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2/9/2017 Latest post:
My diagnosis was changed from standard to high risk at the end of my first chemotherapy phase, Induction. There was 0.02% MRD found in my bone marrow, and the goal was to have 0%. As of May 31, 0% was thankfully NOT found in my bone marrow or spinal fluid!
My name is Ella Mae Ryan and I am a loving & rambunctious 2 year from Hamilton, NJ. I'm an outgoing little girl who loves to attend gymnastics at The Little Gym of Hamilton as well music class, "Kindermusik" at Weitz Music Studio. I also love playing and "walking" my two dogs, Lucy and Duchess.
I have a loving family who is giving me lots and lots of support. Sarah Everett and Michael Ryan are my Mommy and Daddy. Kirk & Linda Everett, Carol Stephens, and Tom and Valerie Ryan are my Grandma's and Grandpa's. I am lucky enough to have two Great Grandma's Lottie Labiak and Selma Yanta. Some more people in my family are Aunt Johanna and Uncle Kirk Everett, Uncle Tommy,and cousins Alyssa Everett, Kristen & Cassidy Nehring.
Around October, Mommy and Daddy noticed that I would occasionally walk with a limp. Also, I would occasionally wake up at night screaming and unable to fall back to sleep. Mommy and Daddy took me to the pediatrician where they gave me an antibiotic and also the ER who said I must have a viral infection. Christmas 2016 was not much of a Christmas for my family and I because just after Santa finished putting presents under the tree on Christmas Eve, I woke up crying, unable to walk or get comfortable. After about 3 weeks, it happened again and Daddy called my pediatrician for me to be seen first thing the morning of January 11th, 2017. The doctor wanted my blood work done and x-rays of my legs/ankles.
Saturday, January 14 Mommy and Daddy received an urgent message from the doctor telling them to take me to the ER immediately, and to pack a bag...
That night in the ER, further blood tests were done as well as more x-rays. The results showed that my White Blood Cell count was at about 23,000 which is very high. I was admitted that evening to the Bristol Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital, New Brunswick to the Pediatric Hematology/Oncology Unit.
The next day, Sunday January 15, Dr. Masterson sat down with my family and explained to us that I was diagnosed with Acute B Lymphoblastic Leukemia. The next day, I received a blood transfusion as my Hemoglobin level was too low. After the transplant, the doctors explained to Mom and Dad that the next day I would be getting three procedures done on the 17th.
During my procedure, the doctors placed a port in me which is a sealed chamber covered by a rubber disc under my skin on my chest. The port is so they can "plug" into me & connect my IV to draw blood and deliver all my medications, including my chemo drugs, without giving me a boo-boo. The next procedure was my first spinal tap which gave me my first dose of chemo. Thirdly, the doctors did a Bone Marrow Aspirate which checked to see if the Leukemia cells had already made it to my spine (which thankfully they didn't), and to test my bone marrow.
Upon starting Dexamethasone (steroid - taken orally) daily and my first dose of Vincristine (through IV), declared January 19th, 2017 the first day Induction, the first phase of my chemotherapy treatment...
I spent a total of 19 days in the hospital, where I started my chemotherapy treatment. I also celebrated my second birthday in the hospital on January 25th. Even though I was in the hospital, the Child Life team made a special day for me by bringing me balloons and presents! They also brought in Scruffy the therapy dog which made me very happy. Also, thanks to Embrace Kids we had a party later that evening with pizza and ice cream cake, and of course, more balloons! It was very special for my family to be able to celebrate with me, and we made sure we asked all of of the other kids on our ward (Pediatric Hematology/Oncology) and nurses if they wanted to share some pizza with us!
I was discharged from the hospital on February 2nd, and have been home since. Mommy takes my temperature a lot and everyone comes to visit me, just like they did in the hospital!
I had my first out patient chemo treatment on Mommy's Birthday, February 8th,
The doctors are going to determine the rest of my treatment plan once the induction phase is complete and another bone marrow aspiration is performed. I have a long road ahead of me, but I am a fighter and will be able to not only get through this but DEFEAT cancer with the love and support of my family and friends.