Here's my story...
Hi! I'm Cameron. I'm 5 years old. I'll be 6 on September 6, 2003. I have a brain tumor called a ganglioglioma.
Shortly after my 4th birthday I started getting headaches. They got really bad and I would have them everyday. I went to the doctor and he said it was allergies and put me on Claritin and Tylenol. This helped for about a week, then the headaches came back. After a little while I started tilting my head to the right - all the time. Mommy would try to straighten up my head but it wouldn't budge. I went back to the doctor at the end of October 2001 and the doctor said it was still allergies and the head tilting was behavioral. Mommy knows me better than anyone and she said it was not behavioral. She took me to the eye doctor to see if I needed glasses, but the eye doctor said I have excellent vision.
On November 9, 2001, after 2 nights of being up all night with the worst headaches ever, Mommy took me to a different doctor. She checked me out but couldn't get a good look into my eyes because the light would hurt them too bad. She sent us for a CAT scan right away. We were having trouble with our insurance so they wouldn't do it so we went home. I had a couple bites of a banana. Mommy tried to get me in for the CAT scan at other hospitals, but because I had a little bit of banana I would have to wait 4 hours and it was a Friday, everyone was leaving early. Mommy called my new doctor and told her what was going on. My new doctor called right back - she got us in at another hospital for the CAT scan.
When we got there we had to wait a while and my head hurt really bad. The CAT scan people were really busy and they said it would be 3-4 hours before we could get it done and then the doctors who read the scans would already be gone. Mommy was praying the whole time for God to make a way. Well, He did - we got the scan right away, and even had it read. Then Mommy got the bad news - I had a large tumor in the back of my brain. I was still sleeping off my sedation when they told her. Then she called my Daddy - he's a truck driver and was in Massachusetts at the time.
The hospital here sent me to New Orleans Children's Hospital by ambulance. I got to eat some ice cream and peanut butter crackers while we waited for the ambulance. I slept the whole ride - good thing because my head was hurting so bad. When we got to New Orleans my Grammy, Aunt Julie and my cousins Emily, Hollie, & Saely were waiting to see me. But first the Neurologist had to check me out. It was aggravating because my head was still hurting real bad. He gave me a shot of Decadron - I threw up - then the pain was gone! I visited with my cousins while Mommy went to talk to the doctor.
The next morning when I woke up my Daddy was there - he must have drove really fast to get to me! I went to surgery and had a VP shunt placed in the back right side of my head. It has a tube that runs from it under my skin to my abdomen. The part that hurt the most was where they cut in to my tummy for the tube. I did not like that surgery. That was Saturday, November 10, 2001.
On Monday I had my first MRI. I was sedated so I wouldn't move around. The doctor had a long talk with Mommy and Daddy and they decided I should have an operation to take out the tumor on Friday, November 16, 2001. We stayed at the hospital that week - and on Thursday (Nov.15) I got to go to the zoo. It was really fun.
Surgery day - the surgery went well, the doctor told Mommy he thought he got all the tumor out. Before the operation they put in a central line - just in case they had any trouble. My surgery was done with me sitting up so I had 2 embolism(s) during the surgery - this is where the central line came in - they used it to get the air out (embolism) so it wouldn't hurt me. The doctor told Mommy and Daddy that typically after this type of surgery, the patient is on a ventilator for a little while, then has to have therapy to help with talking and drinking, etc. Well, I went to recovery with no ventilator, I woke up right away and was asking for my Mommy. When Mommy came in, I asked her for some water. I did real good! I went to PICU and Mommy or Daddy was always with me. At first I couldn't move my head and it scared me, but Mommy told me just to sleep and I would feel better. I got to leave PICU on Sunday morning - that was less than 48 hours I had to stay in there. There were alot of crying babies and the lights were on all the time - I was ready to get back in my own room.
My big brother Nick came and spent alot of time with me. I would watch him play video games since I wasn't up to it yet. We got to come home on Thanksgiving Day - just 6 days after I had brain surgery! I had trouble with balance for a while after I got home. And if I was sitting on the floor, Mommy would have to help me get up. I guess sitting in the hospital for almost 2 weeks made me weak, along with the operation. The problems the tumor made me have is shakiness in my left hand, my left eye twitches and my left foot turns in a little.
I had my follow-up MRI on January 16, 2002 and it showed I had residual tumor. The Neurologist wanted to do radiation right away, but the Radiologist thought I should wait since I'm so young. So, the tumor board thought I should go on chemo to stop the tumor from growing until I get older for radiation. I went to the hospital on January 31 for all my testing and to have a port put in my chest.
Brain Tumor Facts & Figures
Brain Tumor Facts & Figures
Each year approximately 187,000 adults and 2,900 children are diagnosed with a brain tumor
Brain tumors are the leading cause of cancer death in children under age 20 now surpassing acute lymphoblastic leukemia (ALL), and are the third leading cause of cancer death in young adults ages 20-39
Brain tumors are the second fastest growing cause of cancer death among those over age 65
Brain tumors are the second leading cause of cancer-related deaths in males ages 20-39
Brain tumors are the fifth leading cause of cancer-related deaths in women ages 20-39
There are over 120 different types of brain tumors, making effective treatment very complicated
At present, brain tumors are treated by surgery, radiation therapy and chemotherapy, used individually or in combination
Symptoms of a brain tumor can include headaches, seizures, cognitive or personality changes, eye weakness, nausea or vomiting, speech disturbances, or memory loss
The cure rate for most brain tumors is significantly lower than that for most other types of cancer
Brain tumor research is underfunded and the public, in general, is unaware of the magnitude of the problem
Currently, brain tumors cannot be prevented because their cause is still unknown
*Information from The Brain Tumor Society, ABTA and the NBTF
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