Written by Emily’s mother:
February 9th 2012; Just one week after Emily’s 12th birthday at a weekend sleepover birthday party with 11 of her friends laughing, giggling, and dancing to the wee hours of the morning to the Dance Wii, Emily’s life changed with a statement to me after taking a bath. “Mommy, I found something weird. Ive got a bump on my tummy. Look…”
After two hospitals, three different doctors and many tests later, that night, I got the phone call I was promised by one of the Drs. when we finally left Kaiser Roseville. I was told she had a mass in her abdomen, which later that week received a name. I was told it is very rare for children and this Dr (who would be retiring that next year) had only seen and treated one other child in his career.
I heard “low percentage rate of survival” and “life threatening.”
It’s name is Pediatric Undifferentiated Liver Sarcoma.
It was a solid tumor, the size of a large grapefruit, and growing on the outside of her liver. It was so large it had pushed her liver over to the other side of her belly and had set up house and needed to have chemo put in her body to stop it from growing and try to remove it successfully without tearing and and leaking inside her body.
So, I then asked if she can die from this. His reply, “it is life threatening like I said.” Then I asked, “But is this doable?” I got the answer I needed to hear and never, not once did Emily hear from me that she had low odds of surviving what she was about to endure. She did endure eight months of grueling aggressive chemo.I got to be the lucky one to inform her what was with all the tests and what we were going to do with that lump in her belly.
She no longer had a birthday party memory fresh in her head. Wednesday night church youth group was in the past too. At school her 6th grade classmates had to see her desk empty for the rest of the year.She had to be admitted to the hospital first thing Monday morning and go to surgery to get a broviac put in her chest to use for chemo, blood work (taking out and Putting in her) . All meds were to be administered into her also. she had those two tubes hanging from her chest for 8 months and not to get wet!
She lost her hair and her appetite. she shrunk to a mere 78 lbs. and had to have a NG TUBE put in her nose to get nutrients and calories. She got severely sick. the tumor did not like the chemo. but the chemo sure liked that tumor and fought to kill it and her. her whole body ached and her back became very sore. she would ball up in the hospital bed and not move for hours just groaning. she completely shut down. stopped talking and getting up to walk. she would refuse. she was so mad one time that I made her walk outside with her IV pole to get some fresh air instead of watching her cartoons, that people stared at her because of the look of her. one lady asked is she OK? I said no but she”ll understand later this was good for her.
Emily was such a happy child and then became a child of nothingness. no emotions would show.
Two months into her aggressive chemo, she had the 8hour scary tumor removed and was a success! But continued to endure the chemo treatments until oct of that same year. I almost lost her a month prior when she got Sepsis. Blood infection from her broviac. She was almost done with treatments and we had to be admitted for 31 days.
But Oct 5th 2012 they told me I could, with clear conscious, tell everyone she is CANCER FREE!And I did, that is until April 28th 2014. I was told the aggressive chemo she had before has side effects and she had gotten one and the worst thing possible.
Acute Myeloid Leukemia (AML) and needed to be put incomplete isolation for about a year or more and get a bone marrow transplant (BMT) in San Francisco after summer and when we find a perfect donor match. I had to do the worst thing possible and tell her she had leukemia now. I crushed her whole life that day. she was finally mad and we did as we were told and it was a very long road we lived. she lived all summer long in Roseville Kaiser and once again got Sepsis and this time I really got so scared she wasn’t going to get through it, but she did and we moved her to UCSF for 10 long months of extreme isolation.
They killed blood cells in her body awaiting the BMT. she received her news. a match from Germany, 25 yr old young woman. Emily got 340,000,000 (YES MILLION) stem cells put into her September 5th, 2014. they had it flown over night from Germany!
She became a different Emily while dealing with this cancer. being sick was a given but she said her mind about things and became a very outgoing young lady. she met many of their teachers and therapist. Art therapist was her favorite and she even now has some of her art on the walls in the new UCSF childrens hosp that opened feb 2015. quite an honor. she started her 9th grade there, they had a poet teacher, and a music teacher. she learned how to play a little on the electric guitar. she enjoyed all these “extras” she was offered while being stuck in isolation and sickness every day.
Nov. 2014 we got to go home but stay in isolation. Not until the next September 2015 did she get to live as a child live. she went back to school. High school awaited her and she is well. she is spunky yet quiet, she speaks her mind about things.
We recently found out something very important. Emily was born with A positive blood type. Well it has finally changed. We were told her blood type after being tested has become 100% DONOR. She is now O positive!! So cool.
This is Emily and her words to me one day, “mommy, I don’t understand kids at my school. they dont really like themselves and are insecure about themselves. I don’t like what has happened to me the last few years. But it has made me who I am today. And I comfortable with myself, I like the person I am.”