Shawna
Mia, as well as her Daddy have Neurofibromatosis 1. Danny lived his entire life not knowing that he had it, when Mia's pediatrician noticed her birthmarks, he sent us to see a Neurologist. It was at this time that we learned that Mia and her Daddy have a very serious, but most of the time, manageable disease.
In July, Mia's right eye starting crossing inward, we took her to see her pediatrician, who immediately sent her to see a pediatric eye specialist as well as her neurologist. Everyone involved was confident that the eye issues were not related to NF based on Mia's MRI results from less than a year ago. Mia's neurologist decided that we would have another MRI just to be safe. In the mean time, Mia wears glasses to correct the eye crossing and also because they discovered that she has pretty bad vision.
Well, on Sept 9, 2008 we took Mia to CHKD for her MRI. That day at 3pm, Dr. Frank, her neurologist called us and said that he needed to see us at 8:30AM the next day. We were petrified. We will never forget that day. This is the day that we learned that Mia has two brain tumors, Optic Gliomas, one on each optic nerve, the tumor is large enough that it is going into the chiasm, which is the area that the optic nerves go through that lead to the back of the brain. These tumors occur in less than 5% of NF kids, but usually are only present on one optic nerve. Since Mia has two and they have become so large that they are in the Chiasm, Mia will be going through Chemotherapy. Mia does NOT have cancer, Thank GOD for that! But they will be treating her as though she does, since the goal is to stop the growth of the tumors. Mia had surgery on Monday (9/15) to implant a port in her chest., starting on that same day she will undergo weekly chemo for 66 weeks. The type of chemo should NOT make her sick and she shouldnt loose her hair. But the Dr made it clear that each person handles Chemo differently, so we will just have to take it a day at a time. We are all doing ok. We are still in shock that our baby has two brain tumors, but are very thankful that they are not cancer and that the chemo has an 85% success rate!
You would not know that Mia has two brain tumors...she is as happy as can be, she is so active, so smart, so caring...I could go on and on. She loves to talk on the phone, she loves her doggie, Vinny, she loves to pucker up and kiss EVERYONE! Even complete strangers. She says "thank you" and "I Sorry" in the cutest little voice. She is truly a special miracle that God sent to us. I am confident that he will take care of her.
UPDATE: Mia made it through half of her 66 week treatment when she started having side effects from the chemo, after taking a 3 week break from chemo, the Dr's decided to switch her to a more mild chemo, she is now on Vinblastine. The Vinblastine protocol is a one year treatment, so Mia will now be getting Chemo until April 2010.
Update 8/09: During her routine MRI, it was discovered that her brain tumors had started to grow. Due to this reason as well as some unanswered NF issues, her oncologist decided to send her to see a Doctor in Washington DC. He is an expert with NF brain tumors. He decided it would be best to STOP the vinblastine and start Mia on Avistan and CPT-11. Mia will be starting this on August 27th. She will be getting her MRI's every two months, they will be scanning her brain as usual but also scanning her spine from now on.
Update 6/2010
Mia has been on a chemo combo of Avastin and Ireneatekan. This combo seems to be working great for her. There has been some very minor shrinkage of the tumors, but overall stability is the goal and we seem to have found that with this chemo. Mia continues to be healthy, no hospital admits at all, she started preschool in Feb of 2010 and just recently finished up the school year. She will be starting full time preschool in the fall and is super excited to be attending the school that her daddy went to.
Mias vision continues to decrease, but we are hopeful that with tumor stability she will be able to keep her remaining vision. She functions very highly despite the dr's concerns about her vision.
http://www.caringbridge.org/visit/miarashkind/mystory
about 6 months ago
Can Mia get 1,000,000 fans to raise awarness of Neurofibromatosis?
Please help spread the word by Linking this page, then sharing and suggesting it to others. It would be nice for this page to reach enough people to one day find a cure for NF! Awareness is the key to a cure! We can't do this alone, we need your help. Thank You
Local eighth grader Bailey Gribben puts his own health battles aside to raise money and awareness for Neurofibromatosis.
By Nina Ruggiero | Email the author | February 7, 2011
While other eighth graders are worrying about getting their homework in on time and making the soccer team, Bailey Gribben is out fundraising for the Children's Tumor Foundation (CTF) to help advance research towards a cure for Neurofibromatosis (NF), a disease he knows all too well.
CTF is the leading non-government funding source of NF research, the genetic disorder that Gribben suffers from. NF causes tumors to grow on nerves throughout the body, including the brain and spinal cord and can lead to blindness, deafness, bone abnormalities, cancer and other complications. NF affects more than one in every 3,000 children born, and half of all cases arise in families with no history of the disorder.
In the past two years, Gribben has endured surgery to remove a spinal cord tumor and three brain surgeries due to a brain tumor, not to mention countless doctor visits and brain and spinal MRIs every three months.
Today Gribben's health is stable, but his seven remaining tumors are still being monitored.
In spite of all this, the Wisdom Lane Middle School student stays focused on his fundraising goals while excelling in school.
"We are very proud of Bailey," said his mother, Anita Gribben. "He is a great kid and a high-honors student."
Last weekend, Bailey gave his family yet another reason to be proud. After raising over $14,000 this year for CTF thanks to family, friends, teachers and classmates while participating in a clinical drug trial to help find a cure for NF, he was honored as an NF HERO at the ROLEX 24 at the Daytona Speedway in Florida.
The CTF car drove 658 laps in 24 hours, and its five drivers included professional racecar drivers Kenny Wallace and Ryan Eversley. Bailey's name was among the names of NF Heroes printed on the car.
The goal was to raise $50,000 to help CTF find a cure. Bailey and the other heroes met the drivers at a gala dinner and then at the track and got to hang out in the garage, sign their names on the car and push the car onto the track at the start of the race. Actor and racecar driver Patrick Dempsey, known best for his role on television series Grey's Anatomy, met with the children and their families.
"The CTF car finished in eighth place and with more than winning in mind, the team raced to help raise awareness and find a cure for neurofibromatosis," Anita said.
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