tag:blogger.com,1999:blog-365640242024-03-12T21:05:52.027-05:00HansJourneythrough Neuroblastoma and Relapsed NeuroblastomaHans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.comBlogger977125tag:blogger.com,1999:blog-36564024.post-39005216104532543452016-09-21T10:10:00.004-05:002016-09-21T10:10:55.568-05:00Four YearsWe feel the loss like a flood that moves in on September 21st. We remember the pain, the struggle, the fight. We mourn what could have been. Hans you were one beloved little boy and you are so missed. if only... Until we see you again.<br />
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Until then we are going to give this life everything we've got and honor you and fight for kids in your situation in every way that we can. I'm so proud of your sister and your dad and all our family and friends in the way they've supported us and all of our ideas from bake sales to runs, walks, triathlons, pajama drives and whatever else comes our way.<br />
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This past weekend Team Hans completed the Nautica Malibu Triathlon as a 20 person Team, part of a larger group of 9 families affected by pediatric cancers, Sophia's Buddies. This fundraising event raised1.3 million for Pediatric Cancer Research at CHLA, and our Sophia's Buddies raised 96,000 of those funds. I'm so proud of Team Hans for bringing in a total of $22,681. It costs $25,000 to put one child through one clinical trial. We've just about got one kiddo covered with our Team Hans Tri. So proud. <br />
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Team Hans Nautica Malibu Tri 2016, less Mark, Mike, Don, Tracy and Jenny (It is a challenge to get everyone in one spot at one time on race day, there are at least 3000 people on the beach and everyone's event starts at different times...) Thank you Team Hans!Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com2tag:blogger.com,1999:blog-36564024.post-31964182340839822512016-07-15T18:37:00.001-05:002016-09-15T08:32:33.828-05:00Hans' BirthdayOur beautiful boy would be a teenager. Hans would have been 13 years old today. I wonder what kind of a kid would he have grown into. Would he have been a gamer? a surfer a skater? a soccer or a guitar player? Would he have done his school work? I know he would have been sooo smart, I know he would have been sooooo into whatever he was into! How tall would he be? Would his hair have gotten much darker? Would he wear it long or keep it short?<br />
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We all wish like crazy that we could keep him with us. I can't even imagine what his friends would be like now, or all the silly inside jokes he and Elle would have about us! Of course he left a wide wake.<br />
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However, we will always carry him with us, and bring him along wherever we go and no matter what we do. We'll love and cherish him all the rest of our lives. And we know that each day that passes brings us closer to him. <br />
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We are celebrating all that was so special about you today, Hans. <br />
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<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-67880112278201936782016-06-08T18:25:00.002-05:002016-06-08T18:26:36.945-05:00Fundraising Event for the Year<div style="color: #1d2129; font-family: 'San Francisco', -apple-system, BlinkMacSystemFont, '.SFNSText-Regular', sans-serif; font-size: 14px; letter-spacing: -0.23999999463558197px; margin-bottom: 6px;">
Dear Friends and Family, </div>
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Each year <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1265889855" href="https://www.facebook.com/kevin.weberling" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration: none;">Kevin</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100003555795221" href="https://www.facebook.com/ellie.weberling" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration: none;">Ellie</a> and I choose an event to support to raise money for pediatric cancer research in honor and memory of our one and only beloved boy, Hans. Hans battled the pediatric cancer Neuroblastoma from the ages of 3 to 9 and ultimately succumbed to the disease in 2012. He was a champion and a love, he was funny and demanding, he was crazy smart with a photographic memory, intense focus and incredible attention span. There is no telling <span class="text_exposed_show" style="display: inline; font-family: inherit;">what he could have contributed in this world… We miss him every moment, and his fight and his light guide us toward joy and meaning, every day. </span></div>
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This year, like last year, we are asking for your support in our Sophia's Buddies Team Hans Nautica Malibu Triathlon, in partnership with the Cancer Center at Children’s Hospital Los Angeles. Hans was treated at CHLA, and we maintain a relationship with the Neuroblastoma team there. We work together to bring families together for community, support, education and action. We are proud to help contribute to the groundbreaking research efforts that are coming out of CHLA.</div>
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This year, Team Hans has grown, and there will be a total of 22 athletes competing with us in Malibu this Fall. It’s great to feel this support, and I’m thankful for each of the athletes that has signed up along with us! To me, there is a child-like joy in training for a triathlon. Running, riding your bike, and swimming take you back to the carefree days of childhood when you just wanted to run around and play outside. It’s meaningful when you are running around in memory and honor of the children who are no longer here to do so. </div>
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Thanks for your tax-deductible contribution in any amount. We are grateful for your support.</div>
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With Love, </div>
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Lara, Kevin and Elle</div>
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<a href="http://nauticamalibutri2016.kintera.org/faf/donorReg/donorPledge.asp?ievent=1155260&supid=419810648" target="_blank">Click here to support Lara's Page</a><br />
<a href="http://nauticamalibutri2016.kintera.org/faf/donorReg/donorPledge.asp?ievent=1155260&lis=1&kntae1155260=A36D9C4B722D4475813072648611DA46&supId=419810741" target="_blank">And click here to support Kevin's Page</a><br />
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-88300496822797986482016-01-15T10:54:00.005-06:002016-01-15T10:54:50.327-06:009th annual Houston Valentines Day Bake Sale!<div class="separator" style="clear: both; text-align: center;">
I want to share the date of our next TCH Bake Sale! Save the date and bake, work or shop the bake sale on Friday 2/12 at TCH.</div>
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This is exciting to me, as it marks the 9th consecutive year of the Bake Sale! It all started on Valentines Day of 2008. It's come a long way - it's been tricky to track exact figures, with three different "presidents" of the Bake Sale over the years, but I'm sure we've exceeded $50,000! </div>
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Thank you to Charon, Blair, Kim and Julie for organizing the Bake Sale and keeping it going after I had to pass the baton when we moved to California.</div>
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Thanks to everyone who has baked, worked and shopped over all these years at more than 20 Bake Sales - a legacy of love and commitment!</div>
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<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-77363100210988760082015-12-22T23:28:00.000-06:002015-12-22T23:55:52.286-06:00Little GiftsEvery now and then we get a little gift. Some one shares with us a connection or an inspiration they got from Hans that we were unaware of. I got this email today. The back story is that this guy, Mike, sold us our solar panels for our home in November 2012, just 2 months after we lost Hans. I had actually tried to get the panels installed several months earlier and Hans had been a part of the whole process, but the company we were working with fell apart and the deal fell through.<br />
I got a cold call several months later from a competitor. The call came in just after we'd returned home from our trip to Texas for Hans's memorial run. I'd have never hung in there through this process had the rep not been extremely sensitive and professional. Mike found the link for Hans' blog in my email signature and independently found out about Hans's story and made a contribution to NB research on Hans' CNCF parks page. I was touched by this, and opened up about Hans. I guess I must have sent a prayer card in a thank you note. I shared with him that Hans had been super excited going solar and saving money and being efficient (more money for Legos and transformers and tasty treats!) We also had an ongoing I-Spy solar panels game. Hans spotted solar panels on rooftops and businesses way faster than I did, and he'd literally squeal with delight when he found them. Pretty cool to learn that his story continues to motivate our sales rep, Mike! <br />
Thankful that he shared this little holiday gift with us!<br />
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Years ago when I first entered the solar industry with Verengo I was the rep who set you up for solar for your home.</div>
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When I left Verengo I lost your contact information, but found it in Sunruns database.<br />
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I hope you and your family are doing well this holiday season and that the solar system continues to save you money!</div>
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Han's prayer card is that my desk and his excitement for solar motivates me every day. </div>
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com2tag:blogger.com,1999:blog-36564024.post-60282800784055395582015-11-14T19:20:00.000-06:002015-11-15T15:52:09.688-06:00Pretty cool week of being Hans' mom<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">Capitol Building at night - under construction!</span><br />
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<span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">Over the past week I've been involved in two separate and incredible experiences as a Neuroblastoma mom. Unfortunately, confidentiality restrictions keep me from going into much detail, but each experience provides me with hope f</span><span style="background-color: rgba(255, 255, 255, 0); color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">or our children and </span><span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">for the future of Neuroblastoma research and treatment.</span><br />
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A few months ago I was nominated to be a 'consumer reviewer' panel member for a national grant funding review committee. I represented the Neuroblastoma parent perspective on a panel of NB researchers and scientists. I challenged myself to carefully read and review each of the grant applications and provide feedback according to guidelines provided. The research proposals were varied and exciting. <span style="background-color: rgba(255, 255, 255, 0);"> The review took place last week over a long conference call through which I was reunited with one of Hans' most beloved doctors. </span>I took this role as seriously as I could. I hope I was able to give adequate service to Hans and his compadres. I curiously await the final funding decisions.</div>
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I also had the unique opportunity to travel to DC to participate in a pediatric cancer related focus group. Again, confidentiality restrictions keep me from being able to go into much detail, but I can share that parents were brought together by a third party with the intent of doing better for our children. It's always empowering when you bring families together with a single focus. I believe that as a group our objectives were met! Again, it will be exciting to pay attention to the outcome of group.</div>
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For fun, my friend Sally was able to tag along with me and we squeezed in some sightseeing and great dining. It was a treat to have an unexpected bonus girls trip to the nation's capitol.</div>
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I am humbled and honored to have been able to participate in each of these projects. When such opportunities come along, I do the best I am able to serve and honor these precious children of ours. </div>
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com4tag:blogger.com,1999:blog-36564024.post-53106019045531364622015-10-16T15:56:00.001-05:002015-10-16T16:00:40.526-05:00The Camino de SantiagoI haven't posted about it here yet somehow but for the past two summers Kevin and Elle and I have hiked the Camino de Santiago - a 500 mile pilgrimage, also known as The Way of Saint James, across northern Spain. Some say it has a special energy as it follows directly under the Milky Way. I can certainly say I felt Hans presence there more keenly than anywhere else. I will have to write more about that experience!<br />
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But, I thought I'd share that I typed up a general tip book encouraging others to get out and hike the Camino. I self-published it on Amazon.com this week! It was an exciting process, but definitely a learning curve. I thought I'd share the link here:<br />
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<a href="http://www.amazon.com/dp/B016OWNJ8C/ref=cm_sw_r_fa_doce" target="_blank">All You Really Need to Know to Hike the Camino de Santiago: Tips to Help you Plan For, Prepare For, and Hike Your First Camino</a> by Lara Cady Weberling It's available on Amazon Kindle (there is a Kindle app if you don't own a Kindle...)<br />
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Hans was with us every step of The Way.<br />
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-58409696945511381252015-10-01T18:17:00.001-05:002015-10-01T18:25:28.732-05:00Pediatric Cancer Awareness MonthSo, I'm a day late and a dollar short on this one, but I figure I should go ahead and post anyway. Cancer Support Community blog reached out to me and asked if I would write a guest blog post in honor of pediatric cancer awareness month. I was happy to! They ran a final version with two parents perspective just a couple of days ago, so I wanted to wait and let them get the post up first. You can see the post here: <a href="http://blog.cancersupportcommunity.org/2015/09/29/when-your-child-gets-cancer-a-parents-perspective/" target="_blank">Cancer Support Community Blog</a> It was nice to be asked to share our experience! I am posting my original version below:<br />
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<span style="font-family: "Times New Roman"; font-size: 14.0pt; mso-bidi-font-weight: bold;">Pediatric Cancer Awareness Month<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman"; font-size: 14.0pt;">You
may already be aware that September is Pediatric Cancer Awareness Month. I
couldn’t be more aware, despite the fact that I’d much rather be blissfully
unaware.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">September</i> has been everything awful about pediatric cancer to our
family. Our son Hans' first symptom popped up in <i style="mso-bidi-font-style: normal;">September</i> of 2006.<span style="mso-spacerun: yes;"> </span>He was
just three years old when he woke up one morning with a small bruise on his
left testicle.<span style="mso-spacerun: yes;"> </span>It would take a full
month for this and other symptoms to lead to his fateful diagnosis:<span style="mso-spacerun: yes;"> </span>Stage IV, High Risk Neuroblastoma. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .5in;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;">Over
the course of his six-year battle with Neuroblastoma, each <i style="mso-bidi-font-style: normal;">September</i> was a difficult time.<span style="mso-spacerun: yes;">
</span>Hans never got to have the typical "Back to School" experience.
