Well, on four weeks to the day of our sweet Caitlyn passing,her brother Jackson broke his two front teeth and split his lip which required only one stitch. It was very hard for me to be in the hospital with Jackson. It's strange to spend a whole year of your life in a hospital trying to save someone and then to all of a sudden not have to go there anymore. I didn't think about how it might feel or that it might be hard. But once we were in the ER Jackson and I both felt it. A sadness in our hearts and a sickness in our stomachs. Once they dismissed us we couldn't get out of their fast enough. Jackson is doing great and the dentist was able to bond his original teeth back on. We will see how long he can keep them on.
These weeks have been hard for us with pangs of sadness coming and going. I am constantly reminding myself that the world does not stop and if I stop it won't bring her back. So I try and move forward everyday. I set aside time each day to sit in her room and read a meditation book on loss.I have found this to help somewhat but I still have my moments and break down.
While Caitlyn was alive we visited the Wellness Place. This is a non-profit cancer resource center for people with cancer or anyone touched by cancer. They have a lot of supportive resources. The boys still meet with Lori Mackey once a week. She helps them explore their feelings about Caitlyn and death through art or anything they are interested in. Sometimes they bring a game to show her. Lori has offered to meet with any of Caitlyn's friends who might be having a hard time with the loss of their dear friend. It might be helpful for them to see other people their age that they know and who knew Caitlyn and are feeling the same way they are. If you are interested in your child doing a group meeting with Lori or single meeting please email me and I will help coordinate this.
Thank you to all who have sent cards. Your love and prayers are very much appreciated.
Kara
Monday, July 28, 2008
Thursday, July 17, 2008
Chicagoland Ride for Kids
Thank you to everyone who made a donation to Ride for Kids in memory of Caitlyn and in support of Rosie Colucci. Although it was a difficult day, we know Caitlyn would be happy to know that we were there to support her buddy Rosie.
Over 1400 motorcyclists came out to support the cause. It was very moving to watch the huge turnout for this event. We watched with tears in our eyes and heavy hearts knowing that it was too late for Caitlyn. We also watched with hope that one day all the hard work, dedication, fundraising, and research will make a difference for Rosie and other children diagnosed with cancer.
Rosie, rode in the parade of motorcyles with her sister Bella, and mom JoAnne on a cool looking motorcycle with a sidecar. During the Celebration of Life, Rosie was invited on stage, and she did great. She was not the least bit shy and happily told the large crowd her name, age (3), and what her beads of courage were for. Each bead represents a treatment, needle poke, hair loss, surgery, chemo day....and as you can see she has quite a loooong necklace.
The Colucci/Moffa team raised $10,010!!! They were the 5th top fundraiser at the event. (www.firstgiving.com/aprilmoffa). There are Ride for Kids in various cities throughout the year and Chicago is actually leading the nation with $387,000
Thanks again for your support.
http://www.carepages.com/ (Rosiespage)
.
Wednesday, July 16, 2008
Passed!
CureSearch Praises Passage of Landmark “Conquer Childhood Cancer Act”
by Unanimous Consent in the United States SenateChildren with Cancer and Their Families to Benefit from Legislation
July 17, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.
The bill, introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed without amendment by unanimous consent, echoing the 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) on behalf of Senator Reed and himself asked for unanimous consent to proceed with consideration of the bill on the Senate floor.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.
“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Reed. “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
“Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer,” said Coleman. “I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure.”
CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90 percent of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.
“The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” stated Gregory Reaman, MD, Chair of the Children’s Oncology Group.
"On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer.”
“We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed,” said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
by Unanimous Consent in the United States SenateChildren with Cancer and Their Families to Benefit from Legislation
July 17, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.
The bill, introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed without amendment by unanimous consent, echoing the 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) on behalf of Senator Reed and himself asked for unanimous consent to proceed with consideration of the bill on the Senate floor.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.
“Too many young people’s lives were cut short by cancer, but their hopes were not,” said Reed. “We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs.”
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
“Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer,” said Coleman. “I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure.”
CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90 percent of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.
“The Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” stated Gregory Reaman, MD, Chair of the Children’s Oncology Group.
"On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer.”
“We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed,” said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
Thursday, July 10, 2008
The loss of even one more child is one too many
The Conquer Childhood Cancer Act passed the House 2 weeks ago. We are thankful to Representative Deborah Pryce(OH) who authored the bill in memory of her daughter Caroline who died of Neuroblastoma nearly 10 years ago.
