TAYYIB's Page

Welcome to Tayyib's Web site. This page is intended to help our family and friends keep up on Tayyib's treatment for Clear Cell Sarcoma of the Kidney (CCSK).

Tayyib was diagnosed with this childhood cancer on July 17, 2003. Since then he has undergone surgery (July 21, 2003) to remove his left kidney and the cancerous tumor that was the size of a grapefruit attached to the kidney. During surgery, he also had a Hickman port placed into his chest, under the skin, that feeds directly into a main vein. This allowed the medical staff to easily take blood from him and also allowed an easy way to feed the chemo treatments into his body.

His diagnosis after surgery was CCSK, stage 3 - focal anaplasia. From the cell biopsy they discovered that his cancer had spread to the nearby lymph node in a small area, so that is how they came up with the final diagnosis. Because the cancer was found in the nearby tissue to the kidney, he had to also undergo 7 days of radiation (August 4 - 12, 2003)and as of Thursday, January 29, 2004 completed his 6 months of chemotherapy, which this type of cancer called for in treatment. In addition, as of March 5, 2004 he is in remission. On March 10, 2004 he had the Hickman port removed.

His prognosis is good. Almost an 80% 6-year cancer free survival rate. However, his type of cancer has a higher recurrence rate than other childhood kidney cancers. It can take up to 10 years to reappear in the abdomen, brain or bone. Because of this fact, Tayyib will need to undergo many tests, CT and bone scans throughout his childhood to make sure there is no sight of the cancer recurring in his body.

Journal

Thursday, February 12, 2009 11:27 AM CST

5 YEARS CANCER FREE! Tayyib's checkup went great and he got another clean bill of health. Dr McManus' nurse Danine even got us in early to hear the test results so we could spend the afternoon shopping for a new Wii game in honor of this great event. Tayyib will no longer need to have a chest x-ray as part of his yearly appointments at Marshfield Clinic. I had a really good talk with Dr McManus about the benefits vs the risks of continuing multiple tests since he has reached a milestone. What we ended up deciding is that Tayyib will continue to have blood, urine, ultrasound and echo cardiograms on an annual basis but we will not pursue anything more invasive unless he has some symptoms we need to investigate. The benefit of being absolutely sure he is cancer free doesn't outweigh the long term benefit that he will not have more build up of toxins in his system that could lead to a secondary cancer.

Tayyib still hates having blood drawn but was very proud of himself that he didn't cry after the technician told him that she had seen teenagers who would cry and throw fits getting their blood drawn.

We are once again involved in St. Baldrick's Day taking place at the Stoney Creek Inn in Rothschild, WI on Sunday, April 5, 2009. If you haven't seen the event before it is very fun and entertaining. Over 100 people have their heads shaved bald to raise money to fund childhood cancer research. Our goals is to raise $57,500 this year. Check out the web site at: http://www.stbaldricks.org/#

Take care! and Happy Day.

Laura

Hospital Information:

Patient Room: HOME

St. Joseph's Hospital
611 Saint Joseph Ave.
Marshfield, WI 54449-1898
715-387-7667 - Peds Unit

Links:

E-mail Author: lketchum@uwsp.edu or aczciftci@hotmail.com

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