero-Ectodermal Tumors (P.N.E.T.) of the head and spine. We were told of a level two study that was being done that may help but that hope of survival was not good. Knowing that Carly was a fighter, we took that chance and have never regretted it since. Carly underwent 5 rounds of very harsh chemotherapy, followed by a stem cell transplant, followed by 7 weeks of radiation therapy. All and all she spent approximately nine months in the hospital and missed all of third grade. Fortunately at the end of this hospital journey in July of 2004, Carly’s tumors were all gone and the prognosis was looking great! It has been 3 ½ years since her last treatment and she has had no reoccurrence. Carly is still closely monitored every 6 months and will have some lasting effects from treatment including some hearing loss but she has not let that keep her down. In fact Carly was just recently inducted into the Junior National Honor Society. This whole process has changed our family and Carly in so many ways. Carly is so dedicated to helping other kids now and does what she can to promote that. Carly is very active in Girl Scouting and loves to hold events to raise money. She recently participated in the “Freezin for a Reason” polar plunge for Camp Sunshine and looks forward to attending Camp Sunshine this year as she has done in the past. We have met many new people and friends along this journey and thank God everyday for what we have and who we have met along the way. Now you know a little more about my girl and why we love her so much. Would we have given up this journey in a heart beat, of course we would have, will we ever give up the fight, never!

Inspirational Video from the Sacred Heart Gazelles Lax

This video, put together by the Sacred Heart Gazelles Lacrosse team (a "3 peated" Michigan High School State Champs 2007), is incredible and is reflective of true "Champions" these high school student athletes are off the field.[googlevideo:http://video.google.com/videoplay?docid=-6182740717856113464&hl=en]
↑ ↑ ↑ ↑ ↑ ↑ ↑ click this button to play the video.

Ashley * Columbia U. Women's Soccer

ADOPTED!

Columbia University Women's Soccer
Adopted: February 2008 At 3 months old I learned that Ashley had a disorder known as Neurofibromatosis Type 1. At the age of 2 Ashley was diagnosed with an inoperable tumor on the optic nerve and in the chiasm area of the brain attached to her pituitary and hypothalamus glands. Ashley underwent 60 weeks of chemotherapy treatment to stabilize her tumor, and thankfully today it has remained stable. Although Ashley’s tumor is stabile she battles various medical issues. Ashley has scoliosis, balance and coordination issues, depth perception issues, visual loss, early onset of puberty due to her tumor and cardiac issues. Her disease has caused small tumors to grow on her legs, arms and back, these tumors can be painful and irritating to Ashley. Her disease has no rhyme or reason to it. Tumors can pop up anywhere at any time, so it is a constant waiting game to see what problem will occur next. Ashley has eight different doctors that she visits every 3 to 4 months and MRI’s with sedation at least 2 times a year. Despite everything she has gone threw this amazing little spirit continues to brighten the world and especially mine. When you look at Ashley she looks just like every other kid you would never know that by the time she turned 6, she had buried friends, had and continues to survive her brain tumor and the effects of it, but most of all that none of this has broken her little spirit to love life no matter what comes her way.

Luke * Gwynedd-Mercy College Men's Soccer

Adopted!

Gwynedd-Mercy College Men's Soccer
Adopted: August 2008 An abridged story by Mary-Fran Bontempo

Luke Ronco was adopted through FOJ by the Gwynedd-Mercy Men’s Soccer team. In late November, Luke got some lousy news.  His tumor is growing again.  Needless to say, the coach and the team were devastated, but determined to find a way to cheer their teammate.  Then, the plan.  

With Luke’s 10th birthday coming up on December 10th, the coach, team and the extended Gwynedd Mercy family leaped into action.  The goal?  Make this the best birthday Luke had ever had.  Utilizing the internet, the news about Luke and his PEZ collection spread through multiple states, resulting in boxes and boxes of PEZ being donated for a major birthday surprise.

