tag:blogger.com,1999:blog-33806650681525906972024-03-05T20:32:51.622-05:00Alyssa's StrengthA blog dedicated to documenting the journey of our princess, Alyssa Athena Ragusa, who was diagnosed with Neuroblastoma at only 8 weeks old.Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-3380665068152590697.post-2452971763161593542012-12-15T08:42:00.000-05:002012-12-18T11:56:07.325-05:00What a Ride..1 Year, or 365 days, or 8765 hours, or 525949 minutes.<br />
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However you choose to quantify it, that doesn't make it any less of a roller coaster. It has been 1 year since Alyssa was diagnosed, and my wife and I spent time reflecting on what we, as a family, have been through. It's not all bad, of course, when I'm feeling a bit mopey I just have to look over at the little princess next to me and she never ceases to make me smile and forget whatever was bothering me at the time.<br />
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I have to be honest, had you asked me where I thought we'd be a year ago, I'm not sure how optimistic my answer would have been. But thanks to the support and care of family and, in no small part, the wonderful (and simply amazing) doctors and staff at <a href="http://www.orlandohealth.com/arnoldpalmerhospital/index.aspx" target="_blank">Arnold Palmer Hospital for Children</a> we will finally get to enjoy the Christmas we so longed for with our daughter. Instead of the beeping of respirators, we'll now hear the jingle of bells. Instead of crying on shoulders, we'll be singing some carols. I've never wanted a Christmas so badly before in my life.<br />
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But, enough of that..<br />
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I happy to report that, since being declared in remission, Alyssa has been doing quite well. All of her scans and tests up to this point have been spot on, with no cause for concern. All of her levels are within "normal" ranges, and her spirits couldn't be any higher. She quickly went from crawling to walking and is now running at a full gape. She went from having no teeth to almost a full set in what seems like overnight. She's really become increasingly independent, so much so that she'll sometimes refuse to eat unless you let her feed herself.<br />
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<i><b>We now have a little person running around our house! Where did my baby go?!</b></i><br />
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We'll of course continue with her scans, in fact we have our "final" MRI of the year on the 21st. From there we'll be moved to a 6-month schedule rather than every 3. It's scary, but it's a milestone.. we'll just have to overcome our "scanxiety" and focus our efforts on being alert, and most of all, just being there for her.<br />
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No one knows what the future has in store for our little monkey, we have no control over that. However, one thing I can control is the present -- and I can assure you, she will have the best "now" we can give her.<br />
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Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-18274834967975509592012-09-28T09:05:00.000-04:002012-10-04T09:10:33.206-04:00Alyssa: 1, Cancer: 0<blockquote class="tr_bq">
<span style="background-color: white; color: #333333; font-family: 'Helvetica Neue', Arial, sans-serif; font-size: 14px; line-height: 18px;">"No recurrent, residual or progressing neuroblastoma demonstrated in the abdomen."</span></blockquote>
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This is the summary of the latest MRI.<br />
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I can't express with words how happy we are right now. To receive this news 2 days before Alyssa's 1st birthday.. a day which, when we began this whole journey, we weren't sure we would ever see, is finally here.<br />
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Our sweet daughter, my hero, officially kicked cancer's ass.<br />
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<br />Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-30097647605682152202012-06-07T07:24:00.001-04:002023-02-01T18:08:16.839-05:00MRI Day!Going off for an MRI within the hour. Hoping to measure liver size and check for lesions (hopefully lack thereof!).<br />
