Joey C. - Quilt Finished in 2002

Born: February 25, 1994

Illness: Non Hodgkins Lymphoma Stage 3

Joey's Story

written by mom Melissa

Joey is the second child out of four boys. It seems like only yesterday that Joey was a baby. Joey was constantly sick as a baby. He went to the hospital at least three times a year for high fever of over 104º with nothing else wrong with him. Well that we knew of the hospital never did any tests on while my little boy was getting sick all the time.

Until on January 14th, 1999, Joey was taken to our local hospital for a high fever. This time it reached 107º and the hospital was concerned Finally.), Joey was dehydrated and seemed to have anemia. After four hours he was send to Syracuse University Hospital Pediatrics Emergency Room for a second opinion. Joey was found to be anemic with no cause at the time.

On January 21,1999, Joey had a G.I. series done to see where the blood was coming from. Joey had several tests done and sonograms done because no one could find the cause. On April 5th, 1999, Joey had a barium enema done. The doctors were puzzled because no one could still find a cause. On April 6th, Joey had x-rays done. The doctors thought it was Crohn's disease (inflaming of the Bowels). The hole in his intestine grew within a month. On April 30th, Joey was hospitalized. (The first of many for him.) His blood levels dropped and was in need of a blood transfusion. This didn't help at all.

I will never forget May 4th, 1999. Joey had a biopsy done on his stomach. The doctors removed at least 14 inches that were infected. The biopsy confirmed it. Our nightmare began. Joey has cancer. Joey has Non-Hodgkin's Lymphoma Stage 3. When Joey finally woke up he was on IVs and couldn't eat or drink for a week until his stomach healed. He was hooked up to a heart monitor. The whole month of May, Joey was only home for three days.

On May 10th, 1999, Joey had a Hickman catheter put in for his chemotherapies and blood draws. Joey also had his first bone marrow checked and a spinal tap done there was no cancer there. So the doctors caught it in time, we hope. We had to pull Joey out of Head Start for the rest of the year, as he couldn't be exposed to any diseases. On May 13th, Joey started his first set of chemo. Joey's chemo was to be four sessions every two or three weeks for four or fives days at a time. Dr Sadowitz and his nurses were great with Joey. On June 23rd, 1999, Joey had a Cat Scan done to see if the cancer was all gone. The next 24 hours were very painful, everyone was worried about the results. Dr Sadowitz confirmed... Joey finally hit remission.

On July 12th, 1999, Joey went to the hospital for his last set of chemo. Up until then, Joey had at least ten blood transfusions due to his level dropped too low. On July 21st, 1999, Joey started to have seizures while he was still in the hospital. Dr Sadowitz told us that Joey's platelets were causing it and needed a platelet transfusion. Joey need single donor as he was reacting to the other ones.

On July 22nd, 1999, Joey had to get the Hickman removed as he had an infection at the site. To do this Joey had to be awake thru it, so he was given a local. On September 8 1999, Joey started his first day of Kindergarten. He was able to go for half days if he got too tired. Joey went all day with minor problems. All the teachers looked out for him. Joey started to grow his hair back. He had no medicine to take. Joey just couldn't take any live vaccines for a year.

On October 1999 the Make-A-Wish Foundation threw Joey a party at our local McDonald's for family and friends. Everyone received gifts. On November 16th, 1999, the family went the Walt Disney World for Joey's wish to see Tiger. Everyone enjoyed themselves. For six days we stayed at Give Kids The World Village. It was great!!! Joey really loved it there. Joey hardly got sick in the year 2000, except for minor colds. Besides his allergies.

On January 2001, we bought our first home. Joey started his second year of remission. We thought everything was behind us but was wrong. On September 12th 2001, Joey started to get really sick again. He had a high fever of 104º and complained of stomach pain. Our local hospital diagnosed him with Strep Throat. Joey was put on medicine. Not even a week later Joey wasn't getting better and had a rash on his lower body. This time we took him up to Syracuse University. Dr Sadowitz saw Joey in the emergency room. He is a great doctor, he knew exactly what was wrong. Joey has a rare disease called Henoch-Schonlein Purpura. This is an allergic reaction to a viral infection. Joey will have this for the rest of his life. Also know as H.S.P it affects his skin, kidneys, digestive tract and his joints. It's mainly a rash that's under the skin, it will come and go. Joey has to have check ups, urine and kidney tests every couple of months. Joey is now not allowed to have any sugar food as that will irritate the rash and make it worse. Joey now see Dr Shermun for this disease.

The year 2002 was a blur. Joey had another biopsy done in January this time on kidneys to see if the H.S.P has affected it. Joey was put on medicine to get the inflammation down. Dr Shermun told us that he might have to take the medicine for a few months or for life. Nothing really major happened until December while have changed our lives forever. Joey's dad hurt his back and got pulled out of work permanently.

The year 2003 flew right by. Joey was rushed to the hospital in March for complaints of stomach pain and high fever. I thought our nightmare was beginning again, but to find out Joey just had a bug. Then in April Joey was diagnosed with strep throat again. Joey was put on medicine for this. Dr Shermun was concern for his tonsils but the swelling went down and Joey didn't have to have them removed (He probably will eventually.) Then in July Jamie Sr had back surgery. Our bills have piled up so much that I had to get a second full time job. Joey is now to see Dr Shermun twice a year same as Dr Sadowitz. Also some time that year Joey was able to stop taking the medicine for his HSP. In December I quit one of my jobs. The best thing I ever done.

Now that 2004 is upon us. Joey is starting his fifth year of remission. Who knows what this year has in store for us but we can handle anything. After all the last 5 years have been very hard but we have pulled through it.