Josh "The Candyman" Jones

Josh "The Candy Man" Jones
What can I say about my brother, Josh...Joshua Paul. He's artistic, humorous, giving but at the same time, he can be like any other teenage boy. He can be mean, selfish, and just downright grumpy. That's just Josh and he's mom's miracle baby. After our brother Jake was born, mom had her tubes cut, tied and burned. Needless to say, God had a plan, and 14 months after Jake came Josh; he'll be 16 on February 12. He should have a full life ahead of him; we don't know if he'll have that. You see, my brother was diagnosed with Acute Myeloid Leukemia a month after he turned 13 and we have been on one heck of a rollercoaster ride ever since.
We first found out when mom saw he was missing too many days of school from being sick. She looked at him one day, he was extremely pale and not wanting to do anything, and said, "We're taking you to the clinic." The nurses at the local ARCare clinic, took blood samples and looked at them. One nurse said, "this microscope must be broken, let me try another." Soon after that, she grabbed a doctor and he said, "We're getting you transport, Josh has to be taken to the hospital now." That's when we found out this disease was in his body. (Please keep in mind, these are not precise quotes.)
After that, there was 9 months of going back and forth between hospital stays and home. My mom still had Jake and our sister, Faith at home to take care of. I live in Ohio, but went home for the first 2 months of this ordeal to help mom so she wouldn't have to leave Josh in those first critical weeks. The doctors had said if we'd waited any longer to get him into the hospital, we wouldn't have him. We've had him for almost 3 years since the original diagnosis. We're now on the verge of losing him again. We have no time frame. We could have weeks with him. We could have months.
After the first month of his treatments, he was in remission, but still on chemo and other meds for 8 months after. He was completely done by Christmas that year. Our greatest Christmas gift: the leukemia was gone and we had our son/brother alive, well, and at home. We lived with regular doctor visits for checkups but I never thought we'd be hearing the words "It's back" after almost 17 months past that Christmas.
May 13, 2013 was a regular scheduled quarterly visit to the hospital. Tests were taken to make sure he was clear; he was not. That week he was hospitalized and started chemo treatments all over again. This time we were also going on a bone marrow waiting list. I'd taken the steps needed to become part of where you request a kit, follow the instructions and send the kit back for the organization to get you tested and put on a national bone marrow registry. Faith and Jake were tested to be matches as siblings can sometimes be. No luck. With waiting for an exact donor to surface, Josh was going through the chemo and other meds again. The other meds usually fought the effects of chemo or the effects of each other's negatives.

Finally, come around August/September we were all ready. Josh was at Dallas Children's for the transplant, was feeling good and we had our donor. Thank you to whoever that was. (ACH stopped doing bone marrow transplants and had sent him to Dallas for this procedure). The bone marrow transplant was a success and he was released to the Ronald McDonald House about a month after. They could not go back to Arkansas just yet. They had to have at least 100 days of care at Dallas Children's. Thankfully I have friends in the Dallas area that would come visit Josh and Mom. Thank you Felicia and Karl!
It's January 2014. Doctors said Josh is ready for ACH to take over his care again, but they wanted to do a couple more procedures to make sure all was good. All ended up not being good at all. They did a lumbar puncture and bone marrow aeration, along with a CT scan and GI scope. CT scan were because Josh had seizures due to extra low magnesium in his system. That came back fine. GI scope was done to see why his stomach had been acting up (He had ended up with pancreatitis in his first year at the hospital and his stomach hadn't been right since.) That came back showing his stomach was inflamed and not digesting food properly. They prescribed him 2 days of clear liquid diet with a liquid med that would help that problem. The other two procedures is what stopped all things again. The puncture showed that the leukemia was back and in Josh's spinal fluids. The doctors said it is aggressive and incurable...this just cannot be.
This is our typical teenage boy. Our son. Our brother. The miracle baby. The youngest of 5. This can't be happening to him. We received this news on January 7. It's been a non-stop emotional rollercoaster ride. Worse than the first. We have no time line, just day by day. It hurts. It's emotional. We're all ok one minute, but if we let ourselves sit and think about nothing, or even just reading, creeps in our thoughts. Then we're ineffective in whatever we're doing. It's the anguish of losing such a good and decent young man.
It's the anguish...anguish. Satan is the ruler of anguish. We strive to push that and him aside; to say our prayers to the Father, the Doctor, the Omnipotent. Of course it's incurable. To man. To God, He is bigger than our battles, than our diseases. He does have His will however. There is always a reason for certain outcomes in life. We don't know what those are, otherwise we'd be God Himself and we are not. We pray for strength for Joshua, for ourselves. For God to give us Josh's life and not take him Home yet. We have to be ready for whatever the outcome.
"God so loved the world that He gave His only Son that whosoever believes in Him should not perish but have everlasting life." -John 3:16

Update: We lost Joshua to the disease that he'd been fighting against for almost 3 years on February 18th, 2014. The money that has been raised so far will be going to medical bills that seem to keep piling up. Mom is looking at almost $15,000, if not more, due to medical expenses not being covered by Josh's insurance. Mom is also still in need of a car, but the cost of the bills is really what we have to get rid of. If you've donated before, thank you. If you want to donate again, thank you. If you haven't donated before and you feel like you should, thank you. If you want to donate but to send a check or money order instead, please contact me through here and thank you.
Josh is now in a better place with no medicines or machines, tubes or pain. We love you, Josh, and we miss you terribly, but we know you're well.
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Sean Alexander Jones 
West Point, AR
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