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Posted by Jeff and Laura Tubo (207.87.51.122) on 09:17:43 18/03/04
Most of you visiting this site have been abreast of Joey s ongoing care since he was diagnosed with Neuroblastoma. For those who have not, we are attempting to summarize his treatment to date. We will then update this site on a continuing basis to keep our many supporters informed. We are truly blessed with a following of faithful family and friends. The support and love we have received is overwhelming. It is by the strength of so many that we are able to believe in his recovery. We hope this site will help all who love Joey feel included in his care.
We took Joey to the ER on February 18, 2004, on the advice of our pediatrician. A few days prior, Joey had been constipated and had general body aches. When he refused to walk on the morning of February 18th, we were advised to take him to ER for a workup. We were admitted that evening when the orthopedic department felt a bone scan was in order. He received that the next morning. The result suggested a bone infection in his right leg. He was started on antibiotics and additional testing was ordered to correlate the bone scan result. A tumor was noticed near his left adrenal gland. This was the origin of the Neuroblastoma. One week later, following his biopsy, he was diagnosed with Stage IV Neuroblastoma. We remained in the hospital for 5 more days. By the time we left on March 2, 2004, he had received his first round of Chemotherapy.
Joey tolerated the Chemotherapy well. He did not have much appetite, but he did not appear nauseated. We understand that medical science has made great strides in anti-nausea medications. This is a blessing to us. Joey s frame is slight, and weight loss is a concern. But, he has maintained his weight so far. This is largely due to Cheetos!
We remained home for one week before Joey spiked a fever, which returned us to the hospital on March 8, 2004. We are told that this is common when the blood counts reach critical lows, mid-cycle. Joey remained in the hospital until March 12, 2004, when we were permitted to return home. His cousins and Uncle were there along with Aunt Rhonda for a hair buzzing party. Joey was losing hair rapidly, and we needed to buzz it for him as it was getting all over everything. We accomplished this and 2 hours after returning home, Joey spiked another fever. This returned us to the ER that evening at 10:00 pm. We remained there until the following Monday, March 15, 2004. Joey is home now and feeling good. We will return for his next Chemotherapy treatment on March 22, 2004, when the second cycle will begin.
Home life is full of challenges with an active 3 year old. As an incentive for treatment, we told him that the doctors were going to make him fast as Flash Gordon. Now, it is a challenge to get him to slow down around the house. He often reminds us that the doctors made him fast as Flash . Cooperation for home care is another issue. We must give oral medications daily, which he hates. In addition, we must care for his Central Line Catheter by flushing it with Heparin once daily and changing the dressing once per week. We must also administer a daily shot in his thigh when his blood counts are low. This is vital to returning his blood counts to a normal range in a shorter period of time. All of this is a lot for our little guy. But, he has been strong throughout. We gain great strength from him. And, we see the benefits of living day-to-day with this consuming disease.
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