http://www.christianandsheila.org/diary/index.php http://www.christianandsheila.org/diary/index.php?entry=entry080919-081109 Date: Friday September 19, 2008

Time: 7:00 p.m.

Place: Tekoa Country Club - Westfield, MA

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Time: 7:00 p.m.

Place: Tekoa Country Club - Westfield, MA


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Doug and I want to welcome you all for joining in us at this Picnic-in-the-Park, a place that holds many beautiful memories from growing up just a quarter mile away. My brother, Jimmy and his wife, Kristin, have been especially instrumental in the creation of this event and for this we are extremely grateful.

Almost five years ago, our lives changed dramatically in a second when we were told Christian had a large mass at the base of his brain, an ambulance was on its way and surgery was imminent. Some of you, undoubtedly, have had similar experiences and know, like us, that life can change on a dime forever. When a child’s life is threatened, or taken, all laws of the natural universe are broken and I believe the earth tips a little more on its axis for all touched by this sort of loss. For those of you who have suffered so, I pray for peace and hope from a merciful God who promises us life eternal.

Since September of 2002, Christian and I have had over 50 scans, 14 cancer recurrences, seemingly every surgery and treatment known to Mankind, times of deep darkness and times of great joy. We have seen horrors involving other child that words cannot describe and we have seen faith emerge from the most astonishing places. People frequently ask how Doug and I can get out of bed and go about our days, whether those days involve hospital marathons, bedside vigils, work and the seemingly normal activity of having two boys in school and a daughter in college. For us, there is a passage in the Bible that best illuminates our feelings. It is from Isaiah 30:19 and reads: “ How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes, you will see them. Whether you turn to the right or to the left, your ears will hear a voice behind you saying, “ This is the way, walk in it.”

We carry this passage with us in our hearts every day and work hard at becoming open vessels for the Spirit to work through us and guide us on our journey. We have met laity and religious leaders from countries all over the world, been anointed with frankincense from Tunisia on our tumor areas and been blessed with waters from the wells of Medjugorje, Yugoslavia, Ireland and Lourdes, France. Candles have been lit for Christian and me on every continent except Antarctica and prayers have been offered up by thousands of people across the world who know of our situation.

At home in Newton, Mass., we have been embraced by our community as friends continue to cook for us, take me to chemotherapy or radiation, watch the boys when I am unable to, and remain available, at a moment’s notice, to ease our burdens. My Mom has been especially generous with her time, traveling to Newton to take care of me, much as I take care of Christian; she has provided enormous strength and evenness to a household often turned upside down by turmoil. My Dad taught me, from an early age on, that when difficult challenges come, I was to be strong in energy and spirit and never quit; this lesson alone has served me extremely well in all aspects of my life, before and after cancer. My twin, Nancy, who is not able to be here this afternoon, is truly my other – tu eres mi otra – as we always say to one another in Spanish. And my husband, Doug, remains the Rock of Gibraltar for all of us; a true and present partner at home and at work, steadily doing research into the wee hours of the night on our cancers so that Christian and I have the best chances for long-term survival. Without him, we would not be where we are today but I knew, from the day I met Doug at the Westfield YMCA, this 22-year-old from Chicago, that he was the one all storms could be weathered with, with whom profound happiness would be experienced and that, through it all, we would stay together to build a life that included kind children, close family and friends.

When we had children, we committed to do all we could to raise them to be resilient people, so they could stand on their own and be sturdy as oaks in times of great trial, and we asked God, and continue to ask God, to help us to raise them to be emotionally and spiritually healthy, believing that all else will follow. We have been blessed to execute this philosophy, as a family of five, with two extremely rare cancers; it is not exactly a smooth ride and no end of treatment remains in sight for either Christian or me. Stephanie, Cameron and Christian all possess the characteristics we want most and remain unfailingly happy and positive, despite the circumstances that surround their lives. They are all heroes and brave beyond measure.

If there is anything I could have myself it would be to be able to hear from veterans who have survived the ordeal of being both patient and caregiver, simultaneously, but that is a rare commodity. There is a deep loneliness to having cancers that are considered orphans, because of their lack of occurrence. I miss the sisterhood breast cancer patients have since only 1 in 700,000 people has leiomyosarcoma and Christian is part of a population that, thankfully, affects only 180 children a year, under the age of 18 in the United States. Someday, it is our hope to direct funding to Orphan Cancers and lend support to people who do not have the big four – breast, prostate, colon and blood cancers. Over the years we have helped raise over $40,000 for research at Dana-Farber and The Jimmy Fund at Children’s Hospital in Boston. Now that Christian and I are patients at Mass General, where we believe less conventional diseases are more aggressively treated, our plan is to begin there and then move outward with funding for the research front.

Being in Westfield today is bittersweet because we would love to be celebrating Christian and me being cancer free. This, however, is not God’s plan right now and we must play the hands we are dealt. We have become quite competent at enjoying the small moments of grace in our lives and this gathering here, today, is a big one! Doug and I know that months of planning, organizing, soliciting donations for the raffle and silent auction, securing the site and the date, the food, the entertainment, and funding for such a great celebration of life is no small undertaking. We thank the Committee for the countless hours of time they unwittingly gave to put this event together and will be grateful, for the rest of our lives, for this memorable day. We are deeply humbled.

In closing, I would like to leave you with a thought sent to me by a friend in London this week and credited to Phillips Brooks:

Do not pray for easy lives; pray to be stronger men and women. Do not pray for tasks equal to your powers; pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but you shall be a miracle. Every day you will wonder at yourself, at the richness of life which has come to you only through the grace of God.”

Each day truly is a miracle. Thank you, from the bottom of our hearts, for sharing in ours today.


5.20.07
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