When all was said and done, over 500 PEZ collectibles were assembled in baskets and display cases.  Coach Bontempo called the Ronco family and invited them all to Gwynedd Mercy College for the school’s first Mercy Madness Rally—a celebration of basketball and fall sports, including soccer.  Luke would be introduced at the rally, and share dinner and some cake with his teammates.  At least that was what Coach told the Roncos.  

Once the players were called onto the basketball court, Coach Bontempo introduced Luke Ronco, the newest Griffin, to the crowded gym.  Students, faculty and members of all the teams present cheered while Luke answered questions posed to him by the coach about his PEZ obsession while his soccer teammates looked on.  

Meanwhile, behind the human screen of the very tall basketball team, the women’s soccer team helped assemble a mountain of baskets and gifts loaded down with PEZ candies, a cake in the center of the display.

Finally, Coach Bontempo informed Luke that somehow, the team had gotten hold of 500 PEZ dispensers and had no idea of what to do with them.  “What about me?” Luke asked.  “Well, I understand you’ve never dunked a basketball, have you?” coach asked.  “No, I haven’t,” Luke said, unsure of what was coming next.  “I’ll tell you what.  If you can dunk a shot, maybe you can have those PEZ,” coach said.  

Luke, well shy of dunking height, looked nervous.  “We’ll give you a little help,” coach said, pointing down the court to the two basketball players who had stepped up under the basket.  Luke, all smiles, ran through the gauntlet of his soccer team, high fiving into the waiting arms of two basketball players who hoisted him high.  He dunked that ball.

As the two young men lowered Luke to the ground, the remaining teams parted and Luke’s jaw dropped as his eyes came to rest on his enormous birthday pile of PEZ.  The entire gym erupted into applause and a spontaneous singing of happy birthday to one deliriously happy little boy surrounded by a deliriously happy soccer team.  Then, a victory lap around the gym, again to thunderous cheers and applause.  Finally when the gym festivities were concluded, we all, the entire Gwynedd Mercy family, had cake.  

Winning is a big deal, but that night, no scoreboard told the story.  The Gwynedd Mercy Men’s Soccer Team had a tough season on the field, and teammate Luke Ronco has some big challenges ahead.  But for one amazing night, Luke and his team were all champions. 

Zack * St. Bonaventure Men's Swimming

Adopted!

St. Bonaventure Men's Swim Team
Adopted: January 2008 Zachary (Zack) is a typical nine-year-old boy. He loves transformers, star wars, legos, and video games. He was diagnosed with juvenile pilocytic astocytoma in the celebellum and thalamic regions at the age of four. He underwent surgery fours days after doctors discovered a massive four-inch mass which left him unable to use his right side. After a month in the hospital, he regained limited use of his right side. He still wears leg and arm braces. During the past four years he has undergone intensive OT/PT/Speech. Zack has learned to compensate very well with his left side, which has caused problems with atrophy in his right arm and hand. He does constraint-induced therapy (casting the good arm) and botox injections to help with his right-sided hemiparesis. The tumor and cystic component have returned, so Zack is on the wait and watch phase of his journey. He loves riding his recumbent three-wheel bike. Zack has participated in sports, but they’re rather difficult. He tries to keep up with his peers and gives it all. He has a very positive attitude and outlook on life.

We Can Make a Difference

This video highlights the mission of the Friends of Jaclyn Foundation. It explains the story of FOJ, how it became a foundation, and why it is so important to become involved. Enjoy!

Drew * Washington & Lee Men's LAX

ADOPTED!

Washington and Lee Men's Lacrosse Team
Adopted: March 2008 At 4 years old Drew was diagnosed with a highly aggressive, adult brain tumor, rarely seen in children. The name of this beast is a Glioblastoma Multiforme. We were told to go home and enjoy our time of 5 – 12 months. I am happy to say it has been 4 years and Drew is doing well. Drew is a very loving and fun child. He has never met a stranger. Drew loves everyone he meets. He is known to shower everyone with his love, hugs and kisses. On April 22, 2004, Drew was diagnosed with brain cancer. On the 26th he had a 2 ½ hour surgery to remove 98% of the tumor. The surgery went well and Drew recovered quickly. We noticed his right arm and leg were weak and he had less movement control. He would drag his right leg and was no longer able to write with his right hand. The limbs got better in time, but not fully controllable. Drew had to learn how to use his left hand with his right hand as assistance.

