tag:blogger.com,1999:blog-67180857719908615972024-03-13T19:19:15.818-04:00Superman SammyA journal of my thoughts, fears and moments of joy as my family learns to cope with my Sammy's diagnosis of T-Cell ALL, otherwise known as LeukemiaAnonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.comBlogger177125tag:blogger.com,1999:blog-6718085771990861597.post-34639835036054981032014-09-13T22:10:00.003-04:002014-09-13T22:10:53.298-04:00Five Years Ago Today....<br />
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<tr><td class="tr-caption" style="text-align: center;">First day of Kindergarten</td></tr>
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Five years ago today, my world changed. My son, a kindergartner of only two days, was rushed to CHAM to begin treatment for High Risk Leukemia. But we had woken up that morning thinking the world was a safe and lovely place. School had just started and we were all excited. Sammy was finally part of it all, a big kid at elementary school...he had so much to learn and so many friends to meet. Except he didn't....<br />
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The rest is history. The blog details the horrors of the first night, the feeling of despair, the heartache and constant readmissions. <br />
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Five years...so long ago....exactly half Sammy's lifetime ago. <br />
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Today I allow myself to remember...I don't need to re-read the blog...it is all still an open wound if I let it be. Only today...only today will I allow myself to dwell on the past. Tomorrow I will get back to living in the present and fighting to kick cancer's ass with awareness and fundraising. I don't do it for Sammy...I do it for those who are fighting and are about to fight. <br />
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Here is a brief look back at then...and a few pictures celebrating how far my hero has come!<br />
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<tr><td class="tr-caption" style="text-align: center;">Just after initial admittance - there was still some hair under that hat!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Neutropenia meant keeping Sammy germ free! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sammy in school...he made it into Kindergarten for about 6 weeks out of the whole year. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Spiderman's Hero</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Superman Sammy at the LTN Walk</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Graduation from elementary school</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Goofing around with moi! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Doing what kids do...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"I just want to be a NORMAL kid" - Sammy 2014</td></tr>
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Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com1tag:blogger.com,1999:blog-6718085771990861597.post-58813512600889470872014-01-15T11:08:00.001-05:002014-01-15T11:08:42.455-05:00Be a Voice for the Children<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/rS5T_3OUoZo" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-15184606143548049922014-01-03T21:14:00.000-05:002014-01-03T21:16:14.438-05:00The Mom of a Survivor....<div class="separator" style="clear: both; text-align: center;">
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Happy New Year! It is 2014 and I had the joy of ringing in the new year with both my lovely sons. This year I had a new depth of appreciation for this moment. I was a mother kissing her survivor and looking forward to a new year ahead of us. I was also grieving for another child who had passed away a couple of weeks before. Not my own child, but the child who had been one step ahead of Sammy all through treatment...who and hair back before Sammy, who showed us how to cope with some of the nasties the treatment offered, and who celebrated being off treatment before Sammy and gave us hope that we would reach that milestone too. He relapsed twice and finally found peace a week before Christmas.<br />
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Cancer SUCKS!!!! It steals babies from their parents' arms after putting them through the hell of chemo and radiation, transplant and therapy. Years are spent fighting this monster, and then it wins...sometimes...often...way too often. Yes, I am emotional because the little boy, the nine year old, the one who always had a smile and a funny joke, is now in heaven and not with his mom. I am emotional because every day I hear about someone being newly diagnosed, passing away, or suffering pain, the likes of which none should experience. I am in the 'circle', as it were. I am 'a member of the club'. I know about these things all the time. <br />
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I have known about these things for years...ever since my son became one of the 36 diagnosed on September 13, 2009. There were 36 more the next day, and 36 more the following day. Each of those day we also lost 7 children to the monster. I knew all of this. I fought for my son and fought for some kind of sanity within the family. We moved on a little...enough to pretend we are a normal family again. <br />
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But now I search for support to raise awareness of the evil that is childhood cancer and the need for funding and government support in research and development. There is a petition right now asking the government to light up the White House <b>gold </b>this September. The purpose is to create as much awareness for our children as has been raised for breast cancer. I am not taking anything away from the need to highlight breast cancer as a worthy fight...it certainly is, but the fact the government turned down last years petition (it had over twice the vote supporting it than were needed) because they...well they didn't actually give a reason....<br />
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At the moment only 4% of government funding goes to ALL childhood cancers. Yet cancer is the number one (disease) killer of children in this country. The treatments most children receive are designed for adults...the chemo and radiation burn and cripple the children. Yes, they remain alive...sometimes, but they face the rest of their lives looking out for 'Late Effects' which generally consist of organ failure, heart attacks, decreased IQ's, and secondary cancers. Only 4% of childhood cancer survivors will escape these late effects! <br />
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So lighting the White House <b>gold</b> will increase awareness, increase government support and maybe increase funding to help meet the ever increasing demand for CHILDHOOD treatment to childhood cancers. If you feel you can vote, please click on the link to do so. It is free and only takes a minute:<br />
<a href="http://www.blogger.com/goog_1386438383"><br /></a>
<a href="https://petitions.whitehouse.gov/petition/display-gold-ribbon-and-or-light-white-house-gold-september-childhood-cancer-awareness-month/qDwkVwSG">https://petitions.whitehouse.gov/petition/display-gold-ribbon-and-or-light-white-house-gold-september-childhood-cancer-awareness-month/qDwkVwSG</a><br />
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Now this is where I am overly emotional right now. I have asked people through Facebook, Twitter and forums of clubs I belong to to sign. I have had many 'likes' but hardly anyone sign the petition, including my own family and close friends. Why? They know what Sammy went through....oh yes, he is fine now...and that is what bothers me the most. I know what is happening in the childhood cancer world....but, unless I get graphic and basically scare the shit out of everyone, they don't get it. They see success. I cannot ever imagine it being any other way...please understand that...but so much is needed to be done to help save children's lives, and my own loved ones don't get it. I am in the very lucky position of being able to fight for others with the happy knowledge that my son is doing okay right now. I have no idea what his future holds, but I can appreciate NOW. What I can't do is move on completely...I know too much.<br />
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Please fight for the children and sign the petition. Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-69122445660927250442013-05-05T13:29:00.000-04:002013-05-05T13:29:58.189-04:00Some Good Times - Life After Leukemia<div class="separator" style="clear: both; text-align: center;">
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Life after leukemia can be wonderful!!!Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-40434980249522995122013-02-16T15:47:00.000-05:002013-02-16T15:48:24.804-05:00Memory Lapse<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Sammy Performing his Science Experiment</td></tr>
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I come to this blog far too infrequently now. Maybe it is because I don't need the therapy it offered during treatment. I do know, however, that many people will be looking for information about life after treatment...so I need to update a little. <br />
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Sammy hardly shows any signs of having cancer. No one at his school even knows about it apart from the teacher and nurse. He would like to keep it that way and we are honoring that request. <br />
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Sammy went sledding for the first time EVER this winter. Finally free of his port, and osteopenia a thing of the past, he was delighted that the weather gave us a ridiculous amount of the white powdered stuff. I watched with great pleasure as he zoomed down hills, bouncing on bumps and flying past trees, all while smiling from ear to ear. I was surprised by how little I allowed myself to worry about this. You might think that, having almost lost my son, I would be crazily over-protective. It has had almost the opposite effect on me...I say, live life HARD! Enjoy all that you can...why not? <br />
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I watched my little guy swim with such power, each stroke a tribute to how he has managed to get his muscles working again, a sense of pride and determination as he sped through the water. I no longer rush to explain to the instructor that Sammy can't lift his arms above his head, or that he needs extra time between lengths. In fact, if truth be told, I am the proud mama watching her son swim at the top of his class...mastering the strokes easily, swimming harder and faster than anyone else. Oh...I am gonna shout that one from the rooftops :)<br />