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Someone is a bit excited about it..<div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu2-TM9inL5OZlp6n7jqclrhGzPeIB2hHzotdCEPvlkPsKvjkIT4ArQl5Y25nya1_4HIcnQgCJQ92PRCu-P9nHCM6raDIgiygINpcZhATc2sD18XtlpV77aCxpNBHvk5lWakt8ctVGePC65EpEk2qWr7qd9HU0Eyxw8RfSfSkIAF611QqicrFYd4Y-tQ/s480/blogger-image--1233095523.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="360" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu2-TM9inL5OZlp6n7jqclrhGzPeIB2hHzotdCEPvlkPsKvjkIT4ArQl5Y25nya1_4HIcnQgCJQ92PRCu-P9nHCM6raDIgiygINpcZhATc2sD18XtlpV77aCxpNBHvk5lWakt8ctVGePC65EpEk2qWr7qd9HU0Eyxw8RfSfSkIAF611QqicrFYd4Y-tQ/s320/blogger-image--1233095523.jpg" width="240" /></a></div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-58897479161089863692012-04-23T08:47:00.001-04:002012-04-23T08:47:38.942-04:00One Step Closer to Superpowers!Ultrasound (and Clinic) day! <br />
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Today is the first time since Aly's Broviac removal that they will be drawing blood. I'm not sure how she's going to take the needle, but I can imagine.cThe ultrasound will hopefully provide the results everyone is expecting: a reduction in liver mass and no other "masses". <br />
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All in all, Aly has been doing great! She's meeting milestones and in an overall happy mood. She doesn't appear to be in any pain, and is always giggling. Oh, AND SHE'S GROWN LOTS OF HAIR BACK! :)<br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdCW-Tvix249a8CImq74cDRoGDuadSLNcqcJ2vJwNrJc1ZpsDiHhIuwstJOyo33QTkGMn18OZVpKihAbGtWQ3h1frFUOp_4LeUeFqcAllhiMmLEOThBEBkmEkgpGaVLUGM8C3bErJ1LbmR/s640/blogger-image--619070244.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdCW-Tvix249a8CImq74cDRoGDuadSLNcqcJ2vJwNrJc1ZpsDiHhIuwstJOyo33QTkGMn18OZVpKihAbGtWQ3h1frFUOp_4LeUeFqcAllhiMmLEOThBEBkmEkgpGaVLUGM8C3bErJ1LbmR/s640/blogger-image--619070244.jpg" /></a></div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com3tag:blogger.com,1999:blog-3380665068152590697.post-9831929805977704872012-03-30T17:04:00.000-04:002012-03-30T17:04:41.996-04:00Happy 0.5th Birthday!In honor of Princess Alyssa's 0.5th birthday, I present.. photos!<br />
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<a href="http://4.bp.blogspot.com/-DSFZe5wzWjY/T3XJCsjAQII/AAAAAAAAAyo/QBTy_rnNUHI/s720/IMAGE_F847840E-F66A-4D9A-A6AC-0DC296330CEE.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-DSFZe5wzWjY/T3XJCsjAQII/AAAAAAAAAyo/QBTy_rnNUHI/s200/IMAGE_F847840E-F66A-4D9A-A6AC-0DC296330CEE.JPG" width="148" /></a></div>
<a href="http://1.bp.blogspot.com/-2P7Up5sCEYU/T2ydhti6KOI/AAAAAAAAAp4/YwDPH-FYVbs/s1600/100_1305.JPG" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://1.bp.blogspot.com/-2P7Up5sCEYU/T2ydhti6KOI/AAAAAAAAAp4/YwDPH-FYVbs/s200/100_1305.JPG" style="cursor: move;" width="150" /></a><a href="http://2.bp.blogspot.com/-eDWKuA-U5xQ/T2zHa68Td1I/AAAAAAAAAu4/57Gba-OuaQI/s720/IMAGE_3AC16CB5-4BBA-4C13-8E09-4E863DB23772.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-eDWKuA-U5xQ/T2zHa68Td1I/AAAAAAAAAu4/57Gba-OuaQI/s200/IMAGE_3AC16CB5-4BBA-4C13-8E09-4E863DB23772.JPG" width="149" /></a><a href="http://4.bp.blogspot.com/-8ID9r1v2Zaw/T3M_sx5G_8I/AAAAAAAAAyA/3KdjeH6JrL0/s720/IMAGE_7A8BE82F-14E2-4139-868F-9A18E49349E2.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="http://4.bp.blogspot.com/-8ID9r1v2Zaw/T3M_sx5G_8I/AAAAAAAAAyA/3KdjeH6JrL0/s200/IMAGE_7A8BE82F-14E2-4139-868F-9A18E49349E2.JPG" width="148" /></a><br />
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<a href="http://2.bp.blogspot.com/-o5UHhY7IoQs/T2ydil4b4wI/AAAAAAAAAp8/Thj3akpEgig/s720/100_1309.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="http://2.bp.blogspot.com/-o5UHhY7IoQs/T2ydil4b4wI/AAAAAAAAAp8/Thj3akpEgig/s200/100_1309.JPG" width="150" /></a><a href="http://1.bp.blogspot.com/-zBkNg7Q5mdc/T2zHfbc7QuI/AAAAAAAAAvI/5iEfIqC6iLA/s1600/IMAGE_DC32258A-1E11-4020-95A6-9AAC9590EB41.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="http://1.bp.blogspot.com/-zBkNg7Q5mdc/T2zHfbc7QuI/AAAAAAAAAvI/5iEfIqC6iLA/s200/IMAGE_DC32258A-1E11-4020-95A6-9AAC9590EB41.JPG" width="149" /></a><br />
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<a href="http://4.bp.blogspot.com/-6zwhizmzQCA/T2--OwxFFBI/AAAAAAAAAxM/-m3bXslQ958/s1600/IMAGE_77846871-EDD6-4E88-AE9F-CF65A33C546A.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="150" src="http://4.bp.blogspot.com/-6zwhizmzQCA/T2--OwxFFBI/AAAAAAAAAxM/-m3bXslQ958/s200/IMAGE_77846871-EDD6-4E88-AE9F-CF65A33C546A.JPG" width="200" /> </a><a href="http://2.bp.blogspot.com/-F6GUo-iBKcw/T2--Gan4f4I/AAAAAAAAAw0/f693-s5ycao/s912/IMAGE_063AFEA8-AB4B-45BB-85A3-1B54799784D9.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="http://2.bp.blogspot.com/-F6GUo-iBKcw/T2--Gan4f4I/AAAAAAAAAw0/f693-s5ycao/s200/IMAGE_063AFEA8-AB4B-45BB-85A3-1B54799784D9.JPG" width="200" /></a><br />
