tag:blogger.com,1999:blog-24289013335545889762024-03-06T12:01:34.411-08:00Enough for NowSabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-2428901333554588976.post-14523219049833142852017-05-29T17:00:00.000-07:002017-05-29T17:00:33.950-07:00Our Memorial Day<div dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">May 29, 2013. Four years ago today we sat in Dr. Brown’s office at Children’s Hospital of Los Angeles waiting for the results of the MRI scan. Our “scanxiety”—as they call it—was high. Three weeks prior Sam’s behavior had taken a subtle, but noticeable turn for the worse. His balance was off, his focus was diminished, and there was an increased amount of “glazed eye” episodes—times he just wasn’t paying attention to us. None of these things, of course, were normal for Sam. He had been a healthy, energetic little sparkplug, and a highly attentive, focused and high-achieving learner. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyE9CwUtrulQ-5tR6pHAcvZYfdXirHA9hqcp1T8Osirattw4a6rR3p9ZxWRMjz5Yha3K1qQzLnFIsfAF1JUF7NpguUjhbhsbRlqTIOGRWvaT-vdlNVz1iCdr7sfOavjYqK_tiYnDD3BXI/s1600/581078_10200126342112681_779969904_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="453" data-original-width="604" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyE9CwUtrulQ-5tR6pHAcvZYfdXirHA9hqcp1T8Osirattw4a6rR3p9ZxWRMjz5Yha3K1qQzLnFIsfAF1JUF7NpguUjhbhsbRlqTIOGRWvaT-vdlNVz1iCdr7sfOavjYqK_tiYnDD3BXI/s200/581078_10200126342112681_779969904_n.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_DNhrY0YsW_fBUFfWMCI98dMbw6CuKaAkJfPnhJpT7aC6BpFJvfD3YJVuHgIe-MTzaRVJenIwiZstz-vA2LVlSzK2KpUnEN9AmO2aG1iZ3bIEa_mXWP3FVCnLNTwrzjAhFxHDMYFWL8/s1600/Sam+Pic+%25234.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_DNhrY0YsW_fBUFfWMCI98dMbw6CuKaAkJfPnhJpT7aC6BpFJvfD3YJVuHgIe-MTzaRVJenIwiZstz-vA2LVlSzK2KpUnEN9AmO2aG1iZ3bIEa_mXWP3FVCnLNTwrzjAhFxHDMYFWL8/s200/Sam+Pic+%25234.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj87UUoS5p4judBFLB4JNKihMUhK4_taVfec0Nj_73XJrh2IBsUvNfCgZdVEpzPUKff-iPUz44rt6Qj25uveDwvgX6yeWvjUz9ZNTcix1frH3DhDK8X8rsnhZZnfo_dk3h8pcxqK-wA_94/s1600/330193_4990499078010_1814830064_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1097" data-original-width="1097" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj87UUoS5p4judBFLB4JNKihMUhK4_taVfec0Nj_73XJrh2IBsUvNfCgZdVEpzPUKff-iPUz44rt6Qj25uveDwvgX6yeWvjUz9ZNTcix1frH3DhDK8X8rsnhZZnfo_dk3h8pcxqK-wA_94/s200/330193_4990499078010_1814830064_o.jpg" width="200" /></a></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">All of that came to an abrupt halt starting around May 29, 2013. Dr. Brown came into the room and sat down. I can’t recall exactly who spoke first. It might have been Sam—that would not have been out of character for him at all—but someone asked what the results of the MRI were. I do recall very clearly what Dr. Brown’s response was, and he addressed Sam directly:</span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">“Well, Sam, everything is relative.” Then he drew a picture of how large the three—yes, there were now three—tumors growing in Sam’s head were. Each was bigger than the last time, and Sam knew it.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq5CQ-MjklwJQT1GQ9nTv2SJSeJJTJQ3coBnOVM8pdt6lu70jxqyiX9QEG1JSwvOPK59OXGLpR202sfsxNQRVCpEOh_L0PXt_E7ZZOcnnTIdtzbpR8kMgU3_AxxHJlltIiSkA6tpAeHco/s1600/223.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq5CQ-MjklwJQT1GQ9nTv2SJSeJJTJQ3coBnOVM8pdt6lu70jxqyiX9QEG1JSwvOPK59OXGLpR202sfsxNQRVCpEOh_L0PXt_E7ZZOcnnTIdtzbpR8kMgU3_AxxHJlltIiSkA6tpAeHco/s200/223.JPG" width="200" /></a><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Sam: “Wow…That’s surprising…Because…I mean…We were just thinking that the tumor was going to be this big (holding out his hand and forming a tiny circle with his thumb and index finger).”</span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The rest of that brief meeting at CHLA is still a blur to me. We were told by someone—though I don’t think we actually comprehended the magnitude of this at the moment—that Sam would be placed on hospice. We staggered out of there and found our way down the street to the local Denny’s—Sam’s favorite restaurant and what had always been a haven for him, a respite from the poking and prodding and scans of the hospital. Although Sam ordered “the usual”—mac-n-cheese, grapes and goldfish—I think even Sam suspected that “this time was different”. Although he did not know that he was now terminal, I believe he knew things were not good.</span></span></div>
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<span style="background-color: transparent; vertical-align: baseline;"><span style="font-family: Georgia, Times New Roman, serif;"><span style="white-space: pre-wrap;">As we’ve written about before, on the ride home, on the Ventura highway, with the vast blue ocean to our left and the looming mountains to our right, Sam lashed out, and for the first time in his battle against cancer he cried: “It just seems like everything is just…just…IMPOSSIBLE!!!” he screamed, with tears streaming from his beautiful hazel eyes. It was at once both the angriest and saddest moment of my life. </span></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Realizing that your child will die—soon—is like getting every bit of air, every ounce of life, squeezed out of you. It was at that moment that I felt that I had absolutely failed—utterly, completely, 100% failed—as a father. I felt that I had let my little boy down by not doing enough. I didn’t really know what that “enough” was, or what I should or could have done, but I felt like a hollowed out shell of a person nonetheless. </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As a parent our fundamental concern is the health and well-being of our children. It is our utmost priority. It is the foundation upon which our children’s future happiness and achievements rest. When we watch our children get hurt, even a minor injury, it hurts </span><span style="background-color: transparent; color: black; font-style: italic; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">us</span><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. And so the pain of something like childhood cancer is indescribable. No child should ever have to suffer through it. No family should ever have to suffer alongside them. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRksO3Bl5JvjdFVWkZ7UR2scx3UZRJHuWA311xCxIPk11LwGGWbHbOOrdDpyJVYooxNnvygXwyzvGgPlumIYizmnYxVAyu8DjVNMOGXakpte56vNZ0sGIXZ6VH2U6MxWJeC97lLK1QNjk/s1600/13620926436_ORIG%255B1%255D.jpeg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="320" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRksO3Bl5JvjdFVWkZ7UR2scx3UZRJHuWA311xCxIPk11LwGGWbHbOOrdDpyJVYooxNnvygXwyzvGgPlumIYizmnYxVAyu8DjVNMOGXakpte56vNZ0sGIXZ6VH2U6MxWJeC97lLK1QNjk/s200/13620926436_ORIG%255B1%255D.jpeg.jpg" width="200" /></a><span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There is a solution, though. It isn’t immediate, it isn’t an elixir in a bottle or a quick fix, and it certainly isn’t easy, but a long-term solution is in the offing. It’s called research. And our take on research is that money spent on adult cancer research does not often “trickle down” to benefit children, but money spent on childhood cancer research can and does “trickle up” to benefit everyone. That’s why we do what we do at </span><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><a href="http://www.samjeffersfoundation.org/" target="_blank">Sam’s Foundation</a></span><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHPkr81m4W0aAby7Xzc7LxVqCIYFNsmvPaHswyOKVpBxwEaU6jm-X6TswJCaHfIDHAIDSmSpqL0jp5VicmwAeEvVVbNMX0z-N4EQAy4QV3VkPJa1ll8YZuk2p7p8NvSix8aX7dw6NWQN0/s1600/Visiting+with+Sam.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHPkr81m4W0aAby7Xzc7LxVqCIYFNsmvPaHswyOKVpBxwEaU6jm-X6TswJCaHfIDHAIDSmSpqL0jp5VicmwAeEvVVbNMX0z-N4EQAy4QV3VkPJa1ll8YZuk2p7p8NvSix8aX7dw6NWQN0/s200/Visiting+with+Sam.JPG" width="200" /></a><span style="background-color: transparent; color: black; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Today, as we remember and pay honor to the many selfless men and women who gave their lives in service for our country, so too do we remember the many children who have lost their lives to this terrible disease called cancer. Thank you to all of you for your continued support of Sam’s Foundation. It is making a difference.</span></span></div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com11tag:blogger.com,1999:blog-2428901333554588976.post-40201702017924721452017-04-02T09:00:00.000-07:002017-04-02T09:20:22.254-07:00Birthdays & Black Holes:<div dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4PKtlgbPd7BJkJ4q1kZi9y3WaxhCL5vL5ITQUYaYIGeMmKacNsth6IwSaBzY1zxOXzE8x7G5o9J2jRi8P7llT3SUtFJ39yBaTQ2a0su8n27jsM-m0IV1a3_S5dY1ikk1T_glpev6YjLk/s1600/163516_10200839633410890_961258252_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4PKtlgbPd7BJkJ4q1kZi9y3WaxhCL5vL5ITQUYaYIGeMmKacNsth6IwSaBzY1zxOXzE8x7G5o9J2jRi8P7llT3SUtFJ39yBaTQ2a0su8n27jsM-m0IV1a3_S5dY1ikk1T_glpev6YjLk/s320/163516_10200839633410890_961258252_n.jpg" width="320" /></a></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Today our son Sam would have been 12. When I originally sat down to write this blog I had plans to make it cheerful or at least upbeat—really. After all, a birthday should be a celebration of life. But the truth is…that’s really not where my heart is right now. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The struggle between how you’d </span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">like</span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> to think and feel—in contrast to the </span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">reality</span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> of how you think and feel having lost a child so young—is palpable. Bereaved parents don’t </span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">want</span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> to be “Debbie Downers”; we don’t </span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">like </span><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">feeling sad; but sometimes that’s just our own personal reality. The “new normal” as they say.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Don’t get me wrong. There is a lot to be thankful for and, perhaps even more so than others, bereaved parents are indeed thankful for what we still have—our other children, our spouses, our family, our friends, a very supportive community, an opportunity to do good and make a difference—the list is quite long. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Yet, there remains a hole in our hearts—a hole in our lives—that is not so easy to fill. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Though there are no perfect analogies, I sometimes liken the loss of Sam to a black hole. A black hole is so powerful that nothing—no light, no particles—can escape from inside it. And as you draw nearer to a black hole you at some point cross the Rubicon. I’ll just quote Wikipedia verbatim: “The boundary of the region from which no escape is possible is called the event horizon. Although the event horizon has an enormous effect on the fate and circumstances of an object crossing it, no locally detectable features appear to be observed.” Yep. I can relate to that. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There’s no accounting for when the black hole might start to suck you in. But if and when you approach it, its effects can be devastating. As it tries to pull you in, you start to feel like you’re suffocating. You dread being lost forever in its dark recesses and vast nothingness. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And so you often try to avoid the hole entirely. You occupy your days with work and your nights with activities. You keep your mind busy with “stuff” or “things”. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But in the dim recesses of your mind you know that by avoiding your pain and suffering—by avoiding the Black Hole—you’re unwittingly avoiding your child. You’re avoiding his memory, his life and his love. And so you’re continually drawn to the event horizon. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-i96TQKqJ6tg6-VMgEC_HJG9ZQfa3Nl0neOlmgpNCSS_VBm6ic1gN6gEfEm_GtGjTP3T5w2mz7VXCTi0bTk0jjrAexozX8ktccDrvR9sPyu5doPA7aNvkCphJHwPM1aDyDZWZC9h8HYw/s1600/10172589_10205459176296575_5207136621528601351_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-i96TQKqJ6tg6-VMgEC_HJG9ZQfa3Nl0neOlmgpNCSS_VBm6ic1gN6gEfEm_GtGjTP3T5w2mz7VXCTi0bTk0jjrAexozX8ktccDrvR9sPyu5doPA7aNvkCphJHwPM1aDyDZWZC9h8HYw/s320/10172589_10205459176296575_5207136621528601351_n.jpg" width="320" /></a><span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">You cherish happy memories. You celebrate birthdays and holidays and recall happy thoughts of bygone days. You cling to his old toys and clothes, flip through photographs, and say a little prayer at night asking for a dream with your child in it. You feel that he’s in that hole and you want to go in there and get him, save him, pull him out and bring him back—to be with you again forever and ever. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thus, the life—the event horizon—of a bereaved parent can be exhausting. Our lives look normal—“no locally detectable features appear to be observed”—yet they are really anything but normal. Though bereaved parents are not so unique from anyone else who has lost a loved one—we do not have a monopoly on pain and suffering—the loss of a child does seem to suck just a little more life out of you. Just like I could never imagine what it must have been like to sit in a foxhole in Vietnam or Korea or Iraq and watch my comrades lose their lives and fear for my own, because I myself did not walk in those shoes, we humans all have our own unique pain and suffering to sometimes deal with.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">At the end of the day perhaps all we can do is fill our holes with love. Maybe the pain we feel is only so great because the love for whom we lost was so immense. Perhaps we suffer only in direct proportion to the love we felt and shared. And so today we celebrate the memory of a little boy whose happiness, zest for life, hunger for learning and love of others inspires us to this day. Happy Birthday Sammy. We miss and love you very much.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqfabkOe7_MfWg6o_PCiYQL0C0696zbpEsb3NLGLLlFdN6qdX576VB14HcQ7gW7drJt57cI4CUeqBxPAmYf3EbyNEXlH_1dJi5h_7DgwKxkrJgNOF-MLcDQnqSqSIdOIL9bgm3-FdbYTY/s1600/17553997_10212131728546211_3172674565134666301_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqfabkOe7_MfWg6o_PCiYQL0C0696zbpEsb3NLGLLlFdN6qdX576VB14HcQ7gW7drJt57cI4CUeqBxPAmYf3EbyNEXlH_1dJi5h_7DgwKxkrJgNOF-MLcDQnqSqSIdOIL9bgm3-FdbYTY/s320/17553997_10212131728546211_3172674565134666301_n.jpg" width="320" /></a></div>
<span style="background-color: transparent; color: black; font-family: "bookman old style"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span>Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com29tag:blogger.com,1999:blog-2428901333554588976.post-79454844615455993972016-10-20T06:28:00.000-07:002016-10-20T06:28:14.048-07:00Three Years<div class="MsoNormal" style="background-color: white; color: #222222;">
