Honored Kid

Sophia S.

Age 13
Sophia S. Kid Photo

Location

Winnemucca, NV, US

Diagnosis

Germ cell tumor

Date of Diagnosis

February 2014

Status

In remission

Treated At

UC Davis Children's Hospital

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My Story

Sophia’s pain in her abdomen began a few months before her second birthday November 3, 2013. Every time she would go to the bathroom, she was in so much pain while urinating, saying “ Owie Owie Mommy” I took her into see our doctor and he prescribed an antibiotic in September on a Friday and told us it was most likely a UTI. We started the medicine right away and she got really sick over the weekend. I thought it would get better with time, but it only got worse with a high fever of 103-104 all weekend. When she was experiencing this pain I had to hold her the whole time, as if I put her down she would complain of her legs, tummy, and private area hurting. Then Monday morning she was just fine, back to her normal self. I didn’t think much of it but still called the Doctor to see what the results of her urine test were, they were negative and they told me to stop the antibiotics, so I did. Sophia seemed to be better and was being herself until January 28, she started hurting again. It was a Tuesday, so I took her to the Doctor again and her pee looks good, yet again was given an antibiotic to treat a UTI. We tell Sophia, “Let’s take your medicine to make your tummy feel better.” She continues to be in pain all week, she still takes her medicine for five days and she just gets worse again having a fever of 103-104 all weekend, her whole body was shaking. I give her some Tylenol, which seems to help with the fever but not her abdomen pain and pain while urinating. Now it’s Superbowl Sunday February 2, 2014 after giving her Tylenol and the antibiotic for 5 days I take her to the ER. I make sure they know that her urine test 6 days ago came out negative, but they still did another urine test with a catheter and as always the test is negative and everything looks great, no UTI or bladder infection. I ask them to please do some more tests, but they don’t and send us home, telling me she is most likely gassy. The doctor tells me she looks fine because she was sleeping on me. What I tried to explain is that it is not normal for my baby girl to sleep on me like this; she would never just fall asleep on me. She might fall asleep for a few minutes, yet then would wake up in excruciating pain. Nevertheless the doctor encourages me to give her more Tylenol, Ibuprofen, and gas x. We go home and I do not do any of it as it does not make any sense to me. Sophia continues to hold her pee until falling asleep, then waking up a few minutes later when she would start to pee. She would not go to the bathroom so I put a pull up on her after she had been potty trained for months. And every time this happened she only had a little urine as she was in so much pain. The ER doctor told me to follow up with our Doctor so I called the next day yet I could not get in as I had no money to pay up front and no insurance, as my husband had been laid off from his job in November and was just beginning a new job on February 13. Sophia got a little better, yet still complaining when using the restroom, but still up and running around like a normal 2 year old little girl. So from February 7-February 15 she did not complain! February 16, 2014 it was a Sunday she went down again in so much pain that I had to hold her from 5 a.m. to 7 p.m. She cried for 6 hours in so much pain I did not know what to do. I was getting ready to take the 2 ½ hour drive to Renown Medical Center in Reno, NV when all of a sudden she started eating, drinking, and was up and playing. I call the next day to see if we can get her in to see our Doctor, but no surprise its President’s Day and nobody is in. So I wait until Tuesday February 18, 2014 she is still complaining but looks just fine. We get an appointment with our Doctor and he listens to me for a while and finally sends her for an ultrasound, but Sophia has to fast for it so we wait until Wednesday February 19, 2014 at 9 a.m. to get in for the ultrasound. About an hour and a half later we get a call from her Doctor saying she has a mass the size of a softball below her bladder, he wants us to go straight to Reno, NV. When we arrive to Reno, NV 2 ½ hours later she is admitted right away, they do a CT scan and tell us she has a tumor and not much more except that they are going to send her to UC Davis Medical Center in Sacramento, CA. We have to wait until the next day Thursday February 20, 2014 as it was late already upon arriving to Reno. While at Renown Medical Center in Reno, they did some blood tests and tell us there are some cancer cells and pregnancy hormones called HCG. I did not understand why. I asked, “Does this mean she has cancer?” They responded, “Not necessarily.” We had to wait to do more testing in Sacramento, CA. We finally arrive via care flight to the UC Davis Medical Center at around 7:30 p.m. Upon our arrival they encourage us to get some rest. It’s now Friday when we talk to the Doctors and they tell us that she has cancer. It will not be until Monday until they can go in and look and see what they can do. So all weekend they did all kinds of blood tests and told us she will need chemo therapy. They encouraged us to let her be herself to play and have fun while she continued to have her vitals taken and is poked and prodded for more blood work. On Sunday we find out that they are most likely going to take the whole tumor out, as well as her left ovary. Monday February 24, 2014 is finally here and they did remove the whole tumor and her left ovary. Sophia slept the whole day and all night woke up for a bit at 4 a.m. told me “Momma I love you so much,” gave me a kiss and went back to sleep. Around 7 a.m. Tuesday morning she got up was hurting a little bit, but she ate a little bit, slept for a little, and woke up wanting to sit up which she did. Later that night she was sitting up good and even going to the bathroom to pee! And no pain! YAY! The third day after surgery she was up walking, dancing, and playing in the playroom. Wow, she is doing amazing and the fourth day we get to go home for about 12 days before having to travel back to Sacramento to begin chemo therapy. Sophia did three rounds of chemo therapy, had her port removed in June 2014. And has blood test every month and ct every other month. 
On Des 17th 2014 she had a Ct scan and they found another tumor on the left side where her first tumor was. She had surgery on Jan 8th. 2015. Her tumor was stuck to her rectum and uterus. Surgery took about 8-10 hours. 
The tumor was benign!! 
Few months after her surgery we where told her second tumor was caused by her new diagnosis called 
(Growing Teratoma Syndrome) it is rare and she is one of 5 kids diagnosed and she is the youngest one in pediatric history dignosed with Growing Teratoma Syndrome. 
Her scans have been clear since her second tumor was removed.
Today she has MRI and blood test's every 3-4 months!

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