Taliyah

unnamed-3“Warrior Taliyah”

This is the story of the bravest little girl I know, Taliyah, who we have nicknamed the Warrior Princess.  It was the middle of February, 2014 when we noticed Taliyah had a really stuffy nose that was causing her to breathe loudly out her mouth. At the time I was sick and recovering from upper respiratory infection, so I assumed she was either sick or had allergies. We tried everything to clear Taliyah’s nose — allergy medicines, flonaze, breathing strips, and breathing steam — and nothing improved her breathing. We didn’t realize the seriousness of her congested nose until we noticed she was suffering from sleep apnea as well.  I had put off making an appointment up until that point because of an insurance mistake during my husband’s retirement from the military.  Once we realized this was more than just a stuffed up nose, I decided to just take her to urgent care and pay out of pocket. The first doctor to check her looked in her nose, ears and then mouth. He said he noticed something off. He went and got another doctor who looked and said it was just adenoidal tissue. He called the ENT doctor who agreed to see us the next day. I took her in to see the ENT doctor, Dr. Henderson, who looked in her mouth, was quiet, looked again, then sat back and said he has never seen anything like that. He claimed it was the largest adenoid he had ever seen. He scheduled her for surgery the following Monday, March 31st, the day before her 7th birthday.

The morning of the surgery we were told that adenoid removal was routine and would take about 45 minutes.  I felt something was off from the first time the doctor looked in her mouth and was speechless, so after 45 minutes came and passed and she had been in there over an hour I started to panic. Irvin was telling me not to worry when a nurse came and told us she was doing great and would be done in about 30 minutes. Another hour past before the doctor finally came out and pulled us to a side room to tell us that it was not an adenoid but a golf ball sized papilloma. He said he removed 98% of the tumor and he thought it was the HPV virus. He explained she would need several surgeries to remove it all. When I went home and researched it, I was devastated.

April 8, 2014, I got a call from his nurse asking her Dad and I to come in. My heart dropped and I began to panic. Being called in is bad news right?  It was the longest couple of hours of our lives as we waited to meet with Dr. Henderson. I will never forget him walking in to the room and crying as he told us that our daughter had cancer. I honestly don’t know much of what he said after that. All I remember is my husband squeezing my hand really tight and the doctor’s mouth moving. He told us that she had Embryonal Rhabdomyosarcoma.

The next week was a blur.  We spent our anniversary at the hospital while Taliyah got a CT, MRI and a PET scan.  The following week we checked in to the hospital for a spinal tap, bone marrow biopsy, surgery to insert a Broviac line, and to start chemotherapy.   During our stay the cancer was officially confirmed as being Stage 3, Group 3, Embryonal Rabdomaysarcoma with intermediate risk. Because her cancer is an unfavorable spot and cannot be removed by surgery it puts her at a higher risk, even though the cancer has not spread.  Her scans, spinal tap and bone marrow biopsy showed no spread of the cancer.  This means her cancer is localized and gives her a greater chance of being totally cured once she goes into remission.

It has been 11 months since then and our warrior princess has only one more chemotherapy treatment to go.  Taliyah has not been to school in the last year.  She has a teacher who comes to our home once a week.  She has endured a total of 4 surgeries, 2 life threatening blood infections, over 50 transfusions, 5 ½ weeks of proton radiation treatment at Mass General in Boston, MA, and harsh chemotherapy treatments which were supposed to be a total of 42 weeks but have prolonged due to low counts.

Taliyah has inspired everyone who comes in contact with her.  She remains positive and upbeat through it all, and has such a sweet and loving attitude.  She is a self proclaimed cat lover and tree hugger, and one day wants to help kids just like herself.

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