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Academics are another area of immense pride. Sammy is at or above grade level and demonstrates an amazing ability to retain information. He was the proud recipient of an A+ for his Science Fair project. He loves to read, has mathematical understanding, and can articulate his thoughts incredibly well. In addition, he has a rare drive to really achieve in school. He is responsible and often reminds me to sign things. I'm not sure where he got that last one from. <br />
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Imagine my surprise, as we were sitting together today, Sammy showed that he really didn't remember something. I had asked him about the pain he felt with his neuropathy. He had gone through most of the treatment years on Neurontin for the excruciating pain in his feet. But Sammy floored me when he casually shrugged and said he didn't remember any pain like that. My jaw dropped. I thought he would never forget it. He cried so much with it. I cried so much with it. Yet, it may as well never have happened. Thankfully, Sammy has moved on and left some things well behind.<br />
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Today we are off to enjoy the sunny skies of Florida. We have not been on vacation since the trip to <a href="http://www.supermansammyz.blogspot.com/p/make-wish-trip-to-disney.html">Disney for Sammy's wish</a> three years ago. We are very excited to all be happy, healthy and ready for some fun in the sun! <br />
<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-14480229330294101062012-12-31T16:03:00.002-05:002012-12-31T16:03:36.279-05:00Merry Christmas<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnb_CeyliFfeXdmNm2M-yyD1eFtYuLo5lL9N9X9-d32LBWBXPwwn3ZGc6eLig16WxAyOVcQaxq-OsTrfzcB5vt7iLVXOpaaXEVJBipRTQbqp75fT6Zhgw3RM7GcGmZEPuwru-V6IB8gks/s640/blogger-image-1209288827.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnb_CeyliFfeXdmNm2M-yyD1eFtYuLo5lL9N9X9-d32LBWBXPwwn3ZGc6eLig16WxAyOVcQaxq-OsTrfzcB5vt7iLVXOpaaXEVJBipRTQbqp75fT6Zhgw3RM7GcGmZEPuwru-V6IB8gks/s200/blogger-image-1209288827.jpg" width="148" /></a>It has certainly been a fabulous Christmas this year. For the first time since 2008 we had a family holiday without the Cancer Monster in the room. Of course the monster lurked under the bed still, it always will, but we had a wonderful time and ignored the beast almost completely! <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrure4gs-ZK7Ynk1CbwYMveyiizS_3RNlsA1dQearR3fNJn7HdKR3tBChJemKJ6IJ-ElEvVaKdfpU-qpt2bgQLXM5033wkKj0pWfWMortgKrCe-sX7jUk1Lhmx6n52AETEJ7r7LydfGQ4/s640/blogger-image--724928808.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrure4gs-ZK7Ynk1CbwYMveyiizS_3RNlsA1dQearR3fNJn7HdKR3tBChJemKJ6IJ-ElEvVaKdfpU-qpt2bgQLXM5033wkKj0pWfWMortgKrCe-sX7jUk1Lhmx6n52AETEJ7r7LydfGQ4/s200/blogger-image--724928808.jpg" width="200" /></a><br />
I love decorating the tree. I don't get to do the chic, color-coordinated tree of my designer dreams; instead I have the most spectacular tree filled with children's ornaments and happy memories. My tree has history adorning it. My tree is a family tree.<br />
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Our week off was very family oriented. We began with a trip to New York City to see <i>The Grinch</i> at MSG. It was so much fun. The kids enjoyed the thrill of being in the city and soaked up the spectacle of the musical numbers. I got a thrill out of being back at MSG having been there a week earlier for the 12/12/12 Sandy Benefit Concert. Then there was our visit to the tree at Rockerfeller Center which was magnificent. The kids had seen it before, but had been too young to remember. We were finally doing the trip we wanted to become a kiddy tradition every year...finally. I was acutely aware of how lucky we were that we could start our tradition now. <br />
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Christmas Day was a family affair once again. Cousins and grandparents joined in the merriment. The boys loved their gifts from Santa, and I was rather impressed with myself for cooking the roast lamb to perfection....I'm not a cook so I toot my own horn on that one! <br />
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Boxing Day (as I will always call it being British) was quiet and a chance to hang out together without any agenda. A little shocked by how quickly Christmas comes and goes, I settled in to enjoy my sons playing with their new toys and joining in the odd board game or two. I ate the leftovers...the plebeians chose not to for some inexplicable reason!!! Crazy!<br />
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Being a couple is not easy when you have kids. Our couple time had become non-existent during the treatment years and we were finding it very hard to get our grove on as a partnership in anything other than medical and discipline control. Thankfully, Nana and Poppa came to the rescue with a precious gift, the gift of time. They took the boys for a two night sleepover. Talk about win-win! The boys were very excited and I came in after dropping them off to a house filled with a roaring fire and candlelight. Some much needed time together was spent actually talking to one another about us and our interests, rather than the kids. Note to self...do this more often! <br />
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Another big event was Sammy's first ever sledding day. Although he was given the all clear last year, there had not been any snow...go figure! Finally, we set out, all bundled up, to watch as our precious children hurled themselves down steel and slippery hills, crying out with delight at the thrill of feeling the snow kiss their cheeks and the wind whiz past them as they hit top speed just before reaching the tree line :-) I was not concerned, protective or afraid for them. I loved it! They were free! They were kids! They were happy, and so was I. <br />
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There were many jobs I planned to do over this vacation, and I must admit they did not get done. They await my attention, laughing at my procrastination. But I don't care! I laugh back at them because I have had a Christmas to remember for a lifetime. My boys were happy and healthy (ignoring the panic of the small spots appearing on Sammy and the rush to CHAM to check him out) and I got a chance to feel like we could really doable normal things families do during the Holidays. We knew the cancer monster was around, but he was well hidden and a little scared to show himself with all the laughter and merriment filling the house. <br />
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So, I wish you all a very Happy New Year! May we find the cure in 2013 and bring joy to thousands of families fighting monsters. <br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com4tag:blogger.com,1999:blog-6718085771990861597.post-46302300970287151722012-11-22T10:10:00.001-05:002012-11-22T10:11:49.851-05:00ThankfulToday is Thanksgiving Day. An American holiday which I have celebrated over the past 15 years. I enjoy going to my in-laws and seeing my extended American family. I miss my British family, but it doesn't his me as hard as Christmas, the holiday I have celebrated all my life. <br />
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Thanksgiving is a nice holiday where people gather and enjoy one another's company. It is, in fact, a lot less commercial than Christmas, which I appreciate! But the best thing about Thanksgiving, for me, is that I get to really be thankful. I am one of the luckiest mummy's in the world. I have both my boys with me....and I almost didn't!<br />
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You know about Sammy, but Jack was no walk in the park either! He decided to come out after just 24 weeks gestation, so I fought to keep him growing inside me with Magnesium, a Terbutaline pump and months of bed-rest. We made it to 36 weeks and only a few days in the NICU after some complications from the emergency C-section! At five years old, Jack was diagnosed with Bacterial Meningitis. He had an emergency lumbar puncture and, after 10 days in hospital, we administered medications via a picc line in his chest. He and Sammy both have neck and chest scars from their lines.<br />
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With our crazy battles to keep our children healthy, I <b style="text-decoration: underline;">really</b> do appreciate spending today with my sons.<br />
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<li>I am thankful for the excess laundry I do with two boys who can always find the dirtiest place to play</li>
<li>I am thankful that I get prodded awake in the wee hours of the morning to tell someone they are okay after a nightmare</li>
<li>I am thankful that I have to say no to social events because my kids need me for one of their events</li>
<li>I am thankful that I have been known to have a mini-meltdown as I work out how to get my kids to tidy up</li>
<li>I am thankful that I can hardly type because Sammy has just sat down next to me, pinning down my right arm and chattering away as he plays his allotted time on the Wii </li>
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There are so many other things I take for granted too often these days but I am reminded just how lucky I am today. I am with my boys, I'm about to make a dish to take to the family gathering, and I am complete....not sane by any means (but that is because I'm a mom). </div>
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<b> Happy Thanksgiving one and all! </b><br />
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Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com4tag:blogger.com,1999:blog-6718085771990861597.post-43942685029766547352012-11-04T12:56:00.000-05:002012-11-04T12:56:59.237-05:00Pre-Existing Conditions<div class="separator" style="clear: both; text-align: center;">
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This is a very difficult post for me to write. Mainly because I know most of those reading it will already know the pain of having a child with cancer, or be a cancer warrior themselves. I don't need to 'tell' you how things feel!<br />
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But for me, I am getting something off my chest...you know I use this blog to do that. And, sadly, this post does not apply just to cancer, but all conditions which may have lasting effects on a person, no matter how old they are, for the rest of their life. I include Sammy's brother, Jack, in this post. He has asthma. He has a pre-existing condition, just as Sammy does. I am also including anyone with Lupus (my lovely mom), Celiac's disease (my wonderful friend), Crohn's, Diabetes, etc.... There really are too many to mention. BUT, I guarantee, you will know someone who suffers from such an illness. <br />
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So what is on my mind? Well, there is a big election coming up, as you know. I am well aware that everyone will have their own political views (we live in a nation that grants us that freedom), and I would never seek to insult anyone for their personal viewpoints. I do, however, want to share my thoughts. I am sure many of you already know where this is going. I am putting my personal faces to this argument, but you could easily think about someone you know. <br />
