Meet the Kids
Table of Contents
Biographies
“Fun is good.” That was our mantra as my brave little daughter fought an incurable type of childhood cancer,
an intrinsic brain stem glioma. It’s what we would say any time we could snatch a moment of fun, a smile, any
distraction or relief from the pain and fear that surrounded us. It’s what kept us focused on finding fun no
matter how hard the day was, no matter what body part stopped working, no matter how many “pokes” she
had to face. We just kept finding something fun – even if it was only a favorite video, or making lemonade, or
painting fingernails, or snuggling.
Little Anjuli Jacobs was almost 4 years old when she was diagnosed seemingly out of the blue with this most deadly of all cancers. She had been frequently ill for about 6 months prior and had grown pale and progressively weaker. Then she began falling a lot, her eyes began crossing, her speech slurred and then, she began vomiting in the mornings. I took her to doctors and ophthalmologists who all had different ideas and diagnoses about what was wrong, but all missed the real problem. It wasn’t until I took her to the emergency room of our local children’s hospital that they were able to figure it out – my daughter likely had a brain tumor. An MRI the next day confirmed it – a huge, diffuse, inoperable, cancerous tumor filling up her brain stem.
Soon after came word from the doctors that there was no cure, that Anjuli was terminal and that our only hope was clinical trials. We tried one. It failed. We tried to buy her time with radiation therapy. It failed. I fought for and won approval from both our hospital’s internal review board and the Federal Food and Drug Administration to try a brand new chemotherapy under “Compassionate Use.” It too failed.
And throughout all of it, every surgery, every procedure, every round of chemo and every hour spent vomiting, Anjuli never complained. She battled with a spirit so wise and so strong that everyone around her was inspired. Her family and friends rallied and provided food, financial support, gifts and cards of every kind and every other kind of help imaginable. My co-workers donated their time off to provide me with paychecks for several months so that we would not lose our home while I stayed by Anjuli’s side every minute. Our church then covered the payments after the paychecks ran out and the bank account was drained. Our entire little town of Sumner, WA stood up and provided food and more cards and gifts. Anjuli’s grandparents fulfilled one of Anjuli’s dreams to ride in a pony-driven sleigh. Make-a-Wish fulfilled her other big dream of meeting Cinderella in person and sent her to Disneyland to do it, even though at the time Anjuli was very near the end of her short life and in critical condition, requiring continuous oxygen and unable to move anything but her left arm. But we kept focused on finding fun.
Bravery such as Anjuli’s cannot be put into words. But it can be honored and I have strived since her death in June 2001 to do so by fighting childhood cancer in any way I can. As her mommy I was supposed to protect her, but there was no way to protect her from brain stem cancer. All I can do now is honor her fight and her spirit and refuse to let her suffering and death be in vain.
Little Anjuli Jacobs was almost 4 years old when she was diagnosed seemingly out of the blue with this most deadly of all cancers. She had been frequently ill for about 6 months prior and had grown pale and progressively weaker. Then she began falling a lot, her eyes began crossing, her speech slurred and then, she began vomiting in the mornings. I took her to doctors and ophthalmologists who all had different ideas and diagnoses about what was wrong, but all missed the real problem. It wasn’t until I took her to the emergency room of our local children’s hospital that they were able to figure it out – my daughter likely had a brain tumor. An MRI the next day confirmed it – a huge, diffuse, inoperable, cancerous tumor filling up her brain stem.
Soon after came word from the doctors that there was no cure, that Anjuli was terminal and that our only hope was clinical trials. We tried one. It failed. We tried to buy her time with radiation therapy. It failed. I fought for and won approval from both our hospital’s internal review board and the Federal Food and Drug Administration to try a brand new chemotherapy under “Compassionate Use.” It too failed.
And throughout all of it, every surgery, every procedure, every round of chemo and every hour spent vomiting, Anjuli never complained. She battled with a spirit so wise and so strong that everyone around her was inspired. Her family and friends rallied and provided food, financial support, gifts and cards of every kind and every other kind of help imaginable. My co-workers donated their time off to provide me with paychecks for several months so that we would not lose our home while I stayed by Anjuli’s side every minute. Our church then covered the payments after the paychecks ran out and the bank account was drained. Our entire little town of Sumner, WA stood up and provided food and more cards and gifts. Anjuli’s grandparents fulfilled one of Anjuli’s dreams to ride in a pony-driven sleigh. Make-a-Wish fulfilled her other big dream of meeting Cinderella in person and sent her to Disneyland to do it, even though at the time Anjuli was very near the end of her short life and in critical condition, requiring continuous oxygen and unable to move anything but her left arm. But we kept focused on finding fun.
Bravery such as Anjuli’s cannot be put into words. But it can be honored and I have strived since her death in June 2001 to do so by fighting childhood cancer in any way I can. As her mommy I was supposed to protect her, but there was no way to protect her from brain stem cancer. All I can do now is honor her fight and her spirit and refuse to let her suffering and death be in vain.
