Meet Jacalyn

Written by Jacalyn's Mom.
Jacalyn was a normal, healthy child. She ran, danced, played sports and just enjoyed life. The morning of June 19, 2009 Jacalyn woke-up early with me for some reason. She went to the rest room and came out shortly after—telling me that her potty was pink. As it was summer, I suspected a urinary tract infection. I told her to call me if she started to feel weird or if she had any pain and I went to work. I called her Doctor’s office that morning and got her an appointment for later that afternoon. Jacalyn called me at work around 10 in the morning; crying. My mother’s intuition took over—something was not right. I told her to sit tight and let Daddy know I would be there to pick her up in a few minutes. I picked Jacalyn up and took her to the pediatric emergency room. Once we got there they had her pee into a cup; and this time it was all blood. Shortly after that, the doctor came in and started to push down around her belly. He felt something around her spleen and said it could possibly be a ruptured spleen, but she would have to have an ultra-sound to confirm it. So Jacalyn went in for her ultrasound and afterwards we sat back in her room. She was happy and just hungry. She couldn’t eat anything because we didn’t know what was going on at that time. Approximately 45 minutes after her ultrasound was completed the doctor and nurse came in. The doctor asked to speak to me in the hall. I went out with the doctor and we went to a side room. He asked me sit down. “Jacalyn has cancer, we believe she has a type of tumor called Wilm’s Tumor, which is a form of kidney cancer. We have called-in the Hematologist/Oncologist and she will be here shortly. She will have more information about the cancer for you, but for right now please know that Jacalyn will be having the tumor removed. We have contacted another hospital and she will be transported down there in about an hour. Surgery is scheduled for first thing in the morning. Do you have any questions?” My heart stopped. My oldest baby has cancer—which is not the word any mother ever wants to hear. The word cancer itself scares most adults, let alone children. How was I going to tell her? I cried, called my husband, my parents, then got my composure and went back to tell my sweet baby. I told Jacalyn she was sick, what it was called, and she took it in stride. She thought that it was pretty cool that she was going to get to stay overnight in a hospital and asked if she could eat yet. Jacalyn’s dad and grandparents rushed to the hospital to say goodbye and within the hour we were being transported down to another hospital. That night I lay with her awake all night while she slept; holding her, kissing her head, tears streaming down my face. Jacalyn was woken-up early and taken down for surgery. Her surgery lasted four hours. They removed a tumor the size of a large grapefruit, her left kidney, the lymph nodes around it and placed a port. Her tumor had erupted before surgery—that is why she had all the blood—so there still were free floating cells but, over-all, the doctors thought the surgery was a success. Two days after her surgery, Jacalyn was already up playing table hockey, painting staff nails and being a normal kid for the most part. Jacalyn started her radiation on July 4, 2009. The next day she started piggy-backing her chemotherapy with her radiation. Jacalyn went through ten days of radiation, and nine months of chemotherapy. Jacalyn lost all of her hair and the chemo took a lot out of her on some days but, most of the time, she had a smile on her face. She had every intention to beat this demon and move on with her life. Jacalyn had no evidence of disease in February, 2010. Jacalyn had another surgery in March, 2010 to remove her port. The Spring, Summer and Fall of 2010 were amazing. Our family went to the beach many times, played in the sun, went camping and just enjoyed life. We enjoyed every minute of it. Jacalyn’s hair started to grow back and she was well on her way to feeling good again. On December 14, 2010 Jacalyn went in for a routine echocardiogram. The next day her doctors called and scheduled a CT scan because the echocardiogram showed some mild shadowing on her heart and they just wanted to make sure. On December 16, 2010 I was at work and I got a call from Jacalyn’s oncology nurse. Jacalyn was at school having her Christmas party. I was told that a new tumor had formed and the doctor wanted me to come in right away. For the second time my world collapsed. I went to see her doctor and she gave me the information. The first time Jacalyn had Wilm’s Tumor she had a 95% chance it wouldn’t come back