It was a heart breaking balancing act of deciding whether to start
school or hold back, whether to bring a teacher to the house or send him into a
classroom. <span style="mso-spacerun: yes;"> </span>Theses choices were made
challenging due to the nature of Hans’ aggressive cancer and the multiple
treatment methods and clinical trials we had to employ to combat it, along with
their unpredictable and sometimes dangerous side effects. Like many kids
battling cancer, Hans never complained about his lot or the concessions he had
to make. But for me,<i style="mso-bidi-font-style: normal;"> September</i> was a
showcase for the difficulties children with pediatric cancers face.
I grieved for Hans and his struggles each <i style="mso-bidi-font-style: normal;">September</i>, as well as each of his young friends who had lost their
battles and who wouldn't be going back to the classroom - so many empty spots
on the bus. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .5in;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;">Ultimately,
after a six-year battle, we would lose our Hans to his cancer on <i style="mso-bidi-font-style: normal;">September</i> 21, 2012 at the age of nine.
<span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .5in;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;">Before
Hans was diagnosed, aside from a few St. Jude’s ads and billboards, we knew
little about pediatric cancer.<span style="mso-spacerun: yes;"> </span>An awareness
month is an excellent vehicle for sharing some of the most important facts
about pediatric cancers.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: .25in; mso-add-space: auto; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; text-align: justify; text-autospace: none; text-indent: -.25in; text-justify: inter-ideograph;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 14.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: "Times New Roman"; font-size: 14.0pt;">Pediatric cancers can
happen to any child, as if out of the blue. Little is know about the causes of
most pediatric cancers and they tend not to be hereditary. Unlike with adult
cancers, there are few tests for screening and early detection. </span><a href="http://www.cancer.org/cancer/cancerinchildren/detailedguide/cancer-in-children-finding-childhood-cancers-early"><span style="font-family: "Times New Roman"; font-size: 14.0pt;">Cancer.org</span></a><span style="font-family: "Times New Roman"; font-size: 14.0pt;"><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .25in; mso-add-space: auto; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; text-autospace: none; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 14.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Times New Roman"; font-size: 14.0pt;">43
children are diagnosed with cancer each day and approximately 15,700 kids will
be diagnosed in the U.S. each year.<span style="mso-spacerun: yes;"> </span></span><a href="http://curesearch.org/Childhood-Cancer-Statistics"><span style="font-family: "Times New Roman"; font-size: 14.0pt;">CureSearch</span></a><span style="font-family: "Times New Roman"; font-size: 14.0pt;"> <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .25in; mso-add-space: auto; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; text-autospace: none; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 14.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Times New Roman"; font-size: 14.0pt;">Pediatric
cancers are the number one disease killers of our children.<span style="mso-spacerun: yes;"> </span>More U.S. children die of pediatric cancer
than of any other disease/illness. </span><a href="http://www.stbaldricks.org/about-childhood-cancer"><span style="font-family: "Times New Roman"; font-size: 14.0pt;">St. Baldrick’s</span></a><span style="font-family: "Times New Roman"; font-size: 14.0pt;"><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: .25in; mso-add-space: auto; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; text-autospace: none; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 14.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Times New Roman"; font-size: 14.0pt;">Children’s
cancers are far less prevalent than adult cancers and so they receive much less
in research funding. Just 4% of the NIH cancer budget and just 1.4% of the
American Cancer Society’s budget goes toward pediatric cancer research. <span style="mso-spacerun: yes;"> </span>People Against Childhood Cancer </span><a href="http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go"><span style="font-family: "Times New Roman"; font-size: 14.0pt;">PAC2</span></a><span style="font-family: "Times New Roman"; font-size: 14.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .25in;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;">Facts
and figures aside, a pediatric cancer diagnosis can be brutally devastating, not
just for the child, but for the entire family.<span style="mso-spacerun: yes;">
</span>When your child is diagnosed, your relationship with your community of
origin is forever altered.<span style="mso-spacerun: yes;"> </span>Friends and
families members may do their best to support you, but you will undoubtedly be
challenged by dark feelings of fear and isolation.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none; text-indent: .25in;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>When your child is in treatment for a
pediatric cancer, your life becomes unpredictable and out of control.<span style="mso-spacerun: yes;"> </span>Symptoms like pain and fever can have you
racing off to the clinic or ER at all hours of the day and night. Your singular
priority becomes the basic care and survival of your child.<span style="mso-spacerun: yes;"> </span>And as a parent in charge of his/her care you
have to use every tool in your personal tool kit to ensure your child’s best
possible outcome.<span style="mso-spacerun: yes;"> </span>You will be
hyper-vigilante and on call 24 hours a day 7 days a week. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>The only way to get through it is with a
lot of help and support. It can be the most humbling part of being human to ask
someone for something that you think should be obvious. But you have to be sure
to ask your friends and family for what you need. Tell a friend, “we need you
to come down and see us at the hospital, we start to feel all alone in
here.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>If at all possible, connect with other
families facing the same or similar diagnoses and make connections. You can
build a profound sense of community with families “in the same boat” as you,
and it will make you feel less isolated.<span style="mso-spacerun: yes;">
</span>As Anne Lamott writes in </span><a href="https://www.goodreads.com/book/show/18079659-stitches"><span style="font-family: "Times New Roman"; font-size: 14.0pt;">Stitches</span></a><span style="font-family: "Times New Roman"; font-size: 14.0pt;">,<span style="mso-spacerun: yes;"> </span>[we humans] are “social tribal, musical animals,
walking percussion instruments.” <span style="mso-spacerun: yes;"> </span>We
function better when we feel like part of a group.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: "Times New Roman"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>Together, we can join forces and turn
awareness in action. After absorbing the impact of initial diagnosis and
getting our bearings, many families find a little bit of solace and meaning in
banding together and fighting back.<span style="mso-spacerun: yes;"> </span>We
can work together and enlist the support of others that love us, to promote
awareness, which spurs donations and funding for research and ultimately
cures.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span></span><span style="font-family: "Times New Roman"; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>As
for me, as difficult as it sometimes is, I tend to say “Yes” to almost every
opportunity I have to honor my beautiful son and his valiant fight again
Neuroblastoma.<span style="mso-spacerun: yes;"> </span>Throughout the year, but
most profoundly, each <i style="mso-bidi-font-style: normal;">September</i> it is
with great pride that<i style="mso-bidi-font-style: normal;"> </i>I remember
Hans’ bravery, his great love, his beauty, and the zen-like state he could tap
into when he needed to get through difficult procedures or bouts of pain.<span style="mso-spacerun: yes;"> </span>I am moved by the resilience of children
fighting pediatric cancers, and of the ability of their families to endure and
persevere.<span style="mso-spacerun: yes;"> </span>And I know that there is
great power in what we can do when we come together. <o:p></o:p></span></div>
Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com1tag:blogger.com,1999:blog-36564024.post-39869813726495919062015-09-21T21:12:00.000-05:002015-09-21T21:13:54.334-05:00Three years ago todayToday marks three years since we had Hans here physically with us. I can't stop thinking about about his beauty, his bravery, his great love, his humor, and his zen-like ability to get through really difficult stuff. He was amazing. Oh, what we would have done to keep him, but, somehow, his work here was done...<br />
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We marked this anniversary in an amazing way. We joined forces with nine other pedi cancer families through our friends Sandra and Jim and their Sophia's Buddies triathlon team. Truly, Sandra did a perfect job of honoring each of the nine children while at the same time bringing us all together. As a group, 88 of us came together to participate in the Nautica Malibu Triathlon. We had four members of our Team Hans this year. One relay with our neighbor Don swimming, Kevin biking and Elle running. And I did the individual event - all three (half mile swim in the open ocean, 19 mile bike ride along Highway 1 and a 4 mile run.) It was an incredible day! Together we raised over $53,000 for pedi cancer research at CHLA. Thanks everyone for your support!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSAi6TKhQER1lN-wpYGBiBMtyH-oTKZaQLtApILXwx8gak0fDXyVpj9Q8RhzUVndKETL5sHtJsVnuW7svvrlas4qEER0DVcwLHbK12TEkzpGpxQFQDD-yPMcGk9r-MZT3srgtp/s1600/12009543_10153646598689637_8153894680666381239_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="305" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSAi6TKhQER1lN-wpYGBiBMtyH-oTKZaQLtApILXwx8gak0fDXyVpj9Q8RhzUVndKETL5sHtJsVnuW7svvrlas4qEER0DVcwLHbK12TEkzpGpxQFQDD-yPMcGk9r-MZT3srgtp/s320/12009543_10153646598689637_8153894680666381239_n.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSNTYG5S5gL2Hpr__w9HYZw_kExGMv26mocIJuLc7qee0iQoNvxapHmzzJBHH7is5n4oaDX0JPBYqU4unVC4DnWpFhlBeQrmdDJOBtysQN2n9gt_d4DOFEqFnA3j-0KTimqP3z/s1600/12004820_10153650508864637_5110025565342047889_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSNTYG5S5gL2Hpr__w9HYZw_kExGMv26mocIJuLc7qee0iQoNvxapHmzzJBHH7is5n4oaDX0JPBYqU4unVC4DnWpFhlBeQrmdDJOBtysQN2n9gt_d4DOFEqFnA3j-0KTimqP3z/s320/12004820_10153650508864637_5110025565342047889_n.jpg" width="320" /></a></div>
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For me, the swim was difficult and a little uncomfortable. I felt more like I was in a washing machine than I was really racing anyone. The bike was awesome (I was in my wheelhouse on my road bike), and the run was hot and it seemed like everyone was moving just as slowly as I was. All through the race and all through the training building up to it, I just kept thinking - this is nothing. This is nothing compared to what Hans and all the other children with life-threatning illnesses and injuries have to do to survive on a day-in day-out basis. <br />
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I am sure that Hans would be proud to be featured on Sandra's pal Debbie Foreman's Lamborghini #Batventador. Debbie is dedicated to raising awareness and funds for pediatric cancer research and this year she wrapped her car to support Sophia's Buddies!<br />
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Meanwhile, back in The Woodlands, Carmen and pals organized another Team Hans pathway pick up on Sunday morning. Thanks to everyone for your support all around. Here is the crew pitching in. We love to feel the love. It's good to do a little good. Thank you all who were such good friends to Hans. As I have said before, Hans' journey was fraught with many challenges, and yet charmed by many miracles. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuTiDmfKsSt9VwdifqlqfmpzH_Uda4NRoKCEmm2Q9hrBt7NzkKOZM3AlZ2L9ZPzRfkSCw9mPoNNcCxaaEvPI85DH7MMMV6ryUq_Z_Xkr81z6KEDF4vNewUNnkv4hnbWndrdFFE/s1600/11052868_10207989933292478_7664108380386080764_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuTiDmfKsSt9VwdifqlqfmpzH_Uda4NRoKCEmm2Q9hrBt7NzkKOZM3AlZ2L9ZPzRfkSCw9mPoNNcCxaaEvPI85DH7MMMV6ryUq_Z_Xkr81z6KEDF4vNewUNnkv4hnbWndrdFFE/s320/11052868_10207989933292478_7664108380386080764_n.jpg" width="320" /></a></div>