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<a href="http://2.bp.blogspot.com/-PeZPhY2yOdQ/T2ymlqGkStI/AAAAAAAAAt0/2r6SdiziIOg/s1600/IMAGE_76798D41-1920-41ED-9722-BAD0DD250B78.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="148" src="http://2.bp.blogspot.com/-PeZPhY2yOdQ/T2ymlqGkStI/AAAAAAAAAt0/2r6SdiziIOg/s200/IMAGE_76798D41-1920-41ED-9722-BAD0DD250B78.JPG" width="200" /></a><br />Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-78013029152246834712012-03-23T16:52:00.001-04:002012-03-23T16:53:11.639-04:00Rawr.<div class="separator" style="clear: both; text-align: center;">
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I know, I know. I really need to keep adding previous entries.. but this was too cute not to post. :)Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-73429825336760234452011-12-25T19:00:00.000-05:002012-03-14T16:45:12.692-04:00Merry Christmas?So this isn't exactly how I envisioned spending Alyssa's first Christmas. She should be covered in wrapping paper, not tubes. It doesn't really seem like there's much to be "merry" about -- that may just be the self-pity talking, but it's how we feel <i>right now</i>.<br />
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In any event, the family has come to visit and spend time with us in the hospital, as we couldn't possibly bear to leave our little girl's side. Honestly, they're a welcome distraction -- well, as distracted as you can be from all the beeps, buzzes and other sounds we're so keenly attuned to now.<br />
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We've planned a "second" Christmas, to be celebrated at a later date once we're out of the hospital. Alyssa's presents are all wrapped and ready for her little hands to work over. The hospital has left a (very) large bag labeled "To: Alyssa, From: Santa" containing what appears to be a bunch of toys. This is quite possibly the most simultaneously heart-warming and heart-breaking event of the past week -- I don't know whether to cry tears of happiness or sadness.<br />
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I'd trade it all to just hold her in my arms and have her coo at me lovingly.<br />
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<i>Please, Santa?</i>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-45886895969969123132011-12-22T02:00:00.000-05:002012-02-21T12:59:07.488-05:00That's My GirlSo, as one might imagine, being awoken in the dead of night in PICU by a screeching alarm can be rather rattling.. which is what happend to us this morning. Once awoken, we were shocked to see the respiratory therapist standing over our now flailing child yelling for help out into the nurse's area. At the time, we weren't aware of what was going on or how severe it may be, so we stood clear of the medical staff off to a corner before we were escorted out to a "waiting area".<br />
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<i>Was she breathing?</i></div>
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<i>Did her lungs collapse?</i></div>
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<i>My God. <b>Is she still alive?</b></i></div>
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All of these questions and more, running through our minds. We didn't say much to each other, my wife and I. We just sat in the waiting area staring at the walls with empty eyes and minds full of possibilities.. waiting. Just, waiting, for someone to come in and deliver us news -- good, bad. Something.</div>
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After about half an hour, the doctor on-call came in and explained what had happened. As it turns out, Alyssa decided that she had had enough of the ventilator and decided to self-extubate (she pulled out her breathing tube) -- all while sedated. All in all, the incident wasn't very severe -- in fact, she surprised everyone by actually breathing on her own for a few breaths before they re-intubated her (all without issue, thankfully!)</div>
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So, as a father, this just makes me proud. My daughter, with enough sedation in her veins to bring down a rhino, was able to reach up and yank out her breathing tube -- <i>and breathe on her own</i>. </div>
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This just reaffirms in my mind that she's strong, a fighter, and she's going to be just fine...</div>
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<br /></div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-30900291424586919142011-12-21T12:37:00.000-05:002012-02-21T12:37:35.322-05:00Well, It's Better Than 2%.. Right?So the results of the bone marrow aspiration came back.. 1% of total nucleated cells identified as malignant. Not exactly the results we were hoping for, but it (obviously) could be much worse.<br />
