Hello & Welcome

Running into the hospital, with your 7 old daughter in your arms while she is having a seizure. Sending her off into an MRI machine to do a full body scan and then hearing the news that your little girl has a brain tumor wrapped within her whole entire spinal cord, having to make a life changing decision to give consent to operate in a split second. I don’t think my parents will ever forget that day of taking me into a hospital and being informed that their daughter has a rare type of cancer. From that day on, my life has changed.

My name is Shauna Ragbir and I am 27 years old. My story began when I was an infant and my parents realized that I was always tilted in my car seat. When my parents took me into the doctor’s office, they dismissed it as scoliosis and went on to making me wear a tiny body brace. Many years passed and my backaches had become unbearable, so we went on to seeing a chiropractor, which helped for a while. My parents took me back to the hospital and asked them to run more tests, but at that time our insurance would not permit the tests. At this point, the doctors said that I was probably craving for attention and that it could be the “phantom disease.” I began to have bowel and urinary track infections and became dehydrated often. I began to complain that I could not feel my left arm and that I was too weak to stand up. I asked to go to the hospital. On our way to the hospital, I was shaking, not realizing that I was having a seizure. Once we entered the hospital my parents said I was unconscious and that I had 3 seizures in that short period of time. Finally, an MRI was ordered and at the age of 7, I was diagnosed with Ependymoma, a rare brain tumor found within the spinal cord. The surgery was 16 hours long and the surgeons were able to remove 80% of the tumor. I now have a scar from the base of my brain all the way down to the bottom of my spine. After the surgery, I was in the intensive care unit for 5 days, which was also the week of my 8^th birthday. I had to wear a full body brace and learn to walk all over again. I had to go through two rounds of radiation to try and kill the roots of the tumor. Shortly after, the tumor returned so we went to find second opinions from many hospitals around the country and found an experimental oral chemotherapy drug from Sloan-Kettering Cancer Center in New York. We knew it was going to be a tough road ahead but we knew we could get through it together as family.

Two years passed and my spine began to collapse because of the intense radiation that I was previously given. I now began to suffer with scoliosis and kyphosis, so 3 titanium rods, 18 screws, and 6 vertebrate cages were placed into my back.

After that, I was healthy for many years and then college came around. At the age of 20, I developed thyroid cancer, Papillary Carcinoma, which I had to have 2 operations. The first operation was to take out my cancerous thyroid and the second was to remove 40 lymph nodes that became cancerous. To make sure that all of the other nodes remained cancer free, I had to be separated from my family and began a radioactive iodine radiation.

Another 2 years passed and then I began to lose function of my legs. They would become numb and I wouldn’t be able to support my weight. I had to stop driving because I did not feel like it was safe anymore. At this point, when I go into a doctor’s office, they don’t want to help me because my case is now considered “too complicated,” but there was one doctor in Miami who was willing to take another chance on me. I went on to having a shunt placed into my spine so the brain fluid would expel properly. I had to learn to walk again because I had lost all of the muscle mass from my legs in such a short time. Also, from staying down for so long, I developed blood clots in my legs, which I had to take injections to clear them up.

A year after that, I lost function of my legs again and we went back to Miami. The surgeon removed more of the tumor, which had grown back, but now I also have a tethered spinal cord. I had to learn, once again, to walk.

Less than 6 months passed and I lost complete function of my legs, zero movement. I was also losing arm function. We went into Arnold Palmer Hospital and we started to try a new experimental chemotherapy yet again. I usually sat in the hospital for 3 or more hours while having an IV attached to me. Thank goodness for my family and friends for keeping me entertained for those long periods. After trying this experimental chemotherapy for about 6 months, the effects were outweighing the benefits, so we stopped. I then started medical steroids and I stayed on those for about 2 years. The steroids caused the most harm to my body, but I was not able to function at all without them. I ended up developing arthritis and my bones began to deteriorate.

A neurosurgeon at Arnold Palmer came to visit me one day and asked me if he could try to put in a different shunt to see if it would help, since the others had failed. I agreed and surgery was set up. This surgery was one of the hardest ones for me, even the doctors, on the day of, wanted to call it off because they didn’t think I had a strong chance of survival. I came out of it and everyone was amazed. I stayed in the hospital for a month after doing intense physical rehab. I was able to walk about 30 feet but after a few months I began to decline again. I am now permanently in a wheelchair. The thing with this last surgery is that it would be my last because there is no way to operate on me anymore.

I was told to live out the rest of my life being happy and doing the things I love. I have gone through a lot and I’ve also missed out on a lot, but that doesn’t mean I didn’t have an amazing life.

In my blog, I would like to share with you the struggles I have been through from cancer, so it can give others hope and encouragement to keep on going. I have learned to do things differently such as normal daily tasks, driving a car with hand controls, training my service dog, and best of all traveling the world in a wheelchair. My goal in life has always been to become a doctor and help others just like me, but since I am not able to complete that task anymore, I believe I am now giving the opportunity to help others in a different way. I’ve learned that as long as you have your family by your side, my mother, father, brother, and others that truly care about you, you could get through anything. By sharing my everyday life with you, it will give you the support and tools you may need to fight for a chance to survive and to live a happy life!