<span style="font-family: "georgia" , "times new roman" , serif;">Three years ago today our son Sam died. He was eight years old. Just 13 months prior to that he was diagnosed with a brain tumor out-of-the blue. He had been a bright-eyed, energetic, loving and highly intelligent little boy. After a brief but brutal fight he succumbed. Cancer took his precious life.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjuK40rQ3MZJoZMEUaQKlwKpkgVbJ6Pa1ATCOGZ5lRqaicgIAQPE234jkfh14HccZ1ooFLmicfHAAHPqy2LhbSi3wRQqfA4eKQFRHGYwqw2n2aHKf3pCMeJFW-_Azzuskiolv5wHbTJQ/s1600/606.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjuK40rQ3MZJoZMEUaQKlwKpkgVbJ6Pa1ATCOGZ5lRqaicgIAQPE234jkfh14HccZ1ooFLmicfHAAHPqy2LhbSi3wRQqfA4eKQFRHGYwqw2n2aHKf3pCMeJFW-_Azzuskiolv5wHbTJQ/s320/606.JPG" width="240" /></a><span style="font-family: "georgia" , "times new roman" , serif;">Over the course of those 13 months we saw Sam develop a tremor in his hand that bothered him both physically and emotionally. We saw him gain nearly 50 pounds from steroids, lack of exercise and little else to do but eat. We suffered along with him as he told us about the ringing in his ear, which we couldn’t make go away. We stood close to him and held his hand as he began to lose his balance and co-ordination. We sat next to him and protected his shaking body through numerous difficult seizures, including one that lasted nearly 3 hours. We wheeled him places in his wheelchair when he lost the ability to walk. We saw him lose the ability to go to the bathroom by himself and eventually lose control of his bladder and other bodily functions. We looked on helplessly as he lost both his memory and extraordinary mental faculties. We leaned-in close to hear him as he whispered and struggled with words until he could no longer speak at all. Shortly thereafter he also lost the ability to eat and drink, save the drops of morphine we had to administer down his throat to ease the pain from the swelling in his brain. We surrounded him and held him as he took his last breaths of air on our couch under a full moon at 6:31 am on October 20, 2013.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">That’s the short story of a kid who loses their battle with cancer. It isn’t pretty.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Sam had a bi-thalamic glioma, a type of brain tumor that, because of its location and the nature of the cancerous glial cells, could not be operated on. Inoperable brain tumors currently call for treatment either with chemotherapy or radiation or both. Neither treatment is desirable; each has its own horrible consequences and ill-effects. All of us have likely heard or seen the stories of other children—many right here in our own community—who have suffered the effects of both cancer as well as the potentially devastating effects of the cancer treatment itself.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Despite all this, perhaps because of this, Sabrina and I strive to remain positive. We have decided to harvest what could be loads of negative energy and channel it into a positive avenue—Sam’s Foundation. Sam’s Foundation is all about using the money we receive from donors to try to find cures, searching for and funding better treatment options for children with cancer, helping local families with financial needs and in general trying to raise awareness that childhood cancer is a serious problem and that we can do better as a society in the fight against it. These are things that will pay dividends years from now and hopefully pave the way for healthy lives for future generations. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: #222222;">With the help of some amazing Cal Poly students, who took it upon themselves to help us spread our message, and with some wonderful assistance from the Krasner-Green family who helped add the finishing touches, we’d like to share this </span><a href="https://www.youtube.com/watch?v=M9WLPg0DBH8" target="_blank"><span style="color: blue;">video</span></a><span style="color: #222222;">. Special thanks to Baylor Hunstad, Casey Li, Jessica Redmond, and Brian and Paul Green for their extraordinary efforts and talents. </span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">As always we appreciate everything our supporters have done for us over the years. We are honored to have met so many wonderful people and have been lifted by all of the kind hearts. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">John & Sabrina Jeffers <a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.samjeffersfoundation.org/&source=gmail&ust=1477019632717000&usg=AFQjCNHvBwe--H2RvsN4nXvxmo_EkhISZA" href="http://www.samjeffersfoundation.org/" style="color: #1155cc;" target="_blank">www.samjeffersfoundation.org</a></span></div>
Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com8tag:blogger.com,1999:blog-2428901333554588976.post-28821504288290680222016-09-20T16:57:00.002-07:002016-09-20T16:57:20.623-07:00Diagnosis Day<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgayqK8EaghWg1nNAtNemcfiG90fs43ApGQhdo5VSkLXJCg9mp7PfcAhvS0JjhWa4vPlX6cJZ_GRSWWxB8Kmg6fMtVTlzWiRFGPPTHd8F88PJ4ucmUYRZaFVLIAJL2MbwKXUNpGq9mjLOk/s1600/1452293_10205318671784050_7751513305345644171_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="130" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgayqK8EaghWg1nNAtNemcfiG90fs43ApGQhdo5VSkLXJCg9mp7PfcAhvS0JjhWa4vPlX6cJZ_GRSWWxB8Kmg6fMtVTlzWiRFGPPTHd8F88PJ4ucmUYRZaFVLIAJL2MbwKXUNpGq9mjLOk/s200/1452293_10205318671784050_7751513305345644171_n.jpg" width="200" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Today marks the 4-year anniversary of Sam’s diagnosis with brain cancer. Just a little over four years ago, we were a happy family of five, and everything seemed nearly perfect in our little corner of the world. Everyone was healthy, happy and had their entire lives to look forward to. And then, in an instant, our lives changed—permanently. <u></u><u></u></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ei4XyJNSD8V95pMiKLEnxiWuETJ8g4YytmYlXKf8DxdjED9q5U7oVpscaEkYu5BbZKvTT-DL9ieM_dC6k3WiHOcPgVVXY3S2xqHtcvMLR2121wS2ejWBH_LNUm7rrzev3QSoABH160k/s1600/Future+scholar.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_ei4XyJNSD8V95pMiKLEnxiWuETJ8g4YytmYlXKf8DxdjED9q5U7oVpscaEkYu5BbZKvTT-DL9ieM_dC6k3WiHOcPgVVXY3S2xqHtcvMLR2121wS2ejWBH_LNUm7rrzev3QSoABH160k/s200/Future+scholar.jpg" width="200" /></a></td></tr>
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<span style="font-family: Georgia, "Times New Roman", serif;">We will never know what our Sammy could have grown up to be. Instead of a world of possibilities Sabrina and I now have only a world of what might have been. Cancer robs so much from the world when it takes an innocent soul. </span></div>
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I could write about how unfair life is. I could write a long torturing post about all of the bad things that Sam and we experienced from the time of his diagnosis through his crappy treatment and ultimately his death. I could also curl up into a little ball in the corner and cry and feel sorry for myself. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVR5f6gZckbVGT5uFJdkN5V42g4nsPL5Y0gwJRGT9QHZbKAnSoTn0ubpVAs4EXLBDtLJsR0QIIIGZ5cRjPeSTK3vZFMGFsVFlf7G7h4xyt73DECVv1Zzv-ERQ5TKf0xsNPMtDfIB2kgk/s1600/Future+rockstar.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVR5f6gZckbVGT5uFJdkN5V42g4nsPL5Y0gwJRGT9QHZbKAnSoTn0ubpVAs4EXLBDtLJsR0QIIIGZ5cRjPeSTK3vZFMGFsVFlf7G7h4xyt73DECVv1Zzv-ERQ5TKf0xsNPMtDfIB2kgk/s200/Future+rockstar.jpg" width="150" /></a></td></tr>
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<span style="font-family: Georgia, Times New Roman, serif;">Instead, I just want to reiterate the main message that we are trying to spread: There is currently an abysmal amount of money spent on childhood cancer research; money spent on adult cancer research seldom trickles down to benefit children with cancer because their bodies cannot take the same kinds of treatment that adults can; and, the critical point, money spent on childhood cancer research can and does “trickle up” to benefit adults. <b>When we fund childhood cancer research we are in fact funding adult medical research as well.<u></u><u></u></b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Last blog I wrote about why we fund the <a href="http://weillcornellbrainandspine.org/in-the-news/samuel-jeffers-foundation-funds-summer-medical-student-fellow-thalamic-gliomas" target="_blank">Samuel Jeffers Thalamic Glioma Fellowship</a> at Weill-Cornell Medicine . I used Project Violet, another research effort we support, as an example of ground-breaking, pioneering work done by doctors and researchers who have devoted their lives to studying childhood cancer and who discovered a tool—Tumor Paint—that now stands to benefit all of society. Today, I’d like to give another example of “trickle up”. <u></u><u></u></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Long-time followers will know that Dr. Mark Souweidane, head pediatric neurosurgeon at Weill-Cornell in NYC and co-director of the Children’s Brain Tumor Project, is the spearhead of our efforts to crack the thalamic glioma code. We stumbled across Dr. S through our research into promising pediatric cancer treatments for DIPG—another deadly brain tumor that kills far too many children. Dr. S has pioneered a drug delivery mechanism called Convection Enhanced Delivery (CED) whereby drugs or other therapeutic agents can be delivered directly into the tumor site, by-passing the blood brain barrier and offering a fighting chance for the medicine to have some effect on hard-to-reach tumors. In this trial, Dr. Souweidane was able to achieve concentrations of 1,000 times or more than what can be achieved with traditional IV chemotherapy. He was also able to design and test new ways to measure those concentrations at the tumor site and monitor how long the drug stayed in the tumor. Read more <span style="color: blue;"><a href="http://weillcornellbrainandspine.org/in-the-news/dr-souweidane-treats-final-patient-groundbreaking-dipg-clinical-trial" target="_blank"><span style="color: blue;">here</span></a>.</span> <u></u><u></u></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Future Banker</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFlLm4qGuCFGyXqFMmhB1TBBifxQJ3-H3M_pDDPJQx_0drbSRTz63uNe2xMDtywGTpZ4ZBMP4oIr_tRVJNs8zA_kVNVGShpZX5M1x8nXOewKBiPFdfurkccqbOzIo-EdQmlAp7ODaXWsY/s1600/Future+engineer.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFlLm4qGuCFGyXqFMmhB1TBBifxQJ3-H3M_pDDPJQx_0drbSRTz63uNe2xMDtywGTpZ4ZBMP4oIr_tRVJNs8zA_kVNVGShpZX5M1x8nXOewKBiPFdfurkccqbOzIo-EdQmlAp7ODaXWsY/s200/Future+engineer.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Engineer</td></tr>
</tbody></table>
<div style="background-image: initial; background-position: initial; background-repeat: initial; margin: 0in 0in 0.0001pt; text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">As wonderful as are the direct benefits to children of such a project, the translational benefits of using CED for DIPG has the potential to further evolve into a project that Dr. S expects to define many additional elements of local drug delivery to the brain. Aspects such as device design, dosimetry measurements, drug labeling, monitoring pharmacokinetics, and many others, can be applied to not only other brain tumor strategies but <i>any disease</i> in which drug delivery to the brain is crucial. What this means is that Dr. S’s work on children’s brain tumors could affect treatment for a wide host of other ailments including infections, degenerative diseases like dementia or Alzheimer’s, movement disorders, and epilepsy. DIPG—a children’s brain tumor—has afforded us the opportunity to translate an innovative and adventurous treatment paradigm for children into an actual clinical tool with widespread potential applications—for children and adults alike—even outside the world of cancer treatment. <u></u><u></u></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoH0nhghRVEh8di0BZgooNlaSSGF8uN6Ii5Qpy-U7zwKWH8dSRwSvrv8H51FF0JDZlrqW4dh2wFi8Pq83v17OtjmjWfKesC6GEoWilfEuyPD53uqhnldMeP3puEnKd8-8hiGsGbHTNTd0/s1600/Future+exec.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoH0nhghRVEh8di0BZgooNlaSSGF8uN6Ii5Qpy-U7zwKWH8dSRwSvrv8H51FF0JDZlrqW4dh2wFi8Pq83v17OtjmjWfKesC6GEoWilfEuyPD53uqhnldMeP3puEnKd8-8hiGsGbHTNTd0/s200/Future+exec.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Exec</td></tr>
</tbody></table>
<div style="background-image: initial; background-position: initial; background-repeat: initial; margin: 0in 0in 0.0001pt; text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"><u></u> <u></u></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">This is yet another example of how by helping children with cancer we are in fact helping ourselves. By funding children’s cancer research, not only are we working to save the lives of our precious offspring; we are also potentially saving the lives of our siblings, parents, grandparents and ourselves. We believe that’s a very wise investment. <u></u><u></u></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"></span><br /><span style="font-family: Georgia, Times New Roman, serif;"></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIFg7FNbamCsDT1VDrhz0zNp0oIVlB4zP8wySSNXxv-CsapzozBPU7235EL72bLGLH4XeBvxdNHx0RXMZ6P__UqFBzlV8ekzQC_Yh2QcYKBta64Hvx6qqIZb8YqBSxctKMro0FTugBZXw/s1600/Future+writer.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIFg7FNbamCsDT1VDrhz0zNp0oIVlB4zP8wySSNXxv-CsapzozBPU7235EL72bLGLH4XeBvxdNHx0RXMZ6P__UqFBzlV8ekzQC_Yh2QcYKBta64Hvx6qqIZb8YqBSxctKMro0FTugBZXw/s200/Future+writer.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Writer</td></tr>
</tbody></table>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">When Sabrina and I ask for donations to Sam’s Foundation, it’s important to know that we in no way directly benefit from that. No one at Sam’s Foundation earns a salary or receives any benefits. 100% of the money that people give to “Cooking up a Cure…” goes to childhood cancer research or to local families with children battling cancer. Click <a href="http://samjeffersfoundation.org/contribute/" target="_blank">here</a> to see where the thermometer is right now as we work towards our funding goal. We need to raise $75,000 annually in order to fund the Thalamic Glioma program at Weill-Cornell, and we need your help!<u></u><u></u></span></div>
<div>
<span style="font-family: Georgia, Times New Roman, serif;"></span><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNKHYhTi49drgmaVOxialMVWbSZhq_itnzMxybSLji_6VWJtnclLyrp9EuNJA8Raa78ceWNFYbfyJ3benZrcWPv7JAIP3gFMa5sRkfZ-3whAh9th7BdX6TQ2I_WOVifLi9xt3IUy_WTwc/s1600/Future+chef.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNKHYhTi49drgmaVOxialMVWbSZhq_itnzMxybSLji_6VWJtnclLyrp9EuNJA8Raa78ceWNFYbfyJ3benZrcWPv7JAIP3gFMa5sRkfZ-3whAh9th7BdX6TQ2I_WOVifLi9xt3IUy_WTwc/s200/Future+chef.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Chef</td></tr>
</tbody></table>
<div style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmSUYBBb0TnTpr0HPWEal-dHb5tvHuq_vmqp7P2HCEjMWBOCDGAcoLu1H0Jc_VtkOKrAnyezsrmweTtrxNlHjRoVICNzMEqXjuqLf-sSWOfMQDWDg-HGUUevtP1-ywYJXnMBEtgmmk0GA/s1600/Future+scientist.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmSUYBBb0TnTpr0HPWEal-dHb5tvHuq_vmqp7P2HCEjMWBOCDGAcoLu1H0Jc_VtkOKrAnyezsrmweTtrxNlHjRoVICNzMEqXjuqLf-sSWOfMQDWDg-HGUUevtP1-ywYJXnMBEtgmmk0GA/s200/Future+scientist.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Scientist</td></tr>
</tbody></table>
</div>
</div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">Thank you so much for your continued support.<u></u><u></u></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">John Jeffers<u></u><u></u></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;"><a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.samjeffersfoundation.org/&source=gmail&ust=1474498561568000&usg=AFQjCNH65LSQYKxoD7LKdDjcwX7rvQrl3g" href="http://www.samjeffersfoundation.org/" style="color: #1155cc;" target="_blank">www.samjeffersfoundation.org</a><u></u><u></u></span></div>
<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">Cooking Up a Cure for Childhood Cancer</span></div>
Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com100tag:blogger.com,1999:blog-2428901333554588976.post-78960453368440979562016-05-29T10:23:00.002-07:002016-05-29T13:35:29.415-07:0005 29 2013<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">May 29. The day
before Memorial Day, the day we honor those who died while serving our
country. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">May 29, 2013 replays in my head over and over like a broken
record. Dr. Brown’s words drip on me
like water torture. “There’s nothing
more we can do.” How can that be? Three weeks ago we talked about holding back
radiation—our cannon—for when we need it.
What about now? “It’s too
late”. Too late!? “It’s growing too fast. There’s a third tumor and it’s getting
big. Quickly.” Boom.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">That was just five months and 9 days after getting hit by
our own personal D-Day, when we heard the first heart-stopping words from Dr.
Young. “There’s a large tumor in there.” Pow.<o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPyZqxixqrCxvkyaULLpR_NAmQ5KyDQTJWmlkXv-7TS2PlL9vry6OVJL4aY6678ZlOJBTru6XEyxcH0rIsaX2KxjDVecIfGmsmlB1U3UCQ-y0MEiQUKggu0DX4ikHHqoMo99ycRtYYnq0/s1600/CHLA+Day+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPyZqxixqrCxvkyaULLpR_NAmQ5KyDQTJWmlkXv-7TS2PlL9vry6OVJL4aY6678ZlOJBTru6XEyxcH0rIsaX2KxjDVecIfGmsmlB1U3UCQ-y0MEiQUKggu0DX4ikHHqoMo99ycRtYYnq0/s320/CHLA+Day+1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">September 2012, CHLA shortly after diagnosis</td></tr>
</tbody></table>
<br />
<span style="font-family: "times" , "times new roman" , serif;">Four months and 22 days after May 29—our second D-Day—Sam died.</span><span style="font-family: "times" , "times new roman" , serif;"> </span><span style="font-family: "times" , "times new roman" , serif;">Crash.</span><span style="font-family: "times" , "times new roman" , serif;">
</span><span style="font-family: "times" , "times new roman" , serif;">D-Day #3.</span><br />
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">As a parent of a child who loses their battle against
cancer, it’s as though you die three times:
When they’re diagnosed; then again when they’re placed on hospice; and
finally when they lose their battle and die.
But there’s something particularly disconsolate about the day you’re
told there’s nothing more that can be done.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">After diagnosis, there’s at least some hope. When your kid gets diagnosed with an
inoperable brain tumor, you know it isn’t good, but there’s hope. You do everything you can, think positively,
pray and hope for the best. But May 29
took away almost all of our hope. It
knocked the wind out of us. It seriously
crushed us.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV9y3eIKxQ184YUyyFcdyQfXPyFvbyBhDsd5TEoVCgot_wDI_wVPbztW7tPwlFNyRvs9lVMd5WXObxdVm-eWh4kdnYE778lyXApLIWg5EhCbnpJJm5Y31TmVb7D0wLIOsqBMOubX5ya1o/s1600/Snap+Snap.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV9y3eIKxQ184YUyyFcdyQfXPyFvbyBhDsd5TEoVCgot_wDI_wVPbztW7tPwlFNyRvs9lVMd5WXObxdVm-eWh4kdnYE778lyXApLIWg5EhCbnpJJm5Y31TmVb7D0wLIOsqBMOubX5ya1o/s320/Snap+Snap.JPG" width="320" /></a><span style="font-family: "times" , "times new roman" , serif;">On the ride home even Sam lashed out, the first and only
time he cried about his condition and this insidious monster that had invaded
him and that was robbing him of his childhood—of his life. He screamed through tears: “It just seems
like everything is just—just—impossible.” He didn’t know that he was now
terminal, but he was reacting to the news that the tumors had grown and that
there was now a third one. When Dr.