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According to our oncologist, this doesn't change our current course of treatment. The current COG protocol we're following should address the cancer in the bone marrow as well. We'll perform a follow-up aspiration once we've completed a couple cycles of chemo, to see where we stand.<br />
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For what it's worth, no one (except my wife and I) seemed surprised as to the results. It appears to almost have been expected. So, there's that.<br />
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Aside from all of that, Alyssa is still sedated and we're still in PICU. A preliminary X-ray shows that due to (post-surgical?) swelling, her liver is encroaching upon her diaphragm, which in turn, is slightly compressing her left lung. It's not collapsed, but if she was to be taken off the ventilator now there would be significant discomfort for her. So, until the swelling goes down, she'll remain on the ventilator.Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-20763014378813117302011-12-20T19:30:00.000-05:002012-02-17T10:38:25.192-05:00Sometimes the Treatment is Worse Than the DiseaseLet's say I saw a fly land on your face, and I casually brushed it off with my finger. You'd think nothing of it, right?<br />
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Now imagine, that instead of using my finger, I pulled out a baseball bat and beat every inch of your body.</div>
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<b>That's <a href="http://en.wikipedia.org/wiki/Chemotherapy" target="_blank">chemotherapy</a>.</b></div>
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.. and Alyssa is going through it right now. Her first cycle is 3 days long, and consists of:</div>
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<li><b>Day 1</b>: <a href="http://en.wikipedia.org/wiki/Carboplatin" target="_blank">Carboplatin</a>, <a href="http://en.wikipedia.org/wiki/Etoposide" target="_blank">Etoposide</a></li>
<li><b>Day 2</b>: Etoposide</li>
<li><b>Day 3</b>: Etoposide</li>
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If there's any "silver lining" to any of this, it's that she's completely sedated through all of this and won't feel a thing (in the event of any adverse reactions). However, this does little to comfort my wife and I who are pretty shaken up right now -- things are moving so quick. We just signed consent forms allowing something <u style="font-style: italic; font-weight: bold;">that could potentially kill our child</u> -- so, I think we're entitled a little leeway. </div>
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The nurses administering the drugs have been wonderful; happily answering any and all of our questions and helping alleviate concerns. Although, I must admit, the more I learn about the drugs being used the worse I actually feel. The possible side-effects to the multiple drugs are quite extensive, and range from mild to fatal -- and you may not experience them immediately. Many of them are "long-term", meaning that one day, 20 years from now, she could suddenly develop secondary Leukemia. Great, huh?</div>
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That being said, what can you do? We've slowly been learning to readjust our outlook to the present, rather than the future. We can't control the future anymore than we can change the past -- we can only focus on the today. The now. We have to be there for our little princess when she needs us most. </div>
</div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com1tag:blogger.com,1999:blog-3380665068152590697.post-51840283787954248252011-12-19T20:33:00.000-05:002012-02-14T12:42:41.241-05:00A Sigh of ReliefAfter what seemed like days of waiting.. she's out of surgery. <div>
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We met with the surgeon, who gleefully (and quite boastfully) informed us that he was able to remove the primary tumor along with the left adrenal gland (hey, she has 2 after all..). With her liver being the size that it is, the procedure was a bit tricky, but he didn't want to leave empty handed and pushed through to get the tumor. For good measure, he also took a liver biopsy (overachiever). </div>
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The Broviac was installed without issue, and the bone marrow aspiration was completed as well.</div>
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She needed a small transfusion, about 2oz of blood. So far, she's taken it like a champ -- no adverse reactions. <b>All in all, the surgery was a resounding success. </b></div>
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She's still heavily sedated, and is now on a ventilator. They anticipate the additional swelling from the surgery will cause compression on her lungs, causing discomfort. They've assured us that she's not in respiratory distress; that the ventilator is strictly for her comfort and will be removed in due time. </div>