<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-82375611453042816352015-08-22T13:26:00.003-05:002015-08-22T18:21:32.605-05:00Swim, Bike, Run - Anything for Hans!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHcZjD-wmUCcDZwfBzKsJEC-6wBXe6S2yH0Y5iKcGhJE3m4NOE2dRl0lxjR44Ds5c1S4VWvDkLI4sdN4zI8QCyVZIUJRfC_bgfRy2lu9IhVNLSLXHZaZbD-GS5hF4SAdlnh-k3/s1600/IMG_3910.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHcZjD-wmUCcDZwfBzKsJEC-6wBXe6S2yH0Y5iKcGhJE3m4NOE2dRl0lxjR44Ds5c1S4VWvDkLI4sdN4zI8QCyVZIUJRfC_bgfRy2lu9IhVNLSLXHZaZbD-GS5hF4SAdlnh-k3/s320/IMG_3910.JPG" width="320" /></a></div>
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<span style="color: #444444; font-family: Calibri, sans-serif; font-size: 15px; line-height: 15px;">As a family, we choose a research fundraiser to support each year in Hans' honor. This September, we will mark the third year without him here with us, and we will recognize Pediatric Cancer Awareness Month and support Children's Hospital Los Angeles Pediatric Cancer Research by participating in the Nautical Malibu Triathlon on 9/20/15. We lost him on 9/21/12, after a six year battle against neuroblastoma. </span><br />
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Hans' story was featured by the Nautical Malibu Triathlon event sponsors this week, please read below.</div>
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You can click on any one of these links to support Team Hans.</div>
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Lara's Weberling's Page (Lara is completing the whole thing: swim 1/2 mile open water swim at Mailbu, bike 18 mile ride along highway 1, and run 4 mile loop along highway 1) </div>
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<a href="http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810648" style="color: #0068cf; cursor: pointer; line-height: 21.299999237060547px; word-wrap: break-word;" target="_blank">http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810648</a></div>
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Kevin Weberling (biking in a relay team along with our neighbor Don)</div>
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<a href="http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810741" style="color: #0068cf; cursor: pointer; line-height: 21.299999237060547px; word-wrap: break-word;" target="_blank">http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810741</a></div>
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Elle Weberling (running in a relay team along with our neighbor Don)</div>
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<a href="http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810802" style="color: #0068cf; cursor: pointer; line-height: 21.299999237060547px; word-wrap: break-word;" target="_blank">http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810802</a></div>
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Don Nelson - (swimming in a relay team along with Kevin and Elle)</div>
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<a href="http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810904" style="color: #0068cf; cursor: pointer; line-height: 21.299999237060547px; word-wrap: break-word;" target="_blank">http://nauticamalibutri2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129339&lis=1&kntae1129339=3E1E53CD05774422838FE337C5B052F3&supId=419810904</a></div>
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<tr><td class="ecxmcnTextContent" style="color: #606060; font-family: Helvetica; font-size: 15px; line-height: 22.5px; padding: 9px 18px;" valign="top"><h1 style="font-size: 40px; letter-spacing: -1px; line-height: 50px; margin: 0px 0px 5px; padding: 0px;">
<span style="font-size: 24px; line-height: 24px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;"><span style="color: #ff9900;">Anything for Hans</span></span></span></h1>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;"><img align="left" height="147" src="https://gallery.mailchimp.com/2df32e038a3c32e2f0f14d435/images/3b4fa97e-3bad-4598-b4c1-014a69389e75.jpg" style="border: 0px; height: auto !important; line-height: 19.8799991607666px; width: 200px;" width="200" /></span></span></h3>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">As parents, we’d do anything for our children. Nine<br style="line-height: 19.8799991607666px;" />years ago, in 2006, we found out our precious and<br style="line-height: 19.8799991607666px;" />mischievous three-year-old was fighting a deadly<br style="line-height: 19.8799991607666px;" />childhood cancer, Stage IV High Risk</span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">Neuroblastoma.<br style="line-height: 19.8799991607666px;" /><br style="line-height: 19.8799991607666px;" />Kevin and I would have done anything to change </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">places with him and take on that battle ourselves </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">so he didn’t have to.<br style="line-height: 19.8799991607666px;" /><br style="line-height: 19.8799991607666px;" />The choice was not ours to make, and we had to stand by and watch our beautiful </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">son wage a battle against one of modern medicine’s remaining enigmas.<br style="line-height: 19.8799991607666px;" /><br style="line-height: 19.8799991607666px;" />We did everything we knew to do for him, circled the wagons, hit the books, and </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">gratefully channeled the love and support that poured out for him into the most </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">h</span></span><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">opeful treatments we could find.</span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">Neuroblastoma is a tricky cancer to treat, because it has often advanced to Stage IV </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">and metastasized before it is diagnosed. It can run a very different course in each </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">child. Hans’ Neuroblastoma would become a zombie; attacking our boy in a slow, relentless pursuit. And Hans would fight it like a tiny gladiator for six long years.<br style="line-height: 19.8799991607666px;" /><br style="line-height: 19.8799991607666px;" />In that time frame, Hans received treatments across the country from four different children’s hospitals, he enrolled in multiple clinical trials, he never spent a day off </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">treatment since his diagnosis, and due to the harshness of his treatments and their</span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;"> side effects, he never spent a month straight in a classroom.</span></span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">It was moving and powerful to see Hans get through what he had to - to put everything </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">he had into fighting for his life. It was beautiful to see the childlike way he appreciated </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">the life that he fought so hard to live.<br style="line-height: 19.8799991607666px;" /><br style="line-height: 19.8799991607666px;" />He just wanted to get his treatments done so he could be at home, with his loving </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">f</span></span><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">amily and his attentive pets, with his toys and projects and comforts and favorite </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">games and movies and shows. He just wanted to swim and play and ride his bike. </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">He just wanted to be surrounded by his favorite foods and graze all day long. He </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">just wanted to love his family and his friends and animals and get just absolutely the</span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;"> most of it that he could. It was amazing and inspiring to witness what he had to go </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">through to live that little boy’s life. The gift of Hans’ love was pure and unconditional. </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">It was a gift that will last a lifetime and beyond. It will last forever.</span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">Since he was diagnosed we’d have done anything. If a cure were to be found at the </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">bottom of the ocean or the top of Mount Everest, we would have figured out how to </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">get there. Since we lost Hans we’d do anything to honor his life. We’ve joined forces </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">with other parents in a number of ways to bring awareness, community and education around this disease.</span></span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">We’ve served on advisory councils, boards and committees to help give a voice for the child’s experience in hospitals and clinical trials. Together with Hans’ friends and family, and other children battling Neuroblastoma, we’ve helped raise hundreds of thousands </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">of dollars in donations for Neuroblastoma research through multiple fundraising efforts </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">over the past nine years.</span></span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">When Sophia’s mom, Sandra, asked us if we would like to join Sophia’s Buddies and </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">put in a Team Hans for the CHLA Malibu Nautica Triathlon, the answer was always </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">Yes. Anything for Hans. This year, the triathlon will take place just one day before the </span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">t</span></span><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">hird anniversary of us losing our beloved boy on September 21, 2012. Kevin and I, </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">our sixteen year old daughter Elle, and our neighbor Don (whose son Keir beat </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">Leukemia at CHLA about 15 years ago) will swim, bike and run in Hans’ honor on </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">Sept. 20th. I’m going to the do the whole event (at my pace) and Don, Kevin and Elle</span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;"> are going to do the Swim, Bike, Run relay. We wouldn’t be anywhere else. Funds </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">raised will go to CHLA pediatric cancer research so that in the future, other children </span><br />
<span style="font-family: arial, 'helvetica neue', helvetica, sans-serif; font-size: 14px; line-height: 14px;">might not have to fight quite so hard.</span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;"><br style="line-height: 19.8799991607666px;" /></span></span></div>
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<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;">Thank you so much for SWIMMING, BIKING and RUNNING</span></span><br />
<span style="font-size: 14px; line-height: 14px;"><span style="font-family: arial, 'helvetica neue', helvetica, sans-serif;"> for pediatric cancer research!!</span></span></div>
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com2tag:blogger.com,1999:blog-36564024.post-71451876889334503432015-03-10T21:22:00.003-05:002015-03-12T00:30:35.238-05:00Treatment News!<h1 class="h-biggest" style="color: #222222; font-family: arial, helvetica, clean, sans-serif; font-size: 35px; line-height: 1.2; margin: 0px 0px 10px; padding: 0px;">
<a href="http://health.usnews.com/health-news/articles/2015/03/10/unituxin-approved-for-deadly-pediatric-cancer" target="_blank">Unituxin Approved for Deadly Pediatric Cancer</a></h1>
<br />
Today the FDA approved Unituxin from United Therapeutics to be used in front line therapy for Neuroblastoma. The addition of immunotherapy to front line treatment for kids with neuroblastoma dramatically improves survival stats for these kids. Now kids with Stage IV high risk NB have a 63% survival shot. This drug has been in the pipeline for a long time, but not long enough for Hans to benefit from it. A clinical trial in 2010 showed strong evidence for using immunotherapy in addition to standard therapy vs. just standard therapy alone - (chemotherapy, surgery, radiation and stem cell transplant - the most brutal cancer treatment protocol know to man, as it was). It's amazing to see these changes in just the time since Hans was diagnosed, about 8.5 years ago. We still have a long way to go, but it's good to celebrate the good news!!<br />
<br />
