Carey Jones is my seven year old grandson. He is a handsome, quiet, sensitive and intelligent boy. 
Carey loves dinosaurs, power rangers, batman, action figures, pizza, ice cream, super heroes, super nintendo, swimming and riding his bike. Like many young boys, his life was carefree and fun until.....
CAREY'S STORY
took a nightmarish twist on March 17, 1998, when he was diagnosed with AML (Acute Myeloid Leukemia). His mom never suspected that a pediatric visit for being "tired, out of breath and pale" would change all their lives forever.
Instead of kindergarten activities, Carey has undergone medical treatment that a grown person would balk at facing. His teeth have all been pulled to prevent infection. His thick sandy blonde hair has fallen out several times. 
Carey reacts to chemotherapy and radiation with vomiting, blisters from his mouth to his stomach, diarrhea, bloody cataracts, rashes, nausea, etc. The cure is as much torture as the disease, but Carey is brave. Carey is always ending conversations with an "I love you!"
Still recooperating in the hospital from a massive stroke, subsequent coma and paralysis of the left side of his body, doctors debated whether Carey would be strong enough to undertake and survive a bone marrow transplant. Without this procedure, he would probably live less than a month. Carey has a big brother, Jamey (age 10), an only sister, Sarah (age 5) and a baby brother, Stevie (age 2). All five members of his family had bone marrow tests, but none matched. Not surprising. The odds are 1 in 20,000 of identifying an unrelated, compatible marrow donor which is what Carey needed. Carey was listed on the National Bone Marrow Registry, and the wait began.
A donor was found! Dad pawned several family possessions to accumulate enough money to get to Ohio where the first prelimary testing was done. It was a big disappointment when the donor was found to have a suspicious spot in his lungs which disqualified him. Ironically in trying to help a stranger, the donor may have saved his own life by discovering his cancer early. With heavy hearts, the whole family headed home from Cincinnati. Carey mentioned wanting just once to see an Ocean. Dad counted out their money , knew they did not have enough considering all the mounting massive bills, but made a decision based on a parent's love .... they drove all night to the east coast. 
They slept in the car to cut costs... ate cheap fast foods... but Carey waded in the big blue Ocean. Carey has many unfulfilled hopes for the future! He wants to live! I hope he has many more dreams come true.
Another donor was found. More testing was done, and thankfully the results were good. With both relief and terror, came the heartbreaking decision... should Carey take the chance on a bone marrow transplant with it's tremendous risks that he might live only days, endure much, and never even leave the hospital again? The alternative was to know that he would have just months of life. No parent should ever have to make such a choice, and live with the guilt and regret if the gamble of their child's precious days should be lost. We all prayed that it would be the right decision. On July 20, 1999, Carey Jones had an unrelated Bone Marrow Transplant.
Carey's family suffers too. Mom (Lillie) stays almost non-stop with Carey serving hospital time. Dad (Bob) works everyday to keep insurance and meet the needs of Jamey, Sarah, and the baby, Stevie. During past hospital confinements, Bob relieved Lillie on weekends so she could visit with her other children but that is impossible now with over 300 miles separating them, and limited funds. We all miss Lillie and Carey so seemingly far away.
Lots of changes happened in all their lives. 
This battle with cancer is a tremendous emotional and financial drain on their resources. Their van was re-possessed. The utilities shut off. They were evicted. Carey's siblings have been taken into three different homes in Nashville. I have the baby, Stevie. As a single mother of two teens living with me, I have to work so Stevie goes with me to the law office. My boss (also a mom) is understanding. Again and again, Stevie asks "Mama be back?" or "Dada be back?" It is equally difficult for Jamey and Sarah... separated and alone. It is time to enroll Sarah in kindergarten. Lillie wants to call all her children often. She has never been apart from them this long before, but it is too expensive.
August 14, 1999 
Carey's leukemia is in remission. His counts are up. No fevers. No signs of rejection. 
The doctors claim that he is setting medical records on his recovery from the bone marrow transplant. We are still being promised that Carey may be released from the Cincinnati Children's Medical Hospital in just two weeks if his progress continues to become an outpatient at Vanderbilt Children's Hospital here in Nashville. Bankruptcy has been filed. School started. Jamie, Sarah and Stevie are back together. I quit my job to babysit. I almost cried as I took Sarah to her first day of kindergarten instead of her mom. Carey's family has found a house to rent next door to me. The children moved in with their dad in a single room while he finishes all the "house projects" to make their home clean and safe for Carey with his compromised immune system. Bob works long hours after a full day's manual labor at his job, going without sleep to pull up carpet, tackstrip, refinish the floors, paint and clean. He can not afford to miss any pay, and has no more vacation days. There's an urgency because Carey can not be exposed to carpet mites, dust, smoke, pets, fumes of paint, dirty vents, oven cleaner, or bugspray. I bought a very cheap refrigerator for them. Bobby used all his money to buy some groceries. We are all stressed, upset, and tired.
September 3, 1999
Carey and his mom, Lillie, arrived at their new home on Monday evening, August 30, 1999. 
Carey is bald and "moon-faced" from the steriods and meds. He will be returning weekly to Ohio for testing along with check-ups three times a week at our local Vanderbilt Hospital here in Nashville. Lillie was given a rush course on home nursing so that she administer his twelve medications three x a day, mix & infuse IV medication 2 x a day, keep his lines flushed, change caps and dressings, along with making sure that he drinks 100 oz. of fluid a day (no caffeine). His favorite drink is Hawaiian Punch. Carey will not be able to go to school... and Lillie is trying to set up home-schooling. He is allowed only limited visitation from family members because he can not risk the exposure to his still weakened fragile immune system. This means not taking him to any crowded areas like malls, groceries, movies, etc. He does wear a face mask for trips to the hospital. Mom and dad can not do anything together, taking turns with necessary errands because somebody must always be with Carey. Like most seven year olds on the mend, he refuses to accept that he is sick and really wants to get back to normal playing with all the other children. Carey watches the other children playing outside from his window.