Brown gave that news to him Sam said, very slowly and with deep sadness:
“Wow. That’s surprising….because….I mean….we
were actually thinking that the tumors were going to be this small”. And he held out his little hand and formed a
tiny circle with his finger and thumb.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">I was never so angry in my life. I felt like a complete failure. I had failed at a parent’s #1 job: protecting
your children. I felt sickeningly
helpless. I desperately wanted to save
my son—I would have done anything to do so—but there was nothing left to
do. A large piece of me died that
day. And I’m not sure that piece will ever
come back. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSyVAfc3NBXb_Pm8EGF70EQphAE-7OPFKTbA0L7OE7tz8BC-SpQv656qDghXwNvH_1LO9cSid5ynE5yWNQyCLG8_R-uM-PT70osHFH5fQnGC_oLW6tS3zNICUfctEV9Zq1fWWobVsZvW4/s1600/May+29+2013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSyVAfc3NBXb_Pm8EGF70EQphAE-7OPFKTbA0L7OE7tz8BC-SpQv656qDghXwNvH_1LO9cSid5ynE5yWNQyCLG8_R-uM-PT70osHFH5fQnGC_oLW6tS3zNICUfctEV9Zq1fWWobVsZvW4/s320/May+29+2013.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">May 29, 2013</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">There are a lot of ways to deal with the loss of a loved
one. Some of them horrible and
self-destructive, and some of them positive and healthy. One of the things we have chosen to do, to
channel what could otherwise be loads of negative energy, is to work through
Sam’s Foundation towards a cure for pediatric cancers. Here’s the latest positive news on those
efforts: <a href="http://weillcornellbrainandspine.org/in-the-news/samuel-jeffers-foundation-funds-summer-medical-student-fellow-thalamic-gliomas" target="_blank"><span style="color: blue;">Sam Jeffers Foundation Summer Fellow</span></a>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">Vice President Joe Biden, whose own son died from a brain
tumor, is leading an initiative--the <a href="https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot" target="_blank"><span style="color: blue;">National Cancer Moonshot Initiative</span></a> </span><span style="font-family: "times" , "times new roman" , serif;">—that hopes to make more therapies available to more cancer
patients.</span><span style="font-family: "times" , "times new roman" , serif;"> </span><span style="font-family: "times" , "times new roman" , serif;">Within this initiative, one of
its areas of focus will be to intensify efforts to collect and analyze tumor
specimens from the rarest childhood cancers, enlisting participation from the
pediatric oncology community.</span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">I sense that we—as a society—are at an inflection point and
that we are on the cusp of making truly incredible discoveries that will
breathe new life into efforts against cancer.
Yet we must push forward, as hard as possible, right now. We have some momentum but we absolutely must
keep going and in fact accelerate. The
funding of the thalamic glioma Fellow at Weill-Cornell by Sam’s Foundation is just
one way to do so. <o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJewCFsO0u0wnN5nCf9dXN_a8d-qo5MQShDG6C-GMjWzL8CehpsQwOirRZaTt2bMVFPY1ZVT_PRtQus_vHz6lNZO8JqxylWrk3T9MklhFgrA4zf-fJEjB6171KkRhQMRUjM364mfC8BeM/s1600/IMG_4734.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJewCFsO0u0wnN5nCf9dXN_a8d-qo5MQShDG6C-GMjWzL8CehpsQwOirRZaTt2bMVFPY1ZVT_PRtQus_vHz6lNZO8JqxylWrk3T9MklhFgrA4zf-fJEjB6171KkRhQMRUjM364mfC8BeM/s320/IMG_4734.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Visiting with Sam</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "times" , "times new roman" , serif;">Sabrina and I would like to thank everyone who has been by
our side over these last few years. It
has made all the difference in how we have been able to cope with our
loss. We also wish to thank everyone who
has contributed time, talent or treasure to Sam’s Foundation. That is where we have poured much of our
heart and soul these past few years as we strive to see to it that no other
child has to meet the same fate as Sam. We
thank you for fueling our passion.</span><o:p></o:p></div>
Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-31626523680330244852016-04-02T08:17:00.002-07:002016-04-24T20:16:27.942-07:00April 2, 2016<div style="font-size: 13px;">
<span style="font-family: "verdana" , sans-serif;">Today, Sam would have turned 11 years old. For those of you who might be reading this for the first time, Samuel Alexander Jeffers was born on 4/2/2005. Suddenly, and out-of-the blue, on 9/20/2012 he was diagnosed with a brain tumor. On 10/20/2013 he died.</span></div>
<div style="font-size: 13px;">
<span style="font-family: "verdana" , sans-serif;"><u></u><u></u></span></div>
<div style="font-size: 13px;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="font-size: 13px;">
<span style="font-family: "verdana" , sans-serif;">Certainly a lot of things happened in those intervening years between Sam’s birth and death: some mundane; many truly spectacular, precious and cherished; and some ghastly and tragic. <u></u><u></u></span></div>
<div style="font-size: 13px;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOJeOrPWyTo37pQ13Y3N-S1y7RcGjaOYMkwEp_5VKqrs8sYcwpImETnfRSv3ih9ixaHxJvMdv_MuMHV7iV0iXH98Ad5TmazTOgsncgFW6H5zCcpRMz86N3_Q9kcOxMikTS7z5D0DrVt4/s1600/1916933_1190961291940_5759264_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOJeOrPWyTo37pQ13Y3N-S1y7RcGjaOYMkwEp_5VKqrs8sYcwpImETnfRSv3ih9ixaHxJvMdv_MuMHV7iV0iXH98Ad5TmazTOgsncgFW6H5zCcpRMz86N3_Q9kcOxMikTS7z5D0DrVt4/s320/1916933_1190961291940_5759264_n.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">April 2nd, 2009-Sam's 4th birthday. He asked for a cow.</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">Sam should have had many, many more years to his timeline. Many more opportunities to experience the mundane and spectacular alike. Instead, Sabrina and I now mark the passage of time with memories and “celebrate” unfulfilled or incomplete milestones. We continue to honor his name and celebrate his life and spread the gifts he gave us through our work at the Foundation that we established in his name, whose primary mission is to eradicate childhood cancers by funding research. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">Sam’s Foundation supports many childhood cancer research efforts and provides financial assistance for local families of children with cancer. As part of this overall mission, we are currently trying to raise money to fund a fulltime researcher at Weill-Cornell Medicine who will study thalamic gliomas—the deadly brain tumor that killed Sam. I would like to take just a moment to explain exactly why we support targeted research on specific—sometimes rarer—forms of childhood cancer. I believe that there’s something of significant importance to be learned from the rationale behind this kind of targeted research.<u></u><u></u></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO6Nl9IU-ZA913pFy-8RTW0E3eFw7QnT1uG0pf3KhLFcBKRi8KfTft_4lm9AWzOAhf2oRUq126Bmeog8fzio93VuPAqMj1HSKHeyAe6I_iLI_hthGR4S2I89_BSPO4pvBgYw-c6V9mtdo/s1600/23831_1410680424781_3626773_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO6Nl9IU-ZA913pFy-8RTW0E3eFw7QnT1uG0pf3KhLFcBKRi8KfTft_4lm9AWzOAhf2oRUq126Bmeog8fzio93VuPAqMj1HSKHeyAe6I_iLI_hthGR4S2I89_BSPO4pvBgYw-c6V9mtdo/s320/23831_1410680424781_3626773_n.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">April 2nd, 2010-Sam's 5th birthday</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">The obvious reason for funding research on thalamic gliomas is of course because that is the type of cancer that our son had, and which doctors were helpless to save Sam from—because there has been absolutely no research done on it <a href="http://thalamicgliomaregistry.org/thalamic-gliomas/patient-stories/samuel-jeffers" target="_blank"><span style="color: blue;">until recently</span></a>. Ten years ago if a family had an opportunity to fund research on thalamic gliomas, it is possible that Sam might be alive today. Even the loss of one child’s life is unacceptable to me, so if we can find a way to crack the code on this deadly brain tumor, and not have this happen to another child, every penny spent will have been worth it. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">The second, perhaps less obvious but immensely important reason to support targeted research for childhood cancer is because of the fact that what we learn from doing <u></u><u></u><span style="line-height: 15.6933px;">so is very likely to have “spillover” benefits elsewhere in the broader fight against all cancers.</span><span style="line-height: 15.6933px;"> </span><span style="line-height: 15.6933px;">Let’s take just one example.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="color: purple; font-family: "verdana" , sans-serif;"><a href="http://www.fredhutch.org/en/labs/clinical/projects/project-violet/about-us/science.html" style="color: #222222;" target="_blank">Project Violet</a></span><span style="font-family: "verdana" , sans-serif;"> is a collaborative effort by Dr. Jim Olson and researchers at the Fred Hutch Cancer Center, in conjunction with Seattle Children’s Hospital. In their work devoted to rarer types of children’s brain cancers, Dr. Olson and his team pioneered something called <span style="background-image: initial; background-position: initial; background-repeat: initial;">Tumor Paint, which acts as a "molecular flashlight" by chemically adhering to cancer cells and causing them to light up. Thousands of times more sensitive than MRI imagery, Tumor Paint enables surgeons to easily distinguish between deadly cancer cells and the surrounding healthy tissue, making tumors more operable. This amazing discovery came about because of the dedication of researchers spending their time solely devoted to vigorously searching for a cure for children’s cancers, especially rarer and deadly children’s brain tumors. Now the entire world stands to benefit from their discovery. </span><u></u><u></u></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibNN74tR3YZgsLVFVVgHZdTylmkYyK3dSgcItTdTUEZaCL3NkwRurc2ZbaTcH1Xf5ceqAirg1xXx9MKo2Q_zopqx4yhT0Hro_4YJ9-Jw_e_hQSAmVsaruHnA_wk8lBMB-skIR3H6AFt9E/s1600/196828_1937670519204_4161957_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibNN74tR3YZgsLVFVVgHZdTylmkYyK3dSgcItTdTUEZaCL3NkwRurc2ZbaTcH1Xf5ceqAirg1xXx9MKo2Q_zopqx4yhT0Hro_4YJ9-Jw_e_hQSAmVsaruHnA_wk8lBMB-skIR3H6AFt9E/s320/196828_1937670519204_4161957_n.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">April 2nd, 2011-Sam turns 6.</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">To illustrate the importance of this, and using the theme of our Foundation’s motto “Cooking up a Cure for Childhood Cancer”, an analogy might be that if you are trying to perfect a recipe for veal piccata, in the process you are likely to learn a lot about cooking Italian food in general. Further, what you discover from the Italian cooking might very well help you in the preparation of your next Mexican cuisine masterpiece. The ratios and blends of oregano, garlic and coriander in the veal dish might prove fertile grounds for exploration for the next culinary experiment. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">What we as a society have been doing to date in the battle against childhood cancer has not been as effective as it should be. The same poisons we use to treat the 65-year old woman with breast cancer and the same radiation we use on the 75-year old man with prostate cancer are not necessarily suitable for the 6-year old little girl with Ewing’s Sarcoma or the 8-year old little boy with a brain tumor. In fact, in some cases, the treatments themselves are—literally—deadly. Just because we discovered fire and use it as an important tool in the cooking process does not mean that we suddenly know anything about making a great veal piccata. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">The same tools we use in the battle against adult cancer do not necessarily “trickle down” to benefit children’s cancers; yet, as the Project Violet example shows, discoveries and advances made in the fight to overcome childhood cancer can and do “trickle up” to adults. We have spent billions and billions of dollars for adult cancer research and invested an embarrassingly small amount on childhood cancer. <u></u><u></u></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-qhlh3iwbTJzRFUKeYwAW6QWnJljIBW3M9OvnHyZOs-Fn-oU-wqxrdPS3TDagba8CEKxhI2WnZIzdH-XFGbPYg2aRgcY2iloVC0mhZSJrKAF8veyQDyr1Bvx5x8qcU8LatMaTA8NkcM/s1600/Pics+197.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-qhlh3iwbTJzRFUKeYwAW6QWnJljIBW3M9OvnHyZOs-Fn-oU-wqxrdPS3TDagba8CEKxhI2WnZIzdH-XFGbPYg2aRgcY2iloVC0mhZSJrKAF8veyQDyr1Bvx5x8qcU8LatMaTA8NkcM/s320/Pics+197.JPG" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">April 2nd, 2013-Sam turns 8</span></td></tr>
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<span style="font-family: "verdana" , sans-serif;">In the end, the fight against childhood cancer that we are waging is not just about Sam. It’s not even just about children. When Sabrina and I ask for contributions to Sam’s Foundation, what we are asking for is help in fighting cancer. Yes, we are driven passionately by the desire to eradicate cancer in children for obvious reasons. It pains us greatly to see children with this disease suffer or die—pains us indescribably and immeasurably. Ultimately, though, this is about all of us—our children, our grandchildren, our neighbors, our parents….you. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">Please do what you can to join in the fight. If you would have given Sammy a birthday gift this year, please consider a gift to his <a href="http://www.samjeffersfoundation.org/" target="_blank"><span style="color: blue;">Foundation</span></a>. And consider it a gift from you to the world. <u></u><u></u></span></div>
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<span style="font-family: "verdana" , sans-serif;">Happy Birthday Sammy.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgImTGPExhWRHKaRtkikRl5bnlyiCWvJn7zh8PNzUtN0ESWmAxb07cQe5OqH7Vu1Ps782yU17jiVR5k3jxZ_jwU1nEHNGHgpEKF7PVY7AJNd-WlzETGKvVtttPnK6CqsPfxz77Fz1TSJWg/s1600/Pics2+011+%25281%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgImTGPExhWRHKaRtkikRl5bnlyiCWvJn7zh8PNzUtN0ESWmAxb07cQe5OqH7Vu1Ps782yU17jiVR5k3jxZ_jwU1nEHNGHgpEKF7PVY7AJNd-WlzETGKvVtttPnK6CqsPfxz77Fz1TSJWg/s320/Pics2+011+%25281%2529.JPG" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">2013-Sam's last birthday</span></td></tr>
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<span style="color: blue; font-family: "verdana" , sans-serif;"><a href="http://www.samjeffersfoundation.org/" style="background-color: white;">www.samjeffersfoundation.org</a></span><br />
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com3tag:blogger.com,1999:blog-2428901333554588976.post-34688928815537943722015-10-20T18:05:00.000-07:002015-10-20T18:05:30.856-07:00October 20, 2015<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGs_4O3BFGu1qmZshp3ckgt4xHRphnHik58FvrU7a5ZKIaOgjgUBoUZ2lKSTwxmkjedZlhECj-x9cz7ysCfrOQWcdA5xDr4tvM9QwfY36QARGLwOzf4psE9i9J1gP_KE5gj03s1RWU3zc/s1600/459.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGs_4O3BFGu1qmZshp3ckgt4xHRphnHik58FvrU7a5ZKIaOgjgUBoUZ2lKSTwxmkjedZlhECj-x9cz7ysCfrOQWcdA5xDr4tvM9QwfY36QARGLwOzf4psE9i9J1gP_KE5gj03s1RWU3zc/s200/459.JPG" width="150" /></a><span style="font-family: inherit;">Two years ago today our Sam lost his battle with brain
cancer.<span style="mso-spacerun: yes;"> </span>Often it seems like it was just
yesterday when we held his hand, hugged him, kissed him, whispered “I love you”
over and over again softly in his ear.<span style="mso-spacerun: yes;">
</span>We wanted Sam to know—desperately wanted him to know—how much we loved
him, before he was gone.<span style="mso-spacerun: yes;"> </span>Before it was
too late.<span style="mso-spacerun: yes;"> </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAv7Pl3LRQwLD9PInRZ-dJGPc_bB9Ybv6ZG-PtYmFv0Nva_rotnj8hhdVC9NjtgRuAaLD1fADH2UtgKGz_JEqKuBLVAn3b-mcOlf4OPtf-pC45v5crgIvdGakWUZJfsSBGUq_lZFlcUZ8/s1600/Sam+Pic+%25231.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="138" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAv7Pl3LRQwLD9PInRZ-dJGPc_bB9Ybv6ZG-PtYmFv0Nva_rotnj8hhdVC9NjtgRuAaLD1fADH2UtgKGz_JEqKuBLVAn3b-mcOlf4OPtf-pC45v5crgIvdGakWUZJfsSBGUq_lZFlcUZ8/s200/Sam+Pic+%25231.JPG" width="200" /></a>It is of course trite to say “love them while they are here”.<span style="mso-spacerun: yes;"> </span>We know that.<span style="mso-spacerun: yes;"> </span>But it never really hits you with its full magnitude until you lose someone so special, and so very dear to you.<span style="mso-spacerun: yes;"> </span>Someone that you felt connected to from the first moment you saw them, and whom you felt completely inseparable from.<span style="mso-spacerun: yes;"> </span>Someone who you never could have possibly imagined you would outlive.<span style="mso-spacerun: yes;"> </span>Someone who it was simply unthinkable that you would have to bury.</div>
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As we have written before, losing Sam in many ways still doesn’t seem real.<span style="mso-spacerun: yes;"> </span>There are times when I actually think to myself that he is away at camp or at a friend’s house or—I don’t know—somewhere, and that he will be home shortly.<span style="mso-spacerun: yes;"> </span>It is at those times that the loss becomes even harder to bear, because it comes as such a slap to the face when you realize that he truly is gone.<span style="mso-spacerun: yes;"> </span>And that he is not coming home today, tonight, tomorrow—forever.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhJgquTod5fwfxUjWWpFTjvLT1a55xfXW5PIf1_TvJgUeenF-ZlgGDi9gxzmw1EWf5Com7GrXuy2oR51BDymqbsPJrVbYsDysM1wb2Bx7szAFsZ4oy3TL15ToKyVSgRkDRpKfUCjs1cfE/s1600/003.JPG" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhJgquTod5fwfxUjWWpFTjvLT1a55xfXW5PIf1_TvJgUeenF-ZlgGDi9gxzmw1EWf5Com7GrXuy2oR51BDymqbsPJrVbYsDysM1wb2Bx7szAFsZ4oy3TL15ToKyVSgRkDRpKfUCjs1cfE/s200/003.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzlaWpWT4JRUXVcYo_dOeileZCZeO5L2xGnb7g9_1AePaTi0iAoegkNPEzWZwu_maWe5i6VdMdXXnn9CQU52ldnj-FKSSusLdN_lrewNnExT-SoE-v-siR6LiBUcpNsUSY-tMbqA2l_g/s1600/522.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzlaWpWT4JRUXVcYo_dOeileZCZeO5L2xGnb7g9_1AePaTi0iAoegkNPEzWZwu_maWe5i6VdMdXXnn9CQU52ldnj-FKSSusLdN_lrewNnExT-SoE-v-siR6LiBUcpNsUSY-tMbqA2l_g/s200/522.JPG" width="150" /></a><span style="font-family: inherit;"><span style="mso-spacerun: yes;"> </span>As often as we feel
that Sam was here just moments ago, so too do we often feel as if Sam died ages
ago.<span style="mso-spacerun: yes;"> </span>In fact, sometimes it seems as
though he might not have ever actually been here at all.<span style="mso-spacerun: yes;"> </span>As strange as that may sound, sometimes there
is a blur between reality, delusion and nightmare.<span style="mso-spacerun: yes;"> </span>Sometimes, the fog and haze and pain of loss
swirl together to form a cloudy nothingness, where you have trouble
understanding what has happened, because it all seems so surreal.<span style="mso-spacerun: yes;"> </span>Surely, there is no possible way that God or
anyone or anything else would ever take away an innocent child from his
parents.<span style="mso-spacerun: yes;"> </span>That wouldn’t be right.<span style="mso-spacerun: yes;"> </span>That wouldn’t be natural.<span style="mso-spacerun: yes;"> </span>And so it couldn’t have happened, right?<span style="mso-spacerun: yes;"> </span>None of this must have happened.<o:p></o:p></span></div>
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<span style="font-family: inherit;">All of these thoughts are fleeting.<span style="mso-spacerun: yes;"> </span>They happen in nanoseconds.<span style="mso-spacerun: yes;"> </span>They bounce around to and fro and pop in and
out randomly throughout the day.<span style="mso-spacerun: yes;"> </span>There
is no accounting for when we will think of Sam.<span style="mso-spacerun: yes;">
</span>There is no accounting for how we might feel on any given day.<span style="mso-spacerun: yes;"> </span>Sometimes I feel as though I need to see him
so badly that I get in the car and drive to his grave.<span style="mso-spacerun: yes;"> </span>Sometimes I see scrolling pictures of him on
my computer and I simply can’t bear to look.<span style="mso-spacerun: yes;">
</span>Other times, I eagerly pop my thumb-drive in and start going through all