Arielle and her identical twin sister Alanna were born October 2, 1991. We felt so blessed in having healthy twins that weighed over 7lbs at birth. Our life was turned upside down April 9, 1997, when Arielle was diagnosed with Acute Lymphoblastic Leukemia. Because they are identical twins, Alanna was tested too, and thank God, given a clean bill of health. She remains healthy and is no longer considered at risk for ALL. Arielle remained in remission for 3 years and 3 months. During that time, she was quite healthy and able to participate in Brownies, tennis, gymnastics, and dance. She loved her cats the most, and wanted to open a shelter for homeless kittys when she grew up. Fishing in the Sierra Nevada Mountains and arts and crafts were other favorite past-times. We were heartbroken when she relapsed July 17, 2000, at the age of 8. This time, Arielle did not go into remission easily. We were given the option of letting her die. But she was still strong and loving life- we couldn't give up on her and she wan ted to continue the fight. Finally, we found an especially strong combination of chemo drugs which put her back into remission and eligible for Bone Marrow Transplant. Arielle underwent BMT March 7, 2001. She was discharged the middle of May and by June 8, 2001, we found that the cancer was back the transplant had no effect on the leukemia. We lost our precious girl July 11, 2001.
Ashton was diagnosed with T-cell Acute Lymphocytic Leukemia at the age of 2 1/2. The Leukemia was so rampant in his little body that we were told that Ashton most likely would not live to see Thanksgiving, just 5 days away. However, Ashton pulled through those first rough weeks and went on to successfully complete 2+ years of treatment that included high-dose chemotherapy and cranial radiation. Ashton loves school, his friends, his Greyhound dog, Sara, and (last but not least), his Mom and Dad. He hopes to be an "inventor or an artist or both" when he grows up. Ashton and his parents support a number of childhood cancer organizations by participating in fundraising opportunities and speaking at various engagements throughout the year to raise awareness and money in the hopes of finding a cure for all childhood cancers.
Bobby was diagnosed with acute lymphoblastic leukemia in 1987 at the age of 8. The cancer recurred in his central nervous system, after three years of continuous chemotherapy. More aggressive chemotherapy and cranial and spinal radiation yielded only a two-year remission, at the end of which, he relapsed for a second time. Bobby had an allogeneic bone marrow transplant on September 30, 1993 with marrow donated from his then four year old brother Craig, a perfect HLA donor match. Bobby is strong and healthy and now married! In appreciation for all that he received in the way of support and services during his years of illness, Bobby formed a nonprofit organization with his family, and bicycled across America twice to visit with children currently battling cancer and raise funds for childhood cancer research and family support programs.
Brian was diagnosed with Acute Lymphoblastic Leukemia on December 3, 1999, just days before his 4th birthday. Brian is a remarkable son and a wonderful student! Brian is a great "little" and "big" brother to his sisters, Alicia and Carina, and counts his family among his biggest fans. He had made many new "chemo friends" that helped him deal with the mental and physical challenges he had to endure due to his more than 3 year treatment plan. He is a true hero to all who know him and is intent on finding a cure for cancer when he grows up "so no other little kids have to get poked." As of December 2004 Brian is considered a long term survivor!!!
Brianna was diagnosed with Acute Lymphocytic Leukemia on New Year's Eve 1998 when she was 6 years old. She completed 2 1/2 years of chemo in July of 2001.
Brianna is a very sweet and loving daughter. In years past, she had been on the middle school track, volleyball and basketball teams and the varsity swim team at the high school. She had previously been an honored teammate for The Leukemia & Lymphoma Society's Team in Training program for several seasons and was part of my inspiration to complete 3 marathons with them to help find a cure for all blood related cancers.
Brianna is a very sweet and loving daughter. In years past, she had been on the middle school track, volleyball and basketball teams and the varsity swim team at the high school. She had previously been an honored teammate for The Leukemia & Lymphoma Society's Team in Training program for several seasons and was part of my inspiration to complete 3 marathons with them to help find a cure for all blood related cancers.
Caitlin (Cait) was diagnosed with osteosarcoma, a rare form of childhood bone cancer on June 21, 2004. Cait was a typical 16 year old teenager at the time of her diagnoses. She played defense for her high school soccer team and a member of the debate team. What we thought was a sports injury turned into every parent’s worst nightmare. Cait was about to undergo the worst year of her life, yet she was determined to beat cancer. Caitlin's tumor was located in her right distal femur at the end of the bone where it touches the knee. Chemotherapy started immediately. On September 14, 2004, Caitlin had extensive surgery to remove the cancerous tumor. Her femur was replaced with titanium and she received a new plastic knee. Unfortunately, the surgery left her with nerve damage, causing foot drop. After numerous months of intense physical therapy, Cait is now able to walk without the assistance of a brace. Caitlin finished chemotherapy in February 2005. Caitlin has led her battle against cancer with strength, dignity and a sense of humor. Caitlin's motto: Live Well, Laugh Often and Love Much.
The sparkle in her eye, the sunshine in her heart,
each of us loved a different part.
The way she always found the right thing to say,
her life was special each and every day.
The strongest of minds, a touch so kind,
a strength most of us could never find.
She may be out of sight, but she didn’t travel far,
for in the night sky, she is our bright and shining and star.
The sparkle in her eye, the sunshine in her heart,
each of us loved a different part.