Hans was diagnosed too early to enroll on this clinical trial for frontline therapy. He did qualify for one round of immunotherapy, much, much later in treatment. We were grateful that our doctors were able to do that for him!!Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com1tag:blogger.com,1999:blog-36564024.post-65666962228940028932015-02-14T18:40:00.002-06:002015-02-14T22:28:41.214-06:00Feeling the Love on Valentine's DayWe remember Hans and he lives in our hearts everyday. This Valentine's Day I'm sharing a list of the many groups, funds, foundations and charitable efforts helped us during Hans' long fight against Neuroblastoma. I started to think of HOW MANY different groups were there for us over the years - and I figured I should make a list! We were humbled, and overwhelmed - we were a middle class professional family, we didn't expect we'd be finding ourselves on this side of such charitable efforts...<br />
It's amazing when people are moved to do charitable things for others. It truly makes a difference.<br />
<br />
Gifts, Cash and checks at initial diagnosis - we were flooded with cards and gifts just as soon as Hans was diagnosed, a coworker brought us an envelope stuffed with approximately $800 cash the week we were diagnosed, friends brought gifts, and Hans’ school collected a CRV full of toys and books to keep Hans busy while inpatient.<br />
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Fund for Hans set up by friends and community members that first week of diagnosis. We received a letter and a check for $1,000 from a company in Huntsville, TX. It was part of their charitable giving program to make meaningful contributions to families facing pediatric cancers, and to support them as they “endure and persevere”.<br />
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The Run for Hans set up by friends, my running coach, my SSJMYC playgroup, and my co-workers at Little Saints preschool, was held three weeks to the day of Hans’ first visit to the TCH ER. The Run for Hans raised approximately $20,000 which we used for medically related expenses.<br />
<br />
Meals from the Saint Anne’s Society were delivered three days a week for five entire months starting the week Hans was first discharged from the TCH. The meals were lovely and balanced and catered to our dietary restrictions (no beef, no pork). We also received meals from friends at two points later in treatment, once organized through Meal Train. These meals helped us get through particularly busy and unpredictable treatments.<br />
<br />
<a href="https://www.candle.org/" target="_blank">Candlelighter’s Houston</a> often provided us parking passes to cover the $10 daily parking fee to park in the garage when we came in for clinic visits many days each month.<br />
<br />
<a href="http://www.texaschildrens.org/Plan/Patient-Support-Services/Child-Life/" target="_blank">Child Life</a> provided Hans with a toy at many clinic visits as well as many inpatient stays. They also provided Hans with education, support and distraction during difficult procedures and transitions.<br />
<br />
<a href="https://www.hisgracefoundation.org/" target="_blank">His Grace Foundation</a> provided support while Hans was inpatient on the Bone Marrow Transplant unit. They treated each family on the Bone Marrow Transplant Floor to a gift basket of useful hospital items upon arrival, a weekly shopping trip, special dinners and weekly breakfasts, as well as weekly massages for parents on the unit.<br />
<br />
Hospital based donors and groups like Junior League and <a href="http://radiolollipop.org/" target="_blank">Radio Lollipop</a> came through the clinic and hospital floors with toys, meals, gift cards, etc. Each gift and visit boosted spirits and made something positive and special to that day and brightened it just a bit.<br />
<br />
Social Workers had access to certain funds and benefits and would also help out at time with parking passes, meal vouchers, etc.<br />
<br />
Friends and family members, and virtual friends would frequently send cards, and gifts. Each gift was a blessing and would keep our spirits up. Hans was adopted by a “lego fairy” (a friend of mine from High School) who sent special shipments of legos to keep Hans’ fingers busy.<br />
<br />
<a href="http://www.cncfhope.org/" target="_blank">Children’s Neuroblastoma Cancer Foundation </a>sponsored a Parent and Caregivers Conference for Neuroblastoma families. We atteneded in 2007, and the CNCF sponsored our hotel stay. When we went back in 2009, the CNCF sponsored our travel expenses so that we were able to attend. Neuroblastoma experts from all over the country were present at this annual conference and informed families about research developments in effort to improve the outcomes for kids with this cancer.<br />
<br />
Through <a href="https://www.candle.org/" target="_blank">Candlelighters</a>, we were adopted by HP one Christmas, and Hans’ Christmas wishlist came through exponentially.<br />
<br />
Legacy of Love - a Child Life Specialist came to visit Hans for home visits and they worked on special projects together.<br />
<br />
<a href="http://www.monkeyinmychair.org/" target="_blank">There’s a Monkey in My Chair</a> - When Hans was on homebound education, this group sent an adorable stuffed monkey to occupy his chair in Mrs. Parker’s class and represent him while he was at home. It helped foster a home-school connection between Hans and his classmates, and it helped encourage Hans to visit class for special occasions when he could.<br />
<br />
<a href="http://www.sparrowclubs.org/" target="_blank">Sparrow Clubs</a> The Woodlands High School ninth grade campus Sparrow Club adopted Hans as their Sparrow Child. The school did various fundraisers to help support Hans in his fight against Neuroblastoma. The 9<span style="font-size: 9px;"><sup>th</sup></span> graders sold wristbands and did a Walk-a-Thon. They raised approximately $15,000 to use toward treatment-related expenses. This program miraculously kicked in when Hans had first relapsed, after the Run for Hans funds had just been exhausted. It felt miraculous that yet again, we did not have to be burdened with the financial impact of his treatment. It gave us incredible freedom to travel to seek second opinions and treatment elsewhere. Relapsed Neuroblastoma sometimes requires expertise and clinical trials far from home.<br />
<br />
<a href="http://www.thenccs.org/" target="_blank">National Children’s Cancer Society</a> covered many of the travel expenses for medically related travel. They could cover plane tickets, bus fare, cab fare, even a small stipend for meals while traveling. They could assist with hotel and Ronald McDonald House bills.<br />
<br />
CAREFORCE Continental Airlines Frequent Flyer Miles donation program. CAREFORCE donated two plane tickets to a family traveling for medical treatment. They also consolidated donated miles through a miles drive for an indivual needed to travel for a life-threatening illness. Our friend Mark was a Continental pilot, and his wife Michelle found about this program. She and other friends organized Miles Drives and almost one million miles were donated to our family for Hans’ treatment. Our CAREFORCE representative shared with me that he wasn’t aware of any other individual raising more miles in a Miles Drive.<br />
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Aetna and United Health Care had travel funds for traveling for cancer treatment to a hospital or facility more than 50 miles from home. We used these funds for airfare, travel, lodging and meals while traveling away from home for Hans’ treatments.<br />
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<a href="http://www.sunshinekids.org/" target="_blank">Sunshine Kids</a> - this was a Houston group that promoted fun events, parties, trips and good times. This group gave families tickets to sporting events like hockey and soccer games, and even gave families spending money for the outings. There were also tickets to The Houston Rodeo, and a fun weekend at Schlitterbahn - A water park in the hill country.<br />
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<a href="http://periwinklefoundation.org/" target="_blank">Periwinkle Foundation</a> - is a group that put on arts programs, camps and events for cancer kids like Family Camp and The Ranch trip. These trips were free to families, and they were a huge blessing. We were in a situation where we could never plan anything. We couldn’t count on the fact that Hans would be well on a particular day we made plans to make a short trip. We never made a commitment to travel, not wanting to scrap it at the last minute, losing out on funds and also suffering just a bit of heartbreak from not being able to do something we’d look forward to. Special trips like these were supported with medical staff and caring volunteers who were willing to work hard to make trips successful for medically fragile patients.<br />
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<a href="http://wish.org/refer-a-child" target="_blank">Make A Wish Foundation</a> - Hans had been into volcanoes and had suggested we take a trip to see Arenal in Costa Rica. The Make-A-Wish people weren’t certain we weren’t feeding him the idea, they had to interview him independently from us. They finally approved the trip. But, by that time, side effects related to Hans’ adrenal insufficiency made us feel like such a trip was risky. We put in a request for a ”treehouse” Rainbow Play Structure. Make-A-Wish had it installed in our backyard, and it created a special play space for Hans and Elle. It had a swing, a slide and a clubhouse. It was right outside and private, so if he wasn’t feeling well, or if we were worried about low white blood counts and we couldn’t take him out in public, we had our own very special place to play. What a gift!<br />
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<a href="http://www.corpangelnetwork.org/" target="_blank">Corporate Angel Network</a> - We got one round/trip flight from Houston to Philadelphia on a corporate jet. It was complete with door to door car service and an in-flight meal that included a filet mignon (which I don’t even eat)! I enjoyed the luxury, and the fact that our bags were handled for me - from car to hotel. But, Hans preferred the Continental Airlines flights he had gotten used to, with the seat back TV and his own remote control.<br />
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<a href="http://www.rmhc.org/" target="_blank">Ronald McDonald House</a> - the Ronald McDonald house made a huge impact to us both on an inpatient basis at Texas Children’s and CHOP, but also on an outpatient basis at CHOP and CHLA. RMH provided a wonderful, useful family room with a kitchen on the 9<span style="font-size: 9px;"><sup>th</sup></span> floor of TCH. RMH organized donors to provide meals regularly on the floor, and they baked and delivered cookies to patients in their rooms. As an outpatient, when we were in Philadelphia, or LA, the RMH would provide a safe, warm room for us. Rooms came at a bargain of just $15 donation per night. The house miraculously provided a donated meal each night. The Philadelphia RMH is the first in the country and different community groups organize to provide house meals each and every night of the year. It’s amazing. A menu is posted, and families can design their weekly menu around the offerings. RMH would sometimes be full. In those events, the RMH social worker would almost always be able to provide us with a voucher for a medical rate at a nearby hotel. Hotel rates would be cut in half or less to make prices manageable for families. RMH also had a toy stash for kids, tickets to special events such as hockey games and the zoo, and voucher for families for things like haircuts.<br />
<br />
<a href="http://www.familyhouseinc.org/" target="_blank">Family House</a> in San Francisco was similar to RMH. When Hans was in treatment at UCSF, family members could stay at Family House for a very low rate. Family House provided a kitchen, a laundry room, shower and some staple pantry items and snacks. <br />
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Family Funds through social workers at CHOP and CHLA got us through some situations we hadn’t anticipated. They helped with things like South West airlines passes for flights to Philly, they could help cover the excessive costs of medications that, on a very rare occasion, insurance wouldn’t cover. These funds were available with immediacy in certain situations where the funds were needed quickly and there was some desperation involved.<br />
<br />
<a href="http://www.manta.com/c/mryx7l9/the-protectors-memorial-foundation" target="_blank">The Protectors Foundation</a>- is a small family nonprofit in Texas, honoring a father and a son who were both lost to separate cancers. In 2011, our family was selected as the beneficiary of the proceeds of their annual golf tournament. The funds were to be used for treatment related expenses. They provided us with a couple thousand dollars to use toward treatment related expenses. Again, miraculously, the other funds from the Sparrow Clubs had been almost all used up when we were gifted with these funds.<br />
