My name is Allison Hutchinson. Six months ago I would have said I was living a fairly normal life. As Relative as Normal can be. I am 37 years old and have 3 active, busy children ( ages 13, 11, and 8) and work a full time job, as well as many other responsibilities as a Wife and Mother.
Going back to the beginning of Dec 2013 I started feeling tired and run down. I thought that because my work had become busy, it being the holiday, and having many kids, Family and work holiday parties I just needed some extra rest. By the end of the month I wasn't just fatigued, I had developed a headache that I couldn't keep control of. To make matters worse my left eye stopped tracking to the left and up so I could not control it's movement and I could not see normally, my vision was blurred and double.
Upon seeking medical help for my eye and headache my doctor was able to put a nerve block in the back of my neck that helped with the headache but my eye concerned them. Because the primary care physician didn't know how to help my eye he sent me directly to the eye clinic to have it checked. I was seen there by a Nero Opthamologist and they ran many tests at the end of December 2013 including and MRI and several blood tests to see if there was anything that would cause my eye to stop moving and not be able to see. The Doctors that ran and read the results of those tests indicated that the tests were all normal and that my eye had an abducent sixth cranial nerve palsy and that it should regenerate but would take time. (six months to a year) They also said a neuro therapist could possibly help it to regenerate.
I found a neurotheripist who thought it could be brought back because it was just the one nerve being affected. Insurance did not cover the Neurotherapy and it was costly but was necessary because I needed to be able to see inorder and develop skills I needed to adapt for work. I did my best to adapt and endure for the next four months with no improvement to my eye movement or sight. It in fact seemed to steadily decline. The Neurotherapy did not help it at all.
Then in early March 2014 I again began feeling even more extremely fatigued, dizzy, and noticed a significant decrease in my appetite and weight. I then woke up one day at the end of March and the whole right side of my face was droopy and it was 100% paralyzed. I could not move it at all.
I went to see my Primary Care Physician who had me start taking some steroids to help with the facial palsy and ordered a follow up MRI and other tests to see why symptoms were getting worse not getting better as the docotor it would. The MRI was scheduled the next day after work and the day after the Scan my Doctor called and told me horribe new! The Scan showed significant changes in the brain from the December MRI with several areas showing growths that were spread throughout the whole base of my brain and dura lining. He told me to go straight to the Emergency Room in order to see a Neurologist right away. They didn't know what was growing but that it was growing fast and was completely coating all of my facial and cranial nerves. The ER preformed a LP (Spinal Tap) and many other tests and scheduled me with the Neurologist four days later. By the time I saw the Neurologist in four days the left side of my face had also gone completely paralyzed and I had lost control of it all. The Neurologist could not see a cause or diagnosis ot from the tests that were run in ER so he preformed a second LP (Spinal Tap) and more tests to try and diagnose the growth but couldn't find definitive answer either. The fast moving paralysis was concerning so I was started on high dose infused steroids to try and stop the nerve damage and paralysis from spreading any further because I was loosing my ability to swallow. They told me to come back to the E.R if anything got worse and continue the steroids as well as to have my eye checked again by the neuro ophthalmologist to ensure the optic nerve was alright.
I took the new scans and tests with me to the Nero Ophthalmologist and She showed them to her colleagues and team who all agreed that there needed further workup because steroids were not helping the paralysis at all. They did not have answers from any of the tests up to that point and the specialists all agreed they would need to get a biopsy of the growth in my brain in order to get a diagnosis. Surgery was scheduled for the next Tuesday. Scary brain surgery and I was terrified. I had the first brain biopsy surgery on April 22nd and the pathology came back showing to be an Epidermoid cyst. (Stumping everyone)
An epidermoid cyst is a rare type of slow-growing lump underneath the skin. This cyst contains soft, cheese-like skin contents. These usually appear on the face, neck, chest, upper back, genitals, or behind the ears. In my case this rare cyst had decided to settle at the base of my brain and grow. While the whole cyst came out in the biopsy, it did not explain the symptoms and things going on neurologically in my face and did not match all of the abnormalities in the brain and on the nerves in there. All the doctors and surgeons agreed that they would need to go back in for a second biopsy closer to the nerves and scrape from a nerve and the dura lining in order to get good cells to diagnose the true problem. They scheduled the surgery for 4 days after the first one and went back in for a second brain surgery. This surgery was a bit more invasive as they did scrape a nerve and the dura lining to ensure they got a good sample of cells. Coming out of anesthesia the second time was tremendously difficult for me and at that time I thought this has to be as bad as it gets.