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People who have fought and survived cancer have a much higher risk of getting a secondary cancer due to the treatment that saved their lives in the first place. Chemo and radiation are toxins designed to kill! Yet the benefits of saving a life immediately, far outweighs the concerns down the road. Medical research has allowed doctors to find ways to administer the least amount of toxins in the most effective way. But almost all the childhood cancer medicines are over 50 years old, so they are still exceedingly outdated and very dangerous. <br />
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Sammy will be monitored for cognitive effects. His IQ may well drop considerably in a few years. He will also need PT for most of his life to maintain his muscle and skeletal strength. Every major organ has to be checked yearly to asses for deterioration. His heart may give out in his thirties. His reproductive abilities may no longer be an issue....he may be sterile. <b>He is 8</b>. He has kicked stinking cancer and this is what he will face<b> forever.</b> <br />
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If a certain party is elected into national and local governments, funding for research to continue to improve toxicity in treatments will stop. In addition, <b>Sammy will not be able to get insurance</b> for any of the aforementioned issues once he is no longer on our insurance plan. If he relapses, it is likely he will exceed the lifetime cap on our insurance (not that we have one right now, but it will come back), and we will not have the means to provide the treatment needed to save his life again. We earn too much to get financial assistance, so we would be faced with bankruptcy. (Fine...if it saves his life...but all it will mean is we are broke and <b>still no coverage</b>!)<br />
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<tr><td class="tr-caption" style="text-align: center;">Radiation</td></tr>
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Jack may grow up with very few issues with his asthma. He does, however, need medication for it and frequent visits to a pulmonologist. While this may not break the bank, if he should suffer an attack and need hospitalization, <b>nothing</b> would be covered. That has the potential to leave him without adequate treatment or crippling bills. I would sell my soul to help, but WHY should my children have this to face as they grow up to become the <b>new generation of America</b>? <br />
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Sammy's first hospital visit after diagnosis cost over $100,000. We then spent most of the first year in hospital (averaging about $150,000 per stay) followed by two more years of treatments. Sammy will go to the clinic for the rest of his life. No insurance....<b>????</b><br />
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I am a mother fighting for the lives of her children. Sure, they will be grown up by then...but I am fighting NOW to keep them alive and safe in their future. It boggles my mind that I even have to....but I do! November 6 is my birthday. I hope I don't spend it morning the future of my children. <br />
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I do not fight alone. Adults and children are affected by the threat of punishing people with pre-existing conditions. Here, a hero of mine, Mike McCready, explains why the fight is so important:<br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-87872301477562159222012-10-20T18:50:00.000-04:002012-10-20T18:50:28.538-04:00Fun TimesHaving spent the last post bemoaning the surprise struggle the first year off treatment throws at a family, I felt it fitting to also show how much fun it can be. We have been busy living, as well as working out kinks, so here I would like to offer a glimpse into the good times:<br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-2455868526959081772012-10-18T20:44:00.000-04:002012-10-18T20:45:56.454-04:00ONE YEAR CLEAR!<div class="separator" style="clear: both; text-align: center;">
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Today marks the one year anniversary of Sammy officially being considered off treatment and done! It was quite a low key day compared to the end of treatment celebration, but I think it should have been. We are moving on and growing in strength, wisdom, and understanding. We are entering a new phase and anxiously excited to be doing it. <br />
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Sammy went to the clinic with Brian and weathered the shots he needed. There are not many more shots left until he is bionic....well, immunized again at least! Sammy will not be going to the clinic once a month now. He has graduated to once every three months. <br />
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Knowing me, I am going to have my mad moments where I NEED to contact Dr. C and check in about <i>something</i>! Going from weekly to monthly blood draws had given me funny turns occasionally. I know I will have a day of utter conviction that the cancer might be returning and panic beyond control because Sam won't be going to the clinic for weeks. That's just me...I'm gonna do it...I know I am....I just have to work on managing it :)<br />
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Back to the good news. (You have noticed, I am sure, that I just ranted on about my future panics which means I am panicking already....darn self-analysis!) Anyway, Sammy is excited to be invited to a CHAM party in November to celebrate the children who are DONE! We are celebrating quietly (apart from Facebook and Twitter spreading the word) by having a family dinner at Sam's favorite restaurant over the weekend. We are happily making less of a deal.<br />
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So, what might I wish I had known about the first year off treatment? Oh my! There is so much!<br />
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<li>Families hold together during treatment but fall apart once it is done! - We have fought tooth and nail to remain a unit. It has been incredibly hard. Communication is key; acknowledging the problems and spending time working them out. We are coming out of that fog now, but it was a close call at times. Statistically, cancer does not increase the risk of families splitting up, but the aftermath sure isn't fun!</li>
<li>Parents and siblings also suffer from PSPD - I was a MESS for a few months after Sammy was done with treatment. I fell apart and became lethargic and disengaged from the world in general. I knew why, but I still couldn't do much about it. I did visit counsellors and even tried meds...not a good option for me as they actually sent me more squiffy! I took myself off them and decided to work on picking myself up in other ways. I'm fine now, but it was hard. Thankfully I am blessed with an amazing husband, a brilliant mom and in-laws and fabulous friends who took care of me and cut me some slack for being less than I should have been. </li>
<li>It is hard to let cancer go - you would think I'd be glad to see the back of it and just run away from anything that reminded me of <i><b>those years.</b></i> No! I turned into an obsessed freak! I had to do WHATEVER I could to beat cancer and find a cure. I blogged, Facebooked, and Tweeted all the reasons why everyone should be fighting with me. It was a battle I had to face, my son will be affected forever...and we don't yet know to what extent...so I just kept on going with the cancer <i>thing</i>. </li>
<li>Sometimes, despite having every reason to savor every precious moment of life, you don't! - Sitting in the hospital during the very first weeks of treatment back in 2009, I couldn't even read a magazine as it seamed so trivial and, well, <i>useless</i>. I hated how so many things were taken for granted and misused or neglected. I noticed all the disparities in the world and resented those who didn't appreciate what they had. I don't do that so much anymore! I don't always appreciate what I have. I am even guilty of brushing Sammy off so I can relax and enjoy some time on the computer or doing 'my own thing'. I have started taking some things for granted again! </li>
<li>I DO still stare at my child while he is sleeping a weep silently as I think about all he has gone through. I then do the same with his brother who, as a sibling, had his world changed forever without the 'fame' and support. I cry for my children a lot. Sometimes it is with relief ... sometimes regret that things had not been better. </li>
<li>Eventually the crap gets better! <b>This one is important</b>. We are not the same family we were back in 2009. Not by any means. We have our skeletons and we all probably should see a good shrink...but we are okay. We are stronger now. We are ready to look forward and honor the past but not dwell in it. </li>
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ONE YEAR CLEAR means so many things. We are hoping to be a family that gets to 'five years clear'. That is the goal. After that...well, we will enjoy that when it happens. </div>
Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com1tag:blogger.com,1999:blog-6718085771990861597.post-48019279292261672342012-10-02T21:25:00.002-04:002012-10-02T21:27:13.034-04:00Pearl Jam - The Sammy Bracelet!<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Pearl Jam is my escape from everything to do with cancer. But at the most recent show, over in Missoula, Montana, I mixed up the two worlds a little and came out with the experience of a lifetime for this fan! I am a big Mike McCready fan...he's the lead guitarist. I was at the show with very good friends and had tickets for a "meet and greet" before the show started thanks to said friends working some magic. The show was in the home state of another Pearl Jam member, Jeff Ament., and was in support of Senator John Tester. So it had political leanings and I wanted to do a final last hurrah for <b>Childhood Cancer Awareness Month. </b></span><br />
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<span class="Apple-style-span" style="color: #333333; font-family: Times, 'Times New Roman', serif; line-height: 17px;">I wore my Superman Sammy shirt and bracelet because I wanted to talk to Tester about healthcare and share with him about Sammy having leukemia and thanking him (and reminding him to keep going) with the healthcare stuff). Anyway, I'm next to Mike but behind him and he turns around and looks straight at my shirt and goes to shake my hand. My bracelet was too big and had fallen over part of my hand so he got it in his and looked at it...I quickly explained what it was and he gave me the BIGGEST hug and then took the bracelet to wear....this made an incredible night the most special moment for me. My Sammy's bright orange band on Mike's wrist at one of the best shows I've ever seen! I can't put it into words properly. :)</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="color: #333333; font-size: 13px; line-height: 17px;"><br /></span></span>Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com7tag:blogger.com,1999:blog-6718085771990861597.post-62171618996905043392012-08-05T22:23:00.003-04:002012-08-05T22:23:40.069-04:00Pediatric Cancer - Some Hard Truths<div class="separator" style="clear: both; text-align: center;">
