Help Shyann beat this cancer

Shyann Barnes is a 4th grade happy and high spirited 10 year old girl who loves to ride her bike, roller skate, draw, paint, sing & write songs with her friends and everybody she meets falls in love with her. Shyann is a very intelligent individual and made honor roll the middle of January on her report card and we celebrated her 10th birthday on February 5th, 2023 by inviting her class to join us. By mid February, school interim reports showed several grades dropped significantly and were borderline failing. She was feeling sluggish/really tired by the second week of February. After meeting with her teacher and principal, we determined there may be a medical issue and setup a doctors appointment that led us to the ER on 02/23/23. At the doctors office, she was fatigued and began to look pale, and we were told to go to the pediatric ER at MCV immediately because something seemed terrible wrong after doing an Orthostatic test. After several hours and many tests later, it was determined that there was a cancerous mass in her abdomen and that she would be admitted. On 2/27 biopsies were done and on the evening of 3/6 we got the official diagnosis of Alveolar Rhabdomyosarcoma. Also, according to the diagnosis and PET/MRI scans, it has been determined to be in stage 4. This diagnosis, particularly due to the rare type of Rhabdomysarcoma, statistically has a very low success rate with typical treatments offered in the US.

Currently they have offered an aggressive cancer treatment plan based off of other countries such as Canada, Europe, Saudi Arabia and others that potentially increases her survival rate up to 70% best case over the next 5 years. With the official diagnosis and the type of cancer figured out we were able to start her treatments on 3/7!

Today marks day 14 that we have been here in the hospital with Shyann and we are currently out of work and our lives have been disrupted in many ways while we focus on her and her well-being above all else. The current plan for treatment is a heavy regiment that requires regular visits to the treatment center at MCV. We live approximately 45+ minutes away from MCV and will be having to make weekly trips (possibly more) for the next 1.5-2 years for the primary treatment. In addition, mom works night shifts and we only have one vehicle for transportation. Due to the intensity of the treatment plan, there are many things that could cause us to have to make regular trips up to the hospital outside of the normal once-a-week routine both during the day and possibly at night as well as her potentially being re-admitted for days at a time. Per the doctors, this is a rare and very serious form of this cancer particularly due to where it formed and how it quickly metastasized from the beginning. Even after the initial treatment, there will be a very high chance of other cancers developing within the 5 year period and beyond regardless of remission.

Our goals from starting this fundraiser are to prepare our home for Shyann's mobility, to ensure transportation by getting a second vehicle and to cover travel expenses. Changes to the home include replacing our front porch as well as rebuilding our back porch to make it handicap accessible. Inside the home, our bathroom does not meet her needs. This includes renovating the bath-tub and toilet to be more accessible for her. After speaking with the Physical and Occupational Therapists, they have offered us multiple suggestions on how to modify her room and bed to make it more accessible and comfortable for her as well. In addition, the insurance will not cover the specialty mattress and some other medical supplies/devices that they are recommending for us to purchase. Another PT/OT concern is her current setup for her desktop PC desk area. She cannot sit for prolonged periods in a chair due to multiple compression fractures in her vertebrae. Since she will not be able to return to school for the foreseeable future, we would like to get a tablet-PC for her to make accessing school work easier and for her to continue her drawing and to be able to continue to connect with her friends from school.

Any money raised will go to everything as mentioned. Anything extra will be saved to help over the next 5 years and beyond. This will be an on-going struggle that, if all goes well, there will be regular monitoring and evaluations due to the high-risk afterwards of recurrence or even new types of cancers forming. Regardless of the outcome, we hope that any money saved up can be invested to also allow us to one day donate back to the many organizations that have already assisted us as well as future organizations that have reached out to help us with our struggle.

MCV/VCU Children's Hospital information and cancer program information:

https://www.chrichmond.org/services/hematology-and-oncology

https://www.chrichmond.org/services/hematology-and-oncology/specialty-programs-and-clinics/cancer-oncology-program

Here is further information in regards to Alveolar Rhabdomyosarcoma:

https://www.cancer.org/cancer/rhabdomyosarcoma/about/what-is-rhabdomyosarcoma.html

Whether you can help with a donation or not, please include Shyann in your thoughts and prayers during these trying times. We are doing our best to reach out to our loved ones with updates but her care and treatment is taking up much of our valued time. We will post updates as we get them as it is impossible to respond to everyone reaching out directly.