The way she always found the right thing to say,
her life was special each and every day.
The strongest of minds, a touch so kind,
a strength most of us could never find.
She may be out of sight, but she didn’t travel far,
for in the night sky, she is our bright and shining and star.
Cassidy was diagnosed on July 30, 2004 with an aggressive brain tumor called anaplastic apendymoma (spinal cord tumor). She endured many numerous surgeries and radiation treatments. Cassidy passed away at the age of 12 on April 29, 2006. Cassidy was a phenomenal daughter whose courage and strength far surpass her young years and she was one of the most caring and compassionate people that I have ever met. Her compassion towards other children with cancer touched many, many hearts.
Chad was diagnosed with Leukemia in September 2000 when he was only 8 years old. He finished treatment in November 2003! In years past, he loved swimming, basketball, and his Boston Terriers, Junior and Bosley! He learned how to make Cheesecake on his Make A Wish Trip to Hawaii in April of 2001.
Clarissa was diagnosed in January of 1999 at the age of 8 years old with ALL (acute lymphoblastic leukemia). She was done with her chemotherapy in June of 2001. She is a very active young lady. She has enjoyed swimming, being with her friends, and camping with her family. Clarissa is a very strong young lady. We are very thankful that she did so well. She is truly an angel to us.
Cole was diagnosed with Ewings Sarcoma, a rare form of cancer in February 2002. He was ten years old at the time. The tumor was lodged in the left side of his pelvis and weighed approximately eight pounds. Cole went through 14 rounds of chemotherapy, 30 days of radiation and then surgery to remove half of his pelvis. After Cole’s treatment and remission he was back to playing roller hockey, basketball, golf, riding motorcross bikes, playing paintball, surfing, riding a bike and snowboarding. He is always enjoying life and is an inspiration to everyone he comes in contact with. When Cole was younger, he always enjoyed making gingerbread houses with his aunt during the holiday season!
Danielle was born on January 13, 2002. She was our first child and the joy of our lives. We had no indication that anything was wrong with Danielle, other than she seemed pale to a number of people who came in contact with her. November 1, 2004, is a day we will never forget, it was a day that changed our lives forever. Our precious little girl was diagnosed with Acute Lymphoblastic Leukemia also known as ALL. She was admitted immediately to Children=s Hospital where we stayed for a week. In that week Danielle underwent surgery to have a med-port put in her chest, a bone marrow aspiration, a spinal, daily blood work and the start of chemotherapy. Danielle underwent treatment for 2.5 years. Danielle has always been a daily inspiration to her family and all those who know her and we are so thankful for each day.
Andrew William (“Drew”) was born in October of 1998 and joined his big brother Joey. He was a happy, healthy baby who grew into an adorable and mischievous toddler. Just after his second birthday, I began to notice that he was having unexplainable symptoms such as excessive sleeping; not wanting to eat and holding his head as if he was in pain. In the month that followed, I brought him to his pediatrician five times and had Drew examined by three different doctors. Each thought he had a virus, but they finally sent us for blood work, but that did not get any results as he did not have Leukemia.
Finally, Drew's pediatrician acknowledged that he was unsure what was wrong with Drew and told me to take him to Children=s Hospital in Boston, and not leave until we had an answer. It turned out to be quite a long day. At Children=s, they did x-rays which turned up nothing (they thought maybe he broke his jaw); finally they did a CT-Scan which revealed the mass in his brain (and several in his spine). It turned out that he had a tumor called ependymoma. We were admitted to the ICU and I was told that if his vital signs decreased at all that they would have to rush him to the emergency room. It was unbelievable to me that I went from searching for answers to wondering if he would survive the night.
Over Thanksgiving weekend of 2000, he had surgery to remove part of the tumor (they could not surgically remove all of the tumor since it would have caused severe brain damage if not death). He was too young for radiation, which left us with chemotherapy as our only option.
Drew endured multiple surgeries including a feeding tube and tracheotomy and several rounds of chemotherapy. Sadly, Drew passed away in July of 2001. He is still thought of all the time and desperately missed. He will forever be my hero and I will forever be in awe of all Drew endured and what a wonderful little boy he was.
Finally, Drew's pediatrician acknowledged that he was unsure what was wrong with Drew and told me to take him to Children=s Hospital in Boston, and not leave until we had an answer. It turned out to be quite a long day. At Children=s, they did x-rays which turned up nothing (they thought maybe he broke his jaw); finally they did a CT-Scan which revealed the mass in his brain (and several in his spine). It turned out that he had a tumor called ependymoma. We were admitted to the ICU and I was told that if his vital signs decreased at all that they would have to rush him to the emergency room. It was unbelievable to me that I went from searching for answers to wondering if he would survive the night.
Over Thanksgiving weekend of 2000, he had surgery to remove part of the tumor (they could not surgically remove all of the tumor since it would have caused severe brain damage if not death). He was too young for radiation, which left us with chemotherapy as our only option.
Drew endured multiple surgeries including a feeding tube and tracheotomy and several rounds of chemotherapy. Sadly, Drew passed away in July of 2001. He is still thought of all the time and desperately missed. He will forever be my hero and I will forever be in awe of all Drew endured and what a wonderful little boy he was.