I was in the Hospital for for a full week and when I went home I was so excited but I had been forever changed. My head had been cut open twice and beyond the scar where they can cut it open I had been scarred to my core. My head is not the same. It feels as if my head is not right and it's not my head. When I try to use my head to tell the rest of my body to do things it takes longer for it to respond if at all. My face is still completely paralyzed with some added sunken features from the scraping of the nerve in the second surgery. My eyesight is a daily fight because the nerve damage and restriction has made it so that I can't close or blink my eyes on my own without the use of my hands to get it all the way shut and they get severely dry causing the eye surfaces to film over so I can't see. My Left eye is also still not tracking and the pupil is unresponsive and dilated so I see double. The left eye will also not stay closed so I have to keep it taped and patched to protect it in hopes that the nerve will be able to recover. I have severe hearing loss in my right ear as well making it so that I can not hear people unless they are sitting or standing to my left and talking directly toward me. I have now since lost hearing in my left ear as well as a result of the Radiation Therapy being sent in so close to my ears and have started using hearing aids that do help. I also have numbness in my left foot and half way up my calf as well as thigh and across my whole bottom. As we prepared to leave the hospital on the day they were ready to discharge me medically we did not have the Pathology results from the second surgery and that made us uneasy. We did not want to leave without a diagnosis and a follow up game plan for treatment and get lost in the whole process as we felt we had been up until then. It had taken so long getting a doctor who would push and make sure to follow up and keep things moving and get some answers. At lunch time that day I got a call from the Nero Ophthalmologist who had helped get things scheduled for the biopsy and assembled an amazing team of specialists for me called me and said she was coming over to my room and not to leave yet. She came and said that the Pathology was not complete but that she had peeked at the preliminary stains that were done and that they were successful in getting cells for diagnosis. She said that they wouldn't have all of the details until the pathology was complete later but she didn't want us to leave the hospital without knowing that the cells collected were malignant and that we would be getting a call later to set up an appointment with the Nero Oncologist ASAP.
That call came a few hours later from the Oncologist himself asking if we could come in the next day at 4:00 to go over the results of the biopsy pathology and talk about where we go from here.
As I contemplated that night the reality that I had cancer, brain cancer It was surprising to me that I fealt somewhat calm. I thought about how many advancement and amazing ongoing research there is for cancer. So many advancements have been made in just the past 10 years that cancer has become much more treatable. I anticipated meeting with the Oncologists and having them say you have this kind of cancer and we kill it off this way, buy instead that appointment went much much differently.
Our Oncologist took a complete history and notes and then went over the pathology report with us. I have brain cancer. “Poorly Differentiating, Infiltrating carcinoma.” Likely from Squamous cell origin. They said that the rare cyst that had been removed in the first biopsy had mutated and the cells had grown into the cancer. A type of cancer so rare that they only have one documented case of it in the world annually. I had an extremely rare, aggressive, fast growing cancer that had grown from a mutation of an extremely rare cyst of old skin “squamous” cells and would need aggressive treatment of both Radiation and Chemo Therapy. Because they did not have many case studies with the 1 in 7 billion people who get this kind of cancer we would have to treat and fight aggressively. From what they do know it can be killed off to where there is no sign of it in the scans and be gone or it can also then come back months later as well.
We would start with a 7 week round of Radiation along with Chemo Therapy but would need to get updated scans to ensure it had not spread any further than the scans showed at the time of surgery and we also needed to determine if it was restricted to the growth on the nerves or if it was in the Spinal Fluid itself as that makes it more serious and strategically harder to treat. We scheduled to have an updated full brain and neck MRI and then added full back MRI's as well to check the full span of where the spinal fluid flows and because at that point I was having quite a lot of pain in my back as well as my head and experiencing tingling and numb sensations in my Left foot and thigh. The Radiation plan went into place to do not only the specific places in the brain where the nerves were covered in growth but the full brain so that it would get all the spinal fluid that is pooled and circulating through the brain. We set it up to start the next day having radiation daily with Chemo Therapy once a week as well. The new MRI scans showed further areas in my back on my spinal chord with cancer growth causing concern that it was completely saturated in the spinal fluid so more Radiation was added to the plan for my full spine as well the specific areas on the spinal chord where it showed cancer growth had spread.
I finished the first round of Radiation and Chemo Therapy and am currently in a stage of hold while we give the Radiation the desired down time after daily treatment to show any progress of killing off the cancer. We are not sure what other treatments will need to be tried if there is no improvement but I will be having MRI scans on July 15th and 16th to see where we are.
The Financial toll we are experiencing from everything has been overwhelming and stress full. When considering all the Medical Bills from not only many doctors appointment, two brain surgeries, daily cancer treatments all with partial insurance coverage as well as loss of a full household income as I'm not able to work through treatments as it was every day and the side effects have been so brutal making me sick and causing Neurological deficits that make it so impossible for me to effectively do my job that I love.
Any financial help that you can and are willing to provide will be so greatly appreciated from the bottom of my heart. It will be used to pay mounting medical expenses and added household costs for caring for my children and things that have been needed for my treatments and hopefully full recovery.
God Bless anyone who is willing to help in any way you can!
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