Rebecca * La Salle Women's Lacrosse

ADOPTED!

La Salle Women's Lacrosse
Adopted: January 2008 Rebecca was a normal 4 ½ year old sweet little girl until April of 2004 when she was diagnosed with medullablastoma. The doctors told us that the tumors were inoperatable. The tumor in her head was too close to the brain and if they did operate, she would have been brain dead. She also has a tumor at the bottom of her spine and if they operated on that one, she would have been paralyzed. So, Rebecca had no surgery for the tumors. Rebecca went through six weeks of radiation, then a year of chemotherapy. Her tumors have shrunk, so her treatments did work. Also, Rebecca is bound to a wheelchair because of the tumor on the bottom of her spine. She cannot walk, but with physical therapy, she can schooch all around on the floor. Today, Rebecca is doing as well as she can. She is in second grade and goes to school all day. She has good days and bad days, but that is to be expected. Today, Rebecca is a tough little eight-year-old girl. She has hopes and dreams. Me as her mother, I hope that the Lord will let her have her hopes and dreams. She is doing well right now.

Kat * Southern Miss Volleyball

Adopted!

Southern Miss Volleyball
Adopted: August 2008 Katherine Ann Barnard, usually known as Kat, is twelve years old and in the sixth grade. She is smart, beautiful and the joy of her family's life. I will describe her using her own words from a recent school project. "Katherine. Happy, athletic, hazel eyes, blonde hair, softball, dogs, kittens, dirt bikes, internet and goofy." Katherine is a tough kid. She has been a softball player since she was 4 years old. She is never sick. Never. On Friday October 26, 2007, she complained of a headache and then began vomiting. I immediately called her pediatrician. The short version of the story is that the pediatrician, who I credit with saving her life, identified something in her physical exam. We were sent to the hospital for further tests and a brain tumor was discovered. Since that day, we have endured a stay in pediatric ICU, a craniotomy to remove the mass, return home, then seizures and an ambulance ride back to the hospital to address that issue. The physicians sent her tissue sample to Johns Hopkins for evaluation. We now have a diagnosis. Katherine has High Grade Glioma. The neurosurgeon has removed the largest tumor but there is still a second tumor that is in her midbrain and is inoperable. She then completed six weeks of radiation while having chemotherapy. Following the radiation she began a higher strength chemotherapy protocol. It was during this chemotherapy that she developed the hepatatic adenoma, a benign mass on her liver the size of a large grapefruit or small cantelope. The liver mass developed in February of 2008, while she was in the midst of chemotherapy. The mass was so large that it completely obstructed her stomach and also pressed on her pancreas causing acute pancreatitis. She was not able to eat food from February until June. When her blood counts recovered enough for her to have surgery, we traveled to Emory Children's Hospital at Egleston in Atlanta for a resection of the liver mass. She was hospitalized for over six weeks at that time. Following the liver mass resection she developed pneumonia in both lungs and required a ventilator for a week. She continued to have difficulties and developed a large pressure sore on her ankle which slowed her recovery further. She was discharged from the hospital in Atlanta on July 4, 2008. Since then she has been at home, recovering her strength and beginning to eat again. We travel back to Atlanta for another MRI on August 27, 2008. You can read more about Team Kat on her website at www.caringbridge.org/visit/katherinebarnard

Alli * Georgetown Women's Lacrosse

ADOPTED!

