More info coming soon

Savannah is the incredible 6 year old daughter of Pete and Andrea. She has an older brother Noah and a younger sister named Grace. Savannah was diagnosed with a cancerous brain tumor called Medulloblastoma on February 10, 2005. She had brain surgery to remove the tumor at Shand's Hospital at the University of Florida in Gainesville, FL. We then returned back to Jacksonville, FL and were under the care of Wolfson Children's Hospital and the Nemours Children's Clinic.

Savannah's tumor was quite large and nasty. Although the tumor had spread to another site within her brain, it had not spread anywhere else in her body. Through the grace of God, her residual tumor was wiped out with several months of intense chemotherapy. The aggressive surgery to remove the tumor had several side effects including left sided body weakness, left sided facial weakness, and a condition called cerebellar mutism. The mutism originally left Savannah unable to swallow, speak, and to have bouts of "irritability" that were not well controlled with any medications. She has since re-learned how to sit up, crawl, stand, speak, and walk!

She completed her bone marrow transplant in September, but a new tumor was found in her brain during a routine MRI December 5th, 2005. She received 31 radiation treatments that hopefully have cleansed her little body of all the cancer. Every day we thank God for all of you and all three of our kids. We are so blessed to have today...to see Savannah smile again.

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.

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!

More info soon

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.

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.

Rebecca was a normal 4 ˝ 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.

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

Jacklyn, Michael and the team

Marissa is a joyful 11 year old. She was diagnosed with a pilocytic astrocytoma in her hypothalamus and optic nerve when she was 7. After surgery, she did a 15 month chemo round. What a ride! After 8 weeks, she couldn't walk and needed braces and a wheel chair to get around. So as determined as she was, she started PT 4 days a week. She was walking on her own after 6 months. Once she finished chemo, after a few months she was still having some pain in her back. Off for more testing, where it was found the tumor had "disseminated" (spread) down her spine. So 62 more weeks of chemo. Her last dose was May 30th, 2007. As of her 8/07 scans, the spinal tumor is not evident and the primary tumor is stable. Since we have been told it will never go away, how she looks and feels is our best indicator and she is just doing awesome. She finished PT in June. She has grown 4 inches since June. She tried out and made the JV competition cheerleading team. She got to visit friends at camp, sew a quilt and go on all the roller coasters at Bush Gardens! She has had an amazing summer.

Read more about her adoption here (link needs to be added to story)

Alexandra (Lexie) is a nine year old swimmer and artist and honor roll student who is in fourth grade. Lexie was diagnosed with a grade two astrocytoma (brain tumor) when she was 3 and 1/2 months old. She underwent brain surgery at four months and then again at age five when her tumor suddenly doubled in size, causing her to lose most of her peripheral vision and develop third nerve palsy of her left eye. Lexie has completed two courses of chemotherapy, each for over a year, in an attempt to stabilize her tumor and prevent any further eye damage. She completed her most recent 16 months of chemotherapy at the end of August, and is being observed through MRI's every three months, and eye exams every six weeks. She is well aware that tumor progression will mean more chemotherapy, and is hopeful that she will have some quality time to enjoy life as a nine year old . She loves to go to camp, the beach, and do art projects !!! Throughout all the medical treatment, Lexie has maintained a strong belief in the power of positive thinking, and in having fun whenever possible !!! She is kind, and generous, and mature beyond her years. This summer she even taught herself how to ride a bike !!!!

Read more about her adoption here.