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Well, I was going to post about the wonderful summer we've been having. I have lots of amazing photos of Nana's visit, Sammy at camp, Jack being a baseball hero, and Brian having a blast at his birthday party. Instead I am going to write about cancer....well, go figure, I thought I was done with that! </div>
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Pediatric cancer kills an average of seven children a day in the US alone. This weekend, at least 14 children died. One of these children was called Cody. He was a beautiful little boy who fought long and hard, but cancer won tonight as he slipped away. Read about Cody <a href="http://www.codybrasich.com/">here</a>.</div>
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G is a friends of Sammy's who I have mentioned on numerous occasions. He is now awaiting a bone marrow transplant which was postponed because it is becoming increasingly more difficult to ensure he is in remission after relapsing at the beginning of the year. He is a fighter. He turned eight yesterday. He faces the battle for the second time and will have an unimaginable few months post-transplant IF he can get to that stage.</div>
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Then Sammy is another child who faced the beast. He won. So far. Yet, as often happens, he now faces depression and sleepless nights as he fights the demons only a survivor has to face. At eight years old, he is coming to terms with his own mortality, he questions why 'he' had to get cancer and waste over two years of his life? He asks how cancer starts and why it happened to him? Did something go wrong? Did he do something wrong? It has taken hours to get Sammy to go to bed..and I am not sure he is done yet. He cannot rest and is melancholy even when fun is happening. Inside his bright mind are thousands of memories eating away at him. Right now he is reliving it all and we cannot chase the boogie man away. </div>
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Let's face it...cancer cannot really be cured. That is why Cody's parents grieve for him, G is fighting for his life, and Sammy gets blood drawn every month. How does a child 'get over' that? Why are 46 children diagnosed with cancer each day in the US and yet so little is done to find a cure? </div>
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Be honest, did you know that a gold ribbon stood for? <b>Pediatric cancer</b>. Do you see them on the gear of football players like you see the pink ribbons? No. Childhood cancer is killing our children, tearing apart families, leaving eight year olds with Post Traumatic Stress Disorder, and most people do nothing. Not because they are mean, but because they do not know. </div>
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I have written about this many times before. I have asked for donations (and will again). But today I ask you one thing only.....if you have Face Book, Twitter, or any other social networks, or if you meet a friend and say hello....PLEASE tell them about childhood cancer. Let them know the statistics 46/7 and spread the word. </div>
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The happy moments will be shared...they are wonderful. But tonight I grieve for a little boy I did not know except through FB. But there are many more grieving families out there tonight. This post is in memory of a beautiful young boy, in honor of G and Sammy, and the thousands of children fighting for their lives tonight. xxx</div>
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<br /></div>Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com5tag:blogger.com,1999:blog-6718085771990861597.post-28177962772644081172012-07-04T14:50:00.002-04:002012-07-04T14:53:12.718-04:00Happy July Fourth!<div class="separator" style="clear: both; text-align: center;">
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Today is a day to celebrate for many reasons. Naturally, the fact the Colonies decided to declare independence from us Brits and go on to win the Revolutionary War is one reason...and I <b>do</b> celebrate :) <br />
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Another reason is that Sammy is up and running, joining in the fun and play, doing all the things kids without cancer do on this special holiday. <br />
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I am thankful, and send much love to those who are still fighting. May everyone have reason to celebrate on this sunny July 4th! xxxAnonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-47453232029297184152012-07-01T21:35:00.002-04:002012-07-01T21:36:36.615-04:00The Health BillIn 2014 Sammy will be 10. He won't be thinking about health insurance, and hopefully, we won't be worrying about his future health! I am not going to get political, but one good thing that has come from the last four years has been the fact that my son, who through no fault of his own got cancer, will now be able to get insurance despite having such a pesky ol' pre-existing condition. <br />
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Had this bill not been passed, Sammy, like millions of other children with pre-existing conditions, including his brother who has asthma, would have paid through the nose, or been completely denied health coverage! Imagine telling a survivor to cover their own ass because they had cancer as a child!!!!<br />
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I am ecstatic about this. I could argue against other decisions made by the administration...but I could with any administration, that's life. As I said, I'm not getting political, I just want to celebrate this milestone and acknowledge all the beautiful children it will help in the future. <br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com3tag:blogger.com,1999:blog-6718085771990861597.post-16674052945375956812012-06-03T11:10:00.000-04:002012-06-03T11:10:59.030-04:00Childhood Cancer Awareness<div class="separator" style="clear: both; text-align: center;">
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Well, I know some of you are going to think I'm ungrateful and should stop whining with this post...just be grateful for what I have, and shut up! But I can't. I really can't. Right now, as I type, Sammy is putting together his Millennium Falcon Lego set all by himself and looks adorable with his shaggy long blonde hair and unfairly long eyelashes. At school the other day, he swung from the monkey bars, showing off his latest accomplishment, hanging upside down and then pulling his own body weight up with his new-found upper body strength. It is like cancer never happened...except it did...and Sammy is a normal boy again.<br />
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But...and this is where you may want to tell me to shut up moaning...if I hear one more person tell me I can put cancer behind me, move on, and try to forget about it all, I may just punch them! A little harsh I know, but here is why I can never forget or put it all behind me:<br />
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Yesterday was my anniversary. I did not spend it with my family, but at CHAM 9. Yes, many of you will remember that is the floor the cancer children go to for treatment and for <a href="http://supermansammyz.blogspot.com/2010/04/anc-zero.html">neutropenia/infections/complications etc</a>. It is not the day clinic. It is the floor Sammy spent most of his first <a href="http://supermansammyz.blogspot.com/2010/01/hospital-stay-and-home-nursing.html">year on</a>, mainly because his body was so ravaged by the chemo, he was constantly <a href="http://supermansammyz.blogspot.com/2009/10/neutropenia.html">neutropenic</a>. <br />
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I was not at CHAM 9 with Sammy, He doesn't even know I was there because I was visiting G, Sammy's cancer buddy. The little boy who had the same leukemia as Sam and had the same treatment. He was our guide as he started treatment a couple of months before. He got better and showed us how great being done is. Now he sits in CHAM waiting for his counts (ANC) to get above zero. He is neutropenic from the chemo of his new protocol. He has <b>relapsed</b> and needs a <b>bone marrow transplant</b>. He has leukemia again. <br />
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As I stepped out of G's room to give his some privacy for a moment, I noticed the mom of a very special 4 year old standing by the nurses station. S has a <b>brain tumor.</b> She has had surgery and probably needs another as only 2/3 of her tumor could be removed. She has a scar on her bald head from ear to ear. She is doing well but her cancer is very rare so everything is unknown. There are no statistics to comfort her parents. Not that anyone can go by that as G shows. <br />
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I know S and her family through the wonderful families at school. It was her mom's cousin who helped organize all the <b>SuperSammy t.shirts </b>for his <a href="http://supermansammyz.blogspot.com/2010/09/its-been-while.html">fundraiser</a>. Now she has made up the same shirt, in a different color, for S. <br />
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We try to make cancer go away for Jack and Sam. I know it will be with them forever because it was such a traumatic time in their lives. However, they deserve to put it behind them and live happily ever after. <br />
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As adults, we can do the same. But how can we ignore G and S? How can the faces of those who lost their battle ever leave our memories....and why should they? We honor them by <b>fighting to end cancer.</b> We honor Sammy by fighting to end cancer, even if he never experiences it again. We cannot turn away. We know too much. <br />
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<u>Awareness is key</u>. The more people who know about childhood cancer (any kind; I am way beyond just leukemia now), the better. Not because they might donate money to a cancer charity which conducts research (although it helps) but because they might tell a few people and raise awareness too. <br />
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I am not asking for anyone to live with daily thoughts about children with cancer. I am hoping more people come to understand how 49 children are diagnosed each day in this country, and 7 will die. Then, maybe they won't tell me I can forget about it all and move on. Maybe they will ask how they can help children with cancer because they realize I may well know what they can do! <br />
