tag:blogger.com,1999:blog-50283650155210608632024-03-05T04:22:59.765-05:00Sweet Baby Mallory<center>
Sweet Baby Mallory (Daughter of Ryan and Ashley) was born September 23, 2011. <br>Two months later she was diagnosed with Neuroblastoma cancer.
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<br> After being Stage 4, enduring 6 rounds of chemo, two major surgeries:
<br> This little fighter was declared in remission on May 18, 2012!!
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This is her story.
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If you FOUND our balloon from our Wayland, MI Balloon Launch on Mallory's Birthday leave a comment or email us at sweetbabymallory@gmail.com
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</center>Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.comBlogger212125tag:blogger.com,1999:blog-5028365015521060863.post-24317416890395584242013-03-20T14:14:00.001-04:002013-03-20T14:15:36.433-04:00Fizzled<br />
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I have been overcome with so many emotions as we approach May. <br />
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This little girl has grown, she has grown so much. She is no longer our bald, tiny, helpless baby. (My husband has to remind me from time to time that she is NOT in fact a baby anymore.) <br />
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This Saturday we celebrate her turning 1 1/2 years old. A blessing last year we weren't so sure we'd make it to see that could have turned so quickly. <br />
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But we are pleased to announce Mallory aced her last scans, her urine counts are normal, her tumor is stable, and their is no active neuroblastoma in her tiny body. She has 1 more scans in May and then we go back in November for her 6 month check. Ohhh Lord I can see the end even if it's still 2 years away, I can see it. Please let us get there. Let us finish this race with Mallory in the lead. <br />
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We hold so much hope that this will always be the case and in a little less than 2.5 years she will be deemed cured from this. <br />
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She only takes SSKI drops for scans now, is on no daily medications, and is thriving. She is our sweet little Mighty Mallory. <br />
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Today I was reminded of how just special this girl is, as I was cleaning she had walked over to me, held up her arms and I picked her up and she laid her head on my shoulder and we danced. Her sweet eyes staring into mine with so much light, so much life, she gave me a sweet smile and chatted about "ohh de be da boos". I melted. This little girl has so much fight and so much grace. She simply doesn't complain about anything, she just got her last set of baby teeth (minus the 2 year molars) without a sound, no drooling, nothing. She does get mad at Jillian stealing toys from her, but those are little things. Actually lets be honest lots of things are just little bumps in the road now.<br />
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Ours lives are pretty boring, pretty dull, pretty normal, and I am so thankful that this blog has fizzled. God has given us a lifetime of lessons in a short 6 month time span, and for that lesson I am eternally grateful. I no longer dwell on the "what if's", I no longer dream of my burring my daughter, my thoughts and fears have been put aside. I have no control of the what if's, all I have control over is making sure my daughters are happy and healthy, and that we continue to make it through everyday. We have rough days, but no longer bad days, we have peace, sweet sweet peace. The tide has rested. We have not let our guard down but our fears no longer consume us. We are aware of them, they are there but they don't have us anymore. <br />
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We always pray for health, good good health. We will never take it for granted again. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2zlrXJ6CL8UKgdTQsa5EpZyA-zpI_iWfvrWMyuDFEhgzkeSSgyq8Wwfkcj4fS0TaSZKKFOc2cBeTmCecw4pBDNvX5bJFxsoLM0mpcY2s9IxYS5qe6YbbMTlmWpj20Q8k70Vhe2ESAnJnR/s1600/IMG_8234a.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2zlrXJ6CL8UKgdTQsa5EpZyA-zpI_iWfvrWMyuDFEhgzkeSSgyq8Wwfkcj4fS0TaSZKKFOc2cBeTmCecw4pBDNvX5bJFxsoLM0mpcY2s9IxYS5qe6YbbMTlmWpj20Q8k70Vhe2ESAnJnR/s1600/IMG_8234a.jpg" height="320" width="213" /></a>I am so thankful for my wonderful husband, my best friend. Who has held me close, learned to forgive, and has given me more joy than I've ever had. He is my rock, he shelters us, and you sent this amazing man into my life to walk with me through this journey of life. Through the Good Times and Bad, In Sickness and in Health. This journey has given us strength far beyond what we could have imagined a year ago. <br />
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Thank you for my two beautiful daughters who amaze us everyday. I never imagined my heart could get this big, that everything about them brings me pure joy.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz_U0R3OfUlMsLqgew3bjafh4QW9E7QEW8iCaDq0FKGOQcV3MK-8OiShVHA0h_txwazh-bAfiHz_nxdeAmk01nZ-QiNo8GgbLf77JBrwSdAK1hnxtmlB9JQqG9w-YbgeEouDBCfgszwI87/s1600/IMG_7789.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz_U0R3OfUlMsLqgew3bjafh4QW9E7QEW8iCaDq0FKGOQcV3MK-8OiShVHA0h_txwazh-bAfiHz_nxdeAmk01nZ-QiNo8GgbLf77JBrwSdAK1hnxtmlB9JQqG9w-YbgeEouDBCfgszwI87/s1600/IMG_7789.JPG" height="320" width="213" /></a>From the silly moments of Jillian. She is currently convinced she is a mermaid, if it wasn't for the fact that she has 2 legs I might believe it. <3 She turned 3 on December 30th, along with this age comes a whole slew of hilarious and funny things. I am amazed everyday at how she is evolving and it never ceases to amaze me. <br />
