Callie's treatment in Texas didn't work 😞

Callie travelled to Texas; got admitted in Texas Children's Hospital and took her modified cells. In the following days, she began to feel awful. She threw up often, suffered bowel issues. Her oxygen level dropped and abdomen got swollen. Scans showed a fast progressing new tumor on her neck. Unfortunately the treatment in Texas didn't seem helpful.

Callie got transferred back to Cincinnati Children's Hospital as fast as possible due to her fast growing tumors. She started radiation therapy to her neck and liver, and a trial drug named venetoclax combined with chemotherapy. Her abdomen is still swollen and hurting. She has been fighting this very aggressive cancer in all pain and tears with her all strength. Doctors don't think she can make it till Christmas if the trial drug doesn't work. This is definitely not what Callie's family has been expecting to hear in September. They feel completely crashed. So do I as I see them going through disrupted cancer life. They are getting prepared for hospice service for kids. The word hospice has put a lump in my throat. The new trial has to work. It's recently my only wish.😭 They will keep fighting and looking for any options, meaning they are not giving up. However, Callie deserves to be home, to have more time to play, giggle, and enjoy whatever she wants together with her family. I am so sorry that she thinks the hospital life is her normal and she is oblivious to what's happening to her. She misses home, home misses Callie. It drives me crazy doing nothing about her cancer.

Venetoclax is used against a range of cancers. It is the most effective in combination with other drugs [https://www.neuroblastoma.org.au/appeal/researchappeal]. I found the relevant clinical trial on the Cincinnati's webpage. My heart goes out to tiny but mighty Callie and her lovely family. 💛🎗️

Clinical Trial: https://www.cincinnatichildrens.org/service/c/clinical-trials/studies/M13-833

#Neuroblastoma #ChildhoodCancer #Callie

Kate loves unicorns !

Kate is a 4-year-old sassy girl from Florida. She was diagnosed with stage-4 high risk neuroblastoma back in October 2019 and has been battling cancer ever since. She has been through a major surgery for tumor removal and many rounds of chemotherapy, radiotherapy, immunotherapy, platelet transfusion and stem cell transfusion. Thankfully her body has responded to the treatments and she has successfully come a very long way so far. She continues to receive treatments in UF Health Shands Children's Hospital in Gainesville. Where she got radiotherapy was UF Health Proton Therapy Institute in Jacksonville.

Kate is as brave and strong as all other kids fighting the same disease. Her voice and smile makes me smile. She likes cookies, donuts and cupcakes. She likes Disney characters. She is in love with unicorns. She takes her unicorns with her wherever she goes. Besides, she has a great imagination and creativity spilled onto papers. She loves painting, and she wants to be an artist. You would definitely want to see her artworks on the Fb page. I asked her parents for one of her artworks in order to print on my shirt, so that I would have a meaningful bound with a little heart that I don't even know in person. I asked my brother to help me remove the background and noise from the photo that I received from the parents. Then, I made the custom design and ordered it. I would have ordered more than one t-shirt if I had an idea of how good its present look. Better than I expected. That is a cute, colorful unicorn 🦄 and to me it is a present from Kate.

I am into drawings especially that of anime style. I would love to draw and paint together with Kate someday, if I ever get to move to the USA (fingers crossed). I could teach her and many other kids how to draw anime characters.

I follow Kate's journey on Fb: Team Kate. I enjoy reading the updates, it continuously teaches me so many things I'd never though of. Kate has fabulous parents and a beautiful brother who love her so much.

September, my favorite month of the year, has finally come. I am so excited to spread the awareness of childhood cancer 🎗️, even though it might mean repetitive, annoying social media posts to some in my network.

#Neuroblastoma #ChildhoodCancer #Kate #TeamKate

Happy Heavenly Birthday Charley!

Today, 13 August, is Charley's birthday. She would have been 7 years old. The first birthday that her family is living without Charley. My heart is breaking for her loss.

Charley was diagnosed with the brain cancer called Pilocytic Astrocytoma and the neurologic disorder Diencephalic Syndrome caused by the tumor. Pilocytic astrocytomas are common pediatric brain tumors. They are often removed with surgery. Charley's tumor had been inoperable, however she underwent an high risk operation which was crucial to keep her alive, in 2014 when she was just 1 year old. The operation was successful, but it made her blind. A year later she underwent another operation. She showed significant recovery over time. However, the tumor growth began to cause new symptoms in 2019, thus she had the 3rd operation which was not easy to recover. Unfortunately, she has gained her angel wings in the late 2019.

Charley fought the brain cancer over 6 years. She went through overwhelming treatments, 3 major brain surgeries, complications and more. What makes Charley very different and special for me is her determined spirit and unconditional love. I am truly impressed by her fighting spirit. When the very moment I saw one of her videos, in which she attempts tiny successful steps along the corridor at her home while being not able to see, I was struck by her stupendous effort of will.

It leaves me speechless how much love she was made of. In almost every video of her, she relentlessly says "I love you so big". She loved her momma, brother, grandpa, pet Coco, and even her toys so much. I get easily emotional when I see her giving momma her little nose, lovings and chubby cheeks. She was sassy and happy girl. Even in her bad days, she kept smiling and expressed her love and kind feelings. She liked pretzel pieces and ripping up papers a lot. Heartbreaking to see that very simple things make these children really happy, if fact it often makes me question the real problems of the world.

Charley is exactly the same as the hero figures in the anime series I watch. Strong, hard-working, never gives up, super-positive, loves big, inspires thousands, and always wears a smile. The character I always wanted to be... She is the most influential person I've ever seen. Everyday I watch the memories of her to maintain determination. When I have difficulties to solve, I watch or remember her videos as a dose of drug to boost my motivation. I give myself pretzel pieces to remember her spirit when I complete reading a chapter of a book. There also happens times at which I feel shattered when I think about her.

Charley's mom, Heather, is an incredible mother. She has raised two beautiful children, one is the strongest fighter with a heart made of pure love. She taught Charley how to fight the cancer, to survive and to love unconditionally. I continuously learn how to become an ideal parent from the experiences that she has shared. I admire her a lot. I want to raise my children in the same way, if I ever get courage to have children.

The inspiration that Charley has given is enormous. Thousands of people who have been touched by Charley follow her facebook page, sending hugs and prayers. I wish I knew Charley in person and met her family. I wish I discovered her journey way earlier. My heart doesn't simply want to accept she is gone. I feel sorry that I couldn't do anything good for her.

Happy heavenly 7th birthday, Charley!✨ You are always beautiful, strong, smart, brave, and fluffy as you already know. I want to become a hero just like you. You are my hero who inspires me everyday. Love you so big! 💖

FB: Smiley for Baby Charley

#BrainTumor #ChildhoodCancer #Charley #Love #Forever6