Georgetown Women's Lacrosse
Adopted: February 2008 Allison is a sixteen year old survivor who was diagnosed with a brain tumor at age nine. Allison’s tumor is a ganglioglioma. Gangliogliomas are mixed cell tumors containing both neural ganglionic cells and neural glial cell components. (Connective tissue and gray matter.) Although these tumors are rare, their prognosis is generally very good. Allison’s ten year survival rate is 90%. Dr. Sutton at Children’s Hospital in Philadelphia thought she would be back to school within three weeks. We were informed after the surgery that Allison was “devastated by surgery”. It happens to some patients and the doctors don’t know why, or who will be affected. Sometimes after surgery the physicians hold their breath fearing the worst and the patient is fine. Other times, all looks well and the patient has severe deficits. Allison was still in the hospital three weeks after her surgery. She couldn’t walk, talk, sit up or eat without assistance. Her IQ dropped to a 46. Allison was discharged as an outpatient to The John Heinz Institute of Rehab. Medicine. There she had speech and language, physical therapy, and occupational therapy, five days a week for four months. Because of her physical and cognitive disabilities Allison had to transfer from a Catholic school to the local public school. That fall Allison started back to school with an aide by her side, but no friends in sight. It was very difficult. Allison continues with her therapy twice a week after school. The little girl who couldn’t walk joined the middle school cross country team. She was quite an inspiration to her coach, team mates, and other runners. She is a great swimmer and she loves to sing and dance. After taking a year off, Allison returned to school this year with a new independence and without her aide. It has been a long, difficult journey, but we have all grown through this experience. We tend to cry harder, laugh louder, and enjoy every day to the fullest. Our family motto is “Life is short, you have to be Happy”. Allison lives in Northeastern PA with her parents Paul and Molly, her brother Matthew and Athena her black lab.

Khloee * Duquesne Women's Lacrosse

Duquesne University Women's Lacrosse
Adopted: January 2009 Bio coming soon.

CJ * Wayne State Baseball

Adopted!

Wayne State University Men's Baseball
Adopted: April 2009 Bio coming soon.

Ainsley * New Trier Girls Lacrosse

Adopted!

New Trier High School Girls Lacrosse
Adopted: April 2008 Ainsley is a spirited and courageous 7 year old who is so caring and determined. After our team attended the Friends of Jaclyn Challenge banquet at the Hotel Orrington in Evanston, prior to the Northwestern vs. Georgetown game, they were inspired to adopt a girl to be part of our own team. Ann Elliott, our assistant coach and Northwestern graduate, was able to connect our program with Ainsley, since her mom is an academic adviser at Northwestern. Our team met Ainsley and her family right before our "Fight Kids Cancer" game against our conference rival, Evanston Township High School on April 22. The girls immediately fell in love with her. The team presented her with a jersey and soon she had blue and green painted on her face and was on the sidelines as part of the team. Ainsley ran with the team onto the field for starting line ups, lined up for the National Anthem and then cheered on the team during the game. But the love and support didn't end there, Ainsley came to team dinners, playoff games, our team banquet and even to the birthday party for my 7 year old daughter. Her mom even let her stay out way past her bedtime when she cheered our team on winning the state championship. It has been awesome having Ainsley and her younger brother Cully around our team, as they have taught our players the importance of cherishing each day, showing love for others and how to deal with adversity. This is from Carly Tschantz, an All-American on our team who sums up what Ainsley means to our team. "Since we met you Ainsley, I've always carried the thought of you one my shoulder like a guardian angel. On the field, I never took my 'Ainsley' bracelet off even when we were suppose to; instead, I put a sweatband over it so you would always be with me on and off the field. You inspired me through so many tough times, and when ever I saw you at games, Carbos, or the banquet everything else didn't matter. You not only affected this whole team and helped us win a state championship, you taught me how to live life to its fullest. You're the little sister I always wanted, and this summer we will be dancing to a lot of Hannah Montana; I promise." This is from Ginny Gummersall, an All-American who will continue playing at Boston College next year on how much Ainsley has inspired our team. "The day our team met Ainsley, our eyes were opened and we all learned the true meaning of "unbreakable spirit." Although she is just a tiny little girl, she has a giant sized heart and a soul that is both joyous and wise. How could a little girl so bubbly and full of life be dealing with cancer? And if she can do what she does, most definitely the rest of us can deal with ANYTHING. For Ainsley, and because of Ainsley, I aspire to celebrate every single day for what it is and never take even one small special moment for granted. In this way, Ainsley is our true angel and we dedicate this magical season to her."