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Mallory is almost 1.5, and with this age I found with Jillian was a bit more complicated but the silly thing is i'm not sure if it's because she's my 2nd child or if she really just is so easy going but so far this 1-2 age has been cake with her. She just started walking this past month. She is a tiny peanut 21 pounds, 30 inches tall. The thighs and chubby cheeks throw everyone off :-) She is beyond beautiful and her graceful personality shows through everyday, I am so blessed to watch her on this journey and to develop into a tiny human. I am humbled by her sweet personality because she has been through so much and yet amazes us everyday. She's come so far! Our whole family has, God's light continues to shine through us. <br />
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God Bless All of you for your prayers, encouragement, and everything you've done for our family. We wouldn't be here standing with solid feet on the ground without you. Thank you for allowing this blog to fizzle away. <br />
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<p>Mallory did amazing, we are so very blessed but i couldn't imagine my life without her. She is an amazing little girl with a bright smile, a future ahead of her, and to think she could not be here for a second is unfathomable. </p>
<p>Our dear friends have a daughter who is being treated for Neuroblastoma and today they were given grim news as the treatment they have been doing has come to a hault, that she has more lessions, that they are searching for a miracle. </p>
<p>I pray that someday we find a cure for kids like Emily, who deserve a full life, who deserve a chance to live. In my heart I am hurting, knowing that could have been our sweet girl. No family should feel the sting of childhood cancer let alone have to think about the end of the road. It's unfair, its so unfair. Please Pray for Emily, and her family through the next round of options they are desperately searching for. Please let them find it. </p>
<p>Www.emilyhubble.<font color ="#000000">com</font></p>
</div>Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-15458633040998864662012-12-17T17:54:00.001-05:002012-12-17T17:54:48.864-05:00Christmas<span style="font-size: x-large;">We are hoping that Today you all started getting your Christmas Cards. </span><br />
<span style="font-size: x-large;"><br />Please know that with all of our hearts we adore each and everyone of you. </span><br />
<span style="font-size: x-large;"><br />Thank You For EVERYTHING!! </span>Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2tag:blogger.com,1999:blog-5028365015521060863.post-43595606615582260452012-12-03T16:08:00.001-05:002012-12-03T16:08:25.514-05:00Thank you Lord<div><p>Mallorys scans came back good :-) <br>
Holidays this year without chemo, broviac, transfusions and no SKYPING!!! </p>
</div>Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com3tag:blogger.com,1999:blog-5028365015521060863.post-24156275403772656942012-11-26T13:35:00.000-05:002012-11-26T13:35:35.789-05:00Scan WeekHello Scan Week, once again we meet. <br /><br />It seems like I am less and less worried about these, the tests themselves. Not the results, those I quiet frankly will be a wreck about until we are finally finished with them all together. <br /><br />Scan Week Goes like this: <br />Monday : SSKI Drops x3 a day. Which Equals One Squirmy Wormy little 1 year old because they taste ICKY. <br /><br />Tuesday: More Yucky SSKI drops 3x a day. <br />Liver Ultrasound, please take the nearest one year old and hold them down for 30-45 minutes, it's really easy I swear. (Ohh and Starve them of their Morning bottle, always good times)<br />Then head up to clinic where they will put in our sweet peanuts IV for her MIBG injection. Only to have the IV take more time than the injection itself. We even get to go into a room with a radioactive sign on the door, pretty fantastic. <br />Then take little girl's IV out and go about the rest of our day changing diapers with gloves on (gotta protect my little eggs in case we ever want baby #3)<br /><br />Wednesday: SSKI drops 3x a day<br /><br />Pray and Pray some more that Miss Mallory sleeps in so that we can escape the hungry giant of a kid, who not only gets to miss her morning bottle but gets to skip lunch as well. Then we head to clinic where the administer ANOTHER iv in her poor sweet hand. <br /><br />Then its off to sedation where I hope we get the fabulous doctor that we had last time (which all of them have been really great) but the last time they let us hold her while the administered her lovely propofol (that amazing white milky stuff they inject you with to give you an amazing nap) and she goes into a deep sleep for around 45 to an hour while they scan her little body. Which usually equals no nap for the rest of the day but usually she's back to normal before we know it, being cute sweet miss mallory.<br /><br />Thursday : SSKI drops 3x a day<br />This is where we WAIT, and WAIT, and WAIT for the doctor to call us with the results. Usually they don't so by 4:30 I'm on the phone like a hysterical mess crying my eyes out begging for some answers. And Praying all day that it comes back with NO MIBG take up, meaning they're are no changes in her tumor size, that everything is just how it should be. She had the LOWEST numbers we have seen yet, so with many good prayers going in, I am praying that this means we will have a normal Holiday season this year. <br /><br />Friday: SSKI drops 3x a day. <br />With hopefully nothing to worry about but what we're going to eat for breakfast. Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com4tag:blogger.com,1999:blog-5028365015521060863.post-20760727307354562392012-11-07T17:19:00.001-05:002012-11-07T17:19:55.441-05:00Thankfully Thankful It's November, this time last year we were putzing along with our beautiful "New-er" baby, she was sweet, she had a small squeak, and she was so perfect. <br /><br />Well this Month we've got a lot to be thankful for. <br /><br />I don't have the answers for WHY Mallory got cancer, I will never know why she was chosen to be that kid. But we are almost 1 year into this crazy roller coaster ride. There have been terrible times, their have been times where we just hit rock bottom and couldn't keep going on, and their where times when we laughed hysterically at our "radioactive baby", this road has downright SUCKED, but we're still walking, we're still here, we're grateful. <br /><br />I am thankful that Mallory was diagnosed with Neuroblastoma, not because she got cancer but because there are so many things we've learned and so many friends we've made, it's opened our eyes. <br /><br />There are so many horrible cancers out there that are far worse, that have no cure rates or very low survival rates, that you can only delay death by years, a few months or weeks. As for Neuroblastoma, we are blessed because she was diagnosed so young, it gives her a 85-90% cure rate, it's that 10-15% that creeps up all the time we pray all the time that she never falls into that category. But for this we are thankful.<br /><br />I am thankful she was diagnosed this year, in 1960 she would have no chance. I am thankful for modern medicine and the advancements it has made. <br /><br />I am thankful that we have such an amazing pediatrician who found that lump and sent us for an ultrasound. For never having a patient with Neuroblastoma before we give him many many thanks. Thanks for being a GREAT doctor. <br /><br />Thanks to all of the wonderful Nurses & Techs who made us laugh, who shared their own personal stories, who cried with us, who still light up when they see Miss Mallory. You guys have a tough job, one that I could never do, Thanks for doing it! We would have fared worse without you. <br /><br />Thanks to the Doctors who have put up with me, I am demanding, but you truly mean the world to us. Without you, Mallory wouldn't be here today, she certainty wouldn't be thriving as well without you. <br /><br />I am beyond thankful for the last year, I am thankful for cancer for opening my eyes, for teaching me things I never should know, for teaching me patience, for teaching me that each and every day is a blessing and it is so very precious. That life is not guaranteed. <br /><br />I am thankful for my 2 beautiful daughters, who have only had to worry about being little girls the last 6 months, I am thankful that they get to run around, that I get to give them baths, smell their heads and tuck them in at night. I am so thankful I get to tuck them both in. They have changed my life. I was a good Mom before, but I am an AMAZING mother now, one with a lot more patience and a lot more gratitude. <br /><br />I am thankful that Mal's HVA/VMA numbers came back normal this time. <br /><br />I am thankful for all the silly goofy moments in life, they are the ones that are truly special. For all the little quirks my kids have. <br /><br />I am thankful for 3 years ago I was walking around blissfully pregnant with our first daughter, she changed our lives. <br /><br />I am thankful for my Parents, for being my rock. For allowing me to be just me and for accepting and loving the person that I am. <br /><br />I am thankful for my Sister and Brother, who at times I cannot stand, but they have always been on the sidelines cheering me on. Thanks Guys! I hope you know that I'd go to the end of the world to help you out as well. <br /><br />I am thankful for Ryan's Family, I am especially thankful for the fact that they are amazing in-law family to have. Some people don't get so lucky. I am thankful that through our struggles they have been nothing but supportive of us. That these moments have only brought us closer. <br /><br />I am thankful especially for Ryan's Mom, who has nothing but an upbeat positive attitude, even when I am having a bad day she just gives me so much hope. She raised 3 amazing boys and I take her advice and apply it to my own life because I can only hope to have 2 amazing children who are just as great as her own. Thanks Bonnie, I just adore you and am so lucky to have you in my life. <br /><br />I am thankful for my best friend Mickelle, who listens, who allows me to vent, who I can truly be myself around. Without a doubt is one of the most important people in my life. Thanks bestie for being AMAZING and QUIRKY! I just love you. <br /><br />I am thankful for my almost 2 year friendship with Erika. For standing by us through everything, for allowing me to be a part of your life. For too listening, allowing me to vent, and who lets me be me. I am so happy I've gotten to know you and your beautiful family. You mean the world to me. <br /><br />I am thankful we get to spend this Christmas just being normal, doing normal things, and loving every minute of it. So so so Thankful!<br /> <br />
I am just thankful, thankful, thankful this month. We've got the world in our hand and we are just making the best of what we got, and that's a lot of stuff. <br /><br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com1tag:blogger.com,1999:blog-5028365015521060863.post-65709204038532968192012-10-28T23:33:00.002-04:002012-10-28T23:43:10.079-04:00Mushy Gushy Momcologist<div class="separator" style="clear: both; text-align: center;">
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Their is something so amazing about your child taking her 1st steps.
From that first breath of life, to rolling over, to sitting up, to
scooting around the room and on furniture but their is something so
magical about those tiny toes grazing the floor. Well we are please to
announce for the past 3 nights Mallory has taken 4 steps each night. Her
little wiggly diaper butt standing in front of me, taking steps like's
she's known how to her entire life. It's just amazing, gut wrenching
amazing. <br />
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The thing is, I thought milestones wouldn't be as big of a deal with our
2nd one, we've seen them before. But that's not true at all. They are
just as incredible as when Jillian did them. Seeing our girls morph from
completely helpless to little tiny people is just so hard to describe.