the pictures, and smile and laugh and sob uncontrollably.<span style="mso-spacerun: yes;"> </span>There is no accounting for any of it.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpwoxbeKD1HFzzM7zNEcxtTmRkojmPMQ-gQNpOcAWzxhXU6OSocvxo5R_S0qfc6ruhrWkVQDGBA33-x5GyniwPtkr9PIhlPlQEaURFSlJKhgxZnjY75WCBpulNfeNzee5eUEjdI-1_eoc/s1600/008.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpwoxbeKD1HFzzM7zNEcxtTmRkojmPMQ-gQNpOcAWzxhXU6OSocvxo5R_S0qfc6ruhrWkVQDGBA33-x5GyniwPtkr9PIhlPlQEaURFSlJKhgxZnjY75WCBpulNfeNzee5eUEjdI-1_eoc/s320/008.JPG" width="320" /></a><span style="font-family: inherit;">Years ago I sometimes thought of myself as a loner—someone
who was more-or-less okay being alone.<span style="mso-spacerun: yes;">
</span>But I soon found out that’s not true.<span style="mso-spacerun: yes;">
</span>Not even close.<span style="mso-spacerun: yes;"> </span>When you find a
companion, have children, start a family, make new friends, get a cat or dog—and
then lose them—you realize how important it is to love and be loved.<span style="mso-spacerun: yes;"> </span>You understand the overwhelming joy of family,
companionship, camaraderie.<span style="mso-spacerun: yes;"> </span>You realize
the significance and true meaning of friendship.<span style="mso-spacerun: yes;"> </span>You see the importance and incredibly
uplifting power of community.<span style="mso-spacerun: yes;"> </span>And ultimately
you understand deeply what it means to do for others and leave a legacy for
society.<o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: inherit;">I often tell people that I could curl up into a little ball
in the corner and cry all day…..but what good would that do?<span style="mso-spacerun: yes;"> </span>Nothing at all.<span style="mso-spacerun: yes;"> </span>So instead, we decided to put one foot in
front of the other and just keep going.<span style="mso-spacerun: yes;">
</span>And we also decided to pour our hearts into trying to make it so that no
other child, no other family, has to go through what Sam or we did.<span style="mso-spacerun: yes;"> </span>Sam’s Foundation is starting to thrive.<span style="mso-spacerun: yes;"> </span>I think he would be so, so proud of some of the
things we have been able—because of the generosity of others—to do in his name and
some of the things that we have planned.<o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNQoBerVVEMYsD4pbOxGK5_j5dvNfRZXE9gYBqt4jD2fzpU1RyIto_hrij3tSuhuXoBRp7ayaiSm3gMAdE50ucYIfcAgEGXNoCbI6SNiWntxaY6aZ7Ehitu8n491EI0IpwyrS2RnwvYRM/s1600/536.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNQoBerVVEMYsD4pbOxGK5_j5dvNfRZXE9gYBqt4jD2fzpU1RyIto_hrij3tSuhuXoBRp7ayaiSm3gMAdE50ucYIfcAgEGXNoCbI6SNiWntxaY6aZ7Ehitu8n491EI0IpwyrS2RnwvYRM/s320/536.JPG" width="320" /></a><span style="font-family: inherit;">As a particularly moving example, the other day I received a
phone call from Dr. Mark Souweidane of the Weill-Cornell Medical Center.<span style="mso-spacerun: yes;"> </span>Dr. Souweidane is the head pediatric neurosurgeon
at Memorial Sloan-Kettering in NYC, and he is one of two doctors who runs the
Children’s Brain Tumor Project.<span style="mso-spacerun: yes;"> </span>Dr. S
called me to say thank you for our recent Foundation donation to the Brain
Tumor Project.<span style="mso-spacerun: yes;"> </span>We chatted about his
clinical trials and other medical and research issues.<span style="mso-spacerun: yes;"> </span>Then I asked him: “How can we best help?<span style="mso-spacerun: yes;"> </span>How can we really make a difference?”<span style="mso-spacerun: yes;"> </span>Dr. S told me that he’d like to see Sam’s
Foundation set up a Fellowship at Weill-Cornell.<span style="mso-spacerun: yes;"> </span>A Fellowship in Sam’s name and in his honor
that would fund a full-time, dedicated researcher that would work under his
direction on ground-breaking research and pioneering projects and studies.<span style="mso-spacerun: yes;"> </span>What specifically would he research, I
asked?<span style="mso-spacerun: yes;"> </span>Thalamic Glioma was the reply.<span style="mso-spacerun: yes;"> </span>I was stunned.<o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: inherit;">For those of you who don’t know, Sam had a thalamic
glioma.<span style="mso-spacerun: yes;"> </span>As far as we know, there is no
one in the world that has really studied thalamic gliomas.<span style="mso-spacerun: yes;"> </span>No one….until now.<span style="mso-spacerun: yes;"> </span>Dr. S would like to eradicate all types of
brain tumors in children, but <i style="mso-bidi-font-style: normal;">targeted</i>
research is critical, because even those brain tumors situated in the same
anatomical region have distinct molecular and genomic features that might influence
treatment plans.<span style="mso-spacerun: yes;"> </span>And even though these
tumors are rare and require concentrated research efforts, there is every
reason to believe that this targeted research will pay enormous dividends
across the spectrum of children’s tumors.<span style="mso-spacerun: yes;">
</span>Every step forward we take in this area has a cumulative effect and builds
upon itself, leading to further medical advances.<span style="mso-spacerun: yes;"> </span>For Sabrina and myself—and the
Foundation—this is huge.<span style="mso-spacerun: yes;"> </span>It is an
opportunity to both fund a project that is near and dear to our hearts and at
the same time holds a tremendous amount of potential for broader advances in
children’s cancer research.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5FDz3UwyvVcdjIHGAHOPjDmQbRLTZK3iWFDcnyWWs0kgtJNPvdWX7yPK9BaQi4iNrwmua3PzeI25sQCSMp8uj5V4njd5u0-iqq59h28M7i4Ovc7BzM10i8Gs5FXwtMgaYNZQnckPVUM/s1600/606.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5FDz3UwyvVcdjIHGAHOPjDmQbRLTZK3iWFDcnyWWs0kgtJNPvdWX7yPK9BaQi4iNrwmua3PzeI25sQCSMp8uj5V4njd5u0-iqq59h28M7i4Ovc7BzM10i8Gs5FXwtMgaYNZQnckPVUM/s320/606.JPG" width="240" /></a><span style="font-family: inherit;">We hope and believe that Sam’s Foundation, supported by the
generosity of our donors and the community, will help build a bridge to
tomorrow’s advances and breakthroughs that will give future Sammy’s a
chance.<span style="mso-spacerun: yes;"> </span>Ten years ago, if another family
had had an opportunity to do something like this, it is possible that Sam might
have lived.<span style="mso-spacerun: yes;"> </span>Ten years from now, it is
our fervent wish that some other child will be able to live if he or she hears
those same dreaded words that we did.<o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: inherit;">To help us make this vision a reality please visit </span><a href="http://www.samjeffersfoundation.org/"><span style="color: #0563c1; font-family: inherit;">www.samjeffersfoundation.org</span></a><span style="font-family: inherit;">. <o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: inherit;">Thank you so much.<o:p></o:p></span></div>
<span style="font-family: inherit;">
</span><br />
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<span style="font-family: inherit;">John & Sabrina<o:p></o:p></span></div>
Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com4tag:blogger.com,1999:blog-2428901333554588976.post-23152946656659752292015-09-01T20:36:00.001-07:002015-09-01T20:36:28.588-07:00Ripples on the Water<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Dear Sammy,</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">I once told you that you had the power to change the world. You didn’t believe me, so we went outside and dropped a tiny pebble in the birdbath. As we both watched the ripples, I said: “There do you see that? That tiny pebble caused waves that went all the way over to the other side.” You said “Wow” and I looked at you and told you that you’re just like that pebble. What you say and what you do; how you treat people and how you make them feel, really matters. If you say nice things and do great deeds and treat people well and make them feel special, you will change the world. Because those things spread out like ripples on the water. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Little did I know Sammy, that you would in fact change the world. Your smile. Your laugh. Your kindness. Your personality. Your humor. All those things and more spread out like ripples on the water. And the ripples touched a lot of people and they were felt far and wide.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Three years ago this month our world changed forever. We were told that you had cancer. “A lump growing in your head.” Your first question to Dr. Young was “Well, is it life-threatening?” Dr. Young said lots of things can be life threatening, but there are things we can do to stop it. And you said “Okay” and you believed him.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">When you needed your first blood draw at Children’s Hospital of LA, when the phlebotomist came in you said: “So, I understand you’ve been doing this for a long time, is that right?” And the nurse said “Yes”, that was true, and smiled and laughed.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you ever woke up from a surgery, as other children all around you were crying and vomiting, you opened your eyes, looked at me and mom and just smiled. Oh, what an adorable smile you had.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you needed to get accessed through your port for getting chemo you said to the nurse: “Okay, I’m going to just let you do it the way you feel most comfortable, and if I say “Ow” that means it hurts and so you might have to stop for a minute and try it again.” But you rarely said “Ow” and all your nurses loved you.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you went to Cottage Hospital for treatment, you cracked a joke with Nurse Julie and you and her laughed and laughed. Dr. Green came into your room just to see what on earth could be so funny, and he ended up laughing right along with you. That laugh of yours was incredible. It came right from your soul, and everyone who heard it melted. It was infectious. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you were asked to swallow multiple pills, bigger than you had ever seen before, you said: “Okay, I’m just going to count to five and then I’ll be able to do it.” And you did it.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time your little hand began to shake uncontrollably you found ways to deal with it. When it got so bad that you could no longer play on the computer or other games you started doing other things that you could do. You read. You cooked. You watched Giada De Laurentiis.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you had a massive, two hour seizure, when you finally came out of it, still postictal, you simply asked for Cow and when you saw him you smiled. I said “Hey Kid” in that outrageous Jersey accent, and we played a bit and everything seemed right in the world again, at least for that moment.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you were put on steroids and started to eat uncontrollably and started putting on weight, you wrote up a “Sam’s Special Dietary Plan—New” and asked all of us to please help you follow it because you “wanted to be healthy”. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you were told that the tumors had gotten much bigger you shared with Dr. Brown your eternal optimism: “Wow, that’s surprising, because we were thinking that last round of chemo had really worked and that the tumors were going to be this small (holding out your precious little hand and making a really small circle).” And Dr. Brown had to hold back his own tears and could only say, “Well, Sam, everything is relative.”</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you started having trouble walking and you were offered a wheel chair you were so excited and happy. You loved going on walks and being pushed and then saying “Can I get up and walk for a while?” And you did.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you realized you could no longer speak, you whispered and nodded and used sign language. And you hugged. Oh, how you hugged.</span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">The first time you had trouble swallowing and eventually eating, you asked for soup and milkshakes and you enjoyed them as much as you possibly could. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">And through it all, we came to realize how a precious little boy could change the world. Though cancer was ravaging your body and stealing from you everything it could physically, you never lost your hope, your courage, or your love for life. You brought out the best in your family, your friends, and your community. You made us all realize what really matters in life. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">You inspired us to try a little harder, be a little kinder, and do a little more to make a difference. You taught us that life isn’t always fair, and there isn’t always a fairy tale ending, but that little things matter. In your struggle you showed us grace, dignity, innocence and optimism that inspired all of us. You taught us to love and be loved and to be content and at peace with the world. </span></span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Sam, we will never forget you and how you made us all better people. In honor of you and in the spirit of Childhood Cancer Awareness Month, like ripples on the water we want to spread the word about kids like you and send love and hope to children with cancer and a message to the world that we all need to do more for our children who are now or might someday be battling cancer. </span></span></div>
<b id="docs-internal-guid-1dddf2db-8c1c-0fd0-2155-8560c8986b4d" style="font-weight: normal;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></b>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Georgia, Times New Roman, serif;">Support efforts to end Childhood Cancer forever and spread the word like ripples on the water. </span></span></div>
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<span style="background-color: transparent; color: blue; font-size: 14.6666666666667px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><a href="http://www.samjeffersfoundation.org/" style="text-decoration: none;"><span style="font-family: Georgia, Times New Roman, serif;">www.samjeffersfoundation.org</span></a></span></div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com3tag:blogger.com,1999:blog-2428901333554588976.post-35307185466745354062015-05-29T15:21:00.000-07:002015-05-29T15:21:18.948-07:00Crappiversary<span style="font-family: Georgia, Times New Roman, serif;">May 29th. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Two years ago today we learned that Sam would certainly die from his cancer in days, weeks, or months.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">From September 20, 2012 until May 29th, 2013 we believed that Sam would survive for years, maybe even grow to be an adult-graduate from high school, go to college, find a career, find love. The point is, we had hope. We knew cancer created all sorts of obstacles and bumps in the road. We knew there would be symptoms to be managed, treatment that would cause short-term and long-term side effects, we knew he would be sick sometimes. We never imagined he would be dead within 13 months of diagnosis.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That's the significance of May 29th.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I wanted to express here what a difficult time of year this is. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">School is wrapping up and proud parents are posting pictures of their children as they graduate from preschool, kindergarten, elementary school, middle school...and so on. There are awards ceremonies where your child is recognized for their achievements in math, their progress in reading, or their kind heart.Today our own elementary school hosted Muffins with Mom. Moms had breakfast with their students before school and are sharing photos of themselves posing with their young ones. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia, Times New Roman, serif;">In fewer than 3 weeks would learn that Sam was dying. Dying.</span></td></tr>
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<span style="font-family: Georgia, Times New Roman, serif;">Your children are precious and beautiful. I'm glad you cherish them. Don't stop sharing, but understand that it hurts me. It's not your fault. There's nothing you can do. </span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">This is just the way it is. </span><span style="font-family: Georgia, 'Times New Roman', serif;">I am not OK and that's OK. </span><span style="font-family: Georgia, 'Times New Roman', serif;">I may have unfollowed your Facebook page in order to spare myself the relentless bombardment of happy, proud parent posts, but don't worry, we're still friends. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So, it's this time of year: school ending, and May 29.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">You know, last week was Abby's birthday. Sam wasn't here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Two weeks before that was Mother's Day. Sam wasn't here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">We went to visit Ben at school. Sam wasn't here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Sam's birthday was April 2nd. He would've been 10, but he wasn't here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">We could look to the future. Any time to breathe there?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">June 1st-Dad's (Poppy's) birthday. He'll be 88. He outlived his 8 year-old grandson. What's that like?</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">July 4th-My birthday. I'm grateful to have one, to be alive, but Sam won't be here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Late July-We travel to Upstate NY to see family. 4 plane tickets instead of 5 because Sam won't be here.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The experts are telling you to be extra gentle and loving with your bereaved-parent friends 2 days a year-The day of their deceased child's birthday, and the day their child died.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I want to say-That's a LIE.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Instead I'll be diplomatic and say-That's an oversimplification.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The year is full of difficult times. I anticipate the anniversary, the birthday, the holiday, the event, the trip with dread. I experience the day with sadness, tears riding right at the surface, anger stewing and coming out in bursts at all the wrong times with all the wrong people. Then afterwards I feel like I'm hungover, but I never had the good time that's supposed come before. These rough spots with their build up and recovery never really allow for any space between them. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The year is full of these grief mines-these things that set us off. In fact, life is full of grief mines-They are everywhere. I'm not suggesting that you tiptoe around us and handle us like delicate china. Maybe just be open to the idea that even though I look OK on the surface and we're not anywhere near Sam's birthday or the day he died, I'm probably feeling crappy on some level. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">I don't know if there aren't any dark days. </span>Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com0tag:blogger.com,1999:blog-2428901333554588976.post-47637325829155447962015-04-02T14:25:00.000-07:002015-04-02T14:25:06.612-07:00Forever 8<div class="" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipiFVT8n1ZUWRZDeT6LIsDNqgjCTVuguiqnM0SCyC6Ew6VZ24-CHCTNicmlLH1MMsEEKCT-8aUdDwP-X73EAccGFCu8lbS_jZ3dFIAz_Nv6BWS8-jsVC339nRa7q4Ic6WV9gSRxbDWUac/s1600/151.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipiFVT8n1ZUWRZDeT6LIsDNqgjCTVuguiqnM0SCyC6Ew6VZ24-CHCTNicmlLH1MMsEEKCT-8aUdDwP-X73EAccGFCu8lbS_jZ3dFIAz_Nv6BWS8-jsVC339nRa7q4Ic6WV9gSRxbDWUac/s1600/151.JPG" height="320" width="240" /></a><span style="color: #0000ee; font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;"> Today, April 2, 2015, we will celebrate what would have been Sam’s 10th birthday—if celebrate is the correct word to use. Perhaps honor would be a better word. Whatever words there are to describe the situation, they all fall short. There are simply no words that can adequately describe the emotions felt by a mother or father who has lost a young child. We miss Sam terribly. We miss his smile, his laugh, his charming disposition. We miss everything about him. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We will never know exactly what kind of person he would be today, what he would look like, what he would sound like, what his interests would be. We can guess, but we will never know. For us and our memories of Sam, time has frozen. Sam is Forever 8. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> In the last year, we've done many things to honor Sam: We planted trees. We dedicated a bench and library corner at his school. We collected $2600 in coins from his former school mates. We held several little Lemonade Stands and one really big Luau. We collected sneakers Sabrina shaved her head. And we started a <a href="http://samjeffersfoundation.org/" target="_blank">Foundation</a> in his name, which raised enough money in its first partial-year to allow us to donate $5,000 to an important childhood cancer research project—<a href="http://projectviolet.org/" target="_blank">Project Violet</a>—in his honor. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> All these things may seem little by themselves, but together they add up. It’s all a part of our mission to raise Awareness of the problem of childhood cancer And as you've heard before, we believe that Awareness leads to Funding which leads to Research and ultimately Cures for our children. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg8iX0fVXDlr38YyV03KxVl-j9LtMrpn_wnCZUXC4h9TbKkAcH4QeCr8IGoy7ZH0QB1XcrASRFG4ckxVq5BAUGifKz8xKAAYijaWJAWi_7PYPDIfASUAU3jiN620_b30Pmrg2vx2JRgGA/s1600/photo.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg8iX0fVXDlr38YyV03KxVl-j9LtMrpn_wnCZUXC4h9TbKkAcH4QeCr8IGoy7ZH0QB1XcrASRFG4ckxVq5BAUGifKz8xKAAYijaWJAWi_7PYPDIfASUAU3jiN620_b30Pmrg2vx2JRgGA/s1600/photo.JPG" height="320" width="240" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"> Tonight we will go out to eat at Denny’s to celebrate and honor Sam. No, Denny’s is not normally what comes to the top of one’s mind for haute cuisine, but it was one of Sam’s favorites. Like everything else, Denny’s was a part of the fabric that wrapped our family and made our kids, especially Sam, happy. If there is one thing we've learned since Sam died, it is to embrace the little things in life; the things that make you happy, that put a smile on your face, that bring your family together. Cooking a meal together; a trip to the beach; a visit to the neighborhood playground; lunch at McDonald’s; a walk on the Bob Jones Bike Path or at Oso Flaco. Together time—embrace it, cherish it, hold on and don’t ever let go. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP0tOUK_MmeKophG7A9n3EDu4kz_y5byZ21aJmRCx4GS3XK68ZHPKx-Qhk3FFdVXdn31bGVwgAl9_7cbszwkkp1u3Yzo7MqQCwit2skEaftAHHQLABTdUOAZnztBMJfM-RetUOnFGnF54/s1600/photo+2.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: black;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP0tOUK_MmeKophG7A9n3EDu4kz_y5byZ21aJmRCx4GS3XK68ZHPKx-Qhk3FFdVXdn31bGVwgAl9_7cbszwkkp1u3Yzo7MqQCwit2skEaftAHHQLABTdUOAZnztBMJfM-RetUOnFGnF54/s1600/photo+2.JPG" height="320" width="240" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"> We would like to thank everyone reading this that has played a part in our lives over the years. All of you, in so many ways, have made our lives more fulfilling and helped—if even a little—to fill the gaping hole left in our lives after Sam passed away. We would like to extend an open-ended invitation to anyone, everyone, to visit Sam at his resting place someday. He is at the <a href="https://www.google.com/maps/place/Los+Osos+Valley+Memorial+Park/@35.303543,-120.800755,17z/data=!3m1!4b1!4m2!3m1!1s0x80ece4a09157415f:0x95a2a9422540517c" target="_blank">Los Osos Valley Memorial Park</a>, in the Jewish section of the property. Bring a small rock and place it on his headstone. And help us in remembering and honoring the little boy who loved life and loved people. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Happy Birthday Sam. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipiFVT8n1ZUWRZDeT6LIsDNqgjCTVuguiqnM0SCyC6Ew6VZ24-CHCTNicmlLH1MMsEEKCT-8aUdDwP-X73EAccGFCu8lbS_jZ3dFIAz_Nv6BWS8-jsVC339nRa7q4Ic6WV9gSRxbDWUac/s1600/151.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black;"></span></a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> John Jeffers, Sam's Dad</span></div>
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<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-5Jy1kgjhxhU%2FUzrmbroE5PI%2FAAAAAAAACKQ%2FesLhOhdyPwk%2Fs1600%2F151.JPG&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipiFVT8n1ZUWRZDeT6LIsDNqgjCTVuguiqnM0SCyC6Ew6VZ24-CHCTNicmlLH1MMsEEKCT-8aUdDwP-X73EAccGFCu8lbS_jZ3dFIAz_Nv6BWS8-jsVC339nRa7q4Ic6WV9gSRxbDWUac/s1600/151.JPG" -->Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-88325498060949781522014-10-19T21:39:00.001-07:002014-10-21T16:39:42.093-07:00One Year<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">One year. The passage of time since Sam died means nothing and everything to me at once. </span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">For an instant I can capture the memory of Sam's last moments as though they happened yesterday, yet I feel like I've been living without him for a very long time. </span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">That Sam is gone at all still leaves me stunned, yet there are times when I can scarcely believe he was ever here at all. </span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">On the one hand I am devastated and immobilized, on the other even I am dumbfounded at my ability to continue to live this life. </span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">Recently I was confronted with the idea of my own mortality. Like many women, I was called in for a second look after my annual mammogram. This was a first for me, and women don't talk about this frequent request for additional images so I assumed of course that I had breast cancer. I assumed I, like Sam, would die of my cancer. </span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">Now all this drama happened over the course of only 3 days but at some point while I was imagining my demise, weeping more than usual, and feeling really sick to my stomach, I realized that all of this distress I was feeling over the possibility that I might have cancer might mean that I actually want to live? Why wouldn't I welcome an end to missing Sam? Why wouldn't I feel relief that rather than decades without him it might be over over sooner rather than later? Do I like living? I thought about all of the work for kids' cancer that I have yet to do. The <a href="http://samjeffersfoundation.org/" target="_blank">foundation</a> has only just begun. My surviving children deserve to have a mother after losing their sibling. My husband couldn't lose a wife after losing a son. My parents. Oh the horror. To think my parents would have buried their eldest son, their youngest grandson, and their daughter. Have we experienced enough loss yet? Have we filled our quota?</span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">Dare I also admit that in addition to desparately wanting to stick around for my family and to continue to advocate for more funding for childhood cancer research, I also like life? There I said it. For selfish reasons, I want to live. I love my family. I need more time with them. I love my friends. I want to do more hiking and backpacking. I love teaching (yes, I am teaching again. Different story for another time). I like my post-apocalyptic TV shows, movies, and books (but I don't have cable, so PLEASE don't spoil The Walking Dead for me).</span><br />
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">But it has been a year, and so John and I have been thinking about what to do to mark this date. It would be traditional for us, as Jews, to unveil Sam's headstone at this time. We can't because in true Edelson-Jeffers fashion we 1)Procrastinated, and then 2)The process of ordering the headstone did not go so smoothly. So this weekend, while Ben was home for a visit, we went to Sam's grave and laid stones on the temporary plastic and metal marker, and spent some time. Tomorrow we will again visit Sam's grave and place stones (and a pumpkin), and we will spend time working on Sam's vegetable garden. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMC6vIw34NDJm9RJB67VQO_Dun_5Nfxa4wGEse_oxpaXyoZNePVVeKHF1YlTC5YEaOAGJVzFDmz-Vr1sMu_kzShtigt-Ge-QQ2WebKHZpB51ShkmljAK4Na0ZmB-KmEdA37RWBIoIL3OE/s1600/2013-07-04+13.45.05.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMC6vIw34NDJm9RJB67VQO_Dun_5Nfxa4wGEse_oxpaXyoZNePVVeKHF1YlTC5YEaOAGJVzFDmz-Vr1sMu_kzShtigt-Ge-QQ2WebKHZpB51ShkmljAK4Na0ZmB-KmEdA37RWBIoIL3OE/s1600/2013-07-04+13.45.05.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sam cheffing up his Circle Bar B chili July 2013</td></tr>
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">Before Sam died it was a wish of his to grow some food-any good chef wants fresh produce for his cooking, so last summer we planted a garden. He got to see it sprout and grow, and he lived to taste the carrots and tomatoes. He died before the corn was ready.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Sam cooking in 2010</td></tr>
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<span style="background-color: white; font-family: 'Courier New', Courier, monospace; font-size: 14.4444446563721px; white-space: pre-wrap;">I didn't plant this year. What would be the point? I guess the point is that it was something he loved, and we honor his memory by continuing the tradition even though he is no longer here. So even though it's Fall, in this part of California it rarely freezes so I think we're pretty safe to amend the soil, plant the seeds, erect the fencing(to keep Chance from digging it up, because you know, he wants to), and dedicate the garden to the little boy who loved food and cooking (and eating). <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpf4nC2nkp_rOfWmqr130CgPxGF-yyMbm_lOKbZ1Y7vyZM3gXYXxfkX0ugyuTNFCFCRiUjKVbQ36I4_sgWKLYfx7u9kRkcSnBhwW-HVowVFYCo96imIqatE9_FzPF46S1aBFVA1ahl98/s1600/1438.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpf4nC2nkp_rOfWmqr130CgPxGF-yyMbm_lOKbZ1Y7vyZM3gXYXxfkX0ugyuTNFCFCRiUjKVbQ36I4_sgWKLYfx7u9kRkcSnBhwW-HVowVFYCo96imIqatE9_FzPF46S1aBFVA1ahl98/s1600/1438.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sam and Chef Jacob, July 2013</td></tr>
</tbody></table>
</span><br />
<br />
<br />Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com6tag:blogger.com,1999:blog-2428901333554588976.post-25884602001652631902014-09-13T19:06:00.000-07:002014-09-13T21:31:50.096-07:00All it takes is a Community<div class="MsoNormal">
John and I would like to thank everyone who supported the
<a href="https://www.facebook.com/LemonadeandLoveforSam5Cities" target="_blank">Lemonade and Love for Sam</a> Luau last weekend…all of you who helped organize,
set-up, run a stand, or clean-up; or who
donated time, money, and energy to this great event—Thank You!!! I don’t know how many people ended up coming,
but it was a lot. We raised a lot of
money (still being counted) and a lot of awareness for the childhood cancer
cause….and we couldn’t be more proud of everyone who participated and contributed
and helped make this happen. Many of you
came from near and far to be a part of it and we want you to know that we
appreciate each and every one of you and all of your efforts!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Speaking of raising awareness and money for childhood
cancer, for the last few months John and I have been working on setting up our
own non-profit charitable foundation. We
are proud to now be able to announce that the Samuel Jeffers Childhood Cancer
Foundation is a reality! We received our
Letter of Determination granting us 501-c-3 tax exempt status from the IRS on
Tuesday this week, culminating several months of paperwork and some deep
thinking.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We thought long and hard about the pros and cons of forming
our own Foundation. We are aware that
there are many other such foundations—often formed by families just like ours,
who have lost a child to cancer. And we
are aware that we are perhaps contributing to the problem of having too many
organizations spread too thin to do much good.
We seriously considered just concentrating our efforts on only one or
two childhood cancer organizations, so that we could have the most impact with
our limited resources. </div>
<div class="MsoNormal">
But in the end, we decided to move forward with Sam’s Foundation
(whose tagline is “<i>Cooking up a Cure for
Childhood Cancer</i>”) because we would like to make an impact on a somewhat
narrower—but desperately in need of help—segment of the childhood cancer
landscape. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One of the most pressing problems with childhood cancer is
that<a href="https://www.blogger.com/null" name="_GoBack"></a> childhood cancer is not just one disease. There are many different types and many more
subtypes, each one requiring specific and unique research to develop the best
method of treatment. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While we have (very thankfully) been successful at treating
certain types of pediatric cancer—thanks to increased awareness and a modicum
of funding—the success rates for many of the other types of pediatric cancer
are not good. These rarer types of
childhood cancer are not so rare when viewed as a whole, as together they
account for a good portion of all childhood cancers. Because so few children are diagnosed with
these specific rarer types, little research is done on each one
separately. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A sort of “vicious circle” therefore exists with respect to
most types of pediatric cancer: They are
rare enough that little awareness exists and very little or no research is
being done; therefore no new drugs or therapies are developed; therefore
children affected by some of these types of cancers are sentenced to almost
certain death. No child should ever have
to face that kind of future. We hope
Sam’s Foundation will be able to make a positive impact on some of these rarer
types of children’s cancer.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Having our own Foundation doesn’t mean that we are
abandoning <a href="http://www.alexslemonade.org/mypage/1114567" target="_blank">Alex’s Lemonade Stand</a> or <a href="https://www.stbaldricks.org/participants/mypage/668136/2014" target="_blank">St. Baldrick’s</a>. On the contrary, we will continue to support
these great organizations and their missions to end childhood cancer. They are doing great work and they continue
to run “lean and mean” in the fight against kids’ cancer, by holding their
expenses down and contributing an above-average amount of donated funds to
directly support children’s cancer. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
We will partner with these organizations where we can and
fund our own research projects when feasible, and together we hope to make an
impact that will change the lives of children forever. And we thank all of you for helping us in
this mission.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Here's a sampling of the community that made this event happen.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAgadoX4IJ7yvengwaGmSxhL3S83mnS3NrIs90K63zaS22n3IUDWCx-AZ4AkmgQUuyrnvrGeszFkqElXY36esMyrYDRvMRtDU5QJBkDvQxdjUG9H279J8_pTgjk7-muDEcC1qJUdVY2-Q/s1600/10670212_712550208810323_2959392765907721955_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAgadoX4IJ7yvengwaGmSxhL3S83mnS3NrIs90K63zaS22n3IUDWCx-AZ4AkmgQUuyrnvrGeszFkqElXY36esMyrYDRvMRtDU5QJBkDvQxdjUG9H279J8_pTgjk7-muDEcC1qJUdVY2-Q/s1600/10670212_712550208810323_2959392765907721955_n.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Lemonade Moms: Erl K., Harmony B., Michelle D., Mary M.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6wDR0bECdQmKPibwkiryKYyXGUtbCQJBT2zssTHo1_SUEXhiu0fWhRm1u5xc9D4WHn0LGKF98IN9WZhBeHxxMRZ2it0Yk8Q4W9SOG3xDzfcdxC5DDEp9NEVwd8agiNn2mHIkSOZjrlAA/s1600/997040_712551895476821_4663843469291551152_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6wDR0bECdQmKPibwkiryKYyXGUtbCQJBT2zssTHo1_SUEXhiu0fWhRm1u5xc9D4WHn0LGKF98IN9WZhBeHxxMRZ2it0Yk8Q4W9SOG3xDzfcdxC5DDEp9NEVwd8agiNn2mHIkSOZjrlAA/s1600/997040_712551895476821_4663843469291551152_n.jpg" height="265" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The crowd<br />
<br />
<div style="text-align: left;">
<br /></div>
</td></tr>
</tbody></table>
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<br />Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-80775840124032091192014-07-28T05:14:00.001-07:002014-07-28T06:02:41.026-07:00Gratitude<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I'm not good with words, and even if I was I can't identify what I'm feeling now-except for the gratitude. Gratitude that my husband and teenage children would come all this way with me and be in this awkward position of sharing our tragedy with the world when the three of them are such private people. I think they thought this this going bald fundraiser was all mine, but really it's ours. It's taken the combined effort of our little family, our extended family, our friends, our friends' friends, and strangers. </p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"><br></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I am grateful that John and Ben and Abby came along with me to Boston. They've met a flood of people from various eras and experiences in my life. Those people have taken pictures of Ben and Abby and John, they've hugged and shook hands, and probably looked at them with sad eyes, and I know it's been overwhelming and uncomfortable. </p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkIj7QjH06uKL0iBPwYqKmCANsI5p-H9eSCkI1tXXttiXNa3Q82JBBjK5-5nunuzM-raAaUajxFXCf3aIPJXONx-y5tN9s8ryP28SQHKuf7WPvc4v22E09OVfM8egK3TlXhXM9xw_i1vk/s640/blogger-image-522714023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkIj7QjH06uKL0iBPwYqKmCANsI5p-H9eSCkI1tXXttiXNa3Q82JBBjK5-5nunuzM-raAaUajxFXCf3aIPJXONx-y5tN9s8ryP28SQHKuf7WPvc4v22E09OVfM8egK3TlXhXM9xw_i1vk/s640/blogger-image-522714023.jpg"></a></div><p></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"><br></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">And let's talk about those people who came to support us yesterday (or the folks who couldn't come but donated to St. Baldrick's, and the ones who sent messages of love, or those who are holding down the fort back home by caring for our pets, and taking in our mail). We were carried along yesterday by our extended family who traveled from the Albany area and Alexandria, VA to Boston to love on us, my high school friends from Connecticut, Maine, and the Boston area, youth group and camp friends drove from as close as Medfield, and flew from as far as Chicago. </p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgselvUNnP3EbrlIKzr1DH4h1_lGQR2_2WnLMiq_amxduoPWNdyi2QoR02xGfyl22DwsaICTtD82ou1F1jxduIBK-u7YpV18MmOmTkBaYKWbO3EEknOD53-DgzzUF_LyLNObK8j2dMtoxI/s640/blogger-image-1241766772.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgselvUNnP3EbrlIKzr1DH4h1_lGQR2_2WnLMiq_amxduoPWNdyi2QoR02xGfyl22DwsaICTtD82ou1F1jxduIBK-u7YpV18MmOmTkBaYKWbO3EEknOD53-DgzzUF_LyLNObK8j2dMtoxI/s640/blogger-image-1241766772.jpg"></a></div><p></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkxhuwQCh-itrf8_pfwsS5csOo-oEArplWnWzYBN_hh_e9lXNSP8T84vxlDDo1Y5Nq17Y3rWAtOfwButug9NqQPlaBNMz7ThPJ_vS9YC9zd6OOrv2GJJaFGZLL3x5kgN17r3ZMxohbzRg/s640/blogger-image-693219099.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkxhuwQCh-itrf8_pfwsS5csOo-oEArplWnWzYBN_hh_e9lXNSP8T84vxlDDo1Y5Nq17Y3rWAtOfwButug9NqQPlaBNMz7ThPJ_vS9YC9zd6OOrv2GJJaFGZLL3x5kgN17r3ZMxohbzRg/s640/blogger-image-693219099.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihk2nrBmNdDaYOspOj31FlW2vNUK7A0OT6_QyclqJqkesuI0TDF6Bw_QKT6JZfZ5SiZ3r1-aCElngh2qBq001irwxKiUBYW9xyIUndkBAm-C7PIJ_TLUV3lLP1Ap0j2AmwYAH3baFKpsE/s640/blogger-image--922389575.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihk2nrBmNdDaYOspOj31FlW2vNUK7A0OT6_QyclqJqkesuI0TDF6Bw_QKT6JZfZ5SiZ3r1-aCElngh2qBq001irwxKiUBYW9xyIUndkBAm-C7PIJ_TLUV3lLP1Ap0j2AmwYAH3baFKpsE/s640/blogger-image--922389575.jpg"></a></div><p></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxN9v929lcFFtxz0MpOZmIQKo_RXElmLrJnCTxj-gScklS7p3D-yXK1aPmRNn-m91q6nA911cI41JzXlwArKOrt0N0_CW-yO7iHcpS_3MQfurikOAV_46xPnpPnfwgVQL2kL2JZCrHKM/s640/blogger-image-394347561.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxN9v929lcFFtxz0MpOZmIQKo_RXElmLrJnCTxj-gScklS7p3D-yXK1aPmRNn-m91q6nA911cI41JzXlwArKOrt0N0_CW-yO7iHcpS_3MQfurikOAV_46xPnpPnfwgVQL2kL2JZCrHKM/s640/blogger-image-394347561.jpg"></a></div><br><p></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I am flabbergasted that these people are still with us, physically and emotionally. It's not just donations that prove they are still with us. Although that evidence is irrefutable to the tune of over $14,000. They didn't turn and run when Sam was diagnosed. They didn't shut down when Sam died. 9 months later they are still here with us and they say his name and share their stories of Sam. Even if they've never met him, they have stories of their kids playing a game because Sam would have liked it, or memories of photographs I posted. </p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"><br></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">What's huge to me is that many of them have taken this cause on as their own. Their perspective on childhood cancer has been altered. They no longer think of it as a rare but highly curable (90% a sign on the T read) childhood disease. Sam's illness and death touched them in such a way that they now feel compelled to tell his story to their friends and family. Yes, they shared my 46 Mommas fundraising link on Facebook and retweeted my tweets, but they've also held fundraisers at work, and their kids have donated birthday money. We've broadened the circle of awareness, and as we increase our reach, we raise raise more money, and ultimately I hope that we become impossible to ignore.</p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"><br></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I am also grateful for my bald head. It may not be evident if you only know me through the internet, but I am a bit of a quiet person. It is my hope that my shocking appearance (along with the button-"Ask me why I'm bald.") will prompt people to start a conversation with me (I'm quiet, but once I get started talking, I think my friends will attest, I'm a talker). It is also my hope that if people are simply staring at my bald head that I will have the courage to ask them, "Are you wondering why I'm bald?"</p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4zKLVNVwfSdPvAaphZlWJLAi9IdSBkZHoMFKzlu0sOpCZQbpZBh91KnXZWAhU_0oj0HhvyCMs3s1-m5q1WnpQ8DkZ3icOdTJY-axHBYJzg_I7QiT7EEfPShg74AqhWIxSlwT80uFfVpE/s640/blogger-image--707287109.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4zKLVNVwfSdPvAaphZlWJLAi9IdSBkZHoMFKzlu0sOpCZQbpZBh91KnXZWAhU_0oj0HhvyCMs3s1-m5q1WnpQ8DkZ3icOdTJY-axHBYJzg_I7QiT7EEfPShg74AqhWIxSlwT80uFfVpE/s640/blogger-image--707287109.jpg"></a></div><p></p>Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com0tag:blogger.com,1999:blog-2428901333554588976.post-10694730093384830432014-05-11T11:51:00.000-07:002014-05-13T21:59:54.406-07:00FlickerYou've probably noticed that I don't write much anymore. It's not that I don't have plenty to say. It's just that most of what I need to write about is not mine to write about. The teens have big struggles and that's what's hurting the most right now. But they are teens, so I won't share their heartache with you. That's their job, if they choose to do it.<br />
