When It All Started
During my pregnancy the first 6 months were uneventful. As it progressed there were concerns. At 6 months labor was induced to see if Justin could "handle" labor because of his heart rate. The last 6 weeks I was in the clinic 3 days a week with "non stress tests". The heart rate was just not perfect. On Monday September 26, 1994 I was admitted to the hospital to induce labor. I was given injections and gels to "help" me go into labor. With no signs of him coming on his own free will, my water was broken Friday September 30th at 8am. I tried all day to have the little bundle of joy. Justin was taken by C-Section at 2:21am Saturday October 1, 1994. Justin Taylor Hedrick was 8 lbs 13 oz and 21 inches long. Being born in an Army hospital in Ft Hood Texas where the normal birth count is 350 per month; they had no means whatsoever to care for sick newborn. He was taken into an acting neonatal room where another preemie was being attended to and later did not make it. I wasn't even able to see my child for hours because of the care to the preemie in the room. I was finally allowed to see him through an oxygen hood. They told me that he was possibly suffering from Meconium Aspiration. He was put on a jet plane from the base at 6pm that same evening and flown to a San Antonio hospital. At the ripe old age of 24 hours old the hospital in San Antonio told us he had a heart murmur. He also had red marks on his forehead and arm. During an ultrasound it was discovered he had a mass on the right adrenal gland the size of an adult fist. Surgery was done October 7, 1994 to remove the mass and the right adrenal. Justin was only 7 days old. The red marks were also biopsied and found to be nothing. We were told that the left adrenal had a small "bleed" on it. Justin's dad being active duty Army; was asked by the doctors at Lackland AFB to relocate from Ft. Hood so that Justin could receive treatment. We were already 350 miles South of home and didn't want to go any further from home. We sought a second opinion at Scott & White Hospital in Temple Texas. Scott & White being only 30 minutes from FT. Hood agreed with the treatment plan. He was diagnosed with Stage IV Neuroblastoma. Due to the advanced stage of disease, the original protocol was 12 months of chemo. We met with the Hematologist/Oncologist at Scott & White and began our journey. Within 30 days of the first surgery the left adrenal gland tumor had grown as large as the first one. His liver had so many tumors it looked like a "bag of grapes". The Monday after Thanksgiving Justin had his second surgery to remove the tumor and the left adrenal gland. The Monday after that was the first chemotherapy. Everything seemed to be going well. We were released from the hospital after about a week and went home. The next day Justin was lethargic and ash gray. We took him back to the hospital. He was admitted and within a few hours was in ICU. He was kept comatosed. He was bleeding internally from the bottom end. No scope could find where it was coming from. He was swelling; his incision became infected and was left open and packed with wet gauze to heal. All the blood vessels in his abdomen burst, he was polka dotted along the whole chest and stomach area. He turned yellow. He was on a morphine drip, a respirator, a lung suction tube and several IV's as well as under a heat lamp. On Christmas Eve 1994, around 7am the hospital called and said Justin wasn't doing well, come right away. When we arrived at the hospital he had already had 3 cardiac arrests and was given about 48 hours to live. The funeral was planned. Boy did he make a comeback! He defied all the doctors and shocked us all. Our stay in Pediatric ICU lasted about 7 weeks and we were finally released from the hospital on February 3rd 1995. We came home with a feeding tube, injections, prednisone and about 7 other meds along with a home nurse. The first chemotherapy treatment killed all signs of cancer, but almost killed him too. From February to May 1995 he received 5 more chemotherapy treatments and 3 more surgeries. He had numerous bone marrow tests, he has scars all over his body from biopsies, surgeries and central lines In May 1995 we were told he needed no more treatments. What a happy day. It was finally over, we thought. In October 1996, Justin's dad was stationed in Oklahoma, which is our home. Currently we see the Hematologist/Oncologist at Children's Hospital twice a year, Endocrinologist four times a year, Cardiologist yearly and the pediatrician just about monthly. The veins in his abdomen are bulging on both sides. I nagged every doctor we saw about the veins continuing to worsen. Finally when the pediatrician noticed them in his neck he referred us to the vascular team at Children's Hospital in OKC. Two different times they did ultrasounds of every organ in his body and were perplexed, they just didn't know what was causing this. They said it just had to be from all the scar tissue and previous problems. Finally after wearing down the pediatrician again in February of 2003 he sent us to an adult Cardiovascular Surgeon at the OU Medical Center in OKC. Within one hour her ultrasound tech told us he did not have an Inferior Vena Cava, therefore all the veins in his body are doing the work of what the IVC is supposed to be doing. The veins continue to worsen every day. A visit to the endocrinologist February 18, 2004 prompted her to refer us to the same Cardiovascular Surgeon and Hem/Onc next month to get their opinions on any contraindications of possibly a trial therapy of growth hormones. Justin is 9 years and 4 months old and only weighs 49lbs. He just grew into size 5/6 clothes this December. His Endocrinologist says he is the most "Special" child, meaning complex that she has ever seen. He takes Cortef 3 times a day for replacement hormones, Florinef once a day and Adderall for his ADHD once a day. He has also recently begun to have allergies. The dentist has told us that he has no permanent bottom teeth to replace the baby ones. This probably caused from the chemo. He has only lost 4 teeth so far. When he was in pre kindergarten he was placed in learning disability classes because of his past medical history. He finished first grade and surpassed almost the whole class with his reading. He is very smart, probably learned it all from the 5 million questions a day! He has the memory of an elephant and the speed of a cheetah. He never slows down. Justin is currently in the 3rd grade and doing well. He remains on an IEP. He does most of his work pretty good, but has to do everything at lightening speed. That is his biggest problem in school, hurry up and get done, which leads to some messy work most of the time. In 2001 he was diagnosed with ADHD. The medication (Adderall) is a miracle drug and he is a different child and tolerable now. He can pay attention in school and actually learn now. He dearly loves playing baseball, swimming, playing playstation, watching TV and teasing his dogs. Next month he will start his 5th season of baseball. He is an only spoiled rotten child but has triplet girl cousins that are 3 months older than he is. During a recent training at work, I heard about Sensory Integration. The symptoms sounded familiar. Ever since he had teeth, he has been chewing. He chewed up his pacifiers, his blankets, then his clothes, now it is his toys and anything else handy. I am currently researching this and hope to learn more about it.