Elly was diagnosed with Acute Lymphoblastic Leukemia on September 3, 2004 when she was just 18 months old. She finished treatment in the Fall of 2006. Elly enjoys music, reading, playing with her big brother and being outdoors. Elly has a lot of people who love and support her. We are thankful for every day.
Erin was 26 months old when diagnosed with Acute Lypmphocytic Leukemia. She is a wonderful, energetic child. Erin completed treatment in May 2002 and enjoyed almost a full year in remission. Sadly Erin relapsed in March 2003 and had to undergo an intense regimen of chemotherapy once again.
Erin ended chemotherapy for relapse on August 12, 2004. She started Kindergarten 2 weeks later and loved it. We thank God every day that she's here with us. We know all too well how quickly things can change and try to enjoy every day with our children.
Erin ended chemotherapy for relapse on August 12, 2004. She started Kindergarten 2 weeks later and loved it. We thank God every day that she's here with us. We know all too well how quickly things can change and try to enjoy every day with our children.
Hunter was diagnosed with Acute Lymhoblastic Leukemia on December 20, 2003, at 18 months old. She endured 2 years of chemotherapy and finished treatment on January 17, 2006.
On March 20, 2006, after two short months off-treatment, we discovered that she had relapsed in her spinal fluid. She completed 2 years and 3 months of much harsher chemo, which included 26 hospital stays during the first year. She spent the weeks before and after her 5th birthday receiving cranial radiation therapy.
On June 24, 2008, one day after her 6th birthday, she received her final chemotherapy treatment.
Hunter is now 9 years old, in third grade, and an avid equestrian. When she grows up, she wants to be a horse trainer.
On March 20, 2006, after two short months off-treatment, we discovered that she had relapsed in her spinal fluid. She completed 2 years and 3 months of much harsher chemo, which included 26 hospital stays during the first year. She spent the weeks before and after her 5th birthday receiving cranial radiation therapy.
On June 24, 2008, one day after her 6th birthday, she received her final chemotherapy treatment.
Hunter is now 9 years old, in third grade, and an avid equestrian. When she grows up, she wants to be a horse trainer.
Isabelle was diagnosed with high risk infantile leukemia when she was 9 months old. She is now a happy and healthy middle schooler who enjoys writing, reading, creating role playing games on the computer and caring for her pet snake. Isabelle also loves to travel and is trying to learn Japanese!
Jake was diagnosed with high risk t-cell acute lymphoblastic leukemia on Nov. 14 2000. He went into remission quickly, but relapsed in his bone marrow on Sept. 20, 2001, his 3rd month of maintenance. We had a wonderful summer, he felt good, his hair grew back, he started playing freshman football before he relapsed. Jake started getting stronger chemo to get ready for a Bone Marrow Transplant. Since we could not find a 6/6 donor, we were going to do an experimental haploidentical transplant using his dad who was 3/6. Nov. 14 2001, one year after diagnosis, we were at City of Hope in CA, talking with the Doctors. Christmas came and we were all together and had such a wonderful time. Then right after Christmas Jake relapsed again, they gave him stronger chemo, but the leukemia was also strong and did not go away this time. We took Jake home and God let us have him for one more month before he was carried to heaven by the angels waiting in our room on Feb. 9 2002 at 7:20am. He took his last breath in his Dad's and my arms. He was 15 years old and fought a courageous 15 month battle with leukemia. Jake was born on Dec. 17 1986 and presented to us in a Christmas stocking. We thank God for allowing us to have Jake, even if it was for a short time. Jake was very loving and always cuddly, would sit on my lap, even though he was 5 foot 10 inches and over 200 lbs. He had a great sense of humor, was always playing jokes and LAUGHING. He enjoyed riding his go-ped, motorcycle, playing with his playstation 2 and hanging out with his friends. He loved to DANCE. Jake was a wonderful Son, Brother and Uncle. He is and always will be our Hero. Until we meet again, Safe in the arms of Jesus.
Jamie was diagnosed with t-cell leukemia in August of 1998. He followed POG 9404 and finished treatment in October 2000. He is currently in remission and doing well. He is busy living life to the fullest and we’re enjoying seeing him blossom into a wonderful young man!
Jason had a very friendly personality. He loved life and enjoyed being with people. Jason was considered Globally Developmentally Delayed, but don't let this fool you. Once people got to know him they realized just how smart Jason truly was. Jason had many struggles and triumphs in his life. At the age of 27 months he had his first of many Grand Mal Seizures. Most of the seizures would put him in the hospital overnight. He had to struggle with language, social skills, and motor problems; to name just a few. Jason had his Bar Mitzvah at the age of 14. He did most of the service in Hebrew and English...many said he couldn't do it - but he did it! He loved video and computer games. Jason was a great baker; if you wanted pancakes in the morning, cookies for a bake sale, or even Challah for Shabbat, he was always there willing to help! He loved to take pictures either at camp, on vacations, or just messing around at home.