October 28, 1999
Today is DAY 100 from Carey's Bone Marrow Transplant! A very significant day in that many children (over 55%) do not survive to this date. As sad as I am at the prospect of other children and families hurting, I am also selfishly thankful that we still have Carey with us, alive and doing well. Carey is feeling energetic and rambunctious. Sometimes he is sad and depressed, but that may be his meds. Lillie left in the wee hours of the morning to drive the 320 miles to arrive at Cincinnatti's Children Medical Hospital bright and early for Carey's testing. The blood chemistry, audiogram, pulmonary functions had good results, but discovered that Carey will be needing eye glasses. The dental tests were postponed because the doctors were running behind schedule. Carey does not have to return for three months! Carey will still go to Vanderbilt Children's Hospital to be continually monitored and evaluated by Dr. Frangol (bone marrow specialist transferred from Seattle) at least once a week That seems like "freedom" when you have practically lived in hospitals and doctor's offices for years.
Dr. Thomas Gross, Carey's bone marrow specialist in Ohio, agreed to Carey pleas to "trick or treat" at a few neighbor houses for Halloween if he wears a medical mask. Carey is very excited. Carey wants to be included in the same fun that he sees Jamie, Sarah and Stevie having. He wants to be an ordinary little boy. Lillie walked with him to three houses before Carey tired out. While the other kids continued their night of fun, Carey rested on my couch. He was proud of himself that he had managed so well.
Lillie has already faced the challenge of Carey's siblings being sick with colds and other common childhood viruses. She manages to keep the kids segregated in different rooms so Carey is isolated and not exposed to germs. It is a difficult task for Lillie to protect him without depriving him of more of his childhood, but she is very dedicated to her role as a mother. I am very proud of my daughter in law, and my respect for her endless strength and stamina continues to grow.
Prayers are answered, and miracles do happen! Virtual strangers have offered us hope, encouragement, optimism and amazingly always just what was needed to not give up. Human beings can be so kind and generous. I feel that God touched many hearts with compassion and love for Carey and all of us. These friends are human angels on earth. I love my family so very much, and will always be indebted to those that helped when we were so discouraged, scared, alone and hopeless. The Jones family wanted only the opportunity to be normal again ... a family with happy healthy children that are very loved. Life is so precious.
CAREY'S FAMILY, cozy and snug in their nice safe home (I love having them close by), utilities on, food in the fridge, and just lately they *finally* got some reliable transportation.... an older model truck. Bob continues to work every single day, but is smiling lots more. Lillie works just as hard at home with the baby, practicing all her newly learned nursing skills, keeping a spotless house (for Carey's health), doing homework with the two school age children, and starting to potty train Stevie. Life is so good! We all feel closer as a family, tried and tested maybe, but we survived.... learning, experiencing and most importantly becoming more caring ourselves.
August 16, 2000
Carey reached his "one year" anniversary from his BMT doing just wonderful... healthy and active. His medical check-ups were promising. It was a wonderful summer. I often watched the kids, carefree and happy, playing on the swingset in my backyard. We had several cook-outs together. All the children got dirty helping me with weeding the garden. Sometimes I would see Carey and Jamey running, riding bikes and skateboarding with their neighborhood buddies. Best of all for me was the many impromptu visits from all four of my grandchildren with their generous hugs and kisses.
More than the other children, Carey was really excited about starting first grade this year. It is ironic how much a child misses school and companionship when they are not allowed to go. School starts tomorrow here in Nashville. It was not to be for this little boy. Carey started running a fever. Another trip to Vanderbilt emergency room. He was admitted. Blood work revealed that the leukemia is back. There are no words to describe how devastating that news was to us.
October 5, 2000
Carey was in the hospital for six weeks. Intensive chemo was started again. He continued to get sicker and weaker. He was moved to intensive care. Everyday we hoped and prayed. Everyday Carey suffered more and more yet he never complained. On October 3, 2000 at 12:30 a.m. with his mom and dad at his bedside, Carey passed away. The funeral service was held at Woodlawn Funeral Home. There was much sadness as family, friends, relatives, doctors and nurses said their last good-byes. We shared bittersweet memories. Carey was so innocent... so loveable. We believe that Carey was escorted by angels to heaven, a much better place where there is no pain, only joy and peace. Carey is in GOD'S HANDS. Carey was a blessing in our lives, no matter how short the time together. We know that Carey lives on in our hearts forever. His story is about love, hope and courage. Still It hurts to give a child back to the LORD. We will always miss Carey Michael Jones.
** Thank you, Angel In Disguise, for Carey's Angel Wings Memorial Picture.
**More GRAPHIC GIFTS In Honor of Carey's Memory
There are many adults and children with cancer whose stories have touched my heart.
Tricia, my younger sister, has lung cancer. She is a remarkable lady with a lot of accomplishments, determination and courage. I invite you to visit her website.
TRICIA'S STORY
Kristina and her family really need your prayers!
KRISTINA HILL's Story
There are encouraging and inspiring Victories...
C.J.'s Big Battle
Heavenly Lights Childrens Memorial
May the light of all children gone too soon shine forever.
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