<br />
<a href="https://www.smallmiraclesfoundation.org/" target="_blank">Small Miracles Foundation</a> - is a small family nonprofit in California designed to support families cover a child’s medically-related expenses. In the Spring of 2012, Small Miracles picked up a handful of hospital bills, prescriptions, and they gave us 9 $50.00 gas cards to travel to and from the hospital and clinic. Again, miraculously, these funds became available when the funds from the Protectors Foundation had been spent.<br />
<br />
There are numerous small programs through hospitals such as<a href="http://www.chla.org/site/c.ipINKTOAJsG/b.3579145/k.E976/The_Literally_Healing_Program_at_Childrens_Hospital_Los_Angeles.htm#.VOAfO0Kst6k" target="_blank"> Literally Healing</a>, a group that will delivered a book a day to children inpatient at CHLA, and <a href="http://support.chla.org/siteapps/personalpage/ShowPage.aspx?c=9fLHLNPrEhL0H&b=8775411&sid=aqKJIXOALfIRK2PFKrF" target="_blank">Dog Therapy</a>, who brought dogs onto the floor, to bring a little simple joy to sick kids who are not only missing their families and homes, but their beloved pets as well. Groups like the Lemondrop Foundation provided fun assistance to families and organized volunteer photo shoots for families with professional photographers.<br />
<br />
Privately, we received support from friends and family in various ways as well throughout Hans' treatment. We probably received other wonderful support from organizations that I don’t even recall off the top of my head. It is staggering when you add it all up. This list doesn’t even begin to account for all of the efforts and contributions that go into making modern Children’s Hospitals as wonderful as they are through organizations like <a href="https://giveamiracle.childrensmiraclenetworkhospitals.org/" target="_blank">Children's Miracle Network</a> and <a href="http://www.starlight.org/" target="_blank">Starlight Foundation </a>and other groups. Nor, does it recognize donors that contribute to the actual hospitals or the research of the clinical trials. Groups like <a href="http://www.alexslemonade.org/" target="_blank">Alex’s Lemonade Stand</a> and <a href="http://www.stbaldricks.org/" target="_blank">Saint Baldrick’s</a> and others have given millions and millions over the last decade to fund research and improve outcomes for pediatric cancers. All of these resources, combined, kept us in the black, they kept us on our feet and they kept Hans in the fight. They allowed us to follow our gut instincts to the most relevant clinical trials and compassionate-use therapies we could find for our boy. They bought Hans years of life. These contributions kept us in our home and out of serious credit card debt and default. They were miraculous in the way they appeared in perfect timing and order for us to pursue the best treatments for Hans. Amazing!<br />
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com1tag:blogger.com,1999:blog-36564024.post-33883593268340826332014-11-03T16:59:00.002-06:002014-11-03T16:59:39.820-06:00death with dignity<div class="MsoNormal">
There is a lot of talk in the news and social media about right to die and death with dignity right now. I wrote this for Hans in memory and honor of his life and his dignified death. Every one has a right to their own opinion, and the right to make their own choices with their family - I just happen to have some strong feelings on this top and I thought I'd share...</div>
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As a mother who witnessed her nine-year-old son succumb to
his neuroblastoma cancer after a long battle, I have witnessed a death with
dignity.<span style="mso-spacerun: yes;"> </span>I think dignity is exemplified
when one gives this life everything he’s got and surrenders control of the moment
of passing to the ultimate mystery of fate, God, or the universe…<o:p></o:p></div>
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Our son, Hans, fought a battle against his cancer that
spanned almost six years, the majority of his life.<span style="mso-spacerun: yes;"> </span>His cancer progressed in the last six to
eight weeks of life and spiraled quickly.<span style="mso-spacerun: yes;">
</span>In those days he faced challenges I don’t often talk about, for it is
difficult to find the words, or strike the right tone, in describing what
happens to a small human body that is under such a state of attack.<span style="mso-spacerun: yes;"> </span>Those were intensely personal and private physical
struggles. I don’t frequently share descriptions of the ways in which his body
failed him, and of the pain, and of the labor of the tasks of caring for him in
those days.<span style="mso-spacerun: yes;"> </span>And yet – as I look up the
dictionary definition of dignity –“ the state of being worth of esteem or
respect”,<span style="mso-spacerun: yes;"> </span>and <span style="mso-spacerun: yes;"> </span>“conduct indicative of appreciation for the
gravity of an occasion or situation”, I know that my son’s last six weeks were certainly
examples of such.<o:p></o:p></div>
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Throughout his long diagnosis, and throughout his last weeks,
he grasped to live, fought for life, and unceasingly did the hard work of
trying to overcome the burden of his disease.<span style="mso-spacerun: yes;">
</span>He got back into the ring and fought, by any and all means, for a shot
at simply being able to continue to live his little boy’s life.<span style="mso-spacerun: yes;"> </span>Serious, businesslike, brave and strong – he
went about the business of trying to beat his cancer.<span style="mso-spacerun: yes;"> </span>In those last weeks, perhaps he knew that a
point of no return had been reached. Perhaps he indicated as much with small
statements.<span style="mso-spacerun: yes;"> </span>Perhaps he had begun to
accept his transition.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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In those weeks, we were all given the opportunity to witness
the completeness and the fullness of our boy’s life.<span style="mso-spacerun: yes;"> </span>We were all moved by the totality of
commitment he had to being present and fighting to stay.<span style="mso-spacerun: yes;"> </span>We were humbled by the mystery and beauty of
his fight to live. We were forever altered by the power of his love for his
life, and for us.<span style="mso-spacerun: yes;"> </span>I suspect, that
during those weeks, he was readied to make his transition from life to death. <span style="mso-spacerun: yes;"> </span>And, as we lost him, there was a sense of
amazing grace, a peace that defies understanding, and a knowing that we would
be together again, on the other side.<span style="mso-spacerun: yes;"> </span>I
am left believing that our ultimate personal mystery, death, is best left
unorchestrated.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com6tag:blogger.com,1999:blog-36564024.post-79844435411608142642014-09-22T00:21:00.001-05:002014-09-22T00:21:56.777-05:00Two yearsTonight marks two years without our special boy. Of course, even though he is not here with us on earth, he is constantly on our hearts and minds. <br />
<br />
We have so many sad and mournful feelings as we mark this point. Those feelings are tempered by our beautiful memories. As we looked through a slideshow of photos this morning, I was reminded again of all the ways Hans was connected and supported and lifted up during his journey. He had a beautiful network in his friends and family and we are eternally grateful to you for that. I was moved to remember that he readily returned love unconditionally and was a devoted friend and family member. His faith in love and friendship never wavered.<br />
<br />
Even though we are two years from losing him, I feel that we are not getting farther from our Hans, but that we are always moving towards him.<br />
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I think I failed to post that we all got memorial tattoos this New Years eve. It was a first for all of us - me, Kevin, Elle, Grandma Kathy and Grandma Stephanie! <br />
<br />
I'm finally posting some pictures tonight. Elle designed our tattoos, and our friends Melody and Ben provided the ink. Kevin and Elle and my tattoos are the same - a bird with two feathers, falling to represent what has been left behind. The grandmas also had feather incorporated into their design. They art was done up at Third Eye Tattoo in Kevin's hometown of Ellensburg, Washington.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxhOPiOpGoutSZ3RybsWdpRJ837YwJC6T0kRmsg-sf4z0Z1lycF2W1qCyij9vUT_WD9183xngHedHRhxWqgHz4XEQme4AerVK3IFPORSJPLsYx0ToqLbfyqIiJ4Qt8GSzc87O7/s1600/IMG_1759.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxhOPiOpGoutSZ3RybsWdpRJ837YwJC6T0kRmsg-sf4z0Z1lycF2W1qCyij9vUT_WD9183xngHedHRhxWqgHz4XEQme4AerVK3IFPORSJPLsYx0ToqLbfyqIiJ4Qt8GSzc87O7/s1600/IMG_1759.JPG" height="240" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgalFXmJS2bhM13mRl_bvtBbjZRBpRQkUhaDq2EOjnruoLR8VsUsFwWBUOM6x2xsjTDLhadLMi2WQ7rbjQCG5dyBJk2RURMEBMkEts_IbImIZLQcTOjfXiJ5P4ce77K_dr_4fjk/s1600/IMG_1739.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgalFXmJS2bhM13mRl_bvtBbjZRBpRQkUhaDq2EOjnruoLR8VsUsFwWBUOM6x2xsjTDLhadLMi2WQ7rbjQCG5dyBJk2RURMEBMkEts_IbImIZLQcTOjfXiJ5P4ce77K_dr_4fjk/s1600/IMG_1739.JPG" height="320" width="240" /></a></div>
<br />
My Aunt Pati sent us a card to mark the two years. It was a silk screen of a feather with the following text: <br />
<br />
"A feather has many different symbolisms. The Native Americas use feathers to ward off evil. A found feather is a sign of encouragement or a reminder to be lighthearted. It can also be a source of communication, or a message from someone now gone from our lives. The message conveys that all is well...don't be sad. Feathers are as old as the beginning of time. They are intricate, delicate and tell a story. Keep one always nearby."<br />
<br />
We have ours so nearby, that our right wrists can simply be lifted to our hearts.<br />
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<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com2tag:blogger.com,1999:blog-36564024.post-37747871444017976352014-09-11T15:23:00.001-05:002014-09-11T15:23:27.009-05:00Shop to GiveWe are happy to post that once again, Hans' Godmother Roxie, at Scarf it Up Santa Cruz is partnering with our September fundraiser. Scarf it Up is donating 15% of online scarf sales now through September 29 towards pediatric cancer research in honor of Hans. These funds will then be matched by the Jimmy V Foundation for the Carousel of Possible Dreams Fundraiser. What a great way to do some early holiday shopping and raise money for research! Check it out at:<br />
www.scarfitupsantacruz.com<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaTTcfDT_aZbzYWMTJXpydQEWaUnR-0EGncUmVWJpLpsuzBhZL2uxNaWTiltqtOSci90RtD4_cfkPAcspMmSemcrQuyb7Iz26lsL9GYkaF85U4kPtsGKvCpYtlJ5_a-QuZ5xfx/s1600/001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaTTcfDT_aZbzYWMTJXpydQEWaUnR-0EGncUmVWJpLpsuzBhZL2uxNaWTiltqtOSci90RtD4_cfkPAcspMmSemcrQuyb7Iz26lsL9GYkaF85U4kPtsGKvCpYtlJ5_a-QuZ5xfx/s1600/001.jpg" height="320" width="172" /></a></div>
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<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-68739861461741934242014-09-02T14:55:00.000-05:002014-09-02T14:55:22.099-05:00Team Hans September Fundraiser - The Carousel of Possible Dreams
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi4gkDJCzBxSjQ1r2bZCEAnaxcRYVBuQN9I7doameogobTaeECyvhkmiTb7qIjgPy6MGTGr0H16ZT-1JvxY9w3o_7hQvOEi9zUZvnmGebExwFEFdGoTpzsSAylt-f9ABBX6InE/s1600/copd_header.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi4gkDJCzBxSjQ1r2bZCEAnaxcRYVBuQN9I7doameogobTaeECyvhkmiTb7qIjgPy6MGTGr0H16ZT-1JvxY9w3o_7hQvOEi9zUZvnmGebExwFEFdGoTpzsSAylt-f9ABBX6InE/s1600/copd_header.JPG" height="99" width="640" /></a></div>
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<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 10.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;">It’s that time of year – September is
Pediatric Cancer Awareness month. As you know, this can be a rough month
for me, Kevin and Elle. Two years ago this month we lost Hans to his
Neuroblastoma at age 9, after an almost 6 year battle.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 10.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;"> We are proud to be a part of a 30–day
fundraising effort for Neuroblastoma, research, awareness and education – <a href="http://www.festivalofchildren.org/site/TR/Events/TR_COPD_FROC?px=1115108&pg=personal&fr_id=1340" target="_blank">TheCarousel of Possible Dreams</a>. Please consider joining us in honoring Hans
by making a donation this month. Funds will be matched by a third party
for up to $500,000! We have set a goal for Team Hans of $5,000. It
will be our one big fundraising push of the year. <o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;">Proceeds benefit both the NANT and the CNCF.
