Marissela is an old soul. She looks into you not at you. Her favorite thing in the entire world is music. That means singing, dancing, playing instruments, all of it. When she is sick to her stomach or in pain, music is one of the only things that brings comfort to her mind and heart. She also loves the Disney Princess Elena of Avalor. She is very reserved but also highly intelligent and emotionally aware. She loves to play things like peek-a-boo and will sign several kid’s songs. The sweetest little girl you’ll ever meet!
Marissela was diagnosed on August 31st of 2015 with Very High Risk Premature B Cell Acute Lymphoblastic Leukemia or ALL. She is still in active treatment, receiving daily chemotherapy. Her end of treatment date is 12/23/2017 pending she doesn’t relapse. She is currently in remission but at very high risk of relapse.
Cancer has been a consuming beast. We struggle greatly with Marissela’s discomfort. Chemotherapy causes severe pains, aches, vomiting, diarrhea, bleeding, and so much more. Trauma of treatment has also caused her to have developmental delays. In addition to chemo, we take her to appointments every week for physical therapy, occupational therapy, speech and language pathology, child psychology, and music therapy. We practically live at the hospital which means being away from our other two children for extended periods of time.
Treatment itself is financially draining as it costs approximately $300,000 monthly (which is reduced by 80% after insurance). Then, on top of that, we have to purchase medications and home care supplies totally approximately $1,500 monthly. It’s very difficult commuting back and forth between home and the hospital while juggling normal daily activities. When we are home we are full time caregivers. We administer all of her home chemo, antibiotics and medications to control side effects. Depending on which phase of treatment we are in that can sometimes mean 5 medications a day or it can mean 30.
There is absolutely nothing cancer hasn’t changed about our lives. Our world ended but life kept happening. It’s the strangest thing- the closer you or someone you loves is to death, the more alive you become. We pack every second of every day with joy and love. We eat ice cream for breakfast sometimes. If my kids want 5000 hugs & kisses, snuggles, a glasses of water and bedtime stories… the answer is always yes.
We pray to God, who gives and takes away, that his plan is to let Marissela live. That he allows her to grow in his image to serve and bless others. We also have to accept that sometimes the answer is no. That, my friends, is something we are still trying to wrap our heads around. Cancer has brought us to our knees in the most raw, humble way you can possibly imagine. We will never, ever be the same again. Marissela is so brave. She fights with the grace and fortitude of an angel. I couldn’t do what she does. When she beats cancer, there is no limit to what she will be able to accomplish. God is good!
Hope session by Amanda Orelman Photography. instagram | facebook