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Here is Sammy's Team page for his <b>Walk for the Cure.</b> If you would like to join his team, make a small donation, or pass it on to friends, you will be helping to make the difference and save lives. <br />
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<a href="http://pages.lightthenight.org/wch/Wstchstr12/supersammy">Team SuperSammy</a></h2>
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-40161898603521790602012-05-19T10:34:00.000-04:002012-05-19T11:08:22.204-04:00Family FunSo much has happened lately, I really don't know where to begin. Basically, We have been enjoying life while keeping a watchful eye on swollen glands. I guess I should start with that so no one is left worrying. <br />
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Sammy's glands are 'normally swollen'...just like an other kid....according to Dr. C who is the head honcho of Sammy's doctors. All is good with Sam. He remains in remission and his blood work is clear. His running is improving and people constantly comment on how great he looks. We are very fortunate and inwardly celebrate this almost every minute! <br />
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Sammy celebrated turning 8 recently. I cannot believe he is growing up so quickly. Where is the time going? He has wanted his own pet for some time so I thought a fish might be fun. Here is the final version of that seed idea:<br />
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The cat likes them very much indeed!<br />
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And Sammy is learning how to take responsibility for his 9 fish:</div>
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Sammy had a wonderful party with his friends at his usual place...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJmsaX9nmsWEBUlK20X3TsOM3MNX5H5Bnu-rZmE5oK4NqBU1Y4Gx0_tP6c38bPi9CNJxcut8X3NxUX1TzPNVsS_qRNAZqKuacArx_b1DbhUdhdhQkFMCfCe_e7HXQjefa9WkmEPSJaIII/s1600/IMG_3038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJmsaX9nmsWEBUlK20X3TsOM3MNX5H5Bnu-rZmE5oK4NqBU1Y4Gx0_tP6c38bPi9CNJxcut8X3NxUX1TzPNVsS_qRNAZqKuacArx_b1DbhUdhdhQkFMCfCe_e7HXQjefa9WkmEPSJaIII/s320/IMG_3038.jpg" width="240" /></a></div>
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And dinner at his favorite Japanese restaurant!</div>
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We also celebrated Jack and Sammy's cousin's first birthday. It was wonderful to see the kids playing together and know that Sam could keep up and just join in the fun without having to worry about anything. <br />
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Jack has been very busy also. Baseball is in full swing (pun intended) and we all had fun at the opening day celebration... see<a href="http://supersibjack.blogspot.com/2012/05/baseball-and-stuff.html"> here</a> for news on that. </div>
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I was given a delightful Mother's Day. Having the luxury of a long lie in, we all headed off to the beach as a family, dog included, and walked along the rocks to the tide pools. I was in my absolute element, being a total beach-lover. I actually love the walks and views more than just sitting getting a tan....and Mother's Day was glorious! We spotted birds, found sea-creatures and enjoyed the beautiful views. The kids played on the rocks and I daydreamed about the beach houses dotted along the coastline. Heaven!</div>
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We have really had some great times recently. Pushing worry to the back of our minds was very doable and we are glad that we were able to. Of course, all this activity (and there is more I shall share in later posts) means my house is a total wreck! I like having no time to take care of it though....nowadays it is not because we are spending weeks in hospital, instead it is because we are doing things, volunteering for things close to our hearts, and having the life we had to put on hold for a few years.Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com4tag:blogger.com,1999:blog-6718085771990861597.post-76470105040418272652012-04-30T20:44:00.000-04:002012-04-30T20:44:20.912-04:00Leukemia - On Our Minds Today!<div class="separator" style="clear: both; text-align: center;">
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So we finally had the "moment". The one I knew we would have...eventually. I just didn't realize how comfortable I had got until it happened. So you're not panicking, Sammy is okay. I am a little shaken and firing on major adrenaline with a massive dose of the 'oh craps' thrown in. Here is why:<br />
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About three days ago, Sammy came to me with pain in his neck. It was the side his port had been on, so I figured he may have some aches at times or he was sore from all the playing he has been doing lately. As I felt his neck, the hairs on the back of my neck stood on end..Sammy had lumps down both sides of his neck. <br />
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I had watched Sammy's neck develop swollen glads three years ago and, being completely ignorant of the signs and symptoms of leukemia, I did not rush off to the doctor. We all know how that turned out. This time, I still did nothing. I observed Sammy and decided to wait it out a little as there is a lot of yucky sickness going around. <br />
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Today, however, I couldn't ignore my nagging feeling and I asked the school nurse to check Sam out. She felt that his glands warranted a trip to the pediatrician. Now, most teachers would call, make an appointment, and keep teaching. Thankfully most teachers have not had a child with leukemia. When a nurse says go, I go! It was lunchtime and I got an appointment immediately (a perk of being a survivor) and my Principal wonderfully agreed to get my class covered so I could get back home to numb Sammy's finger ready for the blood draw.<br />
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I think a lot when I drive. This drive shook me up bad! I relived the panic and fear just after diagnosis. I tried to push away dark thoughts about bone marrow transplants, radiation and more bloody steroids. Leukemia is harder to get rid of the second time around. Fear is a powerful emotion. <br />
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One of the toughest things to do is pretend all is well when you are crying inside. Moms have perfected this art when it really counts. I had to really conjure up my 'inner mom' and chat with the kids and pretend all was routine....Sammy still considers random blood draws routine.<br />
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The bottom line, after a very long doctors visit and through work-up: Sammy may have a virus as his counts are a little off but nothing to make one scream off into the sunset with manic desperation. The doctor did measure Sammy's lumps, and we have to go back in two weeks to see if they have changed in any way. <br />
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The next two weeks are going to be very long. It is Sammy's birthday on Thursday and we have his party on Saturday. All has to be fine and jolly. I reckon I can keep a stiff upper lip and keep myself almost rational about all of this. <br />
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Sammy looks and acts well. He has no other signs of relapse. He recently saw his doctors at CHAM and he was 'all clear' then. I have to hang on to this. I WILL hang on to it. Sammy gives me strength so I am in good hands. I'll keep you all informed.Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com19tag:blogger.com,1999:blog-6718085771990861597.post-69513362745817063362012-04-23T20:41:00.002-04:002012-04-23T20:41:35.079-04:00Immunization Schedule - Again!<div class="separator" style="clear: both; text-align: center;">
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Sammy had the first of his immunizations last Thursday. He has to have everything again and the immunization schedule is quite aggressive. The poor guy had to have three...ouch! I have to say I put up a fight. I will immunize my kids as the alternative (getting the diseases) is worse, but I strongly hold out against bombarding children with multiple shots. On top of that, one of the shots was the MMR (Measles, Mumps and Rubella) that has caused the uproar about its possible connection to autism.<br />
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I was not gentle with Brian whose turn it was to go to the clinic. I was strongly voicing my objections down the phone at him but the outcome stayed the same. The CHAM doctors feel that, because Sammy has absolutely no protection from any of the diseases, it is better to do as many as they can, especially as he is in school. I get it, I really do...but I don't have to like it!<br />
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Sammy was not a happy bunny either. He was brave (isn't he always) and took the shots well. But the muscles were very sore afterwards and that is when he fussed the most. He did go straight to school afterwards, and played well at recess. I tried not to be a helicopter mom and stayed away, just checking in with Mrs. F, his teacher, now and again. <br />
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Each visit will entail an average of three shots for the next 5 months. This stinks as, once again, Sammy has to be subjected to needles. He was most disgruntled that he couldn't have the shots into the vein or into his port! My how far we have come! Here is a seven year old preferring IV's and 'hooked' needles jabbing his chest! Chemo kids are TOUGH!!! <br />
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Good news on the blood-work...all is as it should be. We are not looking at relapse so I cannot complain.<br />
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We learned of a new SuperKid at Cham, one connected to us through the families at our school. SuperSophia is battling a brain tumor. She has had the Superman Sammy t.shirt redone in pink and purple - the Dora colors, and now CHAM 9 has a new t.shirt to rock! Please send Sophia all your love and prayers. She has just turned 4 and is a beautiful princess with the bravery of a lion! <br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com0tag:blogger.com,1999:blog-6718085771990861597.post-39098476025104623442012-04-03T20:03:00.001-04:002012-04-03T20:04:15.657-04:00Changes<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxURSRtuE11grY-cZSvVY-pDy0wQEywefs7QY9BW9QEBjYQe9LLzgSmmb_UXAFlMl1-PNl9D87jmvpi_bHMxdtlV1RXJn_7xXRCcTkJzaomw95gXQriZs7nruceRfNfpl0OO12TmRjqA/s1600/IMG_2755.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxURSRtuE11grY-cZSvVY-pDy0wQEywefs7QY9BW9QEBjYQe9LLzgSmmb_UXAFlMl1-PNl9D87jmvpi_bHMxdtlV1RXJn_7xXRCcTkJzaomw95gXQriZs7nruceRfNfpl0OO12TmRjqA/s320/IMG_2755.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sammy with his crab at the school puppet show</td></tr>