It's magical. </div>
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This month I've been in and out of tears, thinking of all of the amazing
moments we have achieved these past 7 years. As we lived in our first
apartment, to our 2nd apartment, and then buying a house. Then it was
onto the "baby stage" in our life, where we brought home this precious
newborn for the first time and fumbled with EVERYTHING. Where we drove
20 miles on the highway, then couldn't figure out how to get her wiggly
arms in the sleeves of her clothes, to nursing and failing at that, then
learning that she was going to thrive no matter what, from making baby
food, to learning how to let go of her so I could take a shower without
her actually in my bathroom and that too she would survive. And that
sweet girl that we took home is going to be 3 before we know it. </div>
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I am amazed at how much easier it was to bring home Mallory, how much
more fluent we were. That it was ok to take a detour on our way home to
grab diet cokes, to giving her baths, and realizing her arms really
where more sturdy than we thought, that she would be ok mingling on her
own while I got a quick power shower in. Then to her fighting to cancer,
well that was tough, but within those bad days we learned that she was
stronger than even we knew. And she graced through being a baby and to
being a very very sick child to a resilient amazing little girl who
continues to amaze us. She's physically on target in every milestone, it
took her sometime to sit up but once she got it that was the end of our
sweet peanut sitting still. To say the least, the walking is just
amazing. No she's not doing it all the time but it's still a HUGE step.
From thinking that she wasn't going to make it to see this day makes it
so very special. </div>
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And our dear sweet Jillian, she is so smart. She started saying her
alphabet around 2 and now she can tell us the sounds that the letters
make, she can count to 20 without skipping 13 & 14 now (we've worked
on that one for a LONG time!), and she's constantly amazing us with the
things she picks up on. She says "Peease", "Tank Oooo" and "Wuv Oooo"
randomly and much more than that. If you sneeze that little girl is
right behind you saying "Bwess Oooo". </div>
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I don't know when I gave these girls permission to grow up but they're
doing it right before our eyes and I cannot thank God enough for
blessing us with these little tiny souls. They are so magical. </div>
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<br />These past few weeks we've been really getting into the "grove" of things, between making beds, daily chores, and getting our house to the house that we want has been amazingly motivating. Our living room is looking spectacular, I started it while we were waiting the 6 weeks between Mal's last round of chemotherapy and her scans. Well I neglected one wall and some touch ups at the ceiling, well I FINALLY finished! I got a bunch of pictures hung on the wall, we finally bought a new entertainment center to replace our chinsy one we've had for 7 years, which held a TV it just wasn't in the greatest condition anymore. Now I need to update the pictures and it will officially feel like "home". Our Bathroom was finished right before our Baby Party with Mallory and that just turned out incredible, and we have an extra deep bathtub which is amazing. I soaked a TON while I was pregnant with Mal (with Jillian I was stuck using a shower so the bath was a nice addition). Our Kitchen is officially done being painted, now I just have to transform these thrift store frames into something magical. The theme for the house is modern with a kid twist, so we have a lot of bright fun colors but they all pull together to make it look not like we live in crayon town :-p. I can't wait to finish (although I doubt it will ever be truly finished but hey I am ok with that)<br /><br />We've got scans in about 2 weeks for Mallory, so please send out some prayers for her. Her numbers where obviously a little on the high side this past time and we just need all the prayers we can get. Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2tag:blogger.com,1999:blog-5028365015521060863.post-52589963212807825752012-10-18T23:11:00.003-04:002012-10-18T23:11:30.720-04:00Crummmmmmy ThursdayI just had a downright cruddy day. <br /><br />1. I woke up late. (Only a 1/2 an hour but I had to power shower before we headed out for clinic and make sure my hair was pretty good so we could get our family pictures done.)<br /><br />2. I threw a bunch of clothes in the washer, I showered, got the girls up, threw them (well ok not threw) in the tub, did my hair while they bathed, I hear a massive rattling downstairs. Lovely. Washer is not working right. <br /><br />
3. Made it to Clinic with Mallory, met with her oncologist, he showed us pictures of the original tumor and what it looks like now. Phew, makes you feel more at ease seeing that, the chemotherapy did a number on that stupid Neuroblastoma. We spent 3 hours total in clinic today, most of it waiting, they also took her urine to do a Catacholomine test.<br /><br />
4. As we're leaving clinic, Ryan plays a message on his phone, our car is officially ca-put. Totaled. Blah, way to go ash, way to go. At least I have a Great Husband that laughed and shrugged it off. <br /><br />