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Sure I have plenty of fall-out of my own, but much of that is already so well spoken about some of the other bereaved moms I know (<a href="http://supermansamuel.blogspot.com/" target="_blank">Phyllis Sommer</a> and <a href="http://www.love4jlk.org/?page_id=87" target="_blank">Libby Kranz</a> to name a couple). </div>
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And then there's the mundane fall-out that most, if not all, cancer families suffer-Money. The result of my extended leave of absence from teaching is that the district has elected to release me. I was told I could reapply for my job. I certainly could have applied for employment with other districts. I chose not to. I don't have the energy to sell myself to anyone at the moment. I don't know if I ever will. </div>
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There is also the issue of the spark. That little, bright light inside of a teacher that pushes them to teach. The drive that urges a teacher to continually return to a job that doesn't offer financial rewards, provides endless frustration, but still manages to feed her soul. My passion for teaching, the thing that made it feel like I never worked a day in my life, is lost. I think I know exactly when it happened too-May 29, 2013-the day we were told there was no hope. The bright little light inside of me was extinguished. It didn't fizzle or sputter. It didn't grow dim. It disappeared.</div>
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Around the turn of the year, a time when it would have been quite logical for me to return to the classroom, I began to worry about that spark. I looked for it. I felt for it. I decided to give myself more time, and John decided to support me. Given that it was also around this time that most of my income began to go to pay the sub, this had to be a joint decision. </div>
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After a couple more months without even a flicker from my spark, I realized that there was another spark, a different passion. I'd been taking care of these kids who are hurting so badly. I'd become a part of a <a href="https://www.facebook.com/events/514823015291839/" target="_blank">community raising awareness</a> and raising money for childhood cancer causes. So it's not that my light had gone out, it was relocated. My drive was repurposed to my family and a cause.</div>
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Before I learned that my contract would not be renewed, I decided not to fight this new arrangement of my light. I also decided that if my contract was renewed for the fall that I would give teaching a chance. </div>
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I thought it was possible that upon my return to the classroom that my passion for teaching might be unearthed-by being there. By doing it. By the kids. So essentially I left the decision of whether or not I should still be a teacher up to the universe.</div>
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The universe has cast its vote. My emotional energy belongs first, here at home, and second, with childhood cancer. I am not afraid to work hard at whatever job I find to pay the bills (Go Cal!)-I don't want a free ride. I don't want to take it easy. I just have to keep my priorities straight: Keep the family going, make the world a better place, pay the bills.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj7ry6LZ9tSTB6wq0KI8qa8QfKKfo-2Po9MRbNKk_c5EtqjoUzSeA-Mm6UekKTBjAtazbIZRlMCdNUg3_Z72f8sOWhQtcUjgiSFB2LE7R-XrUwSb5Eao_LVxkMjZWu2dLX_tUpbqoC8nQ/s640/blogger-image-1680210501.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj7ry6LZ9tSTB6wq0KI8qa8QfKKfo-2Po9MRbNKk_c5EtqjoUzSeA-Mm6UekKTBjAtazbIZRlMCdNUg3_Z72f8sOWhQtcUjgiSFB2LE7R-XrUwSb5Eao_LVxkMjZWu2dLX_tUpbqoC8nQ/s400/blogger-image-1680210501.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Summer 2012, 2 months prior to diagnosis. We went to see family & friends in NY & CT blissfully unaware.</td></tr>
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<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="https://www.facebook.com/events/514823015291839/" target="_blank"><img border="0" height="310" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC3-wdayf2425lMIh37ry4jlIWBbeofOgSjvw0NPwJHpZ3EK5u-RhVp2QbbrUVstKQj2hGludOPFf3u6LFLB63__r8MEXcT4CNvEjZ9Snyp8wizx7QI5ya3a9HcPhiAHhFScQwUWYDQuY/s400/blogger-image-932296651.jpg" width="400" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.facebook.com/events/514823015291839/" target="_blank">Unless you are a <i>complete </i>couch potato, you can raise awareness.</a></td></tr>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-61376244091690223452014-05-11T11:38:00.000-07:002014-05-11T11:38:42.227-07:00Mother's DayI don't have a Mother's Day post, but John does. I always thought that Mother's Day, like Valentine's Day and Father's Day, is not a real holiday. I call them Hallmark Holidays. You know, holidays made up by companies that make money off of holidays. Don't get me wrong, I've always enjoyed the handmade cards and gifts that came from my children. I treasured their joy, their love. I no longer have a little one in elementary school making gifts and cards. Childhood is suddenly over. I get to think about that every day. I get to miss him every day. I get to question whether I did enough every day.<br />
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John's thoughts-<br />
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">It is so sad going through a Mother's Day without Sam. I can
honestly say that this is the first "going forward" milestone that
has hit me. I hadn't been feeling too bad about some of the others, even
Sam's own birthday, but for some reason him not being here for Mother's Day is
getting to me.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">I think one reason is that for last Mother's Day, he had woken up
early and made Happy Mother's Day pictures for <i>all</i> of us. At the time, we just thought it was Sam being
"cute", making something for everyone, which was definitely not out
of character for him. But now, looking
back, I think it was a sign of his mental health going downhill. There
was something wrong and he was starting to get a little confused. It was
just a few weeks before we were told he was going to die, and we had just begun
to notice a change in him.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">His balance was off, and he was tripping and stumbling a bit more
than he used to when his little rubber clogs would catch on the ground. Sometimes he would seem to not be paying
attention to us, seeming a little aloof and "distant" from
time-to-time. At first, we thought it was just that he had a cold, and
the congestion (combined with the tumors) was just exerting a bit more pressure
than usual, and it would get better. Then it got a little worse, and so
we thought maybe it was the increased keppra (anti-seizure) dosage, which can
make you a little foggy, as your body adjusts. Then we thought maybe it
was "chemo brain", and the latest round of chemo was having a
different or perhaps cumulative effect, which would go away soon after we
halted that round.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">But when I expressed my concerns to Dr. Greenfield at Cottage
Hospital, he actually took it very seriously, so much so that I found myself uncharacteristically
"arguing" with him about how it was probably just the
cold. And he said "well, maybe, but maybe not." He
knew. And I was in denial. <o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">After that visit to Cottage we immediately told Dr. Brown at
Children’s Hospital that we wanted his next MRI moved up, and so that's what we
did......and on May 29, 2013 we were told to start planning for Sam’s end of
life, that there was nothing more we could do.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">To this day, I still cannot believe what happened. After
that appointment, Sam, Sabrina and I went to the Denny's down the street in
Hollywood—just like always. Sam ordered his mac-n-cheese and grapes and
goldfish—just like always. Sabrina and I ordered soup, and barely touched
it. As he sat there eating I watched him
so intently—wondering exactly what the future held for him, and for us. He was so cute, and innocent. He had always been such a trooper and so
trusting and did everything anyone ever asked him to do to make those tumors go
away. And we couldn’t figure it
out. We couldn’t help him. No one could.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">On the drive home I think it finally hit him. He cried and
lashed out: "It just seems like everything's just impossible",
he said. And as he cried—one of the very, very few times he had done so
throughout his entire nightmare of living with cancer—tears just streamed down
my face as we drove down Ventura Highway.
I wanted to rip the steering wheel out of its column; I was so
angry and so sad for him. We had let him down. And there was nothing we could do about it.<a href="https://www.blogger.com/null" name="_GoBack"></a><o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">It was a day I will of course never forget. And today,
sitting here under his Happy Mother's Day picture that hangs on the bed still,
I now know that when he drew that, he was very sick, and in less than
six months he would be dead. It's
just incredible to me. <o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 10pt;">I hope my wife can find some joy on this day. She deserves it. She’s still a momma—and a damn good one
too. We all love her and I know Sam’s
looking down on her and just like last year saying: “I hope this day is like 50
birthday’s!!! Happy Mother’s Day, Mom! I love you!
Love, Sam”<o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Happy Mother's Day. I love you more than anything. I love you too. I hope this feels like 50 partys. I have a surprise.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Muffins with Mom, 2013</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mother-Son Dance 2013</td></tr>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com0tag:blogger.com,1999:blog-2428901333554588976.post-23941799858941271042014-04-13T10:42:00.000-07:002014-10-19T20:41:37.252-07:00Let it Go We had no plans for Passover. No one wants to do anything. My mother has always hosted the Seder and led the planning, and this year, as her voice broke, she told me she didn't want to do it. I offered to do something, anything, even just a nod to tradition, in our home. No takers. So I let it go (go ahead and sing. I am one of 4 people on the planet that has not seen this movie. We no longer have a child of the age that enjoys animated features).<br />
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<tr><td class="tr-caption" style="text-align: center;">Passover 2012-Pre-Diagnosis</td></tr>
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We used to be the Friday night service type. On a regular basis Abby, Sam and I would attend shul. Sam sat with his friends in the front row, and Abby and I sat with my friends, the parents of Sam's friends, right behind them-within shushing and blessing distance. Three times a year we hosted oneg Shabbat after services in honor of our children's birthdays (Oneg Shabbat means joy of Shabbat so we brought snacks and treats because food = joy, right?). We always had cake, and it had to be from costco.</div>
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When Sam was placed on hospice in June 2013 we stopped going to services. Services came to us most weeks. Rabbi Linda and Dr. Bob (our shul's guitar playing neonatologist song leader) would come on Friday afternoons a sing Shabbat songs with us. </div>
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I don't remember when it was that they stopped coming, but at some point Sam became too tired and uncomfortable to have people in the house. I still lit the candles and we said blessings and nibbled challah and I tried to remember the grape juice. Sometimes I would remember to buy it but Friday night would come and I would forget we had it.</div>
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After Sam died, I continued to observe Shabbat with John, Abby, and Ben in this very small way-Light candles, say blessings, nibble challah, sip juice-Oh my goodness! Look, there's juice I bought before Sam died. I forgot to use it. Such a heavy feeling. He was here. Now he's not. How is that possible?</div>
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Chanukah came and we observed. We lit candles. We sang blessings. We took photos. We opened gifts. I even bought gifts for my surviving children. I'm impressed by myself now.</div>
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It was sometime after Chanukah the Shabbat observance just stopped. I haven't lit a candle, nor sung a blessing in months now.</div>
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Abby asked once, "Are we even jewish anymore? Ben's an atheist, and <i>we</i> don't do anything."</div>
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If Abby asked me to return to temple, I would. If anyone, other than me, in the family showed any interest in observing Jewish holidays, I would. But they don't. So I let it go. And the days pass. They are all the same. The only differentiation of one day from another is whether or not I have to set an alarm. </div>
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At the beginning of April, something started to stir. Yes, it was Sam's birthday, and it was hard and sad and still is. I should have a 9 year old, not a dead 8 year old. But that's not what caused the stirring.</div>
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As I watched the <a href="http://vimeo.com/90722948" target="_blank">live feed</a> of the <a href="http://www.stbaldricks.org/events/mypage/10921/2014" target="_blank">36 Rabbis Shave for the Brave</a>, as I listened to my old camp and youth group friends and their friends singing and praying-I felt a pull. Those familiar melodies and words are powerful. And if I'm honest with myself, I'll admit, I miss them.</div>
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But I can't go back to temple. He was there. Now he's not. I don't think I can bear to watch his friends grow up. What would be the point? </div>
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So I've been thinking about Passover. My mother always reminds me that Rabbi Mendel said that all the Torah really says about Passover is that we must eat matzoh. To remember what our ancestors went through, simply eat the bread of affliction. (Now I will not enter into any kind of discussion whatsoever about the validity of of my retired rabbis ideas about observance. I am hanging onto my Jewish faith by a thread here, so just let it go.) </div>
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That simple idea drove my Google search of "alternative Seder ideas," (which resulted in pages of websites to visit with ideas to "liven up your Seder," and "take the boredom out of your Seder"). Too complicated, and boredom is not the issue here. The one result that stood out to me as a non threatening way to dip my toe back in the waters of Judaism was a "<a href="http://mychocolateseder.com/chocolateblog/about/" target="_blank">Chocolate Seder</a>." What drew me even closer was that the <a href="http://mychocolateseder.com/chocolateblog/passoversederideas/2010/10/17/the-uc-berkeley-hillel-chocolate-haggadah/" target="_blank">Haggadah</a> for said Chocolate Seder comes from Hillel of UC Berkeley (Go Cal! Surprise! Ben's going to Cal next year. He forgot to mention his Nobel Prize for Physics research involving a boat made entirely out of duck tape and cardboard on his Stanford application, so they rejected him.). </div>
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.marthastewart.com/351253/chocolate-macaroons" target="_blank">Martha Stewart's macaroon recipe never fails me</a></td></tr>
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I tested my idea out on Abby. "How about if we have a Seder entirely comprised of Passover desserts? Bubbe's matzoh candy, my dark chocolate macaroons, brownies..." Her response was an enthusiastic, "I like chocolate." That's enough for me. It is on. </div>
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What would Sam have thought? He would have been bouncing off the walls with excitement.<br />
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P.S. Not that anyone was thinking it, but if you were going to comment that a Chocolate Seder would not be kosher for Passover, Let. It. Go.</div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com4tag:blogger.com,1999:blog-2428901333554588976.post-91157663711826979932014-04-01T11:22:00.001-07:002014-04-01T13:59:25.458-07:00Wishes<div class="MsoNormal">
From John, March 31st, 2014:</div>
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I’ve been feeling pretty good lately. We had a wonderful memorial celebration for
Sam at Happy Time pre-school, where “Sammy” the Samasourus (a new playground
Dinosaur) was unveiled, and a lemon tree was planted in Sam’s memory and
honor. And the cutest little wooden
bench, with a memorial plaque, was made by a Happy Time family’s grandfather. And I didn’t even cry.</div>
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Ben and I drove out to Sam’s grave recently, while we were
in the area. And neither of us cried.</div>
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Abby and her friends made a really cool camo-cake and Crabby
Patty cupcakes in honor of Sam’s upcoming birthday on April 2. He would have been 9. I loved the cake and the mini-celebration we
had. And I didn’t cry. </div>
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And yet today, sitting at my desk alone and working, it hit
me. Yes, again, like an iron
shovel. He is <i>gone</i>. He is not coming
back. I cannot see him. I cannot touch him. I cannot hug him or hold his little warm
hand. I cannot kiss his cheek or
lips. I cannot talk to him and have him
talk back to me. </div>
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And so today I cried.