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Things are looking up! Sammy has realized he is improving, and the effects of chemo are not getting the better of him. Yesterday, while we snuggled in bed, Sammy began talking about Easter and all the fun things he is looking forward to. He hopes the Easter bunny will be kind to him even though he is getting older. Then, out of nowhere, he suddenly remarks,<br />
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<blockquote class="tr_bq">
<b>"Oh my! This will be my first easter off steroids...no yucky feeling or medicine. Oh I'm so happy! I can have Easter without cancer!" </b></blockquote>
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Sam is so glad to be done and I'm really happy he is enjoying this time....he deserves to! He also noticed something about his appearance as he was getting ready for school. He came running out of the bathroom and shouted,<br />
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<blockquote class="tr_bq">
<b>"My head has shrunk! I have a really small head! Is it possible that I have a shrunken head?" </b></blockquote>
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The concerns were so genuine, I had to contain my laughter. You see, Sammy had noticed what I had seen for a while; the moon-face created by the steroids has completely vanished. Sammy's hair is also long and soft again. The old Sam is back, and there is no trace on his face of past battles. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrf_yXYw_KdWmElaVwoyjyKm622bb36Hxi1hqz9Mvd_7tw5HRmqciTmMN52T6gD-IHK7Xr4JMjCGTGjAvDsPeZKadkVk87wgqoA4voGydswfpO01oGd-WItevprWGvrLR_DJqvVxRD0w/s1600/IMG_1433.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrf_yXYw_KdWmElaVwoyjyKm622bb36Hxi1hqz9Mvd_7tw5HRmqciTmMN52T6gD-IHK7Xr4JMjCGTGjAvDsPeZKadkVk87wgqoA4voGydswfpO01oGd-WItevprWGvrLR_DJqvVxRD0w/s320/IMG_1433.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mr. Moon-Face - the chemo changes Sammy's features dramatically</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com6tag:blogger.com,1999:blog-6718085771990861597.post-61518651620474912842012-03-30T22:12:00.000-04:002012-03-30T22:13:26.985-04:00Immunizations - Gone!<div class="separator" style="clear: both; text-align: center;">
<a href="http://expresspharmacy.com/wp-content/uploads/immunization.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://expresspharmacy.com/wp-content/uploads/immunization.jpg" /></a></div>
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One of the things we were told, way back in the <a href="http://supermansammyz.blogspot.com/2010/01/i-recently-discovered-that-effects-of.html">midst of treatment</a>, was that Sammy might have to have some immunizations re-done as chemo for leukemia can wipe them from the system. Given that my little boy had been hospitalized pretty much for a year with a WBC of zero, we expected him to need quite a few. Sometimes I am just not a big fan of being right!<br />
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During the <a href="http://supermansammyz.blogspot.com/2012/03/six-months-post-treatment.html">last visit to the clinic</a>, Sammy had blood drawn to check for antibodies and the need for more immunizations. Low and behold, we discovered that he actually needs <b>every single one</b> of them done again! He has no coverage...nada! There are a few reasons I am '<i>slightly miffed</i>' about this:<br />
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<blockquote class="tr_bq">
1. My poor son has to endure more pain and fear, as he will have to get shots each visit until they are completed (I refused to have them all done at once). </blockquote>
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<blockquote class="tr_bq">
2. I have to tell Sammy that celebrating the end of treatment did not actually mean no more <i><a href="http://supermansammyz.blogspot.com/2009/10/er.html">yucky stuff</a></i>! He is going to be heartbroken and very scared.</blockquote>
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<blockquote class="tr_bq">
3. I am going to re-go though all the angst of immunization safety: I agreed to immunize in the first place but was terrified of the MMR. Ironically, it was just days after the MMR shot that Sammy was in the ER with strange symptoms...okay it turned out to be cancer, not anything caused by the MMR, but I'm still terrified of having to expose him to these drugs again. </blockquote>
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In the grand scheme of things, I am glad we have to re-immunize rather than face relapse, bone-marrow transplants another fight for life etc. Things could certainly be worse. But I am still disappointed that our journey continues to have speed-bumps, albeit much smaller than before. I look forward to a smoother road in the future...sometime.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJTzfi9Uw6rWFPsZp7oAryuZ2i7sJ7p2bB1jxF-VLFmO3_ubn5l17THBe837kJCGzPKDANKoaAeVsH-DNpLTcB23fhcTWcImVL3YCNZlgb8xDSZ59R2SYDRZrUuDNbwEBJnwtWPzWn8t8/s1600/IMG_0045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJTzfi9Uw6rWFPsZp7oAryuZ2i7sJ7p2bB1jxF-VLFmO3_ubn5l17THBe837kJCGzPKDANKoaAeVsH-DNpLTcB23fhcTWcImVL3YCNZlgb8xDSZ59R2SYDRZrUuDNbwEBJnwtWPzWn8t8/s320/IMG_0045.jpg" width="239" /></a></div>
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com3tag:blogger.com,1999:blog-6718085771990861597.post-40550102642934017662012-03-27T18:41:00.001-04:002012-03-27T18:41:39.023-04:00I HATE CANCER<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFEbX2LT5YR2TDh82bs8UwFTU78DaknjXUKC0SP-X3mOdhhVsngd40yZbmpFsip3WIWbGJG49tk_qnPH0EcM9HDHmKbrF1sXtoyLtIRsg6L-TphLJJlQtsRnYCVkhzp0JCVo7NSs9dYEs/s1600/IMG_2174.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFEbX2LT5YR2TDh82bs8UwFTU78DaknjXUKC0SP-X3mOdhhVsngd40yZbmpFsip3WIWbGJG49tk_qnPH0EcM9HDHmKbrF1sXtoyLtIRsg6L-TphLJJlQtsRnYCVkhzp0JCVo7NSs9dYEs/s320/IMG_2174.JPG" width="320" /></a></div>
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I like not having cancer.<br />
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Written by SammyAnonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-55479091328276755022012-03-23T18:05:00.001-04:002012-03-26T15:57:30.920-04:00Six Months Post Treatment<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBeqZVYdnxV_BvajoJvW9Gr4oZmCaCb-3Du66ep7eit0gTMlLnu57vzuT_dWSVN1q7H34FTJfdmi5Nh-dzXSVMQzWqYgF102RaIADJzqFB8C-CKiQSaKre6EwmvVoYj8e-mCQxCzFHT04/s1600/June+Stamford+ER.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBeqZVYdnxV_BvajoJvW9Gr4oZmCaCb-3Du66ep7eit0gTMlLnu57vzuT_dWSVN1q7H34FTJfdmi5Nh-dzXSVMQzWqYgF102RaIADJzqFB8C-CKiQSaKre6EwmvVoYj8e-mCQxCzFHT04/s320/June+Stamford+ER.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Then</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF6deXJRi-jUsLJ-nwcvCLGow4MMQ-p4u2Z4l-Q-bPxqJfY1gTLqDKE-IfT66CdQ0YffCQCuiaMhtSqHHijHu1TsEm2jLygNDJ-hBaISkir6SCCiUaWKsGwyZ_fgWa7SRdlPFaLpN4t20/s1600/IMG_2484.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF6deXJRi-jUsLJ-nwcvCLGow4MMQ-p4u2Z4l-Q-bPxqJfY1gTLqDKE-IfT66CdQ0YffCQCuiaMhtSqHHijHu1TsEm2jLygNDJ-hBaISkir6SCCiUaWKsGwyZ_fgWa7SRdlPFaLpN4t20/s320/IMG_2484.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now</td></tr>
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Yesterday was Sammy's <i>sixth month post-treatment check-up</i>. What a difference! Sammy was showing off the tape he has on his legs from PT which helps him to move his legs properly; the doctors were all marveling at how wonderful he looks sans chipmunk cheeks and with soft, slightly shaggy hair. All the signs are good...Sammy is still clear of cancer and has no indication of relapse.<br />
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We are on monthly visits to CHAM for check-ups and bi-weekly visits on a Tuesday afternoon for Sam to see his psychologist. Cancer and chemo almost seem a lifetime away: I see pictures of Sam in his bald, frail and sick condition and feel a bit of a disconnect...did <b>that</b> really happen? Well, yes it did, and I was surprised at how easily I felt like forgetting it. So much for my gallant "I will never forget" stance as we <a href="http://supermansammyz.blogspot.com/2011/11/no-more-words.html">ended treatment</a> half a year ago.<br />
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My head was forcefully removed from the sand during this past CHAM visit. It really has been a while since I have been in the actual clinic part of the hospital. Sam was upset by his blood-draw; having to have a vein in his hand accessed rather than just the finger prick. He seemed like he had reverted back to the <i>terrified newbie</i>, crying and begging the technician to let him tell her when he was ready. He was never going to be ready, as we learned over <a href="http://supermansammyz.blogspot.com/2009/11/good-bad-and-ugly.html">three years ago</a> (wow!) and she stuck him and drew the blood among a flood of tears. I am ashamed to say I was awful at dealing with this...no idea why. I just couldn't get my act together to help Sammy out. I almost scowled at him to just let her do it and stop making a fuss. ME...I did THAT!!! But I hated myself and ran over to hug him and make him better, still feeling like a fish out of water...and a complete bitch! <br />
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There aren't many blogs about life after childhood cancer. There is a reason....it sucks to remember it. But once Sam and I had endured a couple of hours in the CHAM clinic, I remembered why it is so important to keep this fight going. <br />
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A little girl, no more than three years old, was skipping along the hallway. Her head was bald except for a few strands of whispy brown hair. Her skinny body and sunken eyes indicated that she was in the heart of the treatment. Her nights would most likely be filled with chemo and pain, possibly vomiting and mouth ulcers. I didn't look at her and want to run over to her parents to tell them Sammy did well and she most likely will too. (This had been my inner response since treatment ended.) I just wanted to cry with them and acknowledge where they are in their journey. <br />
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As Sammy spoke with his psychologist, who visited rather than have us come back on Tuesday, we heard the screams of children resounding around the room. Curtains were pulled across to suggest a semblance of privacy; nurses, our friends, shuffling carts filed with syringes and catheters ready to pump toxic chemicals into infants, toddlers, grade-schoolers and young adults. Parents seemed to either melt into the shadows, quiet desperation on their faces; or hover over every moment, watching avidly to check everything was done as it should be, determination in their eyes. <br />
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Sammy was opening up about his frustrations with not running as fast as his friends, how he felt they were less kind to him now he was just <i>slow and easy to catch</i> in tag. But as time went on, Sammy began to withdraw too. He was hearing the screams, watching the activity in the room, probably remembering his own ordeal. We wrapped up the session early. I made a mental note never to have him in <i>the back</i> again. It sounded like a torture chamber in a movie. <br />