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I'll admit, I was (and still sort of am) a nervous wreck during this 2 hour period. My mind running rampant with the many possible outcomes. My wife handled it a bit better than me, keeping busy with some work on her laptop to try and stay focused on something, hell anything, other than the passing time.</div>
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Looks like we're going to be spending some time in PICU. I can't wait to see my little trooper. <b>I'm so proud of her.</b></div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-67089387763570130182011-12-19T17:00:00.000-05:002012-02-17T10:38:41.786-05:00Waiting is the Hardest PartIt's time.<br />
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We've given our sweet princess over to the surgical staff who will begin immediately. The surgery is scheduled to take about 2 hours, all of which Alyssa will be under general anesthesia.<br />
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The goals, in order:<br />
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<span class="Apple-tab-span"> </span></div>
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1. Biopsy the primary tumor if possible, if not, biopsy the liver and hope we get enough cells to send for pathology.<br />
2. Remove the primary tumor from the left adrenal gland<br />
3. Install Broviac<br />
4. ???<br />
5. Profit!<br />
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Ok, so I made up 4 and 5. But that's pretty much the gist of it. We have the utmost faith in the surgical team here at APH, so it's in their hands now.</div>
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They keep reminding us that this is an open-biopsy; that the incision will be basically from hip-to-hip. Oddly, this doesn't really bother me -- provided they can get out what they need. This will just provide the context for the future talk we'll have to have with Alyssa -- one day she'll be curious as to why she has this faint scar on her abdomen.. <b>I look forward to that day.</b></div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-12522079563283658482011-12-19T09:00:00.001-05:002012-02-17T10:39:04.723-05:00You and What Army?<br />
<div style="text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh43LGFUUNG1CoefHolFeWxSaF4bIiBxZrkMwPX2nQY6RfQjnQendckQZIAtekP0P9vtOLbECQAhWvCZIk_pCXl6E7wvpbZUiadyD0g9hyphenhyphenUwXSSbigLYfMDTosQvmw8SVxjej_vYqOHwQGu/s1600/IMG_20111219_084939.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh43LGFUUNG1CoefHolFeWxSaF4bIiBxZrkMwPX2nQY6RfQjnQendckQZIAtekP0P9vtOLbECQAhWvCZIk_pCXl6E7wvpbZUiadyD0g9hyphenhyphenUwXSSbigLYfMDTosQvmw8SVxjej_vYqOHwQGu/s320/IMG_20111219_084939.jpg" width="320" /></a><span style="font-size: x-small;"><i>I have no Life but this,</i></span></div>
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<span style="font-size: x-small;"><i>To lead it here;</i></span></div>
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<span style="font-size: x-small;"><i>Nor any Death, but lest</i></span></div>
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<span style="font-size: x-small;"><i>Dispelled from there;</i></span></div>
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<div style="text-align: left;">
<span style="font-size: x-small;"><i>Nor tie to Earths to come,</i></span></div>
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<span style="font-size: x-small;"><i>Nor Action new,</i></span></div>
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<span style="font-size: x-small;"><i>Except through this extent,</i></span></div>
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<span style="font-size: x-small;"><i>The Realm of you.</i></span></div>
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<span style="font-size: xx-small;">-- Dickinson, Emily. "I have no Life but this"</span></div>
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Surgery in a few hours. I wonder how they plan to pry her from my arms?</div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-72717557535328400092011-12-18T18:00:00.000-05:002012-02-21T12:38:29.527-05:00MYCN, LOS, DNA .. OMG, WTF, BBQ?<div>
I'm beginning to realize that the medical industry <b style="font-style: italic;">really </b>likes their acronyms.</div>
<br />
After talking with the oncologist, it appears the next step is to biopsy the tumor. Due to her size, and the current size of her liver, it will need to be an <a href="http://en.wikipedia.org/wiki/Open_biopsy" target="_blank">open biopsy</a>. While inside, they'll also install a <a href="http://www.cpmc.org/advanced/pediatrics/patients/topics/central-lines.html" target="_blank">Broviac catheter</a> to prepare for <a href="http://www.cancer.org/Treatment/TreatmentsandSideEffects/TreatmentTypes/Chemotherapy/ChemotherapyPrinciplesAnIn-depthDiscussionoftheTechniquesanditsRoleinTreatment/chemotherapy-principles-what-is-chemo" target="_blank">chemotherapy</a>.<br />
