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Samuel "Jordan" Hughes was a precious seven year old when he called up to be with Jesus. He was a special boy and his journey during this short stay on Earth was amazing. He left a testimony that forever changed lives and hearts of many. He was a miracle from the start given that his parents were told they could never conceive. They prayed and attempted for seven years, then when it was put into God's loving hands, they were given a son.
At age 19 months, this bundle of joy was diagnosed with a childhood brain tumor, Ependymoma. In 2004, he underwent surgery at Cincinnati Children’s Hospital to remove the lemon-sized tumor and followed up with 33 conformal radiation treatments. He continued to have clear scans until 2006 when a second tumor the size of a grape was found in the same area as the first that had received the radiation. At this point the options were hard chemotherapy or travel to St. Jude Children’s Research Hospital, Memphis, TN for a second surgery. After continued prayer and guidance, he underwent surgery at St. Jude/LeBonheur Children’s Hospital followed by 30 radiation treatments to the same area. This was risky as there were only 34 other children in that particular study at that time, but the options were so limited. They knew one thing for sure when one renowned specialist stated "chemotherapy will not touch this thing" that they had to go the experimental route. Jordan again through prayer, annointings, and fastings, overcame all odds.
Then in January 2008 on a follow-up MRI, doctors found what was thought to be a third tumor in the exact location as the second tumor. He was only one of a few, if any, which had recurred in the same exact area after receiving double radiation. In April 2008, Jordan underwent his third brain surgery. Pathology reveals the entire lesion was scar tissue from high doses of radiation. Then again in June 2008, a small lesion is found. It continued to grow at a rate of one to two millimeters over the next few months. Jordan could no longer have radiation, so doctors placed him on a low oral dose of chemotherapy, an anti-inflammatory drug, and steroids. This is where most of the research was now pointing for success in stabilization. In October 2008, Jordan underwent a PET scan to determine whether the lesion was scar tissue or a tumor. An MRI shows that the lesion was on the brain stem. After the PET scan the next MRI reveals the lesion had tripled in size.
In November 2008, the parents, Sam and Tina were told that their PRECIOUS JORDAN would die in two months. Determined to help their son, they mailed packets of his files to the top five neurosurgeons in the U.S. They prayed along with two preachers and ask God to reveal the route the packets needed to travel. He was now placed is on medication and continued to have steady follow-ups a Cincinnati Children’s under the direction of Dr. Lars Wagner, Oncologist.
Through continued prayer, the Lord sent Dr. Michael Edwards, Neurosurgeon, Lucille Packard Children’s Hospital, Stanford University, Palo Alto, CA. He worked diligently with Dr. Lars Wagner and St. Jude Children’s Hospital over the next year where Jordan amazed all with the stabilization of this terrible disease. At this point, Jordan had NO physical or cognitive deficits and in fact was at the top of his kindergarten class at a school that was number one in the State of Kentucky. One neurosurgeon stated “We are scratching our heads, understand that we see the majority of Ependymoma cases across the United States and throughout the World.” Another stated “I am just praying and along for the ride”. God was in control and Jordan was doing well. Jordan remained stable with the chemotherapy protocol he received in Cincinnati.
The family continued to fast and pray for Jordan daily. They prayed over every bottle of pills that he was given. The prayer community continued to grow from local community, internet sites, renowned medical communities from coast to coast and Hawaii, “THE BEST OF THE BEST”. Of course, the family knew who the ULTIMATE HEALER was along this journey and all control was in his hands. Then the journey took a turn for Jordan when a December 22, 2009 MRI revealed continued stabilization of the lesion, but a very small nodule located in a ventricle. He also had increasing fluid. At that point, it was decided that the only reasonable route was to fly to California, while his central nervous system and physical status were good. January 2010, the flight to California made Jordan severely ill. The January 11th surgery was delayed because of complications from hydrocephalus. He underwent surgery to place a shunt to remove the fluid, develops high blood pressure, and a rare syndrome that temporarily altered his mental state.
February 1, Jordan underwent his fourth brain tumor surgery at Lucile Packard Children’s Hospital. It was determined that 75% of the lesion was scarring. Dr. Edwards was optimistic about removing all visible tumor, leaving only a residual lesion (scarring) attached to the vertebral artery. February until June, Jordan continued to progress physically and continued to have no cognitive deficits. In fact, many times he has been described as “One of the smartest children I know”. Jordan had a stable follow-up MRI in April upon returning home only to find on June 17th that an MRI would reveal SEVEN new tumors with two being in the spine. Jordan passed on June 21, 2010 at home in his mother’s arms. Jordan touched more lives in this world in his short life in a loving and positive way than most ministries could ever. God used him to bring out the best prayer warriors across all denominations in UNITY to glorify him.
We thought the rainbow would be important to share because it has been such a guide post along the way. The rainbow started at St. Jude when it seemed so appropriate at the end of his treatments to paint the RAINBOW OF HOPE on the wall of the Ronald McDonald House along with other friends. When Jordan’s dad lifted him up to his mother on the ladder, they knew that it became a special part of their journey. Little did they know the significance of it at that time and how God would continue to keep giving the family rainbows along the way to remind them of their journey.
Jordan was always a child of great accomplishments. The final one being the most visible to us and to all of you, his struggle with a deadly disease. Jordan had the ability LIVE IN THE MOMENT. This living in the moment saw him through the last year of his life, but more importantly, it was the way he lived his entire life and this should be a lesson to us all.
His life was so much more than the final months and days of his life. It was a life filled with great joy, laughter, memories, compassion, strength, kindness and love. There was not one person who did not like Jordan. In fact everyone who met Jordan and came to know him ended up loving him. He has an infectious personality. For 7 years he took our breath away with all his many acts of kindness, laughter, love and childlike faith. He was indeed an incredible child.
In the final days and last couple of weeks, Jordan had the hard questions for mom. “Mom, when will I RUN again, how much longer will it hurt, and I just want to be normal”.
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
RUN, JORDAN, RUN.
The Jordan Light Foundation, Inc. is a non-profit organization. This corporation is organized exclusively for charitable purposes and at all times will be operated exclusively for charitable purposes within the meaning of Section 501(c) (3) of the IRS code of 1986.
The Jordan Light Foundation, Inc
c/o Tina Hughes (President/Executive Director/CEO)
1510 Stuart Rd NE
Cleveland TN 37312
Toll Free: 1-866-720-7113