Jason was a member of Special Olympics. He participated in Soccer, Basketball, Volleyball, and many other sports. Jason participated in state as well as regional Special Olympics games. He wanted to try gymnastics but this adventure was never to be. He was also an active member of his school dance team, The Hi Tops. In June of 1999, the Dance team went to North Carolina for the World Special Olympics Games. Even though Jason was not feeling well during the trip, he never missed a performance. He somehow managed to get on that stage no matter how awful he was feeling!
Jason was diagnosed on February 28, 2000 with ALL. Jason did go in remission a month later on March 28, 2000. But on September 19, 2000 we were told Jason was no longer in remission. It was then that Jason's struggle truly began. Jason spent most of the next 4 months in the hospital trying very hard to beat this monster that was taking over. It was during this time that Jason got his wish granted through Make A Wish. A trip to Disney World in Florida. Somehow Jason made this the best trip ever for all of us! Even when in pain and things were looking low, Jason never ever wanted to give up. Giving up was just not his style. On December 26, 2000, at 2:20 am Jason lost his battle.
Jason was a member of Special Olympics. He participated in Soccer, Basketball, Volleyball, and many other sports. Jason participated in state as well as regional Special Olympics games. He wanted to try gymnastics but this adventure was never to be. He was also an active member of his school dance team, The Hi Tops. In June of 1999, the Dance team went to North Carolina for the World Special Olympics Games. Even though Jason was not feeling well during the trip, he never missed a performance. He somehow managed to get on that stage no matter how awful he was feeling!
Jason was diagnosed on February 28, 2000 with ALL. Jason did go in remission a month later on March 28, 2000. But on September 19, 2000 we were told Jason was no longer in remission. It was then that Jason's struggle truly began. Jason spent most of the next 4 months in the hospital trying very hard to beat this monster that was taking over. It was during this time that Jason got his wish granted through Make A Wish. A trip to Disney World in Florida. Somehow Jason made this the best trip ever for all of us! Even when in pain and things were looking low, Jason never ever wanted to give up. Giving up was just not his style. On December 26, 2000, at 2:20 am Jason lost his battle.
Our daughter Karen was born in 1988 and diagnosed with neurofibromatosis (NF1) at the age of 3. This is a neurological disorder that caused her to have tumors along both optic nerves. She went through 19 chemotherapy treatments between the age of 3 and 4 1/2 and never lost a strand of hair! She would come home from treatment, eat hot dogs and macaroni and cheese, run to the bathroom to get sick, and then come back and start eating again. She was NOT going to let chemotherapy interfere with her meals. She received her treatment at a wonderful place called Tomorrow=s Children Institute in NJ.
Although she experienced learning disabilities, Karen loved to sing, dance and play sports. She played soccer, basketball and baseball with other "handicapable" kids and adults. She loved Winnie the Pooh and most Disney movies.
Karen died unexpectedly at the age of 10 from complications from the tumors in her brain called optic gliomas. Karen faced many hardships in her short 10 years, but faced them all with courage, strength and humor. It is wonderful that Karen has a candle with a lemon pound cake scent. She loved to eat, but was allergic to chocolate, so this is just the right dessert for her.
One of Karen’s favorite songs was “Unforgettable” ….. She truly is.
Although she experienced learning disabilities, Karen loved to sing, dance and play sports. She played soccer, basketball and baseball with other "handicapable" kids and adults. She loved Winnie the Pooh and most Disney movies.
Karen died unexpectedly at the age of 10 from complications from the tumors in her brain called optic gliomas. Karen faced many hardships in her short 10 years, but faced them all with courage, strength and humor. It is wonderful that Karen has a candle with a lemon pound cake scent. She loved to eat, but was allergic to chocolate, so this is just the right dessert for her.
One of Karen’s favorite songs was “Unforgettable” ….. She truly is.
As Lauren’s health declined, one of her last wishes was to go with her family on a cruise to the Mexican Riviera. She longed to be near the ocean she loved so dearly with the wonderful sea life below. Her room at home was a virtual aquarium, filled with an array of dolphin paraphernalia, including books, drawings, jewelry and sculptures. Her favorite summer camps were those that involved studying marine life, snorkeling and scuba diving. The high point of our cruise and possibly one of the most treasured experiences we would ever share was the Dolphin Adventure in Puerto Vallarta. The ravages of her brain tumor left her with severe handicaps such as double vision, near deafness, facial and lower extremity paralysis and pain. Despite her limitations, Lauren watched the dolphins leaping in the water around us, patiently waiting to join them. As we lowered from her wheelchair into the water, Lauren was beaming with joy. There she was living her dream, surrounded by her family and three massive dolphins. These 600-pound gentle giants immediately seemed attracted to her, but at the same time seemed to sense her frailty. They carefully rubbed their bodies against Lauren in a seemingly caressing and nurturing fashion. She danced and frolicked with them, rode on their backs and even gave one a kiss. “This has been the BEST day of my life,” she exclaimed as the adventure came to a close. For a few precious moments nature’s magic had allowed Lauren to escape from her broken body and find true happiness and pure joy a dream come true for a seventeen-year-old girl.
