Honored Kid

Taliyah S.

Age 12
Taliyah S. Kid Photo

Location

Vacaville, CA, US

Diagnosis

Rhabdomyosarcoma

Date of Diagnosis

April 2014

Status

No evidence of disease

Treated At

Children's Hospital and Research Center Oakland Massachusetts General Hospital Cancer Center

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My Story

2014-2015
How our story started. In the middle of February when we were getting ready to move off base, after my husband's retirement from the Air Force, we noticed Taliyah had a stuffy nose. It was so stuffed she was breathing only out of her mouth. She had no other symptoms but the stuffy nose. At the time I was sick, and had one thing after another, including an upper respiratory infection, and I also started a new job, on top of buying a house and moving and I really just thought she was 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. I put off making an appointment because our insurance had switched just for the month of March and we would have to pay $300 out of pocket. Then we noticed she was suffering from sleep apnea too so I decided that after work I would take her in to the urgent care and just pay the money. 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 said it was the largest adenoid he had ever seen. He went and called the ENT doctor who agreed to see us the next day. I took her in to the ENT doctor who looked in her mouth, was quiet, looked again, then sat back and said he has never seen anything like that. He thought 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. March 31st, We take Taliyah to what was suppose to be a 45 minute adenoid removal and I started to get worried after it had been a hour. Right after Irvin told me not to worry a nurse came and told us she was doing great and would be done in about 30 minutes. I think it was about another hour after that when the doc came out and pulled us to a side room to tell us that it was not an adenoid but a golf ball size 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. That weekend, Sunday, April 6th to be exact (my birthday), her older sister had a seizure and hit her head very hard during the fall. I spent the day in the ER with her. She was admitted overnight. It took my mind off worrying about why I had not heard from Taliyah's doctor yet about the test results. Everyone kept saying it was good that we hadn't heard anything yet. That is it was bad news they would have called us and asked us to come in already. I finally called Tuesday and was told the doctor was in surgery and would call me back the next day. Wednesday I got a call from his nurse asking Irvin and I to come in. My heart dropped and I began to panic. Being called in is bad news right? My husband and I met with Dr Henderson at the ENT office in Fairfield. He walks into the room and starts to cry as he tells us that our daughter has 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 doctors mouth moving. Because he was so emotional I just knew he was going to say the cancer was inoperable. When he asked me if I had any questions I burst into tears. I was finally able to ask if he said her cancer was treatable. He and I left and sat in the car and hugged & talked (well, I mostly cried). 4/12/14: Our First Trip to the Children's Hospital. We went in for an MRI yesterday morning, Taliyah was very brave and sat very still for 45 minutes. She was even able to go to sleep with all of that noise. After that we went and met with two oncologist who told us the basic info about Embryonal Rhabdomyosarcoma. If you haven't looked it up already, it is a cancer that forms on the soft tissue or muscle in our body. There is a 3 drug protocol that they start all Rhabdo cancer patients on. And depending on what stage they categorize her in, they will decide what other action to take from there. After meeting with the oncologist we went to another office for a PET scan where she also had to sit very still. She couldn't eat or drink anything until that test was over. I wish they would have scheduled it for earlier. But now that those tests are over the next step is going back next Wednesday for a spinal tap, a bone marrow biopsy (that isn't what they called it but basically they are putting a needle into her left and right hip bone and pulling out fluid and also tissue to make sure the cancer has not spread to her bone marrow). They will also be inserting a Broviac line into her chest so they don't have to put an IV in her arm every time she comes in. This will all be done under anesthesia. They are going to admit her to the hospital and teach us how to care for her line. On Friday she will start her chemo. He said to plan on staying a week. 4/16/2014: I just spoke to Dr Raphael and he said Taliyah's MRI shows some cancer still attached to her pallet but her PET scan was totally clear. Please pray that it is localized and has not spread anywhere else. She is headed back for the spinal tap and bone marrow biopsy any minute. 4/18/2014: The long awaited update. Chemo did not start today as planned but we did finally get some answers. I want to thank everyone for all of your prayers. I feel like I am over playing those two words here recently but I am forever grateful for the prayers, love and support you all have given to our little Warrior Princess and our whole family. Taliyah will be starting chemo tomorrow for sure. The good news is, her spinal tap and bone marrow biopsy showed no spread in the cancer. Praise God! This means her cancer is localized and gives her a greater chance of being totally cured once she goes into remission. The cancer was officially confirmed as being Embryonal Rabdomaysarcoma and is Stage 3, Group 3. 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. So continue to pray for her and her whole family. She will beat this! Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. 
 You can follow Taliyah's story at www.facebook.com/groups/WarriorPrincessT
2016-
Taliyah is now enjoying life back at school, cheering, and she even just joined a basketball team. We go in every 3 months for scans to make sure her monster is still gone but just cherishing every moment we have. Our mission is to raise awareness to how severely underfunded childhood cancer research. If we can help to save just one life, it would be a success.  
2017-
Taliyah is still doing well.  Her last scan showed a small spot on one of her lungs that we are watching but the doctor doesn't think it's a relapse.  Taliyah, her little brother and I raised money for the Children's Hospital for Christmas our 2nd year in a row this year.  We were able to donate about $1500 worth of toys and gift cards this year alone.  We recently got the results of some neuropsych testing she had done because of some learning issues that have developed since chemo and radiation.  She is very bright and scored on the higher end for intellectual ability but low for visual spatial ability.  With a few adjustments she is doing much better in school.  It's hard to look healthy on the outside but basically suffering from a brain injury caused by her treatment and no one knows or have a hard time believing.
I am working on starting a nonprofit that will recognize some of the forgotten children through this whole thing, the siblings of kids with cancer.  Taliyah's little brother always wanted to get mail just like she did, but he never complained.  He was always very supportive, even at the young ages of 4 and 5.  I want to recognize these kids.

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