Hi everyone The Marathon Mom is Back,
It is that time of year again when I ask all of you to donate for a great cause-The Childrens Tumor Foundation. You can read more about Neurofibromatosis or NF at www.ctf.org
So you may be asking yourself why does Lisa always ask me to sponsor her for her marathon that she does every Labor Day weekend. First let me tell you that this is the 6th time that I will be doing the Virginia Beach Marathon and this year for the fourth year in a row I am the team captain.
Let me tell you a little bit about my beautiful angel Meadow who is turning 9 years old on July 14th. Meadow was diagnosed with NF when she was 15 months old. When I was pregnant with Meadow she was having trouble. She was born a month early. By the age of 18 months she had her first feeding tube which went through her nose 6 weeks later she had surgery to have a G-tube put in. In December of 2005 she had a G-J tube put it. She has to have this tube changed every 3 months. This is horrible. In July 2008 we were able to switch Meadow back to a G tube and Tim and I change this at home every 4 to 6 months. Meadow also has a plexiform tumor in the left carotid space which starts at her brain stem and goes down to C3. This tumor while it is stable now is attached to her airway and jugular vein and is very unpredictable. Meadow also has learning disabilities, ADD, a plexiform tumor on her stomach, tumors on three parts of her brain and tumors on her scalp. Meadow has also lost the hearing in her left ear from her tumor. In October 2006 she had a 5 hour surgery where they took her ear off and took all the bones out to improve her hearing and this did not work. Meadow now uses hearing aids. We travel 3 hours one way to Children's Hospital in Philadelphia. Usually about every two weeks. She does not enjoy going there and she is at the age where she is asking a lot of questions about her disorder.
Meadow is still having a lot of issues with her tube feeds and vomiting, we just had an MRI in June of her stomach and intestines to make sure no new tumors were growing and to try and figure out while she is vomiting, the MRI was stable but we have no answer as to why she is vomiting. She is still tube fed 10 hours a night and she is eating small amounts of food by mouth by this is slowly decreasing due to the vomiting.
Let me tell you what Meadow's favorite things are: She LOVES Linkin Park-this girl can rock out, she loves pugs especially Mug and Pug who come to every appointment she had, she loves Care Bears and Star Wars R2D2 is her favorite she loves her five cats Melman, Tanner, Belle Starr, Annie Oakley and Luna and most of all she loves her big sister and best friend Ashley. We try and make everyday special for Meadow and try and treat her as normal as possible even though she has so many health issues.
We know this year has been very difficult for everyone financially, most of our friends have lost their jobs or had their salaries decreased but NF never takes a break because of a recession, we need your help now more than ever. Please donate something, even if its a small amount, no amount is ever too small!
The Childrens Tumor Foundation is working hard to get those puzzle pieces together and hopefully in Meadows lifetime there could be a drug therapy to help reduce or stop tumor growth. These tumors are unpredictable and can grow very quickly at anytime. NF is a genetic disorder that affects 1 in 3000. NF can cause blindness, deafness, curvature of the spine, learning disabilities, tumors to grow anywhere in the body and high blood pressure. Some of these tumors can turn malignant.
Please donate today. Help us get those puzzle pieces together for a cure. If you choose to donate by mail please send it to Childrens Tumor Foundation 95 Pine Street 16th Floor New York, NY 10269
Make your check payable to the Childrens Tumor Foundation and include my marathon number on the check VB-1216_09
Meadow, Ashley, Tim and I thank you so much for your help and for supporting us. God Bless!!!
You can check up on Meadow at her website www.caringbridge.org/visit/meadowquinn Love, The Quinns Lisa, Tim, Ashley and Meadow
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