5. Made it home, laid Mallory down for a nap, hung out with Jillian while she played with Play-dough, I proceeded to clean out my "craft" closet which has been a MESS. I could barely shut the door, but I moved all the totes of toys out of their and into Jillian's closet (you know the massive amount of little leggo's, kitchen food, that she does not NEED all of them out at once.)<br /><br />6. Got the call shortly after my cleaning spree that Mallory's numbers are elevated, not enough to concern the doctors, but enough to concern me. In August they were 19.4 / 13.5 and now there 33.6 / 16.7, as a mom the worst thing that comes to mind is "relapse", so my once again amazing Husband told me to just go about with daily life and try not to stress myself sick. But easier said than done, I just want to get to the year point, I don't want to wish away the time we have but seriously can we just hit a year, can we just put all of this cancer shit behind us, at least when we hit a year her chances significantly decrease. Because every time I think about it, I just want it to be DONE. Every time a bump happens it makes me sick, it makes me so afraid, my fears surface once again. Cancer has enlightened me, but it has also taught me mortality, and life is precious and I just want this little life the rest of my life. Because I love her with all of my heart and more. So I'm going to try really hard to get through this next month, I'm going to try not to cry, and I'm going to try to keep living like I was before but sometimes it's just downright hard to deal with.Especially because they use catacholomines as a rough number, they can be effected by diet, but they also can be effected by diet, so its tough to know whats going on until her scans, but I just pray that it was the applesauce I fed to her because we followed her intake of the list we've been given to a T. <br /><br />It's hard to know that my daughter is harboring a tumor no matter the size of it, I praise the Lord that it's smaller, but I just want it gone, I don't want it to be in her tiny little body, I just want it OUT. <br /><br />7. Jillian and I went and bought felt and poodle's and rick rack edging, and after we got the girls in they're pajamas I headed off to my Mom's and she helped me sew they're cute little skirts up for Halloween so at least I have another thing checked off my list. <br />
<br />It by far wasn't the worst day I've ever had, but I've had much better days. Much less frustrating, much less emotional, but in each day we take we just keep pushing forward no matter the thing's life has dealt us, we just keep going. It's all we can do. Some days are just downright tough. <br /><br /><i>May the angels protect you, trouble neglect you<br />And heaven accept you when it's time to go home<br />May you always have plenty, the glass never empty<br />And know in your belly, you're never alone<br /><br />May your tears come from laughing, you find friends worth having<br />As every year passes, they mean more than gold<br />May you win and stay humble, smile more than grumble<br />And know when you stumble, you're never alone<br /><br />Never alone, never alone<br />I'll be in every beat of your heart when you face the unknown<br />Wherever you fly this isn't goodbye<br />My love will follow you, stay with you, baby, you're never alone<br /><br />Well, I have to be honest as much as I wanted<br />I'm not gonna promise that cold winds won't blow<br />So when hard times have found you and your fears surround you<br />Wrap my love around you, you're never alone<br /><br />Never alone, never alone<br />I'll be in every beat of your heart when you face the unknown<br />Wherever you fly this isn't goodbye<br />My love will follow you, stay with you, baby, you're never alone<br /><br />May the angels protect you, trouble neglect you<br />And heaven accept you when it's time to go home<br />So when hard times have found you and your fears surround you<br />Wrap my love around you, you're never alone<br /><br />Never alone, never alone<br />I'll be in every beat of your heart when you face the unknown<br />Wherever you fly, this isn't goodbye<br />My love will follow you, stay with you, baby, you're never alone<br />My love will follow you, stay with you, baby, you're never alone</i><br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com1tag:blogger.com,1999:blog-5028365015521060863.post-33686743194629712082012-10-17T23:50:00.000-04:002012-10-17T23:50:54.646-04:00Our little life. Every day we make it through is a GREAT day. Even the not so good ones are great. <br /><br />I haven't known what to write for quiet sometime now. I am happy that we get to be just a "normal" family, that does extraordinary things. Even if to most they are just "normal". <br /><br />October is our CRAZY Birthday month, the one month of our the year were we are swamped with parties for our families. It feels great that we get to celebrate but even Mallory has been able to as well. Jillian adores her "Birday Parties with Birday Cake". <br /><br />The funny thing about Jillian is the things she says. Each day it's something new. <br /><br />"I needs it off, barbie is neekied and DAUNCING" - seriously kid, seriously. Barbies are not allowed to have clothes any longer, it concerns me just a smidge :-p <br /><br />We went grocery shopping the other day and all the girl wanted was some "dinaSOOOUUUURRR toof brushes" to use with her "Toof paste". <br /><br />Banana's are called "Bunumanums" and Milk is "Mickey Milk". <br /><br />I am in love with this age, we're getting to the tough part where I must start trying to potty train her, and also the "no, no, no" phase. But ehhh it's still fun. Honestly it's been an amazing experience watching her grow. I am thankful for her sweet smiling face everyday. <br /><br />Last week Saturday I was driving to a baby shower and was not paying enough attention and I stopped at a stop sign and saw that the street I had to turn on was to the left, so without thinking it entirely through I just went left. I then was hit by another car. One of the things I've struggled with for a long time is the thought of one of my children dying. I've had recurrent nightmares of pulling my dead child out of a car covered in blood. It's gotten better with the help from my therapist and finally realizing that these dreams are just a reminder that we are not invincible. Having been in an accident that thankfully everyone walked away from unharmed is a reminder of how fast things can be taken away from us. I just thank the Lord for watching out for us, for keeping us safe, and for teaching me another valuable lesson. I am sorry to the poor girl I hit, I am sorry for scarring my little Jillian, and to my husband who has had to deal with all the insurance