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So, watching this from the other side was something I will never be able to fully describe. Cancer may be in our past, but it is always going to be embedded in our souls. You see, we <b>know</b>. We <b>understand</b>. We <b>shall never forge</b>t! Yesterday I learned how to stop hiding from cancer. I made a promise to get back on the wagon and be active again in spreading the word. Cancer can be beaten if enough people work hard enough at it. I will be reactivating this blog and pushing for more exposure. Strangely I did not do that as much when I was directly involved...perhaps I was too close to it? But now I am going to blog and shout all the way to the top of the mountain.<br />
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There are still kids suffering indescribable pain due to cancer and the treatments currently available. There are still <a href="http://supersibjack.blogspot.com/2011/03/what-are-supersibs.html">siblings</a> who watch and wait for life to return to them too. There are parents whose worst nightmares have been realized and there is nothing they can do about it. Superman Sammy is my hero, now he will help others too!<br />
xxxAnonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com6tag:blogger.com,1999:blog-6718085771990861597.post-58716061587909583062012-01-30T17:59:00.002-05:002012-01-30T18:03:51.504-05:00The Danny Fund<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxzSuEQ2zjaXU0l65pJ3A8TSIBHJo929dSHpn5J4uzJObKAmgYpJbofH3cHB9x7fqRkGG3jBnO4I0WppknIcQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: 'times new roman', time, serif; font-size: 13px;">The Danny Fund was founded in 1993 when a four-year-old Pelham boy named Danny was diagnosed with a rare form of leukemia. To help, friends provided warmth, love and emotional support to let the parents know they were not alone. They rallied around the family and raised money through bake sales, winter softball games and word of mouth. Danny responded to his treatment, his cancer is in remission, and he is now leading the active and normal life of a 20 year-old. With the crisis behind them, the small group of organizers met. If they could help one family in a meaningful way, why not others? The Danny Fund was born.</span></blockquote>
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Every year the Danny Fund holds a fundraiser. It is a fun gathering of community members and patrons, along with Danny Fund families. The mission of the Danny Fund is to help families whose child has been hit by a catastrophic illness. We are one such family and we ask that you join us on February 11th or make a donation <a href="http://thedannyfund.org/donate.html">here</a>. For more information, leave me a comment or email <a href="mailto:given2fly46@yahoo.com">given2fly46@yahoo.com</a>. We cannot thank the Danny Fund enough for all they have done for us. The video above says it all. <br />
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Read more about the Danny Fund <a href="http://thedannyfund.org/about_adopt.html">here</a>. To see how we have been helped in the past click <a href="http://www.blogger.com/blogger.g?blogID=6718085771990861597#editor/target=post;postID=4613500604362551756">here</a>, <a href="http://supermansammyz.blogspot.com/2011/06/principal-for-day.html">here</a>, and <a href="http://supermansammyz.blogspot.com/2010/12/danny-fund.html">here</a>. <br />
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<br />Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-48282310247844956172012-01-21T12:43:00.003-05:002012-01-21T12:43:47.129-05:00I Could Not Have Said This Better Myself!<span class="Apple-style-span" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 17px;"></span><br />
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<a href="http://blog.sfgate.com/sfmoms/files/2012/01/bald-barbie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="243" src="http://blog.sfgate.com/sfmoms/files/2012/01/bald-barbie.jpg" width="320" /></a></div>
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Below is an excerpt from a mom whose child has cancer. She is a mom I respect greatly and have been following her son's story over at his Caring Bridge site at: </div>
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<a href="http://www.caringbridge.org/visit/bradenh">http://www.caringbridge.org/visit/bradenh</a></div>
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Many of you will be familiar with the big campaign to get Mattel to make <b>bald Barbies</b>. That is one issue...each to his/her own, I say. What struck me the most, was the response to this from the Director for the <b>American Cancer Society</b>...the one many of us raise money for, thinking we are helping our kids. I was infuriated beyond belief, but could not find the words to express my rage. Then I read the following. It is taken word-for-word, I just left out the beginning of the post which actually deserves its own recognition. </div>
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Deliece, you are my hero for expressing this so beautifully:</div>
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"Just a few days after that, Andrew Becker, the Media Relations Director for The American Cancer Society (yes, the Relay For Life people) posted a blog. The background is this…one little girl requested a bald Barbie doll as she was going through chemotherapy. Mattel made her one which was VERY cool of them. A couple of cancer moms started a Facebook page to try to get Mattel to make bald Barbies as other children who are going through chemo, who’s moms are going through chemo, or things such as Alopecia or Trichotillowmania which cause hair loss.</div>
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Now, whether or not there should be a bald Barbie is not something I really hold a strong opinion about. So what I am going to share with you is really not IN ANY WAY SHAPE OR FORM related to whether or not a bald Barbie should be made. What I am upset about is how the Media Relations Director speaks about our children and breast cancer patients.<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Bald Barbie or no Bald Barbie…it is his attitude and demeanor toward childhood cancer and breast cancer that has me “wigging out”…pun intended.</b></div>
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Below you will find his words…the post has been pulled from the web and he has made an apology. I will allow you to read it and then I will explain why it’s a lesson about “think before you speak”.</div>
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<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Bald Barbie Demand is an Over-Reach</b></div>
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<a href="http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">January 13, 2012</span></span></span></a><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"> by </span><a href="http://acspressroom.wordpress.com/author/asbecker/" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">asbecker</span></span></span></a><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></i></span><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">We apologize if the below post offended some of our readers. We realize that in our zeal to highlight an issue that deserves debate, we may have sounded insensitive. This post was written to provoke debate about the proliferation of products marketed to raise awareness, and we think asked legitimate questions. We believe discussions like this can help focus all our efforts more closely on our shared goal of defeating cancer.</i></div>
<i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></i><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls,</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><a href="http://huff.to/AbYzax" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">to manufacture a bald Barbie</span></span></span></b></a><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,<i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></i></span></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”</i></b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></i></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><a href="http://www.chicagonow.com/mary-tyler-mom/2012/01/barbie-v-cancer/" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Mary Tyler Mom</span></span></span></b></a><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.</span></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">The downside to raising awareness has been</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><a href="http://womenwcancer.blogspot.com/2011/09/upending-pink.html" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">well documented </span></span></span></b></a><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that <i style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">may</i> lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.</span></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and</b></div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><a href="http://newyork.cbslocal.com/2011/03/04/4-year-old-battling-cancer-receives-one-of-a-kind-barbie/" style="color: #e5762e; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><span style="color: blue; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">made one bald Barbie </span></span></span></b></a><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?</span></b><b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.</b></div>
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Okay…and the next section of this novel will explain what I sent to “Becker” (using the Mr. part makes it seem like I respect him so I’ll stick with Becker) via email at andrew.becker@cancer.org.</div>
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Let’s take it one point at a time. First he talks about “raising awareness” and do we really need one more thing to raise awareness. I’m going to say, “YES!” Here is why…80% of the children who will be diagnosed with cancer have disease that is already at stage 3 or 4 when that is only true 20% of the time with adults. Remember that we took Braden into the ER on October 31, 2007 and they did a chest x-ray that showed a small gray mass…low hemoglobin…overnight stay in the hospital…and they told us to give him iron drops for dietary lack of iron and follow up with our pediatrician. Which I did…I took him back in repeatedly telling them that something was wrong and finally 2 months later on December 28, 2007, we took him to the ER and they did another chest x-ray and his “small gray shadow” was a tumor so large it was pushing organs out of his way. He had been to our pediatrician only a few days before that and was given oral steroids because he wasn’t moving much air on his right side. That was because the tumor was compressing his lung.</div>