Because sometimes it hurts so incredibly bad. The cold harsh reality of life without Sam
comes up and slaps you in the face really hard from time-to-time. When you least expect it. And you have to just sit there and take
it. You can’t fight back against the
reality of him being gone. You’re
helpless to that past.</div>
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I can look at his pictures.
I can put little blue M&Ms in a special jar for him and tell him
that I saved them just for him. I can
talk to him when I feed his goldfish and let him know she’s fine. I can let him know about all the things we’re
doing in his honor to raise awareness for pediatric cancer. But he won’t respond back. He’s gone.</div>
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During his life post-diagnosis, every time we got to make a
wish (when we found a lucky penny or blew out birthday candles) we all would
secretly wish for the same thing: To
have Sam’s cancer go away and for him to be healthy. This Wednesday, on April 2, I will once again
make a wish. I will wish that no other
child—no other family—no other community—will have to go through what we
have. I will wish for the continued
strength for my family and friends to continue the only kind of “fighting back”
we can do now: Raising awareness of
childhood cancer, working towards a cure for pediatric cancer, etc. </div>
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The world can be a cold, harsh place sometimes; but fond
memories, family bonds, good friends, kind deeds, warm hearts—and hope for the
future—all go to brighten the days and let us keep marching on. </div>
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Happy Birthday Sam.</div>
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<tr><td class="tr-caption" style="text-align: center;">8th Birthday Celebration #1 (friends), 2013</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnjS1Dn_KIDt4dvS1Pu2GAKCBaRx0B7pKLlXFc_afvZeQmjmmRAP7bh5uopYZH2JHoYjupelvdmC6Bi6wzRZ81yOL_1DybfBJiMXWaOO2RL9PQDyFcb0Cy6BkxQdAIWDjAotaSNfo87pQ/s1600/161.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnjS1Dn_KIDt4dvS1Pu2GAKCBaRx0B7pKLlXFc_afvZeQmjmmRAP7bh5uopYZH2JHoYjupelvdmC6Bi6wzRZ81yOL_1DybfBJiMXWaOO2RL9PQDyFcb0Cy6BkxQdAIWDjAotaSNfo87pQ/s1600/161.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">8th Birthday Celebration #2 (family), 2013. As he most loved to be: in pajamas, partially nude, full of joy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg15W3UgDTl_HeQkMQ-T4aXpQAdCxlq8wAWtvMeK2tEoaokHMV5MBEKlzQlf8KZ-banm1TlaTh5UEvIQ0a1AmDfg5trrEi5r-cto_ol-bQVlhdFH2fDx_hEt9MWvrwwu07MYkcWFe2453I/s1600/198.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg15W3UgDTl_HeQkMQ-T4aXpQAdCxlq8wAWtvMeK2tEoaokHMV5MBEKlzQlf8KZ-banm1TlaTh5UEvIQ0a1AmDfg5trrEi5r-cto_ol-bQVlhdFH2fDx_hEt9MWvrwwu07MYkcWFe2453I/s1600/198.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">8th Birthday Celebration #3 (temple), 2013</td></tr>
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<i>April 1st, 2014:</i></div>
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<i>It probably won't surprise you to read that John and I are different. At the dedication of the Sammysaurus, lemon tree, and bench, I cried. When I visit his grave, I cry. Before we cut into the camouflage cake, I cried. </i></div>
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<i>I'm not writing these days because what would I tell you? "I cried."? </i></div>
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<i>This morning when John went to feed Goldie, he found her delicate orange body floating on the surface-lifeless. Goldie is dead. We buried her beneath the rosebushes in the front yard before I took the teens to school.</i></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-0oeZpAYEsNuFGAyz-YFR2ysI6fOmNUWiPHXYQxd5e3TSqUfOZRiSPJqarhFGWY3FpZyfX834zzAnZ12eV-YCKiRwCdTjBkcJPEIsI3LJQ21Z4qdfLyIloyvK4avdaYLLQSzfF0ISzz0/s1600/photo+(29).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-0oeZpAYEsNuFGAyz-YFR2ysI6fOmNUWiPHXYQxd5e3TSqUfOZRiSPJqarhFGWY3FpZyfX834zzAnZ12eV-YCKiRwCdTjBkcJPEIsI3LJQ21Z4qdfLyIloyvK4avdaYLLQSzfF0ISzz0/s1600/photo+(29).JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rest in peace, Goldie</td></tr>
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<i>Tonight my friends, Michael, Phyllis, Rebecca, Eric, Jason and 70 or so of their colleagues will be shaving their heads to raise money for childhood cancer research and to expose their grief. They have raised over $540,000 so far. I will be watching them tonight <a href="http://chicago.ccarnet.org/live-stream/shave-for-the-brave/" target="_blank">here</a> at 7:45PM Pacific time.</i></div>
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<i>My head shave with the 46 Mommas is scheduled for July 27, 2014 in Boston, MA. In honor of what should be Sam's 9th birthday, April 2nd, 2014, I will give $9 to St. Baldrick's for each donation made to my page through midnight on Sammy's birthday. In the last week since I offered this incentive there have been 21 donations totalling $749. My contribution of 21 x $9=$189 makes the total for Sam's birthday $938. </i><i>The link is in the upper right-hand corner of this page. There is still time to give.</i></div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com0tag:blogger.com,1999:blog-2428901333554588976.post-9619564121026806342014-02-13T16:01:00.000-08:002014-02-13T16:02:16.551-08:00DirectionsThere are days when I can't budge. I am angry and cranky and the tears come and come until my head hurts, and then they come some more. I weep and I rage and it's not fair to my family. They take the brunt of my outbursts.<br />
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Then there are days when I want to do something. Anything. I don't care what it is. I just want progress.<br />
I will share the fundraiser for the family of the newly diagnosed child because I know what it's like to be there. To be scared. To be full of hope.<br />
I will promote the collection of shoes that are sold to raise money for childhood cancer research.<br />
Blood drive? Sure. I'll help with that.I'll give blood. I'll pass out juice to the donors.<br />
I will buy cookies at the bake sale for childhood cancer research on the folding table down the street put on by the little girls who went to school with my son and miss him on Valentine's day. I do too.<br />
I'll shave my head.<br />
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I'll do anything.<br />
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I am pulled in a million directions and I wonder if I am spread too thin to do any good.<br />
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Kind of like the childhood cancer community.<br />
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I suspect <a href="http://www.jonathanagin.com/huffington-post-.html" target="_blank">Jonathan Agin</a>-lawyer, advocate, bereaved dad, writer-would agree with me. I admire him. First of all, he's smart, he's a lawyer, he's an excellent writer. He and his wife have helped to raise hundreds of thousands of dollars with <a href="http://www.thecurestartsnow.org/" target="_blank">The Cure Starts Now/Race Against the Odds</a>.<br />
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Next to him, I know nothing. I am no one. I am a mother. Sure, I went to college. But I was educated as an elementary school teacher. I don't know how to make medicine, money, and politics work together to find a cure for children's cancers.<br />
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Mr. Agin's been tweeting a lot lately. Cryptically. His <a href="https://twitter.com/jonathanagin" target="_blank">tweets</a> point out problems I already know exist: The childhood cancer community is "insular" and needs to "gain efficacy." Each tweet is part accusation, part open-ended question.<br />
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I don't know the answers. I wait with bated breath for new tweets that will hopefully reveal some sort of mastermind game plan.<br />
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How, Jonathan? Tell us what to do.<br />
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<br />Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-39900745660909157692014-01-23T16:51:00.001-08:002014-01-29T10:39:29.026-08:00It's not all rainbows adorable bald heads<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I should write something. No, not because I think you expect me to. Because I want to. Several times a day I have thought-about Sam, about cancer, about siblings, about grief-and I think, "I should write that down." Writing helps me to process my thoughts and emotions, and I want to share this with you. I don't want to hold anything back. I want you to know how crappy it is live without Sam. I also want to remember. I want you to remember. If we stop thinking, talking, writing about him, then was he ever really here?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It's been almost 2 weeks since I put my thoughts on paper-that's how I used to explain writing to my students. Whether they were in 1st grade or 6th grade, they were always afraid to write. "Don't stress out. It's just thoughts on paper," I would tell them. There's always time later to go back, reread, fix, adjust, perfect. "Just get your ideas out before you forget them."</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Here's one idea spinning in my head today-for the past 6 months, really: Have you ever heard the term, "Rainbow Baby?" I heard it for the first time this past summer, when Sam was on hospice. I stumbled across an on-line magazine, <a href="http://stillstandingmag.com/" target="_blank">Still Standing</a>, full of articles about child/baby/pregnancy loss written by bereaved parents. I was lead there by Angela Miller, of <a href="https://www.facebook.com/pages/A-Bed-For-My-Heart/144059799098261" target="_blank">A Bed For My Heart</a>, author of <a href="http://www.pubslush.com/books/id/859" target="_blank">You Are the Mother of All Mothers</a>. I was comforted by most of the writing. I felt less alone in reading about other parents' experiences. I felt more confident that I would indeed survive the death of my son because these other parents were surviving. Parents said they not only did they survive, but they were thriving even through their grief, and finding joy in the darkness. I held onto that. I still do. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Anyway, back to this idea of a Rainbow Baby. A Rainbow Baby is the baby one has after experiencing pregnancy loss. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Oh. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After Abby and before Sam there was another baby. He died inside of me at 16 weeks. We didn't name him because he was miscarried, not stillborn, and therefore there was no death certificate. But he was. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And then there was Sam. Our miracle baby. Our longed for, wished for, prayed for Rainbow Baby. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Our Rainbow Baby died. I hate that term, Rainbow Baby. I can't be alone in that. What about the moms and dads who are never able to bring a baby into the world alive? I almost can't click on the link in my Facebook newsfeed for Still Standing because of that stupid term (unless the article is by Angela Miller, of course). I can't stand to read about how someone is "expecting a Rainbow Baby," as if everything is going to perfect from now on. Bullshit. I want to sit that glowing pregnant mama down and gently, taking her hands in mine, break the sad news to her. Just because you bring a baby alive into this world, doesn't mean it will always be healthy and alive. Diseases happen. People happen. Freak accidents happen. Be aware that you are vulnerable to child loss for as long as you breathe.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Just this morning a friend (a really good, fierce, prickly on the outside, soft on the inside friend) told me that someone had asked her why she works so hard and spends so much time raising awareness about childhood cancer and organizing fundraisers for childhood cancer research when none of her children are sick. "Why do you care," they asked? She was shocked by this question. What's the answer? Can we only care about something that affects us directly? If that's true, why then do we give to the Red Cross to help hurricane victims when a hurricane hasn't touched our home? Why do we give to the food bank when we are not hungry? Why do we donate coats and blankets when we are not cold? </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I'm sure there are many reasons why we care and therefore give of our time and things and money, but the one reason that stands out to me is that we feel vulnerable. We see ourselves in that parent who can't afford a new, bigger coat for their child this winter. I think we are aware on some level that this could be us. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Childhood cancer is worse than natural or economic disasters. You can't control for it by carefully choosing your place of residence away from regions prone to childhood cancer. You can't avoid it by taking a second job to ensure financial stability to ward off cancer. Cancer doesn't befall children of any particular ethnicity. Cancer doesn't give a shit how much money you make, where you're from, what religion you practice, or how educated you are. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">You care because you are human. I'm not sure if I believe in G-d anymore, but thank G-d for that. If you didn't care things would be awfully lonely for the Jeffers family and all families touched (crushed, unraveled) by cancer. One of the reasons, really the biggest reason, we are surviving this is because of our community-our in-real-life and our virtual community.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">You know what's coming, right? I'm going to ask you for even more help.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Over the summer, I discovered this group, 46 Mommas, that raises money for St. Baldrick's, a childhood cancer foundation that funds grants for research, by shaving their heads at an annual Shave for the Brave event. I knew then that whether Sam survived or not, I would be a part of that group. To shave my head with such a large group I felt would have such a large impact, financially and in raising awareness. Then there's the symbolism of it. For some moms it's solidarity with their child who lost their hair to cancer treatments. But Sam never went bald, so for me it's more about standing before you with nothing to hide.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The shave event is in Boston on July 27th, so there's plenty of time to share this with your friends and family, and plenty of time to save your pennies to make a donation. Please share this link to my fundraising page: <a href="http://www.stbaldricks.org/participants/mypage/668136/2014">http://www.stbaldricks.org/participants/mypage/668136/2014</a>. You can also make a donation by phone: <a href="tel:(888)%C2%A0899%E2%80%912253" x-apple-data-detectors-result="1" x-apple-data-detectors-type="telephone" x-apple-data-detectors="true">(888) 899‑2253</a>. You can even mail a donation to St. Baldrick's: St. Baldrick’s Foundation, 1333 S. Mayflower Avenue, Suite 400, Monrovia, CA 91016. Please include my participant number: 668136.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Even though it's not your child and hopefully never will be your child, please care.</span>Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com7tag:blogger.com,1999:blog-2428901333554588976.post-14390531750731763152014-01-14T21:48:00.000-08:002014-01-14T21:48:20.954-08:00A lemon tree, a roller coaster, and the 5 stages<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">During one of our visits with a hospice counselor soon after Sam died we were told (wisely) to be prepared for a time that would come where we would feel that the rest of the world has moved on, and left us alone in our grief. The cards and gifts would slow down or stop; the visits, the special events, the overt outpouring of love, kindness and understanding would </span><span class="s2">gradually </span><span class="s2">meld with the reality that “life goes on”. At least, that’s how it would </span><span class="s3" style="font-style: italic;">feel</span><span class="s2"> to us, and we likely wouldn't be ready to just “move on” at the </span><span class="s2">rest of the </span><span class="s2">world’s fast pace.</span></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">I think to a certain extent that has happened, although we have such good friends and a kind community that it hasn't been </span><span class="s2">nearly </span><span class="s2">as bad as </span><span class="s2">it could be. </span><span class="s2">From cookies sent from relatives to camaraderie on long hikes, people are still showing us lots of love. And t</span><span class="s2">his past weekend, for example, our temple—Congregation Beth David—planted a lemon tree in Sammy’s honor. It was really nice, 12 weeks after his death, to still see people caring about Sam just as much as us. </span></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">After the lemon tree planting Sabrina and I went to visit Sam’s grave. Sabrina had been back several times, but this was my first time back since the funeral. I </span><span class="s2">had </span><span class="s2">thought about driving out there </span><span class="s2">many</span><span class="s2"> times</span><span class="s2"> </span><span class="s2">in the last 12 weeks </span><span class="s2">but I just couldn't do it. Throughout this grieving process I have found that sometimes I’m an absolute rock, and to an outside observer I probably look cold or heartless because I’m “dealing with the loss of my son so well”. On the other hand, there are times when I am a complete jellyfish, nothing but </span><span class="s2">raw </span><span class="s2">nerves and emotions, and all of them bad</span><span class="s2"> (denial, anger, sad</span><span class="s2">ness</span><span class="s2">, etc.)</span><span class="s2">. </span><span class="s2">Surprisingly</span><span class="s2">, at Sam’s grave, I held it together. I didn't cry or lose it. And I began to think for a moment that maybe I’m at the mystical (mythical?) stage of Acceptance.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5EhOC6Ro5OZwBbTVuTw1YMvCThg0GoOmSgdQa1E_P7SI4G7KtSIYoFCO6wlQIFwLt4twrD6H1Ja9j96RAFYstwcCLGRWcZlEOvJlf6E0wW3VHGIrRlKTFeEOpr2JZq3FMK00Z1UEjYw/s640/blogger-image-1508874240.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5EhOC6Ro5OZwBbTVuTw1YMvCThg0GoOmSgdQa1E_P7SI4G7KtSIYoFCO6wlQIFwLt4twrD6H1Ja9j96RAFYstwcCLGRWcZlEOvJlf6E0wW3VHGIrRlKTFeEOpr2JZq3FMK00Z1UEjYw/s200/blogger-image-1508874240.jpg" width="150" /></a></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s2">But as soon as you start to think about acceptance, you (at least I) get angry again. Angry for </span><span class="s2">the unfairness of an 8-year old’s </span><a href="" name="_GoBack"></a><span class="s2">death and angry for </span><span class="s2">allowing yourself to feel the “pleasure” of acceptance. Guilt for </span><span class="s2">even entertaining the idea of </span><span class="s2">“moving on”. </span><span class="s2">Sadness when </span><span class="s2">it hits you like an iron shovel </span><span class="s2">(for the umpteenth time) that your little boy isn't coming back. </span><span class="s2">And so it goes. Back on the roller coaster of the 5-stages. But with each ride the </span><span class="s2">nausea seems to lessen, the ride gets a little less scary, and </span><span class="s2">the </span><span class="s2">length of time between rides gets a little longer.</span></span></div>
Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com0tag:blogger.com,1999:blog-2428901333554588976.post-17633159900851450132014-01-10T20:57:00.000-08:002014-01-10T20:57:19.589-08:00Broken<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Monday morning I jumped in the car with the teens for a 2-day, 2-school tour. It was the first time I went any further south than Nipomo since we stopped Sam's treatment because it wasn't doing any good (did it ever?). As we approached that invisible hurdle, the tears and quiet sounds I can't describe but feel desperate began to well up. I cried intermittently from Willow Road to Winchester Canyon. Either the teens were too into their books and knitting, or they are used to me sniffling all the time, because neither of them said anything. After the Winchester Canyon exit I snapped to attention, remembering our goal was visiting a college and I didn't know where I was going so I needed a kid to navigate.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We did fine visiting schools. We had the usual. "Sam should be here," and "What would Sam think?" moments (especially as we ate lunch beside a pond that was home to ginormous koi, who I am convinced were capable of leaping out of the water and snapping bits of sandwich and chip out of our hands) but we did okay. We even enjoyed ourselves.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Thursday I finally "forced" Teen the Elder to go to the doctor to have his wrist checked out. We thought he sprained it in late November (He fell. He was running backwards. For fun. Not for fitness.), and 6 weeks later it just didn't seem to be getting any better so our pediatrician sent him for an xray.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2es8jnZ-COYXUvbpGDHoVn5Dxkto1Z7WY4ut-fKtJlDOHJhECue0ulSt4-oviGzA-YU7SYjMA-viVnElnPHPfzpN_pt8daPYnPbhYoVuqAAy4cZUbLeGrmxphyphenhyphengvIwjxq9EvrhiF5uEE/s640/blogger-image-1038069823.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2es8jnZ-COYXUvbpGDHoVn5Dxkto1Z7WY4ut-fKtJlDOHJhECue0ulSt4-oviGzA-YU7SYjMA-viVnElnPHPfzpN_pt8daPYnPbhYoVuqAAy4cZUbLeGrmxphyphenhyphengvIwjxq9EvrhiF5uEE/s320/blogger-image-1038069823.jpg" width="240" /></span></a><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It's broken. Guess where the pediatric orthopaedist's office is? Santa Barbara. Across the street from the hospital and clinic where Sam received most of his treatment. When I heard the address I think I started to hyperventilate.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We made an appointment for next Wednesday so I had plenty of time to dread it for many reasons-How bad is the break? Does he need surgery? Will he be able to play saxophone and piano? When I see the hospital and clinic will I freak out?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Minutes after setting the appointment the receptionist called me back. "We have an opening tomorrow? Can you come down tomorrow?" Of course we can. Less time for anticipating how awful it will feel to be in that neighborhood again. Kids are still on break, so back to Santa Barbara we went.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Getting to that hospital area from Southbound 101 is a bit roundabout. You have to exit the freeway and then get back on northbound for one exit, but I did it once a week for 10 months, so I'm a pro.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I did okay. Yes my heart was pounding. Yes, my breath was fast and shallow. I felt anger. And sadness. And longing. But so much anger.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The big, lovable goof will have surgery on his hand in 10 days. There will be a pin in his scaphoid and he'll be in a cast for 6 weeks. It's possible he'll need a bone graft. He will play saxophone and he will play piano, even with a cast on. He may need physical therapy but he'll be just fine.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And I'm "fine." I'm angry. I'm sad. I don't feel like doing much of anything, but I do as much as I can. The fight continues, and apparently our current weapon of choice is pancakes. Yes, that's right, pancakes. The Lovely Lemonade Ladies are holding a <a href="http://www.alexslemonade.org/mypage/1112436" target="_blank">pancake breakfast and raffle</a> in honor of Sammy. A complete breakfast (pancakes, eggs, sausage, coffee, and juice) is only $5 for adults and $3 for kids! Eat all the pancakes you want! All proceeds will go to <a href="http://www.alexslemonade.org/" target="_blank">Alex's Lemonade Stand Foundation</a>.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Sunday, February 2nd</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">8-11:30</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The Grange</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">370 South 13TH ST</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Grover Beach, CA</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">If you aren't local to Grover Beach, you can get involved by donating to the <a href="http://www.alexslemonade.org/mypage/1112436" target="_blank">event</a>. You can also donate to St. Baldrick's via<a href="http://www.stbaldricks.org/events/mypage/10921/2014/" target="_blank"> #36 Rabbis</a> in honor of Sammy Sommer (son of my friends Michael and Phyllis-see how they're holding up <a href="http://supermansamuel.blogspot.com/" target="_blank">here</a>.). If making a donation is not in your budget right now, then share this information with everyone you know-Facebook, Twitter, email, blog, you could even talk about it in real life!</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The fight also involves getting our government to pay attention. <a href="https://www.facebook.com/yellowandgoldforcole" target="_blank">Tony Stoddard</a> (Cole's Dad) is doing an excellent job at that. You can sign his <a href="https://petitions.whitehouse.gov/petition/display-gold-ribbon-and-or-light-white-house-gold-september-childhood-cancer-awareness-month/qDwkVwSG" target="_blank">petition</a>, and make phone calls (<span style="background-color: white; color: #333333; line-height: 18px;">White House Phone: 202-456-1111. </span></span><span style="background-color: white; color: #333333; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 18px;">Calling Hours – 9:00am to 5:00pm Eastern Standard Time Monday through Friday<span style="font-size: x-small;">)</span></span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">. The focus right now is on getting the White House lit or decorated with gold in September. Good things are happening.</span></div>
<br />Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com1tag:blogger.com,1999:blog-2428901333554588976.post-4932560724827271312013-12-31T19:14:00.001-08:002014-01-29T10:39:50.229-08:00FrozenOr at least I want to be.<br />
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I realize I'm trying to freeze time for myself. I'm helping my surviving children to move forward by supporting their endeavors at school and encouraging Teen the Elder as he applies to colleges and completes the testing the schools require (770 on his Literature and Math 2 SAT subjects tests, and 800 on his Physics SAT subjects test-it's my blog. I can brag if I want to). John has made progress with setting up his home office with my assistance. But me, I'm frozen, content to sit on the couch all day.</div>
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I think I figured out why I don't feel ready to go back to work. I mean besides the crying off and on all day long. Besides the lack of focus and lack of sleep. Besides the angry outbursts. I don't want to go anywhere or do anything. I go for walks. I take care of my family-plan meals for the week, shop, cook, do laundry. But none of that's my life really. </div>
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You see if I go back to work then I'd be moving on with my life, and if I move on with my life then the space between me and Sam will grow. Right now I don't feel too different from the way I felt in the moments after Sam died. And if I stay on the couch and do nothing more mentally taxing than attempt for bazillionth time to beat level 147 on Candy Crush (curse you, Candy Crush!), then it's as if time hasn't passed.</div>
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But time is passing. 11 days after Sam's death we experienced our first Halloween without him. In November we observed John's birthday, Chanukah, and Thanksgiving despite the hole in our family. We've marked one month since he died, then two. We went on our first road trip without him, and ate out for the first time ("Table for 5, please...I mean 4."). In December we went to the movies as a family of 4, and talked about the last time we had been there with Sam. </div>
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At the start of each month I've woken up thinking of Sam and how this is a month he will never see. This is a month in which we will be entirely without him.</div>
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2013 is coming to an end. Sam was here for 2013. We sipped sparkling apple cider at midnight New Foundland time, and hoped 2013 would bring the shrinking or at least stabilization of his tumor. We didn't get what we wanted. One could argue that 2013 has been the absolute, hands-down, worst year of my life. But I don't want it to end.</div>
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With the end of 2013 comes the start of a year Sam will never see; the continuation of a year of firsts we do not celebrate. 2014 propels me into a future without Sam. 2014 pulls me further away from him, but no closer to anything else I can see. <br />
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That's it. There will be no wise conclusion to this post. Don't expect a, "Happy New Year!" from me. I am frozen.</div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com3tag:blogger.com,1999:blog-2428901333554588976.post-59038480800857315412013-12-22T23:58:00.001-08:002013-12-23T00:02:55.699-08:00SleepPeople keep asking me if I am sleeping. I lie and tell them I am. Well, it's not really lying. I do sleep. Maybe not enough. <div><br></div><div>Every night I lie in bed and read until I nod off. My book (or Sam's kindle, or iPad) will fall onto my chest, and startle me into the realization that I am no longer reading but I am, in fact, sleeping. So I set the book (or device) aside, and burrow down under the covers next to my husband, and wait. Pretty much every night without fail my brain springs back to life, and the broken record of Sam's last hours, minutes, and moments begins. </div><div><br></div><div>I tell myself I don't have to do this. I tell myself it's ok not to think about Sam in order to sleep. It doesn't work.</div><div><br></div><div>I search for a memory of the day that's pleasant-like today's paddle board outing-and try to remember every detail, in order, in hopes of distracting myself to sleep. It doesn't work.</div><div><br></div><div>Emptying my mind does not help-that just leaves space for the memory of his labored breathing to take hold.</div><div><br></div><div>Filling my mind with thoughts of the glassy water of the bay and the seals like long-whiskered dogs in the water doesn't do the trick either. I can't stay focused long enough on any one thing to fall asleep. Within seconds the memory of his eyes opening for the first time in hours just before his last breath sneaks in.</div><div><br></div><div>Suddenly I am filled with guilt that in those last hours when his breathing was labored and no amount of morphine would smooth it out, why didn't I just pick him up and hold him? The evening before we had found the perfect position for his comfort, which was reclined against the arm of the couch, and it seemed that every time I moved him in the slightest-to give medicine or ease breathing-I just made things worse. Nothing worked. I guess that's my answer. I didn't pick him up because I was afraid I would make him uncomfortable. So I settled for sitting next to him and holding his hand and talking to him.</div><div><br></div><div>Nothing worked. And there is so much guilt associated with my inability to make his death peaceful.</div><div><br></div><div>Just as in the treatment of his cancer-Nothing worked. And even though it makes no sense, there is also so much guilt around our inability to save him.</div><div><br></div><div>So, to answer the question about sleeping honestly, "Not very well." Nothing works.</div>Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com2tag:blogger.com,1999:blog-2428901333554588976.post-83244527781331303992013-12-15T20:31:00.000-08:002013-12-15T20:31:28.588-08:00How to help the newly bereavedThe death of Superman Sam has had me thinking. Although my own Sam has only been gone 56 days, or maybe because he's only been gone 56 days, I feel like I can offer some advice to those that love and want to support the Sommer family.<br />
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I don't have advice on what to say. I haven't figured that out yet. I do know that it does not help to talk about G-d's plan, heaven, angels, being in a better place, etc. There is nothing you can say that will make them feel better. There is nothing you can say that will make them feel better. Just be with them. Hold hands. Tell them you love them. Say his name.<br />
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Here you go-thoughts on paper (or a screen. Whatever):<br />
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Do not ask, "Is there anything I can do?" "Is there anything you need?" The bereaved parent will likely answer, "No." Unless you can bring the dead back to life or build a time machine, these open-ended questions are not helpful.</div>
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Just offer to do something. Guess at what they might need and offer to do it. Don't say, "Can I...?" Or "When would be a good time for me to...?" A better approach would be to say, " I would like to...(insert helpful thing here). Is...(insert day/time here)a good time?" </div>
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Here's a list of things every family might need at one time or another, depending on where they live or the time of year:</div>
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Laundry</div>
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Shovel snow </div>
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Mow lawn</div>
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Clean bathroom</div>
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Feed and care for pets</div>
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Drive kids to activities</div>
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Buy groceries</div>
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Take out trash<br />
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So you might say, "Phyllis, I would like to come over and do your laundry. Is tomorrow at 10am a good time?" Now she might say, "No thanks," because maybe her mom is there and handling that aspect of running the house. At this point I would suggest that you either offer to do something else right away or that you let her know that you'll check in with her in a few days to make the same offer. </div>
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Here's another way to approach helping-When Sam was on hospice (almost 5 months), I had a few friends who with regularity would text me when they were out shopping. "Hi! I'm at Costco (Trader Joe's, Whole Foods, Albertson's). Do you need anything?" This is a great way to offer help. I would be reluctant to hand someone my whole list, but if we're out of toilet paper or bread or eggs, I can accept this small gesture.<br />
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Offer to visit when visitors might be thinning, like after Shiva. Don't say, "Call me when you're ready for a visit." <i>You </i>call or text and offer. And if they say no, call next week, and the week after, and the week after. And if you call and they don't answer, leave a message. I could not talk to people in the early days, but I did listen to messages. Texting is easier.<br />
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If you are far away and can't be there to help, donate to their <a href="http://www.stbaldricks.org/events/mypage/10921/2014" target="_blank">St. Baldrick's</a> campaign, or the <a href="https://www.kintera.org/AutoGen/Simple/Donor.asp?ievent=53533&en=deKCIJMqGbKCKIPsFkKIKJOpF8LMIYOsHcIJLPMxFoKZG" target="_blank">MACC Fund</a>. Send a card, especially after a few weeks when they stop coming. Use his name-"Sam had the best laugh." It will be appreciated. I promise.<br />
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You know Michael and Phyllis, and so I'm betting you know what they need. Trust your gut.</div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com5tag:blogger.com,1999:blog-2428901333554588976.post-74560041268295668112013-12-15T10:50:00.001-08:002013-12-15T12:30:34.017-08:00Small plans and lowered expectationsI've been sitting in this spot on the couch since 7am. It's almost 10:30am. It's Sunday, so if you're lucky enough to have a day off and have no plans, which occasionally happens to most of us, you could get away with this. This doing nothing.<br />
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Thing is, I did the same thing yesterday. Yesterday I folded half of the clothes in a laundry basket that's been sitting here since Friday night. I'm still in pjs. I haven't brushed my teeth. I do have plans. They're not big. I keep them small on purpose-being gentle with myself: Finish folding the laundry, get dressed (no shower), brush my teeth, read a book, go for a walk, do some yoga, bake granola bars (a pre-cancer Sunday ritual I'm trying to bring back), cook dinner (what's the point, without my Sam?).</div>
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I've become fairly comfortable with these small, daily goals. I feel downright accomplished when I complete the small tasks I set out for myself. It's a good day if everyone has food to eat, clothes to wear and teens get to school and get back home again.</div>
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On Friday I learned that the committee at my place of employment denied my request for another month of catastrophic leave. Back in July or August my advocates with HR and the school board felt there would be no problem with me sitting out this entire school year on catastrophic leave. Sam's terminal illness and death are a catastrophe. He is dead and I have lost my bearings and my remaining children and my husband are also spinning, helplessly. It seemed reasonable that I take this year to try and piece us back together in some semblance of family-this new, fractured unit of four. </div>
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Officially my leave ended on Tuesday. So in the vision of this committee I should've gone to work this week. Right now, if I were working tomorrow, I would be in my classroom prepping for the week. Instead I am on the couch. According to the committee I am ready to take responsibility for the education of 30 young people. Per the committee I am ready to drop the teens at school, manage a classroom of 30 Sam's for 6 hours, work until 5 or 6 planning the next day, and come home to what? Last week one of the teens cried every day after school over the stress of grieving, keeping up, and catching up. Last week one of the teens left the house in a fit of grieving anger and I drove around the neighborhood looking for that one to offer comfort and a ride home. When I think about returning to work I mostly think of the cost to the teens and John. I haven't even begun to think about how I am yet. How will I be around children Sam's age? Will I be constantly distracted with thoughts like-"He should be here."? Will I be irritable? Cranky? Unfocused? I can't concentrate long enough to read a book or fold a load of laundry. What kind of teacher will I be?</div>
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I think I'd be a pretty crappy teacher if I went back to work right now. I think I wouldn't want my kid in my class. HR is on my side. So is the board. They want to offer me administrative leave. It's the best they can do. It means I have to prove my unfitness for work right now (prove that 56 days after Sam's death I am still grieving too hard to work?) It also means that the sub in my room will be paid out of my salary. These are rather large inconveniences that I (and my family) are prepared to accept if they allow me to stay home to continue this imperfect reassembling of my family.</div>
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And just in case anyone is still actually with me and reading, sweet Superman Sam died yesterday. He was 8. Here's a link to his mom's blog. <a href="http://supermansamuel.blogspot.com/2013/12/what-im-missing.html?m=1" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://supermansamuel.blogspot.com/2013/12/what-im-missing.html?m=1</a></div>
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Sabrinahttp://www.blogger.com/profile/01605977030017818374noreply@blogger.com5