We do not know how long we have…
Our amazing 4 years old daughter, Faith was diagnosed with Neuroblastoma High Risk Stage 4 Cancer. She has been our amazing little fighter. She’s endured brain and spinal surgery, chemotherapy, stem cell collection (harvest), a feeding tube, chemotherapy with antibodies and radiation. Unfortunately these procedures and treatments have not been successful. The location and size of her tumor has prevented any kind of surgery to be performed. The biggest tumor is located in front of her abdomen wrapping around organs back to her spine. Since we first started treatment in November of 2017, her tumor has grown. Now we are told they are no longer able to treat her. They are going to make her as comfortable as they possibly can.
With the question as parents, “how long?” As parents we don’t want to believe it. We watch her every day full of bubbly energy. Her hair is growing back with the help of vitamin D. She is gaining weight, she looks so good, and spirits are inspiring. It’s been a long time since we have seen her like this. I think that’s why it makes it so hard to believe. We are being told that our little angel isn’t going to make it much longer. She has an older brother and a new baby sister. Faith loves and adores the both of them greatly.
My fiance and I both stopped working when Faith was first diagnosed. My fiance started working again, but then we were given this terrible news. Make a Wish got in touch with us and made Faith’s wish come true. Faith met The Little Mermaid and the other princesses in Disneyland. We all had such a blast spending time together in such a magical place. We don’t know how much more time we have with Faith. The doctors and our hope was that radiation therapy would pro-long Faith’s life up to 10 months. After recent scan readings we found that she did not respond to the radiation as hoped. Faith has been incredibly amazing through ALL of this. She is a fighter in ways I could never possibly be.
She has learned so much and loves being hands on with the doctors, nurses and as well at home taking yucky meds to flushing her tubes. It has definitely been a rollercoaster ride as the doc says and much more watching her go through all this. We still believe and hope for a miracle out there, somewhere for our baby girl. As parents we want to do all we can for our children. So many thoughts cross our minds. I stop myself because we don’t see our lives without our Faith. Thoughts of what if? ,though I can’t accept it. I know this week will be a challenge for my family. Hospice comes in to introduce them selves and become a familiar face for our girl. We will start seeing them once a week starting off. Of course, when needed. The following week we start our grieving counseling with a social worker from hospice. Yes, early. We all are having a difficult time. It’s been very emotional with things at the moment. As a family of 5 struggling to wrap our minds around what is going on in our own ways. I’m probably the worse, that’s why I have reached out for the help. I’m reaching out because if this goes as they say, we are unable to afford costs after she is no longer here with us. My fiance and I are currently unemployed wanting to spend every second during the rest of the time we have with her. I want and need our daughter to be a part of our big day. Her smile and funny little personality to share this great moment all together. Words could never express our appreciation of your caring kindness. She is our world. It means the world to us all!
Thank you from all of our hearts.