The way my story starts is not unique. My daughter, who is 3 years old has what seemed to be benign symptoms. Her eye leaked a small amount of clear fluid which we thought was allergy related. All of a sudden she had this huge mass on her neck in the lymph node region. Her pediatrician thought it was a viral infection and would go away on it’s own. He ruled out cancer based on her CBC counts. He did prescribe her a broad spectrum antibiotic just in case it was bacterial. Two weeks later it had not gone away and my daughter was complaining her eye and ear hurt. Back to the doShe ctor we went and this time it was diagnosed as an ear infection and she was given a different antibiotic. He also set up an appointment with an ear, nose, and throat doctor (although he said we may be laughed out of the office for a simple case of swollen lymph nodes). The appointment was set for 3 weeks later. A couple of days later she developed a rash on her body so back to the doctor we went. This time we saw a different doctor who believed the rash to be a viral infection. However, he got us in to see an ENT doctor the very next day. The ENT believed it to be a case of cat scratch fever but also ordered a battery of tests including a CT scan. The doctor called me within 30 minutes of the scan and told me it was worse than she thought and she was coming to talk to us. She pulled up the scan and explained it was a tumor and it was cancer but we needed more tests to determine what kind of cancer and a treatment plan. Those moments are forever etched in my memory. Those minutes will define the rest of my life as well as my daughters. Those words will rip the rug of your normal life right from under you until you don’t even know what is normal anymore. She was admitted to the hospital and a serious of tests began including a biopsy, a placement of a port to deliver chemo, and a bone barrow aspiration. Around 5 hours after her surgeries began she went to recovery. She was kept in the hospital for days waiting for the final diagnosis. It was more bleak than we even imagined. She has stage 4 Rhabdomyosarcoma, also known as RMS, which has spread to her lungs, bone marrow as well as the bone in her arm and pelvis. Her prognosis is extremely bleak. As the words you never want to hear piled up higher and higher we thought it really couldn’t get much worse. Boy were we wrong! We found out if she does make it through treatment she will never be able to have children. The radiation therapy will affect her eye up to a total loss of it. The radiation will be 5 days a week for 5-6 weeks. As she is only 3 years old she has to be put to sleep for each CT, MRI, radiation treatment.
She started chemo a few days later. Of course her protocol is extremely aggressive so we don’t get a lot of days off from it. Her appetite had already been affected by the cancer prior to starting chemo and was made worse by the medicines. We finally got to a point we thought we were going to get a break from the hospital only to end up back in the ER 2 days later with a high fever and diarrhea along with dehydration and low blood counts. Her course of treatment is scheduled to last 51 weeks so we are still very early in this journey which will lead to unknown places.
I am circling through heartbreak, anger, grief, and back again.
The words “your child has cancer” means your hopes and dreams for your child’s present and future are a thing of the past. She can no longer go to the potty and must now use diapers. She now can’t go to the dance classes you promised her because of fear of her getting sick. She can’t run or climb anymore due to the cancer in her pelvis and side effects of the medication. She doesn’t eat anymore. She begs to not have to go to the doctor anymore. She complains of her tummy hurting and there is nothing you can do to ease that pain. You suddenly realize she may never go to school, drive a car, or have a date. Now your hopes and dreams are that she makes it through the treatment with the least amount of suffering possible.
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