crud. I am just so thankful we are safe. <br /><br />Tomorrow marks another clinic day for Mallory. It is the usual urine catacholomine test, along with her doctor finally sitting down with us and showing us scans. We have not seen a scan since her CT was done when she was diagnosed, although I put all of my faith in her doctor to take care of our beautiful little girl, I still would like to see first hand what she fought and how far she's come. We got her blood work back that her Pediatrician ordered and it was what we needed to see to feel a little bit more at ease. I cannot thank the Lord enough for giving her such a great ped, who empathizes with us, who is open to suggestions, and who always leads us in the right direction. <br /><br />Something I would like to share is how far Mallory has come. Seriously this little girl is a rockstar, if you could meet her 1st hand you would NEVER know anything was ever wrong with her. She is smart, witty, and stubborn and absolutely perfect. She mimics us talking, she only gets mad if she's hungry or big sis steals something from her (or it's bedtime), but she flows through the days with such grace and always a beautiful smile on her face. She has the sweetest laugh, it just melts me every time I get to hear it. She is also starting to stand up on her own without holding onto anything, another big milestone for her, she took a step today with her push toy, and what a sight that was. She just is resilient, just amazing. <br /><br />I am also making massive life changing things, one of those involves my shotty house wife skills. Now to say the least we've had 2 kids. From going to adjusting to 1 (who started the world out with colic), then to being pregnant with a 1 year old, then to having 2 kids under 2, and then having our new sweet baby diagnosed with cancer, I really haven't had a whole lot of time to "adjust" to life. Not that I'd change anything about my life, but I can say first hand that I'm really not that spiffy at house wife skills. <br /><br />We finally had our kitchen painted, and I LOVE LOVE LOVE it. I feel like know that we finally have our home "perfectly perfect" for us, it just makes it worth it to keep it looking nice. So made beds, vacuumed floors, and picked up toys are a must most of the days lately. I try to keep the sink pretty clean as well (don't look right now though, it's full of dishes lol), laundry that's just not my cup of tea, but at least I'm doing a better job at it. I just feel like I'm making huge strides to getting my house to the way that makes it the easiest for us to live in, so that we can enjoy our children to the maximum, and so that we may not stress over it every single day. I am just happy we're getting there finally, but of course I am not stressed about it, I've just been putting more effort into it lately and it feels great!! (I promise to go around my house and take pictures, because I am pretty proud of all the things we've done!) <br /><br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com3tag:blogger.com,1999:blog-5028365015521060863.post-50768530483656714332012-10-01T20:53:00.001-04:002012-10-01T20:55:17.190-04:00Closure. <div class="separator" style="clear: both; text-align: center;">
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Goodbye to Mallory's 1st year of life. <br />
It was one hell of a ride. <br />
Goodbye to the tears, we welcome this 2nd year of life with open arms. </div>
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Ok, with a lot more "Peek-a-boo's" and "Where is MALLORY?" <br />
We get to now really embrace our lives, the one that God has blessed us with. <br />
<span style="font-size: x-large;"><b>This little life.</b></span></div>
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<span style="font-size: x-large;"><b>and this one too.</b></span></div>
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<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6FNMPigdWoFmfA7IIUPtL6yQZEfUNJygNkqtues-qW_pen6qnz7PltsJ8oWZ-MX4ehqKTCA0-geVwL3IhviHE5Tuhb16SpFQzU-C6y0kpgIDJFcO3HbEFCzbNkiDU-c71hHkpQcHqe2NA/s640/IMG_5761.jpg" width="425" /></div>
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Somedays are tough, really tough, but nothing can compare to what this past year has been. <br />
It makes the bad days seem not that bad. <br />
When I have one child on my leg crying for attention and the other one jumping on my shoulders. <br />
<span style="font-size: x-large;"><b>It's Not that bad. </b></span></div>
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I get it, I totally get it. <br />
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<span style="font-size: large;">This year is about US. <br /><b><span style="font-size: x-large;">It's about THEM.</span></b></span></div>
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It's about healing, healing, and moving on. <br />
It's about forgiving those that abandoned us.<br />
It's about forgiving the mistakes that have been made.<br />
It's about forgetting the things we lost, and embracing the things we have.<br />
It's about finding our purpose. <br />
It's about becoming one.<br />
It's about leaving the ugly behind.<br />
It's about being selfish and embracing our children.<br />
It's about working toward the ultimate goal. <br />
And that ultimate goal for me, is to let go. <br />
<span style="font-size: x-large;">Get Free, and FLY FLY FLY. </span></div>
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These are OUR kids. They rock. They are worth every single moment of everyday. They are my prizes. It's about saying goodbye to "Sweet Baby Mallory" and saying Hello to our "Sweet Little Girls" Because this year it's all about THEM. <br />
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So as we continue this journey through cancer, through it's many different stages, we will hopefully get to enjoy many things that don't revolve around that anymore. There will be tests, there will be scans, but life gets to move on in between. And no matter which road it takes us, we're just living the days that we have to the fullest. So this is "Sweet Baby Mallory's" blog and we will continue to update, but we're gonna add some spunk, share some of our craziness with both of our kids, and keep it as a reminder of what we've done, what she's done, and what we're made of and how far we've come.</div>