Kevin and I work closely with both of these organizations. Currently,
Kevin and I serve as parent representatives for the NANT at both the regional
and national levels. We have worked with the CNCF on fundraising and outreach
efforts since 2007. We pour a little bit of our hearts and souls into the NANT
and the CNCF so that the next cohort of kids faced with Hans’ diagnosis will
have a shot a better/longer life, and so that families might find support and
connection throughout treament.<o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;"> Thank you for following this link, and for
your donation of any amount. It truly means the world to see your names in
support.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 10.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;">Follow this link to find Hans' page: </span>http://www.festivalofchildren.org/site/TR/Events/TR_COPD_FROC?px=1115108&pg=personal&fr_id=1340</div>
<div class="MsoNormal" style="margin-bottom: 10.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
Or, go to festivalofchildren.org and search for Lara Weberling.</div>
<div class="MsoNormal" style="margin-bottom: 10.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
Other NB families are invited to start their own pages as well!</div>
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<span style="font-family: Verdana; font-size: 10.0pt; mso-bidi-font-family: Verdana;"><br /></span></div>
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<br /></div>
<!--EndFragment-->Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-28290491693227134472014-08-20T19:33:00.002-05:002014-08-20T19:33:43.181-05:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyBOQ9qwMjfLxo70M4RBWZ6Nkcb5N0qeumA3upOA12XBkB4xyFltmc-dLE81rYjSB04pnb6NATx5oo8cxpkPaepU89KO5OKyeoBPi4uGcdjUojyJqR8GbQvHPmFCLx6HM666PS/s1600/photo-23.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyBOQ9qwMjfLxo70M4RBWZ6Nkcb5N0qeumA3upOA12XBkB4xyFltmc-dLE81rYjSB04pnb6NATx5oo8cxpkPaepU89KO5OKyeoBPi4uGcdjUojyJqR8GbQvHPmFCLx6HM666PS/s1600/photo-23.JPG" height="300" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;">It is pretty rough not sending you off to the fifth grade this week, </span><a data-hovercard="/ajax/hovercard/user.php?id=100001750015248" href="https://www.facebook.com/hans.journey" style="background-color: white; color: #3b5998; cursor: pointer; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left; text-decoration: none;">Hans</a><span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;">. Oh, how I wish that you were sitting in a classroom! Elle and I picked out a back pack and filled it with the entire 5th grade school supply list and will drop it off and hope it goes to a little boy who needs it today. The girls in my book group joined in the effort. It's good to do a little good. Love is forever. xoxo</span></div>
<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-74970329691095209502014-08-14T19:20:00.002-05:002014-08-14T19:20:39.259-05:00N-PACK meeting at CHLA<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKAsIJsODCYQeq61lk23zmF6q95yzGXOWBi8qmbT-3rY7fc5CqVyCCCjrZ2KJfXULcGEPTvHHbK2-pq-xzakj5xfJTTDEzmYh-a2lqbHDTFfa7ZTkvC6bcWI62RDrFw_ewey6-/s1600/Screen+Shot+2014-08-14+at+5.09.59+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKAsIJsODCYQeq61lk23zmF6q95yzGXOWBi8qmbT-3rY7fc5CqVyCCCjrZ2KJfXULcGEPTvHHbK2-pq-xzakj5xfJTTDEzmYh-a2lqbHDTFfa7ZTkvC6bcWI62RDrFw_ewey6-/s1600/Screen+Shot+2014-08-14+at+5.09.59+PM.png" height="240" width="320" /></a></div>
I wanted to share with everyone that we are holding our next N-PACK meting next Thursday, August 21st at CHLA. NB families are all welcome to join us, NB Staff is welcome as well, if they can get away.<br />
<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-8323506882372745542014-06-18T19:21:00.001-05:002014-06-18T19:21:34.153-05:00Summer Bake SaleJust wanted to share word that our friends in Houston continue to Bake Sale!<br />
The next sale is set for 7/18/14 at TCH.<br />
Please contact Kim at esmommy2000@yahoo.com if you'd like to bake, work or support that sale.<br />
<br />
Thanks to Blair and Kim and Julie who continue to run the Houston Bake Sale at TCH and raise money for the CNCF! So much love!!! xoxo<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUKlHoRXwNnPyke3L0U4FYw61HWt5M0d3a3Gbeqxvo89BdV00Og0GTXyqzej9drtxsNxvg7flLZU49LVHVD3vr2HRIGA4e5eJp4MhiurcwRzSfXQuRhR6TXbGqblTlrWR6solS/s1600/1377006_10151838437274130_93366979_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUKlHoRXwNnPyke3L0U4FYw61HWt5M0d3a3Gbeqxvo89BdV00Og0GTXyqzej9drtxsNxvg7flLZU49LVHVD3vr2HRIGA4e5eJp4MhiurcwRzSfXQuRhR6TXbGqblTlrWR6solS/s1600/1377006_10151838437274130_93366979_n.jpg" height="222" width="320" /></a></div>
<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com0tag:blogger.com,1999:blog-36564024.post-20504882921051328672014-03-05T12:23:00.002-06:002014-03-05T12:30:31.618-06:00Joy and PurposeIt has been a while since I made a blogpost. A lot has been going on! Our friends in TX held another Texas-sized Bake sale at TCH and brought in $4,000 for the CNCF. Thank you, Blair, Kim and Julie and all the bakers and volunteers for all of your efforts. It's amazing! Kevin was able to tack a quick visit to The Woodlands onto a work trip to Houston last month. He visited the Team Hans section of the hike and bike path there. Amazing! I recently had a whirlwind tour of LA this Oscar's Weekend with 5 girlfriends from Texas. Our hearts are full of gratitude for our many opportunities to follow Hans' little spirit as he guides us towards Joy and Purpose.<br />
<br />
I heard an interview with Deepak Chopra a while ago. He said that in order to find our authentic purpose in life, we can start each day by asking ourselves three questions - Who am I? What am I grateful for? What do I want? I know that when I ask myself what I am grateful for, the first thought in my mind and the first word on my lips is HANS. His little spirit fills my soul. When I ask myself what I want, the best answer that comes to me is joy and purpose. I will probably forever be figuring out my authentic purpose, but I know that that little boy is at the center of it.<br />
<br />
We have had some opportunities to give service to Hans' life and his fight for it against his neuroblastoma. Locally, we are working with the Bakersfield Memorial Hospital patient advisory council to try and improve the experience for patients and families in the ER. Regionally, we are trying to create a Neuroblastoma Family Group in LA as a forum for connection, support, education, and a network for grassroots fundraising efforts. Kevin and I are honored and humbled to be added as parent representatives to the New Advances in Neuroblastoma Therapies (NANT). I have been invited onto the Parent Advisory Council and Kevin has been invited as the parent representative for the research review board for the NANT at the annual conference. We will carry with us the spirit of Hans and each of his buddies that we love so well as we attend this meeting, and our hearts will be full. <br />
<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com6tag:blogger.com,1999:blog-36564024.post-73364488039711141482013-12-09T18:11:00.001-06:002013-12-10T13:40:11.438-06:00Kick Off Meeting for CHLA Neuroblastoma Family GroupI would like to let people know that, together with the NB Team at CHLA and the CNCF, I am starting up a grassroots CHLA Neuroblastoma Family Group. The idea is for families to come together for information, support, community, and to join forces in fighting back by supporting one another in fundraising efforts for research, education and awareness.<br />
<br />
<br />
<b><span style="color: #6aa84f; font-size: x-large;">Kick Off Meeting! CHLA-NB Family Group</span></b><br />
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<span style="font-size: 20.0pt;"><span style="font-family: Arial; mso-special-format: bullet;">•</span></span><span style="color: #3366ff; font-family: 'Trebuchet MS'; font-size: 20pt; text-indent: -0.38in;">Neuroblastoma</span><span style="color: #3366ff; font-family: 'Trebuchet MS'; font-size: 20pt; text-indent: -0.38in;">
families (parents/caregivers, child, siblings) invited to attend</span></div>
<div style="direction: ltr; margin-bottom: 0pt; margin-left: .38in; margin-top: 4.8pt; mso-line-break-override: restrictions; punctuation-wrap: simple; text-align: left; text-indent: -.38in; unicode-bidi: embed; vertical-align: baseline;">
<span style="font-size: 20.0pt;"><span style="font-family: Arial; mso-special-format: bullet;">•</span></span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 20.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Please join us for our Kick-Off
Meeting!<span style="mso-spacerun: yes;"> </span></span></div>
<div style="direction: ltr; margin-bottom: 0pt; margin-left: .38in; margin-top: 4.8pt; mso-line-break-override: restrictions; punctuation-wrap: simple; text-align: left; text-indent: -.38in; unicode-bidi: embed; vertical-align: baseline;">
<span style="font-size: 20.0pt;"><span style="font-family: Arial; mso-special-format: bullet;">•</span></span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 20.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Enjoy lunch and some social time</span></div>
<div style="direction: ltr; margin-bottom: 0pt; margin-left: .38in; margin-top: 4.8pt; mso-line-break-override: restrictions; punctuation-wrap: simple; text-align: left; text-indent: -.38in; unicode-bidi: embed; vertical-align: baseline;">
<span style="font-size: 20.0pt;"><span style="font-family: Arial; mso-special-format: bullet;">•</span></span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 20.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Round table discussion on the
direction of this new group for families of children with </span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 20.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Neuroblastoma</span></div>
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<br />
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Thursday Dec 19</span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid; mso-text-raise: 30%; vertical-align: super;">th</span></div>
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Anderson Pavilion</span></div>
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Family Lounge 4M</span></div>
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">Noon – 2pm</span></div>
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; font-weight: bold; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;"><br /></span></div>
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<span style="color: #3366ff; font-family: 'Trebuchet MS'; font-size: 16pt; text-indent: 0in;">Lunch
will be provided courtesy of the Children’s </span><span style="color: #3366ff; font-family: 'Trebuchet MS'; font-size: 16pt; text-indent: 0in;">Neuroblastoma</span><span style="color: #3366ff; font-family: 'Trebuchet MS'; font-size: 16pt; text-indent: 0in;">
Cancer Foundation</span></div>
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<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;"><a href="http://www.cncfhope.org/">www.cncfhope.org</a></span></div>
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<div style="direction: ltr; margin-bottom: 0pt; margin-left: .08in; margin-top: 3.84pt; mso-line-break-override: restrictions; punctuation-wrap: simple; text-align: center; text-indent: 0in; unicode-bidi: embed; vertical-align: baseline;">
<span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;">RSVP
to Lara at </span><span style="color: #3366ff; font-family: "Trebuchet MS"; font-size: 16.0pt; language: en-US; mso-ascii-font-family: "Trebuchet MS"; mso-bidi-font-family: "Trebuchet MS"; mso-fareast-font-family: "MS Pゴシック"; mso-font-kerning: 12.0pt; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #3366FF; mso-style-textfill-type: solid;"><a href="mailto:laracadyweberling!@gmail.com">laracadyweberling@gmail.com</a></span></div>
Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com4tag:blogger.com,1999:blog-36564024.post-42616240929021090502013-10-12T19:48:00.002-05:002013-10-12T19:48:58.208-05:00Texas Bakesale Still BIG!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTyGxXEgBrzdx-SdCiHck6ui6WXbdxDc3yt8dp0HbxnHmjfi3frE2XHcBT3cGTDiTkBYcTFlm9aKYdRDebcBbUBwDlddPDZ3Yw79udAS5dDsOh13a9XJ-eIStVaq4oVaFxqEQs/s1600/1377006_10151838437274130_93366979_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTyGxXEgBrzdx-SdCiHck6ui6WXbdxDc3yt8dp0HbxnHmjfi3frE2XHcBT3cGTDiTkBYcTFlm9aKYdRDebcBbUBwDlddPDZ3Yw79udAS5dDsOh13a9XJ-eIStVaq4oVaFxqEQs/s320/1377006_10151838437274130_93366979_n.jpg" width="320" /></a></div>
