
Daenerys' Fight Against Cancer
Donation protected
For those of you who do not know Daenerys; think of who she is named after. Yes, that Daenerys, "Mother of Dragons!" This eight year old, is mature, fierce, caring, compassionate, empathetic, and has an infectious personality. She carries all of these characteristics with her during the most trying time of her young life, her battle against cancer. When first hearing of her diagnosis, she did not cry or panic. She simply looked at the doctors and asked, "Is this life-threatening?" When told it could be treated, she put her game face on and has approached every hardship with the same perspective, "This will help me get better."
Daenerys, was diagnosed with cancer three months ago. After doing everything in their power to alleviate a neck pain she was complaining of; her parents found her unable to maintain her balance one evening, completely overcome by pain and immobility. That same day; on their way to the hospital, mom discovered a mass on the back of Daenerys' head. Tests unveiled a 3 inch tumor behind her head spanning from about eye-level through the base of her skull to the nape of her neck. In a little over a week, the aggressive tumor had grown to four inches. Altogether, this was a tumor that grew from invisible to four inches in a matter of weeks! Daenerys currently has a working diagnosis of Fusion-Negative Small Round Cell Sarcoma-- "working" because she has not been officially diagnosed yet. Doctors are working tirelessly to identify the gene mutation (cause of this cancer), but to date, all of their tests are negative, and doctors are considering this tumor extremely rare.
This fundraiser is to support Daenerys' fight in a variety of ways:
- Medical Expenses: Daenerys has faced several setbacks to her treatment thus far. Her chemotherapy and radiation have been postponed numerous times due to low blood and platelet levels requiring blood and platelet transfusions, booster shots (some of which are over $150 an injection), and most recently a staphylococcal infection acquired through her Metaport this week which is potentially setting her treatment back a month, allowing cancer cells to grow again. Health insurance does not cover all of her treatment yet alone the additional treatments required from these setbacks. In addition, it is anticipated that Daenerys will require future medical procedures to combat the side effects of chemo; e.g. chemo shortens childbearing years and it is not uncommon for young patients to have to harvest viable eggs and eventually seek out IVF (not covered by insurance).
- Additional programs and resources: The family is looking to uncover additional information about her diagnosis in order to understand her prognosis and the root cause as a preventative measure for the future. Being out of school has been extremely difficult for Daenerys. She LOVES school, loves learning and loves her friends. The family is looking into resources to try to normalize her experience.
- Travel to and from the hospital: Daenerys is currently set to have 7 rounds of chemotherapy and 29 consecutive days of radiation and additional hospital visits in between each round of chemo, sometimes up to 8 visits. In addition to other treatments due to complications, the travel has taken a major financial toll on the family. Daenerys' mom was hit by a car as a pedestrian several years ago. This accident left her with severe injuries and most recently she was diagnosed with degenerative disc disease in addition to her already diagnosed ALL disc herniations, torn rotator cuffs, and knee dislocations. Her prognosis is disheartening, as the surgery needed to reduce her pain and increase mobility could cause potential paralysis as early as ten years from now - her surgeon refused to take on this surgery due to the risks. Extreme joint pain, leaves mom unable to drive Daenerys to and from the hospital and her bonus dad works during the day. Roundtrips to the hospital via Uber range from $120-$170.
- Individual hospital resources: Daenerys gets extreme motion sickness from the hospital beds available at her facility. These beds have motion technology which help prevent bed sores. The hospital is unable to adequately accommodate her. Mom is working to purchase her a supportive hospital bed pad to allow the bed to be powered off without Daenerys' being subjected to sleeping on the metal bed frame.
- Future accessible housing: Due to mom's condition and Daenerys' immunocompromised state, their current apartment is not ideal. The goal is to continue to save as much as possible (difficult with the mounting medical bills) to provide a home with a more controlled environment for Daenerys and accessible space for mom. Daenerys requires a wheelchair after chemo as she is too weak to walk. They have dealt with several accessibility issues as the elevator in their current building is unreliable. Being stuck in the elevator on the way to a blood transfusion and returning home from chemo to find the elevator down, is an unnecessary added stress.
I would be remiss if I did not take a moment to highlight the family surrounding this amazing little girl! I have known mom, Dorinda, since I was in the third grade. She is a licensed mental health therapist and while she has not left her daughter's side, she still finds a way to provide the support and care all of her clients need and expect. She travels with her laptop and tucks away into any empty room, closet, or private space available at the hospital to maintain the commitment she has towards her clients. Julian, dad, serves the city as an employee at NYC homeless shelters. Bonus dad, Armando, is a special education teacher who pours everything into his high-school students and colleagues (I'm blessed to have witnessed it first-hand as a former colleague). This family, is a family rooted in service; professionally and personally. They give to some of the neediest in our society and deserve as much support as we can provide them in their time of need. Let's help Daenerys follow in their path. She aspires to touch the lives of others by becoming a doctor, a child-life specialist, a chef and (yes, AND) most of all, a singer (wait until you hear her voice!). When she is through with this battle, she has promised us all a show!
PLEASE NOTE: All funds connected will go directly to Dorinda Rogers (mom) to cover the expenses listed above.
PLEASE NOTE: All funds connected will go directly to Dorinda Rogers (mom) to cover the expenses listed above.
Organizer and beneficiary
Ashley Legitime
Organizer
Kew Gardens, NY
Dorinda Rogers
Beneficiary