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Alex; this 17 y. o. exceptional young woman the oldest of 5 siblings with her youngest sibling being a 4 yr old brother; has just found out that she has to have brain surgery. She has what is called an AVM (Arterialvenous Malformation). This is essentially a tumor of blood vessels that are intertwined that have been growing since she was born and can rupture at anytime causing a stroke, brain bleed, seizures, and even death. It is very rare only 1% of the population is found to have these and most are born with them.
It is significant in size. Unfortunately we have found out that it has grown too large to be operated on at this time. Initially the plan was for her to have surgery including coiling and resection but we found out this past week from Boston Medical Center that the blood vessels have connected to the main central artery of her brain making it dangerous and too big to operate.
She will have to start radiation to shrink the tumor of blood vessels and surgery may then be an option. Until this time she is high risk for rupture. She has to limit her life, she will no longer be able to participate in gymnastics or soccer. She can no longer go on Rollercoasters, go hiking, and has to be mindful how much she lifts. She can walk, light jog and still travel. She is grateful to be alive and to have found this. Her outlook is amazing. Despite all the news in the last 2 weeks she said to me, "Mom even if I can't compete I still want to help out my team anyway I can. There are other things I can do to show my support."
She will need to have her brain looked at regularly to make sure everything is progressing in the right direction. At this time the AVM is large and pushing her brain over to the left side causing her symptoms; such as tremors, neck stiffness, numbness and tingling. She was placed on keppra and since starting she has had next to no symptoms feeling much better.
This has been a shock to our family, especially Alex. She is a hard working young woman who has big dreams of graduating and moving on to Albany university for prelaw then law school. She is out going, she loves gymnastics, soccer, making others laugh, and is very family oriented. She is talented in music making honors choir, receives excellent grades and will have a whole semester of college done before even starting college. She is driven, tenacious, goofy, wise beyond her years and always wants to make others feel better about themselves and take their burdens when she is going through her own hardships. She has always been one of the strongest young woman I know and I have always been an awe of her.
She will need to have her brain looked at regularly to make sure everything is progressing in the right direction. At this time the AVM is large and pushing her brain over to the left side causing her symptoms; such as tremors, neck stiffness, numbness and tingling. She was placed on keppra and since starting she has had next to no symptoms feeling much better.
This has been a shock to our family, especially Alex. She is a hard working young woman who has big dreams of graduating and moving on to Albany university for prelaw then law school. She is out going, she loves gymnastics, soccer, making others laugh, and is very family oriented. She is talented in music making honors choir, receives excellent grades and will have a whole semester of college done before even starting college. She is driven, tenacious, goofy, wise beyond her years and always wants to make others feel better about themselves and take their burdens when she is going through her own hardships. She has always been one of the strongest young woman I know and I have always been an awe of her.
She is very close with her younger sister who is only 15 months younger then her. This has devastated her as well as myself her mother and her step father.
It is very rare to have teenage daughters that are exceptional young woman and have great minds and insight into themselves. We are hoping to raise these funds to help cover medical costs.
It is very rare to have teenage daughters that are exceptional young woman and have great minds and insight into themselves. We are hoping to raise these funds to help cover medical costs.
After meeting with Boston Children's and Mass general this past week we feel we have a little more control over Alex's situation as we have an amazing team behind us. Oncology, Vascular, Neurosurgery, working together to come up with a great plan to help her and us. We will have to travel to Boston quite frequently and have radiation treatments with MRI's and scans to see progression, but there is nothing we would not do for our girl.
Any contribution is appreciated and will be helpful. We thank all of you for reading this and thinking of our amazing girl. She is a an exceptional young woman and I am honored to be not only her mother but to have her as my best friend.
We appreciate all the prayers and thoughtfulness that family, friends and the community have given us and continue to support us with. Your generosity, prayers and support are what continue to get us through. Its amazing to know that others are so selfless especially in times of other crisis.
Thank you
We appreciate all the prayers and thoughtfulness that family, friends and the community have given us and continue to support us with. Your generosity, prayers and support are what continue to get us through. Its amazing to know that others are so selfless especially in times of other crisis.
Thank you
Jessica and Thomas Foulke