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Jaclyn Amanda .JPG)
Welcome to Jaclyn's Web Page. It has been provided to keep people updated about her care and for friends and famiy to keep in touch with the Murphy's during these times. Jaclyn was diagnosed with a medulloblastoma on March 26, 2004. Jaclyn underwent surgery, radiation and chemo. Her parents stopped the protocol in March 2005 because of the adverse effects of the chemotherapy. Due to treatments, in March 2006 Jaclyn was diagnosed with Celiac Disease, where her body cannot tolerate gluten. Please continue to pray and visualize Jaclyn's full healing. (Picture taken October 2008 in Poughkeepsie, NY--Courtesy of Carolyn Spranger)
Here is something that Jaclyn wrote in 2007 (she is now 14!!) for a foundation, Luca's Light, which raises money for pediatric brain tumor research:
My name is Jaclyn Murphy. I am currently 13 years old and was diagnosed with a life threatening brain tumor, Medulloblastoma, at the age of 9. My life changed in an instant. Having a brain tumor has taught me so much. It has taught me to stay positive no matter what happens in life, to accept what is going on, and to never lose faith. I have learned at a young age to live life to its fullest everyday. Sometimes, that is difficult because the way that I feel. I am not able to do the things that I was able to do in the past. For example, I still cannot play my favorite sports, lacrosse and soccer. I tire easily and have shortness of breath. I get frustrated when I cannot complete my school work as quickly as I used to. Socially, I have lost many of my friends. I spend a lot of time getting well while my friends and kids my age continue to be normal teenagers. At the same time, I know that I am blessed. I have learned the value of each and everyday. I have met amazing people along this journey who support me and inspire me to get well and be the best that I can be. I have learned the value of acceptance and believing that I have a special purpose. Research is so important so that we can STOP this living hell for all these children. No one should have to endure this dreaded disease. I pray and wish for a cure so that no more children will have to experience brain tumors, surgeries, radiation, and chemo. Everyone suffers when a child is diagnosed. The child, the parents, the sisters, and brothers. It has an affect on the entire family and everyone who is close to the child. There needs to be more awareness, research, and help for all the children. It is my hope that no other child will have to go through the disease of having a brain tumor.
TARYN'S SPEECH TO INTRODUCE THE CHILDREN AT OUR BANQUET, 3/7/09
My name is Taryn Murphy and my life changed suddenly at the age of 7, when my sister, my best friend, was diagnosed with a brain tumor. My happy, carefree life was torn away in an instant. My new life included watching my sister go through surgery, radiation, and chemo. I was separated from my family, as my parents needed to take Jaclyn to her daily appointments. There were so many times when I felt alone, helpless, and scared. I was on the SIDELINES, not knowing what could possibly happen. Siblings are affected, too, when a child is diagnosed. Unless you have experienced this, you could never understand.
This past October, I became the FIRST sibling to be adopted by a team through the FRIENDS OF JACLYN foundation. The Williams Softball team became my big sisters. They give me the love, support, and friendship and help me to feel safe while being on the sidelines. It is a special bond and I love having them in my life. It is my hope that all siblings will be given the opportunity to be adopted so that they, too, will never have to feel the loneliness while their sister or brother is getting well. I would like to introduce the siblings, as well as the children who continue to fight the battles of a brain tumor because together we can win this fight. As I call your name, please join me at the podium.
Journal
Sunday, July 5, 2009 8:39 PM CDT Hello Everyone!
We hope everyone had a fun, relaxing 4th of July! We feel summer and the feeling of just being. This year we are doing things that we don't normally do. . .since we moved back to NY we have always been at a 4th of July party with our friends in CT. This year they opted not to have it. We also are used to driving to Camp Sunshine. This year there were new rules and we were not allowed to return. I don't push anything or force anything as it is not natural to do so. So I let it be. . . My feeling is it is a part of our lives that are behind us and that is where we will let it be. . . Taryn was very disappointed today knowing that many of her friends were returning and our volunteer friends would also be there without us. Lessons to learn that you must live in the moment and not force things in your life, for when you do it isn't meant to be. So we know we are in a better place and do not need the things we needed in the past. Jaclyn is well, we are blessed and we move on. Appreciative for the past experiences and know how much it touched our lives, but Jaclyn is in such a great place and there are so many other families who need this experience, so we give thanks and know that there are better things that await us. . .
We had an awesome time at Rock of Ages--thank you Bridget for the opportunity to see this awesome show--Constantine from American Idol was a hit and we loved to watch him rock!! We love NYC and seeing broadway shows whenever we can.
Jaclyn did an awesome job on CNN last Monday. What an experience and this was after her day at Sloan. It was recommended that she go on a synthetic thyroid medication for the rest of her life. I was not happy to hear this and will research this in more detail. She is not fond of the medical profession and wants to do things naturally. They also validated that she will not grow any more. I actually got mad at myself for allowing them to do an x-ray to validate this. Why do we need to know. Normally we don't monitor our children's growth. We were already told that she may not grow, so why would I want her to be x-rayed to validate this? Why not just live life and see what happens??? This BT world makes you crazy some times and I am mad that I did not think of this before the fact. We already agreed to not do growth hormones because of the side effects and the possibility of tumor growth--who needs that when you had a bt??? Anyway, I spoke to Jaclyn today and shared my feelings that it is her life. She may only be 4' 10", but who knows what God has in store for her--we already know it is great. The doctors just want to continue their research and prove their theories. We are not a theory--we are our own self and guided each day by God--not science!!!
Now that I have vented. . . sorry. Please know how much we appreciate your love and prayers and when you put thoughts in your mind you plant outcomes. Planting only seeds of love. . .
We love you all and celebrate everyday,
The Murphys
Read Journal History
Links: http://www.friendsofjaclyn.org our foundation
http://www.walkingonroses.com flip flops Jaclyn's garden of healing
http://www.dashpoemmovie.com
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