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The TCH CNCF Bakesale is still going strong. NB mamas Charon and Jenn ran it for a couple of years - but with Jenn's family move to Oklahoma, the reins have been passed over to our friends Blair and Kim and Julie. Thanks for taking over the organizing of the fun chaos that is the Bakesale! If you've somehow missed this changing of the guard, and would like to bake, work or even shop it, feel free to email Kim at: esmommy2000@yahoo.com<br />
<br />
Thanks to Charon and Jenn for your years as "Presidents" of the Bakesale! It is a big, crazy, fun job - I know!!!<br />
<br />
Thanks too to everyone who baked! You know who you are - too many to list. Thanks to Carmen, Brenda, Mayada, Amy and Charon, who came out to help Blair, Kim, Julie work the sale. You sweet volunteers raised another $2,000 for pediatric cancer research and education. We feel the love!<br />
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Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com1tag:blogger.com,1999:blog-36564024.post-73000193610387989142013-10-03T08:25:00.000-05:002013-10-03T08:25:28.477-05:00THE STORY OF THE TEAM HANS PATH, CREATED 09-21-2013<div class="separator" style="clear: both; text-align: center;">
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<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span class="normaltextrun"><span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;">Hi, my name is Carmen Smiley, and feel extremely lucky that I had
the pleasure of knowing and being touched by Hans. Lara has asked,
and I am humbled to, be a Guest on the blog and share the story with you of how
Hans’ Texas “family” decided to remember Hans on the anniversary of his
passing.</span></span><span class="scx169040477"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;"> </span></span></span><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;"><br /><span style="font-family: Calibri;">
</span></span><b style="mso-bidi-font-weight: normal;"><span style="color: black;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 6;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;"><span class="normaltextrun"><b><span style="color: black; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;">Firsts</span></b></span><span class="scx169040477"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;"> </span></span></span><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: "Segoe UI"; mso-hansi-font-family: Calibri;"><br /><span style="font-family: Calibri;">
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">Saturday, September 21st,
2013 came with mixed emotions. This marked the first full year of living here
on Earth without Hans. But, it also was the beginning of a tradition
where a group of people, who had been brought together because of their
love for Hans, got together once again in his honor to dedicate a walking path
to him (just steps from the old Sand Pebble Dr. House in The Woodlands, Texas)
and maintain it in his honor.</span></span><span class="scx169040477"> </span><br />
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">As we pondered various
ideas of how we could appropriately honor Hans on this anniversary, we always
came back to the question - what would have made Hans a happy boy?<span style="mso-spacerun: yes;"> </span>To name a few, we thought of a red brick
alongside many more at the Cynthia Woods Mitchell Pavilion entrance, specially
engraved with a message honoring Hans, and we also thought of, and wondered how
we'd go about putting a permanent placement of an object in one of the
local pools or parks Hans used to happily frequent quite often.</span></span><span class="scx169040477"> </span><br />
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">But, the ideas didn’t seem
to be perfect enough. And, the word "Family" kept popping into
my mind. Hans so very much loved his family: Dad, Mom and big sis Elle (of
course, + all his animal friends). So, the idea of doing an activity of
Adopting-a-Path seemed so appropriate. In effect, each of us on Team Hans had
"adopted" our little buddy. Getting our group together and
picking up litter along the same path that Lara and Kev and Elle would stroll
him, would baby jog him (where he <i style="mso-bidi-font-style: normal;">may</i>
have tossed out a blue raspberry Jolly Rancher or Ring Pop candy wrapper, or
two, or three along his journey from time to time), would take walks on, and
where he'd ridden his bike, seemed so special to us. </span></span><span class="scx169040477"> </span><br />
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">So, we rallied the troops
and once again the love for this little guy warmed all of our hearts. We
gathered early, beginning at 8:00am, on the morning of September 21<sup><span style="font-size: x-small;">st</span></sup>.<span style="mso-spacerun: yes;"> </span>We enjoyed donuts and drinks, and visited as
we listened to Sam </span></span><span class="spellingerror"><span style="color: black;">VanLaningham</span></span><span class="normaltextrun"><span style="color: black;"> 's beautiful song called Hans Song, we rocked out to the
Big Time Rush album-Hans' fav., wrote chalk messages, held Optimus Prime balloons, sported
our Hans-gear, smiled, laughed, felt Hans’ presence,<span style="mso-spacerun: yes;"> </span>felt the spirit of those who loved Hans from
all over the world who couldn’t make it, felt somber, ate blue candy, signed a
guest book, took photographs, gazed at Marigolds, contributed money for
research we long to find a cure for, walked together, picked up trash together,
pulled wagons of trash/recyclables together, played on play-structures, swung on
swings, ran, walked, goofed around.<span style="mso-spacerun: yes;"> </span>But,
most importantly of all, we remembered our friend Hans and thought of his
family, The </span></span><span class="spellingerror"><span style="color: black;">Weberlings</span></span><span class="normaltextrun"><span style="color: black;">, who are so dear to our hearts
and who will always have a special place in our lives. </span></span><span class="scx169040477"> </span><br />
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">So now our group has a
rallying point, <u>a path</u>, somewhere to gather, reflect, and give back. A
place where our love for this boy and his family can be put into action. You
all know that's what Hans would want us to do… He’d want us happy, having fun,
doing what we like. There is a passage that I thought was somehow fitting to
this story, for its obvious use of the theme of a path, but also for its
message about the things that happen along the way. On all of our paths we
encountered Hans, and on his path he encountered us and because of this,
we are all better for it. </span></span><span class="eop"> </span></span></span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt; line-height: 115%;"><o:p></o:p></span></div>
<span class="normaltextrun"><span style="color: black; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">_______________________________________</span></span><span class="eop"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span><br />
<br />
<div align="center" class="paragraph" style="margin: 1em 0in; text-align: center; vertical-align: baseline;">
<span class="normaltextrun"><b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">As you journey through life, choose your destinations
well, but do not hurry there. You will arrive soon enough. Wander
the back roads and forgotten paths, keeping your destination in your heart like
the fixed point of a compass. Seek out new voices, strange sights, and
ideas foreign to your own. Such things are riches for the soul. And
if, upon your arrival, you find that your destination is not exactly as you had
dreamed, do not be disappointed. Think of all you would have missed
but for the journey there, and know that the true worth of your travels lies
not in where you come to be at journey’s end, but in who you come to be along
the way. For life isn’t a destination—it’s a journey. We all come
upon unexpected curves and turning points, mountaintops and valleys.
Everything that happens to us shapes who we are becoming. And in the
adventure of each day, we discover the best in ourselves.</span></b></span><span class="eop"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></b></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span></b></div>
<span class="normaltextrun"><span style="color: black; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">_______________________________________</span></span><span class="eop"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span><br />
<br />
<div class="paragraph" style="margin: 1em 0in; vertical-align: baseline;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">
<span class="normaltextrun"><span style="color: black;">I think </span></span><span class="spellingerror"><span style="color: black;">Hansie</span></span><span class="normaltextrun"><span style="color: black;"> might be looking down from
Heaven right now advising us to continue to do just what this passage
said. <i>I know I’m glad Hans’ journey had us in it.</i></span></span><span class="scx169040477"> </span><br />
<span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">Thank you to everyone for
making this possible.</span></span><span class="scx169040477"> <span style="mso-spacerun: yes;"> </span>And stayed tuned from me for future ‘pick up’
dates happening each quarter…<b style="mso-bidi-font-weight: normal;">a<i style="mso-bidi-font-style: normal;">nd the journey will go on</i></b><i style="mso-bidi-font-style: normal;">…..</i></span><i style="mso-bidi-font-style: normal;"><br />
</i><span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">LOVE and MISS you dearly Hans;
and love to you all, </span></span><span class="scx169040477"> </span><br />
<span class="normaltextrun"><span style="color: black;">Carmen</span></span><span class="eop"> </span></span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span></div>
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p> </o:p></span><br />
<span class="normaltextrun"><span style="color: black; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">PS-If you are feeling moved, and would like to help by making
a monetary donation (big or small, as every penny helps), to The Children’s
Neuroblastoma Cancer Foundation, please do so by visiting Hans’ park </span></span><a href="http://www.cncfparks.org/help-a-child/park/21/"><span class="normaltextrun"><span style="color: blue; font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">http://www.cncfparks.org/help-a-child/park/21/</span></span></a><span class="eop"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> <span style="mso-spacerun: yes;">
</span>Let’s make September not only just Pediatric Cancer Awareness Month, but
make it each and every day of the year! </span></span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span><br />
Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com3tag:blogger.com,1999:blog-36564024.post-23652324880335681382013-09-21T11:33:00.000-05:002013-09-21T11:33:10.222-05:00Love and Loss at One Year
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<span style="font-size: large;"><span style="font-family: Calibri;">As
most of you know, it has been one year since we lost Hans. I wrote at six months that it was easier to
talk about </span><b><span style="font-family: Calibri;">what</span></b><span style="font-family: Calibri;"> we are
doing, than it is to talk about </span><b><span style="font-family: Calibri;">how</span></b><span style="font-family: Calibri;"> we are
doing. Now, at one year, I’m compelled
to share some of my personal thoughts and feelings. In the past year, as I’ve read different
books, a few things have really popped out at me as helpful and meaningful. I am going to share some of them and put my
thoughts together about losing Hans and the emotional/spiritual aftermath of our
loss. <o:p></o:p></span></span></div>
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<span style="font-size: large;"><span style="font-family: Calibri;">This
year, I made my way through </span><u><span style="font-family: Calibri;">War
and Peace</span></u><span style="font-family: Calibri;"> by Leo
Tolstoy.</span><span style="font-family: Calibri;">
One passage helped me put into perspective the thoughts and feelings we may experience passing from this earthly life onto death. Prince Andrey has deathbead revelations about
life, love, and his almost unrequited love in Natasha. </span><span style="color: #343434; font-family: Calibri;">"Love,
what is love? Love hinders death. Love is life. All, everything
that I understand, I understand only because I love. Everything is, everything
exists, only because I love. Everything is united by it alone. Love is God.
