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Savanna’s Story

Welcome to our CaringBridge website. We created this site to keep everyone up to date on Savanna's battle against medulloblastoma, a form of brain cancer. Get started by reading the introduction to our website, My Story. Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook. 

"Children with cancer are like candles in the wind who accept the fact that at any moment they may be extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light."


                   My Story

After many months of doctors visits and throwing up that led to vision problems and then balance problems, I was diagnosed with malignant brain cancer called medulloblastoma on 5-6-08.  It is a very aggressive grade 4 tumor. On May 12, 2008 I had surgery to remove my tumor. The entire tumor was removed and I had no sign of tumor spread in my brain or my spine. It was the size of a large egg and was located in the back of my brain in the posterior fossa and was compressing my brainstem and not allowing my brain fluid to drain. The build up of fluid in my brain (called hydrocephalus) is what caused the throwing up and vision problems. The location of the tumor in the posterior fossa, which controls balance and coordination, is the reason I was having balance problems. Near the end of this time, before I was diagnosed, I was walking through the house with my hand out to touch anything that could help me balance such as a wall or couch. I have a 75-80 % chance that my tumor will not come back or relapse.
I had problems from my tumor and my surgery that caused me to have to have a permanent VP shunt placed to drain fluid from my brain. I have a valve on my head under my skin and tubing that runs under my skin into my brain to drain the fluid. The tubing then leads to the valve and another tube leads under my skin down my neck and chest and into my abdomen where it drains.
 I have had to have another surgery since then because I was having serious problems with my shunt. It was not draining properly and caused bleeding in my brain that was found on a routine MRI that's purpose was to look for any sign that my cancer might be coming back. The doctors replaced my shunt valve and put in a special magnetic shunt valve that the doctors can adjust with a special tool that they use to set the flow. They also had to put a borehole in the left side of my head to drain off the blood that had built up when it malfunctioned.
I had a surgery to put in my chemoport (May 2008) and have also completed 6 weeks of radiation (June and July 2008). The radiation was to my whole brain and spine. The radiation can also cause me to have future growth and hormone problems and can cause learning disabilities. I am now having to take thyroid meds because of it.
After the tumor surgery, I could not eat or sit up, or use my left arm and I could not walk anymore. I had to learn to walk again. I did it just like a baby does. Once I got where I could sit up again, I started crawling after my brother one day. Then I started to stand and take small steps while holding on to furniture. When I got brave enough, I would walk very short distances. Slowly, I have mostly recovered.
It has been a long road now,I am walking and even running but I have issues with my gait. I also have a side effect from my chemo that may or may not be permanent called foot drop. It makes it harder to walk well too. I still have a long way to go but I am strong and I am a survivor! On a recent hearing test it showed that I am having hearing loss because of my cisplatin chemo and will have to have hearing aides for both ears. I have had to have many blood transfusions and platelet transfusions.
Even though I have been through all of this, I am a tough cookie. I finished my last chemotherapy treatment on August 10th, 2009! YAY!!! It has now been over 4 years since I was diagnosed. I will now have MRI scans to rule out relapse (in May of 2012 a "irregular area of enhancement" was seen on my MRI and is believed to be changes caused by my shunt so we are watching it) and many appointments at the clinics (endocrinology, ear, nose, and throat doctors, oncologist, neuro-oncologist, neurosurgery, Brain Tumor Clinic, etc.) in Augusta to make sure I am okay and not experiencing any late effects from my treatments or having any shunt problems.
My family believes that God will heal me and watch over me. I do too. We stand together in FAITH that I will be healed. My hope is to inspire others through my journey and show people that miracles really do happen. I am one of them. Cherish your little ones.

Latest Journal Update

Victory!!!

Savanna has officially beat medulloblastoma! I can't even put into words how happy we are. The road has been long and bittersweet but she has reached the end now and we proclaim victory for our amazing girl! Her scan results were excellent, could not have been better. Dr. Ameri said the results had many positive remarks. She will no longer have MRI scans. Thank you all for weathering the high and lows with our family and for your unwavering prayers and support. God makes no mistakes!



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Comments

2 Comments

Sarah Gouzoules
By Sarah Gouzoules
oh I'm so excited for you all. After I sent my message this one came through. Savanna is a miracle!!
Brook Gatlin
By Brook Gatlin
Amazing!!!!!!!