Michael * Amherst Men's Soccer

Adopted!

The Lord Jeffs, Amherst College's men's soccer team has adopted Michael as their honorary team member. Michael is a smiley, kind and cheerful 8 year old 1st grader. Michael was diagnosed on April 8 2004 with a brain tumor, ATRT-Atypical Teratoid/Rhabdoid Tumor when he was just 4 years old. Michael had brain surgery the day we brought him in to the ER, he had an external drain put in his head to stop the pressure of fluid, then he had a port-a-cath put into his chest and then a shunt, which is an internal drain to replace the external one. He then had 12 intensive weeks of Chemotherapy and a 10 hour brain surgery to remove the tumor. After ten agonizing hours they took the tumor out. He then started 6 weeks of proton beam radiation and another 6 months of maintenance chemo. He ended treatment on January 25 2005. He started PT/OT, he did this for 2 years. Michael has grown 1 and ½ inches this summer! This makes us very happy! Due to treatment he will have a bit of trouble growing. Michael continues to love life and teaches us all lessons, like how to be patient and to stop and take a deep breath when frustration gets us and that its not that bad. He always has a great attitude and outlook on life. He is full of life and joy. He loves to camp and be with his family. He Loves to watch the New England Patriots with his dad! He loves to play with his dog Luna and hang out with his brothers and help mom cook. LOVES school and loves to learn. In spite of everything that has happened to Michael he is a strong little person with a whole lot of love, joy, hope, and peace in his heart and in his being and he is always ready to try something new. Michael loves life! Check out Michael's Photo Album 

Katie * Richmond Women's Lacrosse

Adpoted!

Richmond Women's Lacrosse
Adopted: May 2008 Katie was born in Richmond, VA, on October 25th, 2000. Her first year was typical but just after her first birthday Katie developed nystagmus -- the horizontal movement of her eyes. Since she just had her 1 year immunizations, we thought she was having a reaction to the shots. The next day the eye movement was still pronounced and a phone call to the pediatrician did nothing to ease our minds. When told about Katie's eyes the next question was "Is Katie responsive?" An MRI the following day revealed a walnut sized mass in the middle of Katie's brain along her optic nerves. She had a craniotomy a week after the MRI to try to remove the tumor. Very little was removed. Her follow up MRI three months later showed the tumor to be larger than at diagnosis so chemotherapy began. Because at the time there were no pediatric neuro-oncologists locally we traveled 2½ hours each way every 4 weeks for Katie to undergo a new chemotherapy protocol. She finished that initial treatment 21 months after it began at the age of 3. For the next 2 years Katie was free of treatments. However, just before her 5th birthday, Katie's tumor required another intervention. This time the chemotherapy was a pill that she could take at home. That didn't work and 6 months after beginning she started a weekly chemotherapy at our local hospital which now had a pediatric neuro-oncologist on staff. Another 6 months of treatment failed to stop the tumor and cyst and another craniotomy was scheduled in NYC. That surgery was a huge success with over 70% of the tumor being removed. However, the success was short lived when the tumor and cyst returned within 4 months of the surgery. In April of 2007, Katie began IMRT at a facility 13 hours from home. Our entire family moved for the treatment to be with her. She came through the treatment well and her first MRI showed a significant decrease in the tumor and cyst. The MRIs since have proven to be a bit of a roller coaster with ups and downs. She also had an aneurysm that was found in November and repaired at yet another hospital in March of 2008. She is a happy and enthusiastic 2nd grader that doesn't let all of the doctor's visits and appointments get to her. She has limited vision in her right eye and a large field cut in her left but still excels at school and art classes. She has a younger sister, Kelly, who she loves to spend time with.