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For us. <br />
<span style="font-size: x-large;"><b>FOR THEM</b></span>.</div>
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com1tag:blogger.com,1999:blog-5028365015521060863.post-57943227922261358062012-09-23T18:13:00.001-04:002012-09-23T22:25:32.503-04:00BALLOONS BALLOONS BALLOONS! Let us know where they LANDED! :-) They were let off from Wayland, MI! <br />
-Leave a Comment Below! (or email us at sweetbabymallory@gmail.com)<br />
<br />
1. West Farmington, Ohio<br />
<br />
Here is a map of the reported balloon findings!<br /><a href="https://maps.google.com/maps/ms?hl=en&gl=us&ie=UTF8&oe=UTF8&msa=0&msid=206873683708815070529.0004ca661ce44ff9ad88e" target="_blank">Google Maps</a> (1 balloon recovered so far).<br />
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2tag:blogger.com,1999:blog-5028365015521060863.post-67615725460014528592012-09-22T22:41:00.004-04:002012-09-23T00:20:42.224-04:00Dear Mallory,<div class="separator" style="clear: both; text-align: center;">
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Dear Sweet Baby Mallory, </div>
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Last year at this time we were anxiously awaiting your arrival. Tonight I've been in and out of tears, so thankful that this year is done for you little girl. It was tough, you fought like hell, something no kid should ever have to do.. You mean the world to us. Look at what you've accomplished not only kicking cancers butt but you made an impact on so MANY MANY people and you're only almost 1 (I can't say 1 because it's not "Official" till 4:10 tomorrow!)! You amaze us each and everyday with your spunk, laid back attitude and perseverance. I look at your scars, I look at everything you've done and you are our hero little lady. We are looking forward to this year, to watching you hit every single milestone, to helping you through everything. There are reminders from people that someday you'll be a teenager and I say "BRING IT" because at more than one point this year we didn't know if you'd even hit 1 (but please take your time getting there, we want you to "just be a kid" for as long as possible). We want to be there to watch you succeed, to help you through failures, when you're happy, and when you're sad. When you fall we'll be there to catch you. We don't care as long as we get to keep you forever and ever. You've taught us things that we never knew we'd have to do. Who would have thought I would have been strong enough to keep my head up when you were sitting there snuggling me and you would get so ill, when we would have to give you shots everyday at home, when we would run to the hospital at a moments notice because we wanted the very best for you. We just want the best for you because you deserve it. The love we have for you is in no way able to be expressed because our love is bigger than we even know. The day we met you my heart got bigger, your little tuft of blonde hair, those adorable big chubby cheeks, you had such a sweet charm about you from day 1, and you remind us everyday (That sweet charm is going to be tough to say "no" to). From Day 1, I couldn't imagine my life without you, and I never want to. </div>
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HAPPY BIRTHDAY DEAR SWEET BABY MALLORY! </div>
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And to many many many more. </div>
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Love Forever & Always, and to the moon and back. </div>
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-Mommy & Daddy. </div>
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<i>Thank you Lord for allowing me to have a big enough heart to love not only her, but Jillian and <a data-hovercard="/ajax/hovercard/user.php?id=840218483" href="http://www.facebook.com/ryan.wiersma">Ryan</a>
also. Thank you for showing me even through the bad times that this
family is a rock, that no matter what we will continue on with life with
a new beautiful perspective, that sometimes you have to fall to learn
how to walk. Thank you Lord for blessing us with this beautiful baby
girl, a little girl that we love with all of our hearts. Thank You for
watching over her and keeping her safe, we pray Lord that this will be
the first of many many birthdays for her. We put all our faith in you to
carry us through life no matter the obstacle, no matter the mountains
we have to climb.</i><span class="userContent"></span><br />
<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2tag:blogger.com,1999:blog-5028365015521060863.post-75314351226473145842012-09-20T12:10:00.000-04:002012-09-20T12:10:06.975-04:00ALK GENE IS <span style="font-size: x-large;">NEGATIVE!!!!!!!!</span><br /><br />We've only been waiting 8 months for this news and we got the news we wanted. Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-45058143239714195872012-09-20T00:51:00.000-04:002012-09-20T00:51:22.324-04:00BALLOON LAUNCH! <div style="text-align: center;">
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This Sunday our Peanut is TURNING ONE! </div>
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WOW! Where did time go? <br />
Well the first 8 months of her life went really slow, the rest of it, not so much. <br />
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We will be having a MASSIVE 1st Birthday Party for her! <br />
You are all invited to join from across the world<br />
We would love to see pictures if anyone does a balloon launch on the 23rd, make sure you take pictures! Even a <3 Sweet Baby Mallory sign would rock! <br />
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Please Let Us know where Our Balloons Landed, leave a message so we know!<br />
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You can email it to : sweetbabymallory@gmail.com<br />
MUCH MUCH LOVE FROM EVERYONE!! WE CAN'T THANK YOU ENOUGH!</div>
