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 2˝ 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.
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
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 ˝ 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.
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 ˝ 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
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.
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.
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.
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 ˝ 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!
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.
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."
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!
Pete Trabucco wrote "America's Top Roller Coasters and Amusement Parks", which is "a guide for those who ride them and tips for those who fear them." He is generously donating all of the proceeds from his book to FOJ. He has created an ad that will appear in two magazines: In-flight-USA (circulation of 60,000 nationwide) and in Roller Coaster Magazine (15,000 nationwide) this month. To learn more about the book or to purchase a copy, click here.
Congratulations Amherst College for winning the National Association of Division III Athletic Administrators/Jostens Community Service Award for hosting the 2008/09 FOJ Race/Walk. This is a very high honor, and we are proud of Amherst for everything they have done and continue to do for FOJ. Click here to read the article.
Pete Thamel of the New York Times wrote an excellent article called, "Four Time Champions, And All Jaclyn's Big Sisters", featuring Jaclyn, the Northwestern Women's lacrosse team, and the Friends of Jaclyn Foundation. The article appeared both online and on the front page of the Saturday Sports section on Saturday, May 16th. There were two online articles that can be seen by following the two links below:
The Friends of Jaclyn Foundation is an IRS 501(c)(3) charitable organization. All donations are fully tax-deductible. FOJ's exempt number is 20-8326822 and can be confirmed on the IRS website