Levi was born on January 31, 2007. On May 27, 2009 at the young age of 2.5 years, he was diagnosed with Acute Lymphoblastic Leukemia (ALL). Levi also has Down syndrome and has been such a gift from God. Levi is a big brother to his 3 year old sister, McKinleigh and she just adores him. We are so thankful that Levi finished his long 3.5 year journey of chemotherapy in August 2012 and is truly our little hero!
It was February 25, 2002, five days after Lindsay=s 19th birthday, that she discovered a lump beneath her right collar bone. Tests the next morning showed atypical cells were present, but it wasn=t until March 8th that our world was forever changed with the diagnosis of cancer. Numerous tests taken in the next few days showed lesions in the chest, lung, liver, abdomen, and pelvis. It took two weeks to confirm what type of cancer B Stage IV Alveolar Rhabdomyosarcoma.
It is a rare and very aggressive cancer, with approximately 300 cases diagnosed yearly in the United States, only 50 of those being in Lindsay=s age group (it most often strikes between the ages of 2-6). Chemotherapy was immediately started. Throughout the first year, scans were periodically taken which showed we were winning our battle against this monster.
However, post-treatment scans told a different story when new growth was discovered in her chest wall. At this point, surgery was indicated, but they needed to shrink the tumor first, so a different type of chemotherapy was started. On August 21, 2003, she had seven hours of surgery to remove the tumor, which also involved removing six ribs, two pieces of her lung, and scraping off a little bit of her sternum. After eleven days in the hospital, eight of which were in intensive care, her surgeon described her recovery as nothing short of incredible and remarkable, and was amazed and impressed by her determination to get better. This was not, by far, the end of her journey. Radiation to the margins of where the tumor was taken out was planned, but as we were (literally) walking out the door to go to her first appointment, the call came which told us, again, more growth. This time it was on the underside of her diaphragm. So, a third chemotherapy was started, which did nothing to shrink the tumor. Then a fourt h chemotherapy was started, which not only did nothing to shrink the tumor, but more growth showed in the chest wall where she had the surgery. Shortly after this, she started having excruciating pain near the tumor that is on the underside of her diaphragm. Tests showed that as it grew it started pressing on some nerves in that area, so radiation was started in an effort to alleviate this pain (thankfully, it worked). The fifth chemotherapy was done simultaneously along side of the radiation, but sadly, it did not give us the answers we have prayed so hard for, as there is more growth again.. Throughout all of this, Lindsay was incredibly strong and determined in her efforts to beat this. She lost her battle on July 21, 2004, she was 21 years old.
It is a rare and very aggressive cancer, with approximately 300 cases diagnosed yearly in the United States, only 50 of those being in Lindsay=s age group (it most often strikes between the ages of 2-6). Chemotherapy was immediately started. Throughout the first year, scans were periodically taken which showed we were winning our battle against this monster.
However, post-treatment scans told a different story when new growth was discovered in her chest wall. At this point, surgery was indicated, but they needed to shrink the tumor first, so a different type of chemotherapy was started. On August 21, 2003, she had seven hours of surgery to remove the tumor, which also involved removing six ribs, two pieces of her lung, and scraping off a little bit of her sternum. After eleven days in the hospital, eight of which were in intensive care, her surgeon described her recovery as nothing short of incredible and remarkable, and was amazed and impressed by her determination to get better. This was not, by far, the end of her journey. Radiation to the margins of where the tumor was taken out was planned, but as we were (literally) walking out the door to go to her first appointment, the call came which told us, again, more growth. This time it was on the underside of her diaphragm. So, a third chemotherapy was started, which did nothing to shrink the tumor. Then a fourt h chemotherapy was started, which not only did nothing to shrink the tumor, but more growth showed in the chest wall where she had the surgery. Shortly after this, she started having excruciating pain near the tumor that is on the underside of her diaphragm. Tests showed that as it grew it started pressing on some nerves in that area, so radiation was started in an effort to alleviate this pain (thankfully, it worked). The fifth chemotherapy was done simultaneously along side of the radiation, but sadly, it did not give us the answers we have prayed so hard for, as there is more growth again.. Throughout all of this, Lindsay was incredibly strong and determined in her efforts to beat this. She lost her battle on July 21, 2004, she was 21 years old.
Logan was diagnosed with Acute Lymphoblastic Leukemia (ALL) on September 20, 2011. About a month before this Logan started complaining of leg pain. Once it occurred in the car after a long car ride and the second time it occurred while sleeping at night. Both times were also accompanied by a fever. Not thinking much of it; he had just returned to day care, I figured he had a virus and his legs had fallen asleep. After the third time it happened I took him to the pediatrician. She barely looked at him and attributed it to growing pains. She told me that the fevers were unrelated. I wasn’t happy with this diagnosis, but figured that she was the doctor so she knew better than me. It occurred again a week later. I made another appointment with a different pediatrician within the same office. She fully examined Logan and found that his spleen was enlarged and that he had tiny red bumps all over his skin. She sent us to York Hospital for blood work. All of the blood work came back showing signs of blood cancer. His platelets were 10,000 and should have been over 100,000. He was anemic and there were blasts in his cells. We were immediately sent to Hershey were they ran numerous tests and came up with the diagnosis of ALL. (This all occurred within a month of his baby brother being born as well. I was very sick during my pregnancy due to my gallbladder and was on TPN and considered homebound. He spent a lot of time with my parents over the summer. I had his brother, Lucas, on August 15 and my gallbladder removed a week later. 3 weeks later we learned of Logan’s condition.) He did have a slight setback in the first phase when he developed AVN (avascular necrosis) which caused even more leg pain, but he is being monitored closely by an orthopedic doctor along with the oncologists and he has not had a problem since. He also had to get his port redone at one point as it moved from its original location and wasn’t effective at getting blood.
