Welcome to My Personal Page
I am uniting with others to make a difference in the fight against brain tumors. I am passionate about this cause, because I have been personally affected by this terrible disease. My journey began as I was preparing to retire at the end of 2022, but before that happy event was to happen; in late September 2022 my whole life was turned upside down. I was taken to ER from work by a fellow employee and was told after a CT scan I had a mass in my brain. I was admitted and after an MRI was done it was confirmed I had a brain tumor, and it was suspected to be Glioblastoma. I was also told that time was not on my side and that major decisions had to be made fast. So, within less than a week I was having a craniotomy done to remove the tumor. The tumor was removed successfully but, with Glioblastoma (confirmed by biopsy later) even when it appears the surgeon got everything there is always microscopic cells that remain and eventually come back. I did Google it once to see what the prognosis was, and it was not very promising. It is a very aggressive cancer with no cure at this time. I decided at that time not to be a statistic and moved forward with treatment. No matter where you go it starts with what they call the standard of care. This consists of 6 weeks of radiation 5 days a week with Chemo 7 days a week. I tolerated that well and then my nuero oncologist put me on 6 cycles of a high dose of Chemo for 5 days and then 23 days of no chemo. During this time my blood work had to be monitored closely. After a couple cycles were completed it was suggested we might try a new treatment in conjunction with the Chemo. It was a device that required my husband to shave my head every 3 days and attach arrays to my head that were then attached to a device by wires that would send “wave –like” electric fields across the upper part of the brain in different directions to help slow or stop recurrent GBM cancer cells from dividing. We used this faithfully for over 6 months, but after one of our 8-week MRI’s it showed a regrowth. We decided to stop the Optune then for a couple reasons: 1-it was so restrictive. I had to be hooked to a device weighting 3 lbs. almost 24/7, which had only a 6-hour battery life which required carrying many batteries, and it was hard to be spontaneous on anything. 2-it was a reminder constantly that I had this disease. With the regrowth and the end of the 6 cycles it was decided to try a different combination of meds with Chemo as a daily treatment. Also, infusion was added once every 2 weeks. This treatment seems to be helping with MRI’S showing improvement. But this disease does not lay down easily. After a beautiful day at the beach, I began to not feel quite right, so we went directly home. We tried making sure I was hydrated and had something to eat. I tried resting but by late evening I was having seizures and my husband had to call 911 to have the EMT’s take me to the hospital. I was in the hospital for approx. 4 days. Now, I had to add additional medications to fight the possibly of more seizures. Since then, I have had 2 additional seizures that required me to be in the hospital. Each of these seizures has increased the existing weakness I had on my left side in my arm and leg which has affected my walking and balance. It has made my vision worst as well. So, the medications are being monitored and adjusted as needed to try to stop more seizures from occurring.
As you can see, you never know from day to day what is in store for you with this disease. The above is just a small sample of what my husband and I have had to adjust to, but I am determined to, as I said earlier not to be a statistic. The longer I can fight this the better the chances are a cure could be found. By the Grace of God, I have found the strength to continue this fight, but I need your help in this fight. Please join in my effort!
The National Brain Tumor Society is committed to defeating brain tumors and improving the quality of patients’ lives. NBTS unrelentingly invest in, mobilize, and unite the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers.
Achievements
Accelerator
Raised at least $250
Personal Gift
Has made a donation to this event
Personal Progress:
of Goal
$1,607
Raised
$1,750.00
Fundraising Honor Roll
Brian McGrath
$500
Anne
$257
Elks Lodge of Galloway #2845
$200
Kevin Harrington
$100
Jodi & Phina Eafrati
$51
Randy & Janice Guenther
$51
Jim and Sharon Commander
$50
Catherine Wood
$50
Kelley and Bob Waters
$50
Jim & Star
$50
Kelley McGrath Waters
$50
Joanie
$30
Nancy Rubin
$30
Anonymous
$30
Heidi Leledakis
Pearl Koteles
$30
Karen Benedetto
$20
Barbara Steele
$20
Lugene Trefsger
$5
National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research; advocating for public policies that meet the critical needs of the brain tumor community; and providing comprehensive patient, family and caregiver resources. Your support ensures this important work will continue.
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