<br />
The tissue removed during the biopsy will then be sent off to pathology. The things we are most concerned with are:<br />
<br />
<ul>
<li><a href="http://www.nature.com/labinvest/journal/v80/n2/full/3780030a.html" target="_blank">MYCN amplification</a> (<i>We want this to be NON-amplified)</i></li>
<li><a href="http://en.wikipedia.org/wiki/Loss_of_heterozygosity" target="_blank">Loss of heterozygosity (1p LOH)</a> (<i>We do NOT want 1p deletion)</i></li>
<li><a href="http://www.ncbi.nlm.nih.gov/pubmed/8843955" target="_blank">DNA ploidy</a> (<i>We want this to show hyperdiploidy)</i></li>
<li><a href="http://www.ncbi.nlm.nih.gov/pubmed/2047378" target="_blank">Shimada classification</a> <i>(We want this favorable)</i></li>
</ul>
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Surgery is scheduled for the 19th.</div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-517047907764276662011-12-17T18:33:00.000-05:002012-02-21T12:39:22.285-05:00No Bones About It<i>Maybe it was all just a bad dream..</i><br />
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A new day. Fairly sure we're still in shock, but we're beginning to realize that no amount of wishing it not to be true is going to help -- it's time to focus and be there for our little girl.</div>
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Today was the bone scan, where they check to see if there has been any metastasis to the bone. Despite the circumstances, the scan is actually very cool. They let us both stay in the room and watch, while Aly was under very light sedation (given orally). </div>
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Thankfully, the results came back favorable: <b>no evidence of cancer in the bones</b>.</div>Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-2911110295055571452011-12-17T05:00:00.000-05:002012-02-10T09:28:38.632-05:00A Dark Place<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvVnkpwjGQui-97U5tUYMc-QROY-sAxJSP2fV8LKXaUKAoZfKJId_oUNI878ENiKhBOwHJhMAFwYtE1QXtYylcNWJ1n1k6ISqulrvorjzC71prBCYvz3RuEqu_PxYQXgxINxA-x6VHKxaX/s1600/IMG_20111219_084853.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvVnkpwjGQui-97U5tUYMc-QROY-sAxJSP2fV8LKXaUKAoZfKJId_oUNI878ENiKhBOwHJhMAFwYtE1QXtYylcNWJ1n1k6ISqulrvorjzC71prBCYvz3RuEqu_PxYQXgxINxA-x6VHKxaX/s320/IMG_20111219_084853.jpg" width="240" /></a>It appears that the initial shock is beginning to wear off, and the gravity of the situation is setting in. I find myself trying to cope in various ways, some healthy and others not-so-healthy. I want to be positive, but after reading up on this disease it seems that it's never really "over" -- just an ongoing battle.<br />
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It's just not fair.<br />
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I need to suck it up, and push it down so I can be clear headed and strong for my little girl. She needs us more than ever right now, and crying in the shower isn't helping anyone..Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0tag:blogger.com,1999:blog-3380665068152590697.post-76957735635105536622011-12-16T01:00:00.000-05:002012-02-09T15:44:30.624-05:00Wait. What?<i>Cancer?</i><br />
<i>No, there must be some mistake. That only happens to <b>other</b> people.. not us. Right?</i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52ESWnaYUwDnOvEc4jPB5D-__S2kHEivt1Yhz5N6NM4PKL8miHcvjJwqaXpCL70A5PmIAGEqWNyx_TcHj_Lm3kOH84fa7JIYew5hNCwZzqDUv1CmhG8qEMvKAva5ObbRi_IRDC_t2L73z/s1600/IMG_20111216_175714.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52ESWnaYUwDnOvEc4jPB5D-__S2kHEivt1Yhz5N6NM4PKL8miHcvjJwqaXpCL70A5PmIAGEqWNyx_TcHj_Lm3kOH84fa7JIYew5hNCwZzqDUv1CmhG8qEMvKAva5ObbRi_IRDC_t2L73z/s320/IMG_20111216_175714.jpeg" width="240" /></a></div>
Today our daughter, Alyssa, was diagnosed with <a href="http://www.cancer.org/Cancer/Neuroblastoma/DetailedGuide/neuroblastoma-what-is-neuroblastoma" target="_blank">Neuroblastoma</a>. We had brought her to the pediatrician due to her belly being a bit larger than normal, which we attributed to gas. After checking her, we were referred to the ER for further imaging.<br />
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The preliminary ultrasound revealed that the liver was significantly larger than that of a normal liver (about 3x), as well as a "mass" on the left adrenal gland. The subsequent CT scan confirmed the findings.Adamhttp://www.blogger.com/profile/04969486495234384000noreply@blogger.com0