And to die means that I, a particle of love, shall return to the general
and eternal source.” How beautiful to
think that as we witnessed the outward signs of Hans’ last minutes of life, he
was tapping into a greater, more beautiful source and reconnecting to that place
from which we have all have come and to which we shall all return. Prince Andrey goes on to describe, “I knew
that feeling of love, which is the very essence of the soul, for which no
object is needed.” </span><span style="font-family: Calibri;"><o:p></o:p></span></span></div>
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<span style="color: #343434; font-family: Calibri;"><span style="font-size: large;">The morning that we lost Hans, one
year ago today, we were overcome by a feeling of Amazing Grace or, a peace that
surpasses all understanding. Perhaps it came from a transcendence of knowing
that Hans was somehow truly in even better hands than he was in his cozy home, in his
little body, with his adoring family caring for him.<o:p></o:p></span></span></div>
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<span style="color: #343434; font-family: Calibri;"><span style="font-size: large;">My favorite quote about what is to
be found once you get to the other side comes from Eben Alexander, a neurosurgeon
who experienced an entire week in Heaven, the same week he spent in a coma and
by all outward measures was “brain dead”, not to return. He chronicled his experiences in his book, <u>Proof
of Heaven</u>. Once he “died”, Alexander
experienced a message of unconditional love and acceptance he received beyond
the scope of language. He was greeted by
a beautiful lady (who he’d later find out was the sister from whom he was
separated at birth) who shared with him a look of love that was beyond all our
earthly constructs of love. “It was
something higher, holding all those other kinds of love within itself while at
the same time being more genuine and pure than all of them.” The message he received had three parts: “You are loved and cherished, dearly,
forever. You have nothing to fear. There
is nothing you can do wrong.” What a
welcome! What a beautiful and almost
incomprehensible comfort to think that our boy had passed on to be even more
fully loved once he departed from his adoring family. And, oh, he was so loved right here! (Serendipitously, Kevin
stumbled across Newsweek Magazine and its article with this passage on San Juan
Island the day after we celebrated Hans’ life in Seattle!)<o:p></o:p></span></span></div>
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<span style="font-size: large;"><span style="color: #343434; font-family: Calibri;">I love to read about love and the
way it transcends death. I continuously
think about the beautiful, powerful unconditional love Hans had for us. </span><span style="font-family: Calibri;">Our boy
endured hundreds and hundreds of treatments and procedures in an almost endless
nonstop stream, just to be here, just to be present for each of his days with
us, to be a part of his little family, to love and to be loved. He repeatedly summoned the force to get back
into the ring like a tiny little gladiator.
He’d go back in and take anything that was thrown at him, tapping into
an energy reserve from deep within. That was his job and for it he gave his
lifeblood. We witnessed a sustained and
intense effort and indeed, we were humbled and awed to </span><b><span style="font-family: Calibri;">be</span></b><span style="font-family: Calibri;"> the little family that he was fighting to
simply come home to. To be so loved and to have loved so is a gift-what a gift!</span><span style="color: #343434; font-family: Calibri;"><o:p></o:p></span></span></div>
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<span style="color: #343434; font-family: Calibri;"><span style="font-size: large;">When I think deeply and am heart
broken that Hans is gone, that he is no longer physically here, I have precious
and deep moments of realization about what he has left behind. I know that Hans’ love was as real a thing as
I can imagine. I keep thinking: Love is a noun, like a brick, or a blanket. Hans’
love was that real. His love had energy
and that energy affected and changed us.
We have been <i>metaphysically, physically, emotionally, and spiritually</i>
altered by the impact of that love. Hans’
love for us has changed us at the very core of our bodies, spirits and minds. Thus,
Hans’ love remains alive in us. It has affected
the way we go about living our lives and interacting with others. <o:p></o:p></span></span></div>
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<span style="color: #343434; font-family: Calibri;"><span style="font-size: large;">Yes, we are left without him
physically here. But there are caverns
that have been carved into our very beings.
These caverns are now filled with something else, something deep and still. There is now an internal well or rich
reservoir of love and compassion. Hans created that space, he carved it out and
left it there, and his love permeates the sacredness of that space.<o:p></o:p></span></span></div>
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<span style="color: #343434; font-family: Calibri;"><span style="font-size: large;">I was blown away by this passage
from <u>Wild,</u> by Cheryl Strayed, about the aftermath of catastrophe. After
losing her mom to cancer, Strayed went on an epic hike of the Pacific Crest
Trail. She hiked through most of
California and, once in Oregon, came upon Crater Lake - the remains of what was
once Mount Mazama - a volcano whose massive eruption about 7,500 years ago left
behind no mountain at all but a vast emptiness that would eventually become the
deepest lake in the US. “This was once
Mazama, I kept reminding myself. This
was once a mountain that stood nearly 12,000 feet tall and then had its heart
removed. This was once a wasteland of
lava and pumice and ash. This was once
an empty bowl that took hundreds of years to fill. But, hard as I tried, I couldn’t see them in
my mind’s eye. Not the mountain, or the
wasteland or the empty bowl. They were
simply not there anymore. There was only
the stillness and silence of that water.
What a mountain and a wasteland and an empty bowl turned into after the
healing began.” <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">We
shall never be healed of the loss of our boy.
We shall never recover from the plucking away of that gorgeous blonde thing,
with his sea green eyes and radiant smile, our only son and brother. One year
after our loss of him, and all we can say is:
Love prevails and endures. Love
is forever. We comfort ourselves in
knowing that he was beloved while he was here with us. Hans
lived a beautiful life and now he is a part of something bigger and (again,
incomprehensibly!) even more beautiful. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: large;">I
still find myself having difficulty balancing on the slippery log of
perspective. I can focus on the tragic
loss of the boy that doesn’t get to play on a soccer team, graduate, get married,
build a life and a career, or do any of those things that make up the life that
each of us has come to expect and take for granted. Alternately, I can focus on the beauty and
the completeness of Hans’ life and his fight for it, which he gave everything
he had. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">What
do we hope to get out of life? How many
years, how many things, how many possessions, how many relationships? How many goals do we hope to meet? I am comforted in knowing that although Hans’
life was short – he got from his compact little life all that any of us can ever hope
for. Writer Raymond Carver left this
question for us, engraved on his tombstone:<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">And
did you get what <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">you
wanted from this life, even so? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">I
did.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">And
what did you want?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">To
call myself beloved, to feel myself<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">beloved
on the earth.”<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">Love
is not only the very essence of the stuff of the soul, but to love and be loved
is the end game of this life. I was always consciously grateful for the gift of
Hans’ love. I always used say to him, “Thank you for loving me." I guess I wanted him to know that I would be
eternally grateful for the gift of it. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">I
have to generously thank each of you who also loved Hans and who helped him to
be so beloved for his time here on Earth.
I know and I saw how he loved each of you. Thank you for scooping him up and loving him
back. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: Calibri;">Finally,
Anne Lamott writes in </span><u><span style="font-family: Calibri;">Help,
Thanks, Wow</span></u><span style="font-family: Calibri;">,
“Love falls to the earth, rises from the ground, pools around the
afflicted. Love pulls people back to
their feet. Bodies and souls are
fed. Bones and lives heal. New blades of grass grow from charred
soil. The sun rises.” In the emotional aftermath of losing our boy,
we are left with no choice but to move forward and to make ourselves a
beautiful life. But, believe me, we are
transformed. Hans has become a part of
us. He is helping to plant the seeds and create the landscape that we shall know. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: Calibri;">What
is perhaps </span><b><span style="font-family: Calibri;">most
important</span></b><span style="font-family: Calibri;">
about Hans’ story, is that it is not just Hans’ story. It is a</span><span style="font-family: Calibri;"> quintessential</span><span style="font-family: Calibri;">
human story. This is what we are here
for. This is what we do. We love deeply. We give this life and our loved ones
everything we’ve got. Each of us has
this same powerful love for our beloved and it is a beautiful thing. We are unified as human beings in our
capacity for this beautiful, deep, soulful love. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri;"><span style="font-size: large;">I
am but blessed to be a witness of, and a party to, a divine example of the depth, beauty and intensity of such love. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: Calibri;">Love prevails and endures.</span><span style="font-family: Calibri;"> </span><span style="font-family: Calibri;">Love is forever. We are not alone.</span></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; font-size: 20px;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: x-small;"><span style="font-family: Calibri;">Psalm 23 </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">The</span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;"> </span><span class="small-caps" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-variant: small-caps;">Lord</span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;"> </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">is my shepherd; I shall not want.</span></span></div>
<div style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">
<span class="text Ps-23-2" id="en-KJV-14238"><span style="font-size: x-small;"><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>He maketh me to lie down in green pastures: he leadeth me beside the still waters.</span></span></div>
<div style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">
<span class="text Ps-23-3" id="en-KJV-14239"><span style="font-size: x-small;"><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.</span></span></div>
<div style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">
<span class="text Ps-23-4" id="en-KJV-14240"><span style="font-size: x-small;"><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.</span></span></div>
<div style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">
<span class="text Ps-23-5" id="en-KJV-14241"><span style="font-size: x-small;"><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.</span></span></div>
<div style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">
<span class="text Ps-23-6" id="en-KJV-14242"><span style="font-size: x-small;"><sup class="versenum" style="font-weight: bold; vertical-align: top;"> </sup>Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the <span class="small-caps" style="font-variant: small-caps;">Lord</span> for ever.</span></span></div>
<!--EndFragment-->Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com18tag:blogger.com,1999:blog-36564024.post-58599495686874263512013-09-02T19:39:00.001-05:002013-09-02T19:39:22.891-05:00Pedi Cancer Awareness MonthAs you all probably already know, September is Pediatric Cancer Awareness Month. It's so much more than that to me. Hans' first symptoms popped up in September of 2006, yet we wouldn't know what we were dealing with for another month. While Hans was in treatment, he never had the typical "Back to School" experience that his friends and buddies had. Each September was a trying time. It was an often heart breaking balancing act of deciding whether to start school or hold back, home bound schooling or classroom, managing various treatments and side effects, while trying to find some routine and normalcy in life. Hans never complained about his lot or the concessions he had to make. But for me, September highlighted the difficulties his diagnosis brought on. I thought of Hans and his struggles each September, as well as each of his buddies who had lost their battles and who wouldn't be going back to the classroom. So many empty spots on the bus:( And finally, September was the month we lost him to his cancer last year in 2012. <br />
<br />
I wanted to share that two friends - Kevin and Carter House (Hans' bud Zachary's uncle and cousin) will be doing The Isabella Santos Foundation 5K this month in Hans' memory. In fact, the race date falls on the first anniversary that we lost him. You can click <a href="http://www.firstgiving.com/fundraiser/KevinHouse/isf-2013-5k-for-for-kids-cancer#.UiUpr-R25vs.facebook">Kevin and Carter's Fundraising Page </a>if you'd like to support Kevin and Carter and their race. Thanks, guys.<br />
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<br />Hans Weberlinghttp://www.blogger.com/profile/16921924196417314677noreply@blogger.com1