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Welcome to Lacie's Web Page. It has been provided to keep people updated about Lacie's progress since diagnosed with a brain tumor in May 2001.
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Lacie's Story: Lacie is the oldest of my four children - but only by a minute! She has a lovely and sweet twin sister Kacie who has been such a wonderful daughter and sister throughout Lacie's whole experience. Lacie and Kacie turned 19 years old on July 5, 2007. Lacie also has a younger brother, Ben who is 18 and litle sister, Stacie who is almost 12.
Diagnosis: Lacie was a vibrant 12 year old, 7th grade cheerleader and 8-year dance student. Her first symptoms were subtle, she needed glasses and sometimes seemed clumsy. On Spring Break 2001, we took a trip to the mountains. Lacie wasn't feelin well, she was nauseas and vomiting. Just a bug I thought. But during our week long vacation, Lacie's bug got worse. She was sick atleast 4 of those days and vomited what seemed like the whole 7 hour trip home. For that week and the next, some days she'd wake up very sick and other days she would be okay. I took her to the pediatrician several times, but she'd be feeling better by the time we got there. THEN - the severe headaches came - which got worse and worse in just a matter of days - she wouldn't eat or get out of bed and if she did, she would throw up or get out of bed only to make it to the couch for the rest of the day. Ah - the signs of hydrocephalus - if only I knew then what I know now. Finally, we were sent to a Neurologist who ordered an MRI and gave us the life changing news. Lacie has a brain tumor. A large mass in her cerebellum. We were immediately sent to a specialist, a pediatric neuro-surgeon in Florida.
Lacie's tumor was the size of a small avacado and could have been there possibly since her birth - lying dormant until puberty. Doctors were astonished that she had not experienced seizures because of the size and location. She underwent 10 hours of surgery to remove as much of the tumor as possible - a tumor called Ganglioglioma - a non-malignant slow growing tumor. Doctor's told us that we were "lucky".
After surgery, Lacie had to relearn how to talk, walk, eat, write - everything. She spent a month in ICU recovering from the surgery. Fluid in her brain was not flowing properly, so she had another surgery - a third ventriculostomy where a small opening was made between the ventricles to allow the fluid to pass. From there - she went for 2 months of inpatient physical rehabilitation. She left there doing much better, but not walking. Subsequent MRI's showed some changes in the very small amount of tumor that couldn't be resected and so six months after surgery and rehabilitation, Lacie began radiation. She lost her hair and her appetite - she weighed about 70 pounds. To our dismay, tumor did not respond to the radiation and just a month before Lacie's 14th birthday, a follow-up MRI showed growth - aggressive growth. Her doctors told me that the low grade tumor she was diagnosed with had possibly advanced into a higher grade tumor, it was "acting" malignant. Biopsy was the only way to find out. Another surgery? That really scared us! The tumor was growing. Our choice - another brain surgery for biopsy or start chemotherapy right away. Because of the tremendous physical problems resulting from Lacie's prior surgeries, we decided to go to Houston, Texas for a 2nd opinion. Ten days later, we came home ready to start chemo.
There were lots of ups and downs. Lots of days in the hospital, days at the clinic, blood work, MRI's, xrays. Lacie lost her hair again, and right when it started to grow, had to change chemo and lost it all again. BUT the tumor stopped growing. Every 3 months she'd have an MRI - stable, stable, stable. Praise GOD!
Lacie has made tremendous progress, however has not regained her sense of balance and she cannot walk without assistance. Even though she is in a wheel chair, she has kept her beautiful, happy, loving personality - a smile that will melt your heart. Lacie is MY GIRL, MY HERO, MY SUPERSTAR.
Diagnosis/Surgery May, 2001
Radiation Treatment Nov, 2001-Jan, 2002
1st Chemo (Temodar)Aug, 2002 - Jan, 2003
2nd Chemo (Etoposide & Tamoxifen) began March 5, 2003
NO MORE CHEMO! FINAL CYCLE, FEB,2004
ALL MRI'S SINCE HAVE SHOWN NO CHANGES!
NEXT M.R.I. APRIL,2008
Journal
Monday, June 23, 2008 11:55 AM CDT Yaaayyy!!
Birthday party on Saturday, July 5th - Lacie & Kacie will be 20 years old!!!
Everyone is invited.
Email me for more information. Email address below!!
Hope to see ya there!
Love,
Tammy
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