and she would come out just fine. So that 5% chance hit us and Jacalyn had cancer again. Her prognosis isn’t as great this time. Jacalyn has only a 30% chance that she will remain cancer-free. Jacalyn would again have to have a more aggressive radiation and chemotherapy schedule. That afternoon I picked Jacalyn up from school. She had a great time and was all smiles. She could tell something was wrong. We went to a park and I had to tell her that her cancer had come back. She was devastated. She was just starting to get her life back. We cried together for many hours but in the end she was still resolved to fighting this and beating it. Jacalyn had another surgery on December 23, 2010. This surgery lasted longer by a few hours then it was supposed to. Jacalyn’s tumor had attached itself to her aorta and her spleen. She lost a lot of blood and they had a hard time stopping the blood loss. We almost lost her that day. She spent that day and night in the ICU. We were moved to her regular room on Christmas Eve. Jacalyn was unable to eat anything for a week because they nicked her belly. This was really tough on her. She didn’t handle this surgery as well as the one before. It took a long time for her to recover. We spent Christmas and New Years in the hospital that year. The worst blow, other then the cancer returning, for Jacalyn was that she was scheduled to go on her Make-a-Wish trip to Disney and we had to cancel it because we were in the hospital. That was her goal in the beginning—to beat the cancer so she could go to Disney. During Jacalyn’s surgery they were only able to remove about 70% of the tumor. The tumor was vascular and fell apart, sending more cancer cells free floating throughout her body. They removed an accessory spleen that the tumor was attached to and the remaining 30% of the tumor was attached to her aorta. They were unable to remove it because it’s such a vital area and the wrong move could result in some very bad things. Two weeks after Jacalyn’s surgery she started her chemo regime. She is on ICE therapy, three very powerful chemo agents. Jacalyn has to have them all in-patient in the hospital and her schedule for chemo is six days in the hospital every third week. Because Jacalyn’s counts have been so low she has been delayed many times. The original chemo schedule called for two years worth of treatments, but because of these delays were looking closer to almost three years worth of treatment. Jacalyn also had 14 days of radiation this time as well. Jacalyn lost her hair after the first chemo treatment this time. It hit her a lot harder this time. She was older and her interest had changed. She didn’t think she could be beautiful without hair—even though she is. The kids stare when she goes places; and some make comments. This breaks her heart. Emotionally, this time around, has been a lot harder on her. Jacalyn has a great support network filled with many friends and family. Jacalyn has two sisters—Josephine and Julianna—that think the world of her; a loving and devoted father and mother; three sets of grandparents and many aunts and uncles that all love her dearly. There isn’t a person I know that knows my sweet Jacalyn that hasn’t been touched by her. Even through all the hardship she smiles, she fights, she won’t give up. I draw my strength from her. We feel so blessed that God gave Jacalyn to us and that he made it so we caught the cancer in time every time. We have witnessed many miracles, and we are patiently waiting for the final miracle of Jacalyn being cancer-free forever. If you ask Jacalyn what she wants to be when she grows-up her list is endless at times. Jacalyn wants to be a music star, a dancer, a model, an actress and a doctor. Over the past year and a half, Jacalyn has maintained going to school when she can—and being tutored at home the rest of the time. She started out having cancer as a kindergartener and she is in the fourth grade now—not falling behind once. Jacalyn was voted to the student council last year even though she didn’t get to go to many meetings. She participates in Girl Scouts, swims, takes dance lessons and performed a solo performance at the recital this year. Jacalyn is also a Grand Ledge cheerleader. If you were to look at Jacalyn on a normal day she is smiling, running and being a kid even when she feels sick. Jacalyn is my hero. We still have about five months left in her treatment. With each one done we get closer to our goal—to be cancer-free. Jacalyn is full of smiles, full of love, full of faith and full of hope. This time around it will be different because my Jacabean is a fighter.
Images by: breathless expressions photography