Logan is a very special child who has touched everyone’s lives that have met him. He is strong and endured going through all of his treatment like a champ. Currently, he is almost one year off treatment and is cancer free! He goes to Hershey every other month for blood work and a physical to watch for relapse. Logan is a second grader at Ore Valley Elementary and absolutely loves it! He is active in karate and boy scouts and will be starting basketball in December.
Logan is a very special child who has touched everyone’s lives that have met him. He is strong and endured going through all of his treatment like a champ. Currently, he is almost one year off treatment and is cancer free! He goes to Hershey every other month for blood work and a physical to watch for relapse. Logan is a second grader at Ore Valley Elementary and absolutely loves it! He is active in karate and boy scouts and will be starting basketball in December.
Matty was diagnosed with ALL just before his 2nd birthday in 2015. Treatment brought him quickly into remission, but chemotherapy was required for 3.5 years in order to make the remission permanent. During treatment, Matty experienced the complete shutdown of his digestive system. He ran the gamut of feeding tube varieties and spent a number of months on intervenes nutrition. He could not even tolerate water. Despite spending much of his 2nd and 3rd years of life attached to a tube, Matty could not be kept down. He would go immediately from being sick back to playing and even running, while we adults chased after him to keep his tube from coming out. Medical practitioners would comment on his patience and positivity when they placed a needle or when he had an infection. There were moments of intense struggle, when Matty was extremely weak. Yet he never seemed afraid.
Matty is now a couple of years out of treatment. He continues to experience speech articulation, gross motor coordination and memory challenges, likely consequences of treatment. Despite these frustrations, Matty lives to share and has become quite a chatterbox. While he still suffers from reflux and slow digestion, he loves to eat! He counts onions and asparagus among the veggies he piles on his plate. Matty demonstrates the best of attitudes in the face of adversity, defining success by the high number of people he hugs each day.
Matty is now a couple of years out of treatment. He continues to experience speech articulation, gross motor coordination and memory challenges, likely consequences of treatment. Despite these frustrations, Matty lives to share and has become quite a chatterbox. While he still suffers from reflux and slow digestion, he loves to eat! He counts onions and asparagus among the veggies he piles on his plate. Matty demonstrates the best of attitudes in the face of adversity, defining success by the high number of people he hugs each day.
Megan is an adorable 4 year old who was diagnosed with Acute Lymphoblastic Leukemia on January 23, 2009 at the age of 18 months. She has been through so much at such a young age. Megan could not walk during the first 3 months of treatment due to pain. She had to relearn how to walk and rebuild strength in her legs through physical therapy. She has received many different types of chemotherapy through IV, IT (spine), IM (muscle) and orally. She also had an NG feeding tube for several months because she would not eat. During her treatment there were many ER trips, hospital stays and blood transfusions. All of this was before the age of 3. Megan is a strong little girl. She has been battling leukemia more than half of her life. She finished her chemotherapy treatment in the spring of 2011. If you look at her today you would not know what she has been through. She looks like a happy healthy 4 year old. She loves to play outside, play hide-and-seek, swing and watch movies. Megan also enjoys going to amusement parks and playing with her big brother Austin. Austin could always cheer Megan up and make her laugh when she was not feeling well. She is adored by her parents and big brother. She is our little hero.
Michael was diagnosed with Acute Lymphoblastic Leukemia on 7/15/99 at the age of 5. He finished treatment on 9/16/02 and is doing well. It was a very bumpy road, but he handled it like a champ!
Rich was diagnosed with Pre-B cell ALL in February of 1998, during his freshman year of high school.
He was treated at Akron Children's Hospital by a wonderful oncologist. Rich continued to attend high school (most of the time) and played high school soccer, recreational basketball and volleyball throughout his treatment. He had one hospitalization during treatment and one bout with shingles, but otherwise participated in all kinds of high school activities. In June of 2001 marked his graduation from high school and the end of his chemotherapy. He has been cancer-free since remission was achieved in 1998. He attended college at Ashland University and is currently a Junior/Senior High math teacher. He has coached several high school sports, but is now coaching Jr. High wrestling. He also was married to a wonderful girl in July of 2011!