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THE DOCTORS WERE NOT AWARE OF CHILDHOOD cANCER AND THEY MISSED BRADEN’S DIAGNOSIS WITH AN X-RAY AND OVERNIGHT STAY IN A HOSPITAL WITH LABS THAT SHOWED LOW HGB! THEY MISSED IT ON OUR REPEATED VISITS BACK TO THE PEDIATRICIAN!</div>
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<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">HELL YES WE NEED MORE AWARENESS!!! ARE YOU EVEN SERIOUS WITH YOUR QUESTION BECKER?</b></div>
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When even Doctors are unaware…there is a problem. At our “diagnosis meeting” where they told us about neuroblastoma, treatments, and odds, Dr. Shore looked at me and said, “you can’t blame yourself for missing this diagnosis”. I looked him squarely in the eyes and said, “OH I don’t blame ME, I blame YOU medical people! I’ve been trying to tell you something was wrong and you wouldn’t listen!”</div>
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I have adult friends who have died from cancer and who are battling stage 4 disease…yes, their cancers need more awareness too!! Wouldn’t you think the Director of Media Relations for a group whose mission is to fight all cancers, would get that?</div>
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Becker makes the point that dollars would be better spent donated to research rather than buying a Barbie. I don’t see the relationship…not sure that the sales of a Barbie would go to anything other than Mattel and people buying the Barbies aren’t buying the Barbies to cure childhood cancer, they are buying them to give their babies something to play with that they can identify with. However, the bigger issue for me is this:</div>
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The American Cancer Society donates $0.007 of every dollar raised toward childhood cancer research. Now..he makes the point that childhood cancer is exceedingly rare so I suppose in their minds, it doesn’t need to be funded. CHILDHOOD CANCER IS THE NUMBER ONE KILLER BY DISEASE AMONG CHILDREN!! Yup…we are number one! Woo hoo...doesn't everyone want to be #1 at something!? I don’t want to be number one…I want to be number <b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">negative </b>one…times infinity to the power of infinity...times ten. I don’t want these diseases even in our vocabulary. Perhaps he would like to explain to the 13,000 families whose children will be diagnosed with childhood cancer this year alone…and who will be fighting stage 3 or 4 disease because of the lack of awareness that we shouldn’t worry because it’s rare. These children are fighting for their lives…TOO MANY have already lost their lives because we didn’t have treatments for them…Jacob, Sarah, Jared, Mandy, Hope, Lucy, and sadly the list goes on and on and on…</div>
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I believe that because ACS donates only 1% of their funds to childhood cancer, they should not be telling everyone else to donate to research of childhood cancer. Seems a tad bit…okay, a LOT BIT…hypocritical to me! “Good people, please donate your money to ACS so we can given 99% of it to something else.” Leaves me shaking my head. That is why organizations like Braden’s Hope For Childhood Cancer were created…because the ACS is virtually ignoring our children so we are stepping up to the plate. When you and your organization step up to the plate Becker, you can tell everyone in the world to donate money to childhood cancer research. Just my opinion!</div>
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And then there’s the breast cancer side! Apparently, Susan G Komen’s Society has done a terrible job of creating awareness. They have made us TOO aware of breast cancer. Shame on them…I suppose that I why I was doing monthly self exams and when I found a lump, I knew what it was and knew I needed to get it looked at right away. And then when they did tell me it was cancer, I had a plethora of treatment options/drugs available to me…compared to the “no known cure” Braden received. I guess that women do not have the right to make their own medical decisions with the consulation of their oncologists and surgeons about whether or not to have mastectomies. Shame on those of us who have elected the option of mastectomy verses lumpectomy because we want to do everything possible so we have less of a chance of it coming back. Shame on us! I suppose your own family history and experience should have nothing to do with what you decide because Becker says that too much awareness is making women lop off our breasts because there’s too much awareness and too many silicon bracelets? I am SO extremely misinformed and uneducated and so are the THOUSANDS of women in the world who are fighting breast cancer. Shame on us, breast cancer sisters! We should know better!</div>
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Yes, that was sarcasm. This post upset me as much as a breast cancer survivor as it did a parent of a child fighting cancer. I feel that naughty finger creeping up!!</div>
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The paragraph that made me the angriest (yup…I haven’t even gotten as mad as I am going to get yet LOL!!) was this one:</div>
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></b><div style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.</b></div>
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I am not quite certain why Becker cares about where the dolls end up…but I’m going to skip over my feelings about the beginning of the paragraph and skip to his last line…”<b style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">It’s why we don’t see advocates calling for lightning strike dolls.”</b></div>
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And at this point…I have had to “simmer down” for several days before posting about this.</div>
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Are you kidding me? ARE YOU REALLY SERIOUS?</div>
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You are going to marginalize, demean, and irreverently make light of children fighting for their lives...while also taking a swipe at those injured or killed by lightning???? REALLY?!!</div>
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SHAME ON YOU ACS AND BECKER!!!! SHAME ON YOU!!!!</div>
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I hear comments about children with cancer that are unkind…not very often, but they are out there…remember my first example in this post?? But the LAST people I would expect to make apathetic, inconsiderate comments about children with cancer would be an organization that is asking us all to give them money to fight childhood cancer! 1%…so it’s really not that much of a priority, is it Becker?</div>
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Lastly…Mattel and the pressure of making a Barbie. A friend and I were discussing Becker’s post yesterday and she said that Mattel sure has a chance to come out of this looking like a hero thanks to Becker. SO…Becker…thank you because in a weird way, you have raised awareness about the inequities of funding and awareness for childhood cancer…albeit at the black eye you have given the organization you represent…people, like me, are talking about it and that pressure you didn’t want Mattel to have…is now FAR greater thanks to you and your unkind words. I will never again even remotely consider monies donated to ACS for any cancer…adult or pediatric…all of my dollars will go elsewhere. Of course that would have a lot more weight if I had dollars to share, but you get the idea! LOL!</div>
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SO I am going to say again…think before you speak. It's a good rule and one that would have kept many people (Braden and me included) from being hurt by these insensitive words. Whether you side with Becker on his thoughts about the bald Barbie or not, I hope that I have been able to explain how hurtful his comments about childhood cancer and breast cancer are to those of us who have fought them. Again…shame on you Becker and ACS!!! The wrestling dude probably didn’t know any better…but YOU should have!!</div>
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Deliece"</div>
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</div>Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com2tag:blogger.com,1999:blog-6718085771990861597.post-37647020407064598852012-01-15T23:12:00.002-05:002012-01-15T23:13:27.016-05:00Nutrition for Kids with Cancer<br />
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Feeding a family is difficult. Everyone is so fussy: they like things this way or that way, but never the way you have actually made it. Imagine your <a class="zem_slink" href="http://en.wikipedia.org/wiki/Taste_bud" rel="wikipedia" style="color: black; text-decoration: underline;" title="Taste bud">taste-buds</a> are totally changed, your stomach and <a class="zem_slink" href="http://en.wikipedia.org/wiki/Digestion" rel="wikipedia" style="color: black; text-decoration: underline;" title="Digestion">gastrointestinal tract</a> is raw and blistered, you throw up regularly, and your hair has fallen out! You have cancer and now nothing you are presented with looks appetizing.</div>
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Now a company, cofounded by Jessica Welsch called <a href="http://hopefull.businesscatalyst.com/home.html" style="color: black; text-decoration: underline;">The HopeFULL Company</a> is creating meals that will provide <a class="zem_slink" href="http://en.wikipedia.org/wiki/Essential_nutrient" rel="wikipedia" style="color: black; text-decoration: underline;" title="Essential nutrient">essential nutrients</a> to chemo-ravaged bodies as well as those suffering other illnesses, through meals that are actually appealing and easy to eat. Please consider supporting their Kickstart drive to get this wonderful business funded. If I had this resource two years ago, I am sure Button would not be facing the post-treament issues he has now. Please click on the button to make a pledge ASAP….there are only four days left!</div>
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<a href="http://www.kickstarter.com/projects/1715353522/the-bellyfull-kit-eat-happily-ever-after" style="color: black; text-decoration: underline;"><img alt="" class="aligncenter" height="194" src="http://t1.gstatic.com/images?q=tbn:ANd9GcT6ImnorxZOMovPTRdUr8QGMzTq62AOd997ZeQBy1hS8ToiEjlIeA" style="border-bottom-color: rgb(221, 221, 221); border-bottom-style: solid; border-bottom-width: 10px; border-color: initial; border-left-color: rgb(221, 221, 221); border-left-style: solid; border-left-width: 10px; border-right-color: rgb(221, 221, 221); border-right-style: solid; border-right-width: 10px; border-top-color: rgb(221, 221, 221); border-top-style: solid; border-top-width: 10px; border-width: initial; clear: both; display: block; margin-bottom: 0.5em; margin-left: auto; margin-right: auto;" title="food" width="259" /></a></div>
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</div>Anonymoushttp://www.blogger.com/profile/06880295170339104548noreply@blogger.com1