Lilly's Journey

Friday, December 17, 2010

So Lilly broke out all over her little body with hives after the blood transfusion and now her platelets dropped so she has to go back to Hershey today to check out the rash and possibly have a platelet transfusion.

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Lilly's Story

Lillian was about to turn 4 months old when we took her to her pediatrician for her well baby check up. Her doctor felt her abdomen and told us that her liver was too large. Normally it stops at the rib cage but hers extended into and across her abdomen. He decided to order an ultrasound to make sure it was her liver and see what was going on. On the ultrasound, they found a tumor and immediately sent us to Hershey. We went in for a CT scan and then were sent to the Pediatric Oncologists office to wait for the results. We had no idea what we were going to be told. She had been so happy and healthy. You would never had guessed that anything was wrong. Thank God for an astute pediatrician. The doctors told us she has Stage 4 Nueroblastoma. There is a large tumor on her left adrenal gland and a smaller tumor on her right adrenal gland as well as several tumors in her liver and lymph nodes. Over the next 2 weeks she underwent many tests. FIrst there was a bilateral bone marrow biopsy and then surgery to biopsy the liver and insert a Broviac Catheter into her chest. Then we had an MIBG scan and a bone scan. We came into clinic to meet with her doctors and discuss her test results and treatment plan. The bone scan showed it had spread to her bone, specifically her skull bones under the eyes and the back of her head. She is considered Stage 4 Intermediate risk. Her case is very rare and has been seen only 45 times before. Her treatment protocol is 4 cycles of chemo and then reevaluation. Depending on how it works she may need more chemo and eventually surgery. Please keep our sweet baby in your prayers.

Lilly's Journey

Friday, December 17, 2010

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Neuroblastoma is a very rare cancer

Neuroblastoma is a pediatric cancer

The cause of Neuroblastoma is unknown