Levi * Virgina tech Men's Baseball

Adopted!

Virgina tech Men's Baseball
Adopted: May 2008 Levi Mayo was born on February 29, 2000 - a Leap Year baby, special from the day he was born. He has a big brother Ethan, a little sister Kayleigh and a stepbrother Gus. In August 2004, Levi began to complain about headaches. I took him to his doctor and he diagnosed Levi with a sinus infection and prescribed an antibiotic. When he kept complaining, we returned again and got the same diagnosis. Later that week, Levi woke up with a stiff neck. His dad took him back to the same doctor who said he slept on it wrong and told us to force him to move his head. The next week, Levi slept for 18 hours. The next morning, I woke and saw him asleep beside me. I knew there was something really wrong with my child and when I went back to the doctor's office this time, I refused to leave until they found what it was. After countless blood tests and a CT scan, I had my answer - a mass in his brain. Levi was diagnosed at age 4 1/2 with medulloblastoma, a highly malignant brain tumor. Levi was considered high risk because his cancer had spread to a small area on his spinal cord. He had surgery on 9/2/04 to remove the tumor and when he woke from surgery, he was unable to do anything but scream, cry and move his right toes. This condition is posterior fossa syndrome/cerebellar mutism. One week later, Levi had a VP shunt placed in his brain to relieve pressure from spinal fluid, which was building up in his brain. The pressure from this fluid actually caused his incision in the back on his head to burst open, then infection set in. He was in the hospital for four weeks after his initial surgery - two weeks in PICU and two weeks in a regular room. Levi then had 6 weeks of radiation treatments to his brain and spine. He was sedated every day for these treatments. The radiation was so strong that even though the beam entered from the back, it burned the front on his face and all the way down his chest. He peeled like he had received a bad sunburn. He also started chemotherapy for seven months. During this treatment, Levi became very ill. He weighed only 26 lbs at one point. In May 2005, he went into septic shock and almost died. I made the decision at that point to stop one of his chemo drugs before it killed him. His wonderful oncologists researched and found a different chemo that Levi took until 7/23/05. Levi relearned to swallow, talk, hold his head up - everything. When he came out of surgery, he couldn't even focus both eyes in the same direction. While he couldn't speak, he learned sign language, which he still uses to this day (I love you, hungry, thirsty). We didn't hear his beautiful voice from 9/2/04 until 12/21/04 when he said his first work "Mama!". You can bet I cried more hearing the "second" first time, the the actual first time! Levi's journey is far from over. His thyroid no longer work due to damage from radiation. Radiation also caused learning delays for him and he will probably need to take growth hormone replacement shots in the future. He is eight years old, but is the size of the average five year old. Levi is amazing. Today he can run, swim, stand on his head, fight with his little sister, play Wii... He loves the Beatles, Green Day and Queen. He says his song about cancer is Rodney Atkins "When You're Going Through Hell" - and yes, he came up with that on his own after listening to it one day. He takes gymnastics every week and even though his balance is not good enough for the balance beam, he tries everything. He is independent, strong, happy, funny, loving - and cancer free, Praise God. We know that every day is a gift. Levi has a special quality about him that draws people to him. When you look into his eyes, love and warmth just radiate from him. You know that whatever you are facing cannot put a candle to what this child has been through. And if he can embrace life with such joy and open love, we as adults should do the same with no questions asked.

Wildcats Banquet Video

A wonderful video produced by the Northwestern Wildcats LAX. It talks about why they adopted Jaclyn, the flap they created when they wore Jaclyn-Designed flip flops when they visited the President George Bush at the White House. [youtube:http://www.youtube.com/watch?v=J0FwuvZNVbk]
↑ ↑ ↑ ↑ ↑ ↑ ↑ click this button to play the video.