Now we need the Senators to support it so it can be voted on and passed. It should have already been there, but 3 Senators in particular have put a "hold" on the vote.
Those 3 Senators are:
1.) Senator Tom Coburn (R-OK)
2.)Senator Jon L. Kyl (R-AZ)
3.)Senator Michael B. Enzi (R-WY)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Did you know....despite decades of significant research progress, cancer remains the number one cause of death by disease in children. Every school day, 46 children, or two classrooms of students, are diagnosed with cancer in this country,” said Stacy Pagos Haller, Executive Director, CureSearch National Childhood Cancer Foundation. (www.curesearch.org)
“Each day that childhood cancer goes under-funded the road to discovering new treatments and cures becomes longer and more children die. The loss of even one more child is one too many. We hope that the passage of the Caroline Pryce Walker Conquer Childhood Cancer Act will have a positive impact on children now and in future generations.”
Little progress has been made in the past 30 years in prolonging the lives of children diagnosed with diffuse intrinsic pontine glioma. Treatment options are limited, and survival statistics beyond horrifying.
Caitlyn fought brave and valiant battle these past 13 months. She opened our eyes to the fact that she was one of many children fighting childhood cancer. The Conquer Childhood Cancer Act would ensure there is funding for research and advancement in treatment. No child should have to suffer from cancer. If a child has to get cancer there should be cure. We hope that the Conquer Childhood Cancer Act will make sure kids with cancer have a better chance.
Now we need the Senators to support it so it can be voted on and passed. It should have already been there, but 3 Senators in particular have put a "hold" on the vote.
Those 3 Senators are:
1.) Senator Tom Coburn (R-OK)
2.)Senator Jon L. Kyl (R-AZ)
3.)Senator Michael B. Enzi (R-WY)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Did you know....despite decades of significant research progress, cancer remains the number one cause of death by disease in children. Every school day, 46 children, or two classrooms of students, are diagnosed with cancer in this country,” said Stacy Pagos Haller, Executive Director, CureSearch National Childhood Cancer Foundation. (www.curesearch.org)
“Each day that childhood cancer goes under-funded the road to discovering new treatments and cures becomes longer and more children die. The loss of even one more child is one too many. We hope that the passage of the Caroline Pryce Walker Conquer Childhood Cancer Act will have a positive impact on children now and in future generations.”
Little progress has been made in the past 30 years in prolonging the lives of children diagnosed with diffuse intrinsic pontine glioma. Treatment options are limited, and survival statistics beyond horrifying.
Caitlyn fought brave and valiant battle these past 13 months. She opened our eyes to the fact that she was one of many children fighting childhood cancer. The Conquer Childhood Cancer Act would ensure there is funding for research and advancement in treatment. No child should have to suffer from cancer. If a child has to get cancer there should be cure. We hope that the Conquer Childhood Cancer Act will make sure kids with cancer have a better chance.
Saturday, July 5, 2008
walking through the dark
It has been one week since Caitlyn passed away. I get up every morning and go through the motions and put on my costume of a strong mother, So that the boys won't see that part of their mother has died too. I make it through the days and wait for the sun to set. That is when I can take off my costume, get into bed, pull the covers over my head and escape this hell through sleep. This first week felt like she was still with us just in her room sleeping or spending the night at her grandparents house. But now it is hitting me that none of those are the case. I only let myself think about how sad and lonely I feel inside for a few moments. For I fear it will wash over me like a wave and I will drown. I sit in her room for only a few minutes a day and then pull myself out before it's too late and I find myself never leaving. For me I feel grief is not something I can feel all at once. I have to allow myself to experience it only in bits and pieces at a time or I feel I may disappear.
The boys had a great birthday and the mothers and friends from STS put on such a great surprise birthday party for the boys that it really made their day. Also thanks to Midtown athletic club for hosting the party. Thank you all so much for thinking ahead for the boys happiness. Also my dad John, Margaret and myself worked hard this week and planted a Caitlyn garden in the yard. It looks great. Just when we finished planting everything we got that big rain storm on Wednesday. We all laughed that it was Caitlyn saying " no more little watering cans for me. Look what I can do". And she watered those flowers good.
Thank you to everyone who has helped us and sent cards to us. Thank you for holding us all in your prayers we truly need them now.
Kara
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