At the age of almost 15 (August of 1998) Sabrina was diagnosed with rhabdomyosarcoma of the left
peri-rectal region. At that time she was very active in school and loved volleyball (she played on the varsity team as a freshman). She endured 11 grueling months of chemotherapy and finished treatment in the Summer of 1999. She was getting her life back and getting back into sports and normal "teen" stuff when, just 15 months off treatment, she relapsed. This time the tumor was in her right kidney. Her kidney was removed and she once again began chemotherapy. She also went through radiation during both sets of treatment. She finished therapy again in March 2001 and then began traveling to Bethesda, Maryland for an experimental vaccine. She completed vaccine therapy in August 2001 and sadly relapsed once more in November. This time the tumor was in a rib and on the back of her right lung. She couldn't stand the thought of more treatment but being the strong young woman she was she once again agreed to chemotherapy and radiation. God blessed us once again and allowed Sabrina to achieve remission. She started college and life was good. In October 2002, during a checkup, we learned that the monster was back and that nothing could be done about it this time. That was by far the most devastating news we had ever received. We were told that she might only have weeks to live. Once again she proved them wrong. She lived over 5 months with at least 4 of those months being filled with good times for her. She felt good and was able to get out and do things that made her happy. God had plans though that we didn't and still don't understand. On March 17, 2004 Sabrina Leigh earned her angel wings. She was peaceful when she left this world and finally was cancer and pain free forever.
Sara Rose Hackett was a beautiful, red-haired, little girl. She loved her family, friends, and her black poodle, Opal. Sara was smart and beautiful, and her favorite pastimes included having tea parties, drawing and painting. Sara taught those around her important life lessons, including the importance of love, how to live life and enjoy every moment, despite obstacles. Sara Rose was always smiling, playing, and being a normal, little girl. Sara had made wonderful friends, but when she could no longer play with them due to her illness, her favorite friend became her black poodle. Opal never needed to be told what to do or how to play. She sat with Sara, slept with Sara, and brought her tremendous joy through her last day, which was three weeks before her 6th birthday. Today, Sara is surely having tea parties with new friends in heaven, watching over all of us, providing guidance, and waiting for the day when we will join her forever, including her black dog, Opal. Sara is forever in our hearts.
Sara Rose Hackett
By Mom
Sun swept red hair, sparkling like glitter,
An artist immersed in a rainbow of color,
Rosy, soft cheeks sprinkled with freckles,
Arranging fresh flowers for a tea party with friends.
Sara Rose Hackett
By Mom
Sun swept red hair, sparkling like glitter,
An artist immersed in a rainbow of color,
Rosy, soft cheeks sprinkled with freckles,
Arranging fresh flowers for a tea party with friends.
Sarah Anne was 2 and a half years old when diagnosed with Acute Lymphocytic Leukemia in May of 2000. She endured over two years of chemotherapy and completed her treatment in November of 2002. She is a great big sister to her sister and brother. Sarah Anne, through her battle with leukemia, has developed into such a sweet, caring and compassionate young girl. Sarah Anne is constantly thinking about and praying for all the little children who are just beginning and those in the midst of their battle with cancer.
Suryan was diagnosed with rhabdomyosarcoma in Nov. 2001 . He did 30 months of treatments and never let it slow him down. He would come home from chemo and hit the beach to surf, as we stood there amazed. He passed from this world to the next on May 13th 2004. He lived each day as if it were his last, embracing life with a joyful abandon and passion for running, surfing, guitar playing and his love of learning at FSU. He left us with memories to laugh about, as well as moments to make us think. He embraced life; he embraced us; he left us wishing for one more day. Suryan will be deeply missed. but we are grateful that he touched our lives, and we are better people for having known him.
On November 19, 1998 in one profound moment, our lives changed forever. Our oldest son Tommy was diagnosed with t-cell Acute Lymphocytic Leukemia at 17 years of age. As a devoted athlete and an honors 12th grade student, he had just started what was to be that memorable senior year of high school. Tommy finished 3 years and 4 months of treatment on March 5, 2002. He fought and sacrificed so much and did it all with much growth, courage and determination. Even through the numerous grueling bone marrow aspirates, spinal taps, and hundreds of chemotherapy treatments … two major surgeries on both his hips, shoulders and knees for Avascular Necrosis which developed as a result of chemotherapy . . . he always flourished with incredible spirit and strength.
Through his experience with cancer as a young man, Tommy found his passion in medicine. In the Spring of 2010, Tommy graduated from medical school and fulfilled his dream of becoming a Doctor! Tommy has lived these past 12 years with enormous strength and determination. During his treatment, he lived as if cancer was secondary to all the goals and accomplishments he set forth. He never, ever let his illness dictate his life. Though Tommy is the person he is today because of the life altering experiences he had to endure, he has used those lessons and formed this extraordinary life that he has worked so hard to succeed. With all his compassion and fortitude, I can only imagine what his future holds as a phenomenal doctor and human being. And those lives he touches along the way will only be the more grateful for crossing his path.
Through his experience with cancer as a young man, Tommy found his passion in medicine. In the Spring of 2010, Tommy graduated from medical school and fulfilled his dream of becoming a Doctor! Tommy has lived these past 12 years with enormous strength and determination. During his treatment, he lived as if cancer was secondary to all the goals and accomplishments he set forth. He never, ever let his illness dictate his life. Though Tommy is the person he is today because of the life altering experiences he had to endure, he has used those lessons and formed this extraordinary life that he has worked so hard to succeed. With all his compassion and fortitude, I can only imagine what his future holds as a phenomenal doctor and human being. And those lives he touches along the way will only be the more grateful for crossing his path.
