The answer to this question, especially lately, is Claire is doing alright this is a hard time for her. She is still in pain, unable to walk and has lost some functioning in her arms etc. She has been through so much suffering and problems since her diagnosis 7 yrs. ago. To update, (from a lay man's and mother's perspective) Claire was diagnosed with JPA (juvenile pilocytic astrocytoma) back in 2003. After they discovered the brain and spinal tumors she underwent 2 yrs. of chemotherapy and 3 mo's of radiation. She was able to walk at this time, and for the most part lived a pretty normal life. Claire then began having surgeries to try to remove the tumors in the top and bottom of her spine, which the radiation and chemotherapy were not able to shrink. The surgeries were successful in that they removed the tumors but a portion of her spine was removed as well.
As a result Claire has suffered from the different types of therapy she has undergone, and has struggled with coping with absence of the tumors rather than their presence. Her appetite was diminished due to chemo. so she then began intestinal feedings in the evenings in 2005. She developed caiphosis (sp?), a curvature of the spine, given the surgeries. And, as a result of the curve she had a spinal fusion surgery-rods and screws placed around her spine to straighten her posture, and these eventually caused complications and infections. They were temporarily removed with another surgery which caused her spine to be crushed so she underwent another 10 hr. spinal fusion surgery. Life did improve after this. Claire worked hard and was able to walk with a walker and lead a normal. In 2008 Claire maintained a 6-9 month respite of good health and improvement.
Sadly, Claire later began showing signs of problems and complications. Last May 2009 she had surgery because spinal fluid build up was putting pressure on her spinal cord and the build up prevented Claire from walking and other problems. As a result of this correction other symptoms and difficulties developed. To sum up, Claire had many different spinal and brain surgeries to try to correct or maintain leg movement and other functioning. Unfortunately they were not successful and Claire lost the ability to use her legs. She also had a central line surgery, a broviak, placed into her chest because of her major weight loss and she began having intravenous feeding.
Within the last year Claire has had over 10 different kids of surgeries. She has spent over 4 months in the hospital.
Although her life may seem overwhelming given all of the complications and problems Claire has endured she has still been able to work and keep up with school. She is very smart and able to maintain a very rigorous Freshman yr. curriculum. Claire enjoys sewing and listening to the Giants games, especially when they win. Given all of Claire's struggles and sufferings, our family has been graced to witness her persevering in faith and devotion. She never questions her struggle, or her purpose. Sure she has her moments of anger and frustration, still she perseveres in hope and grace.
Now, Claire has the once in a lifetime opportunity to travel to Lourdes. The Orders of Malta have very generously given Claire a pilgrimage opportunity to Lourdes. We are so very blessed to be a part of her pilgrimage. We are so very thankful to God and the Blessed Mother for their gifts of grace and blessings.
In addition we want to thank our very generous family members and our parish. Without their help we would not be able to go. I want to thank Fr. Jerome Cudden for his direction to the program, to Fr. James Moore for his help with the application process, and Fr. Jerry Brown for his help in being a part of the trip. May God Bless you all and continue to strengthen your priesthood.
We ask you for your prayers and be assured of our prayers as we travel to France.
May God continue to bless us, and may His will be done.
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