Kylee is my beautiful and bright 11-year-old daughter. She loves to travel and has had many talks with me about visiting the country of Romania, which is where our family is from. Kylee aspires to become a baker of fine cakes and pastries, although, with her witty character, she could make you laugh in your lowest moment.
She has had one heck of a ride the last four months. She was rushed to the ER on February 28th, 2018 in excruciating pain. After 8 hours of exams and x-rays, we were delivered the news that she had a mass inside her liver that had ruptured. The rupture had caused internal bleeding in her stomach and the doctors at Providence Medical Hospital could do nothing further for Kylee.
The night of February 28th, the doctors reached out to OHSU for an emergency transfer request, to get an immediate blood transfusion and surgery set up, as her loss of blood was so severe that they gave OHSU a very urgent warning on only having an hour window to get Kylee the blood transfusion as we were racing against time. However, before they could do a biopsy to test the tumor to see if it was cancer or not, they had to stabilize Kylee, which meant to give her the blood transfusion immediately and stop the internal bleeding first and foremost with surgery.
They immediately went in to immobilize (obstruct) her blood vessel that was supplying the blood to the mass in her liver, but after a couple, long days later, Kylee’s lungs began to fill up with blood and other fluids, inhibiting Kylee’s ability to breathe. This led to yet another urgent and immediate operation to insert a chest tube into Kylee’s lungs in order to pump the fluid out.
Kylee was unable to eat or drink anything at all for the first 5 days straight, it was so hard to sit back and watch all this being done to my baby! I felt so helpless, and so bad as every time she woke up she was begging everyone and anyone for a sip of water. Her poor little lips were so dried up and cracked. The nurses attempted a tube feeding that only resulted in Kylee profusely vomiting it caused her so much more pain.
Once Kylee was stabilized the doctors were able to go in and complete a biopsy of the tumor. Another few days went by and Kylee was getting better, moving around a bit and well enough to start eating solids.
As we began to see some light at the end of the tunnel, another wave of shock was delivered. On March 14th, we learned that the tumor was indeed cancerous (this was a complete shock to us all, since we were 100% guaranteed by one of the surgeons and a doctor that was present while we were discussing her internal bleeding results at Doernbecher. The Surgeon stated that the tumor was a benign tumor not malignant, so for weeks in my mind I was reassured and set on my Daughter not having cancer. The trust I now had for the surgeon and doctors there went out the window. 8 of the surgeons said that my daughter did not have cancer, so when he came to deliver me the news it was he alone, (no meeting) he didn’t bother asking Kylee and I if we wanted someone else present for support. He just wakes me up and he states: I wanted to let you know that I was wrong on Kylee’s mass that she has in her liver the results came back, I asked what do you mean? He then stated: Kylee’s tumor is malignant; it’s a cancer tumor and a very rare aggressive growing one. I literally went into a mental shock. I couldn’t even utter one word back to him; I was so frustrated, as in my thought that was impossible. (Well never again will I believe another word out of a doctor’s mouth until I see results and facts). I literally stood up and walked out of our room. He said make sure to be back here in 30 min. as we need to get her moved up to the cancer unit and talk about treatment that Kylee now had to under go!
Being a single parent with full and sole custody, raising both Kylee and her sister Jasmyne, on my own and on a sole income, has not been very easy. Now with no income and assistance of $500 a month with no child support we are not making it at all. I was next to Kylee’s bedside immediately 4.5 months ago and I’ve been here ever since that dark Wednesday. I’ve been out of work for 4.5 months; I’ve had no choice but to reach out for help. I’ve always been a strong soul, independent and self sufficient so this is really hard for me to even do. Our entire world has been turned upside down. This journey, in and out itself is dark and can appear hopeless at times.
Being admitted to OHSU, Doernbecher, the doctors here have indicated that they’ve only seen a handful of these cases in adults but none of these cases in children like Kylee. On 3-17-18 they named the cancer- Undifferentiated Embryonal Sarcoma of the Liver. The research and available cases are limited. They have not been able to tell us the stage Kylee is in as it is an aggressively fast growing tumor. Because of the rupture, the cancer can spread to her lungs and other stomach areas.
We are asking everyone that has it in their hearts to please pray and we thank you so much for all of the support.