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Honored Kid Kaila E. Age 14

Kaila E.'s Photo
Location
Las Vegas, NV, US
Diagnosis
Rhabdomyosarcoma
Date of Diagnosis
January 2015
Status
In remission
Treated At
Children’s Specialty Center of Nevada

Message

Kaila came to me in November 2014 about a bump she had inside her nose. You could not see it when you looked at her but it when you looked inside her nose, you could tell something was there. I took her to her pediatrician in December and was told that it was allergy related and to give her some over the counter medicine but it could also be an ingrown pimple. I was not convinced of their diagnosis and continued to watch this bump. It started getting bigger and was now becoming a large mass around the base of her nose. I contacted my ENT at the end of December and was able to get her in to be looked at on January 6th, 2015. The Dr. had no idea what was going on but became very concerned and ordered a CT scan STAT to be done. We had to wait until Friday because the facility only did pediatric patients on Fridays & Mondays. She had the CT scan and we were to go back to the Dr. with the scans in hand as soon as she was finished. By Friday evening Kaila was admitted into the hospital to have the bump drained. Her Dr. still had no idea but after looking at the CT scans, she could see just how big this bump was and in her gut knew she had to get an answer. The surgery went well, but even after draining it, she could still feel a hard nodule. She wasn't able to get this out at the time but had sent off what she had to pathology for testing. She saw Kaila everyday until Tuesday of the following week to see how she was doing. On Wednesday, January 14th, I received a call from the Dr.'s office asking us to come by that evening to talk about the results. I didn't understand why she couldn't tell me over the phone but wasn't concerned as Dr. Schwartz was the kind of Dr. who like to be thorough. My husband & I showed up at the end of her day. She came into the room, put the file on the table, sat down & was almost in tears when she told us the news. Kaila has been diagnosed with Embryonal Rhabdomyosarcoma. We just sat there in disbelief. The tests are incorrect, she does not have cancer. Everything in my body went numb. I couldn't hear anything & I just sat there staring at my husband with tears running down my face thinking this is a horrible nightmare and I need to wake up. My husband was looking back at me with tears streaming down his face and the look of complete shock. Dr. Shwartz sat with us for almost 2 hours. She had already reached out to a pediatric ENT to do more surgery as Kaila had a tumor at the base of her nose & one in the nasal cavity. We met with Dr. O-Lee 2 days later. He was able to provide more information about Rhabdomyosarcoma. He sat down with Kaila to discuss what she had and how they would have to treat it. He had already reached out to Dr. Alan Ikeda at the Children's Specialty Clinic of Nevada. We met with Dr. Alan and he discussed the game plan that lied ahead for us and Kaila. Her future consisted of Chemo treatments, radiation treatments, a couple more surgeries, MRI's, PET Scans & Ct scans to name a few. Those were the scheduled things she would have. The unknown such as long hospital stays and blood transfusions would also be a part of her routine but those would happen randomly and you never knew when. We were always on fever alert. If she started running a fever and it hit 100.4, off to the ER we would go. Her long day treatments were the hardest. They would make her sick for days and she wouldn't eat. Every chemo treatment was hard knowing of the poison that was being put into her body but the long days were the hardest. She would cry and get so depressed on the mornings of long day. Knowing how it made her feel during treatment and how sick she would be after. It broke my heart and made me angry that this is what she had to go through. Kaila had long, thick, beautiful hair - down to her booty. She always had long hair and we only would cut it to keep it healthy. Two weeks into chemo, I was brushing her hair when it just started to come out in long strands. I fought back the tears as I didn't want Kaila to get upset by this if she saw me crying. We decided to get her hair cut into a cute little bob as she always wanted to try something different but we never did. She was able to have this for a week before her hair fell out almost completely. We attended a St. Baldricks event that was being hosted by the Children's Clinic in February and she shaved her head with her daddy by her side while he shaved his head. Her brother also shaved his head in support of her. It's been almost a year now and we are thrilled to say that Kaila has completed her treatments. Her last day of Long day chemo was December 17th. She is currently in remission and we couldn't be happier however we do not take anything for granted. She will continue having lab work done to check her counts and to make sure she isn't fighting any sickness. She will also continue having MRI's, CT scans & PETS scans done throughout the year to make sure nothing has resurfaced. This past year has been a roller coaster ride of highs and lows. Her fight continues even though she is in remission, a cancer patient is always fighting. They are treated with medicines that are designed for adults so now they need to look out for side effects from these treatments or possible secondary cancers that may occur. We need to find a cure for our children. No child deserves to go through this. With your help, we can continue getting the word out about Childhood Cancer & raise funds to find a cure. Thank you!

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