Welcome to Jonathan Powell's Page!!!

Jonathan Powell was born to Melissa and Tim Powell on March 16, 1998. Jonathan has always been a healthy, fun-loving, full of life child. He is truly a blessing to all those who know him. On May 15, 2000, Jonathan was hospitalized for an elevated white blood cell count and fever. The next day our world collapsed. A large tumor the size of a small soccer ball was found in his abdomen area by ultrasound and x-ray. On May 18th he had surgery to remove the tumor and his left kidney. Following many tests, including a bone marrow aspiration, CT-scan, bone density scan, MRI and MIBG scans, two small spots were found on his knees; therefore he was diagnosed with Stage IV Neuroblastoma. He has finished seven rounds of chemotherapy at Brenner Children's Hospital in Winston-Salem, North Carolina. He completed 16 rounds of radiation. On January 18, 2001, Jon underwent his Peripheral Blood Stem Cell Transplant at Duke University. In April 2001, Jon was enrolled in a Phase II Clinical Trial of 3F8 Monoclonal Antibodies at Memorial Sloan Kettering Cancer Center in New York City and completed three rounds. In February 2002 he completed his one year follow-up studies at Duke University Medical Center. After suffering a seizure in May and undergoing many tests, a small tumor was removed from the right side of his brain...neuroblastoma. In August 2002, Jon completed 18 round of cranial radiation at Duke University. The following month Jon underwent a complete series of tests which yielded NO EVIDENCE OF DISEASE. On October 16, 2002, after Jonathan had a stiff neck for a week or so, an MRI showed massive tumor wrapped around his complete spinal cord. He started radiation the next day and then on Saturday, October 19th, Jonathan lost his battle with Neuroblastoma.

We thank you for joining us in this journey. Please continue to keep us in your prayers.

Journal

Saturday, November 1, 2003 11:30 PM EDT

***Quick Update***

Jon Jon's little sister finally entered this world this (Saturday) morning at 8:39 AM. Shis was 7 lbs 2.9 oz. and 19.5 inches long. She is a spitting image of Jon Jon when he was born! Beautiful!!!





Sunday, October 19, 2003 10:20 PM EDT

Hello everyone. Yes, we are still alive.

365 days.
365 days without holding Jon close.
365 days without smelling his hair.
365 days without hearing his voice.
365 days without seeing his beautiful face.
365 days without sunshine.

Unbelievably, it has been one year today since Jonathan passed into the hands of Jesus. Officially today all of the "firsts" are over. The first Halloween without Jon. The first Thanksgiving. The first Christmas, Valentines Day, Easter. The first Birthday. Each of these days were hard, especially today. To those who told us "time will heal", I am sorry but you were wrong. Time does not heal. Time will never heal. We will never heal. Now, that is not to say we have not laughed in a year. Yes, some days have been happier than others. But the hurt, the gut-wrenching pain never leaves, not for one minute. Time does not heal, but I suppose time does allow one to learn to live with the pain. To allow laughter. To allow us to look back on Jon's life and smile at the way he made us smile. Jon always lived life to the fullest with a smile on his face. One of our closest friends, Omar "Coach" Aboulhosn wrote this of Jon to us this morning: "Everyone that had the blessed opportunity to have met Jon are better people today because of him. We live our lives differently because of what he struggled through. We are in awe of his strength and his love of life that we got to witness in the midst of his illness." I cant describe how proud that makes a parent feel, to have someone say their life is different because of knowing your son. Jon will always be the absolute most special child we will ever know. We miss him so deeply.

As most of you know, we are expecting another baby. Melissa is 37 weeks pregnant and Mary Josephine "Marijo" is due on November 8th. It has been a "non-eventful" pregnancy, and we are praying for nothing but healthy days for Marijo. It has been a pregnancy with lots of mixed emotions. We are excited and blessed, but are sad that Jonathan is not here to experience the "little sister" that he always wanted. We know he is watching with a smile for his little sister to be born.

In December we started the Jonathan Powell Hope Foundation, Inc. in memory of Jon. The Foundation, a 501(c)(3) non-profit organization, is a children's initiative of friends and family of Jon. Our mission is to eradicate childhood cancer through research, advocacy, and education, as well as provide financial support and tender loving care for children and their families who are undergoing medical treatment for this disease. Currently, Jonathan's Hope provides housing and other financial assistance for any child and their family diagnosed with this disease. This diligent effort to ease the burden of pediatric cancer treatment, and to find an effective prevention strategy for this disease will continue until there is HOPE for a new generation of children free of cancer. During the past year, we have helped children receiving treatment at Cabel-Huntington (WV) Hospital, Ruby Memorial (WVU) Children's Hospital, Brenner's Children (Wake Forest) Hospital, Duke University Medical Center and Memorial Sloan Kettering Cancer Center in New York City. We have a great Board of Directors, as well as an Attorney and Accountant who donate all of their services so that 100% of all donataions go directly to helping these families. On Friday, September 26, 2003, the First Annual Jonathan's Hope Golf Tournament was held at Fountain Springs Golf Course in Peterstown, WV. 120 golfers teed off at the event which raised over $22,000 for the Foundation. The following day, we had a Hot Dog Sale at the Princeton Wal-Mart to raise childhood cancer awareness which raised another $900. We have been richly blessed with a community full of caring, unselfish individuals. We have great plans for the Foundation, including purchasing a house in Durham, NC to provide free housing for families with a child undergoing a bone marrow or stem cell transplant. We also would like to help fund a research position at Memorial Sloan Kettering to help find a cure for Neuroblastoma. I have included a link below for the Foundations website. The website is a work in progress and will be undergoing major changes in the coming months.

Unfortunately, two more children we were close to passed away from this horrible disease this past year. Jake Peters (www.caringbridge.com/wi/jacobpeters) passed away on December 1, 2002. And Kaylen May (www.caringbridge.org/in/kaylen) lost her battle with Neuroblastoma on September, 10, 2003. Please keep these families close to you in prayer, along with all of the families who have lost children to this horrific nightmare. Please also remember Morgan Barnes (www.caringbridge.org/nc/morganbarnes), Sarah Smith (www.caringbridge.org/nc/sarahsmith), and Jake Courtney (www.caringbridge.org/nc/hopefor). These, along with all children fighting this disease desperately need our continuing prayers.

Thanks to all of you who continue to hold us in your prayers. Your many thoughtful words, cards and gifts have overwhelmed us this past year. We are continually amazed at how caring our friends, families and everyone continues to be.

Thank you and God Bless you all.
Tim, Melissa, Marijo and, always, Jonathan

Look at past journal entries

Email address  : tmjpowell@charter.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.