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-86116297400137752762012-09-14T00:31:00.003-04:002012-09-14T00:31:48.491-04:00After the intial diagnosis. We started her first round of chemotherapy on the 21st of December. This weighed heavily on our hearts because Christmas was just days away. <br /><br />We had time before chemo to go Christmas shopping, something that we had totally put on the back burner. We were very fortunate to receive many donations so the girls could have an amazing day. That month was tough for us, emotionally & financially. <br /><br />Ryan was going to switch jobs, he had a job offer that payed very well, the day before she was diagnosed he accepted their offer and put his two weeks in. The job he was at he loved, he had been there for a long time. There were a few hitches when Mallory was diagnosed, one huge one was the benefits were rocky and he would have no vacation time, something when you have a sick child YOU NEED. The place he was and is still working at came back and offered him a better position and exceeded our expectations, something we always be forever grateful for. A few of his coworkers donated vacation time to him as well, seeing as it was the end of the year we had already used up all of his. Looking back on it, we are entirely blessed that he works with good hearted people and we are glad they made it work with us. <br /><br />We bounced our Mortgage on top of everything that month. When you end up spending 8 days in the hospital unknowingly you need EVERYTHING you can possibly thing of, between food & clothes, and driving back and forth, and down to socks and underwear, our normal income wasn't cutting it. Thanks to everyone that helped us get back on our feet quickly, without you we would probably still be digging out. <br /><br />Our first experience with chemo was rocky, it took 7 hours to actually get a room. Which looking back on it now was not that big of a deal but at the time, I was completely irritated, annoyed, and upset. I just wanted to start the process of getting her better, a few hours didn't matter but it was still frustrating. <br /><br />Mallory received 2 chemotherapy drugs over 3 days. <br /><br />During these days she was also put on IV fluids that ran non stop to prevent any chemotherapy from sitting on her bladder and kidneys for too long. <br /><br />At the hospital they give Zofran every 6 hours to prevent nausea which is a common problem with these medications. She also was on constant heart monitors and oxygen as well to make sure she was holding good. We never had a probably with any of these through this round.<br /><br />
<a href="http://en.wikipedia.org/w/index.php?title=Special:Search&search=Carboplatin&redirs=1&profile=default" title="Special:Search">Carboplatin</a>: which did not effect her much while she was receiving it. <br />
<a href="http://en.wikipedia.org/wiki/Etoposide">Etoposide:</a> this chemo PISSED Mallory off, the minute it would hit her system she would be inconsolable, after speaking with some of the nurses about this they informed me that some kids feel like there noses are burning. It also made her smell like metal (one of the weird side effects). <br /><br />Luckily we figured out quickly the Etoposide was the one that was going to effect her the most so every time she had it we would give her benadryl before to help calm down what she was bothered by. <br /><br />She had another blood transfusion before we left, the 1st of many chemotherapy induced ones to come. <br /><br />Honestly we had NO idea of what to expect when we got home, we just knew we would be on house arrest with it being Christmas that was REALLY tough. Having to deliver the bad news of our absence of presence from seeing our family. We really didn't know what to do so we did what we thought was best, the less exposure to people the less likely she'd get ill. It was one of the most AWFUL things we've ever had to do, we missed it, we really did. <br /><br />All things considered, we skyped with Ryan's family, it wasn't the same but at least we got to see them!! <br /><br />Christmas Day for us was wonderful, Mallory was feeling a little crummy but not too bad yet. So we seriously opened gifts for 12 hours straight. We let Jillian lead us, if she wanted to open a toy and play with it then we'd let her, then an hour later she'd pick another one, so on and so forth. We had an amazing dinner donated to us that was so so great, I would haven't been able to pull off doing that myself at all. Jillian and I ran to my moms house to pick up the gifts for my girls and drop off the gifts we had picked up for them. So it wasn't the Christmas we had in mind but it sure was nice to spend all day enjoying out little punkies. <br /><br />The worst part about this Christmas was it wasn't "normal" for us, it hurt, this Christmas hurt us more than anything. To not be able to spend some of that time with our parents, brothers, and sister and all of there amazing kids was the worst. This Christmas will be much better. I had looked forward to baking cookies, bringing Jillian out into the snow, and none of that stuff was accomplished. <br />
<br /><br /><br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-82378624377336955522012-09-13T13:02:00.002-04:002012-09-13T13:02:27.471-04:00Birthday Pictures (by her lovely Mom!) <div class="separator" style="clear: both; text-align: center;">
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2tag:blogger.com,1999:blog-5028365015521060863.post-38153739589658814342012-09-12T22:11:00.000-04:002012-09-12T22:11:12.424-04:00She's come a long way<div class="separator" style="clear: both; text-align: center;">
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-14799777997706402282012-09-08T08:00:00.000-04:002012-09-08T08:23:49.475-04:00(3) The Parts of Offical Diagnosis. <div class="separator" style="clear: both; text-align: center;">
<img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhsxfmYwAV1SMkEyBwIPky8kYu4Cu1xmsLCR6AvexpI_Fl_QscNVPJT9Qr_qsln_qz3O4VSBHJT8z1dS3XCUpvtlmXYAh6Nlh6uy47oCK2_EhJRYZeDvt2KRHY_WMa79GeYUE2cpy2Mh0z/s400/IMG_5532.jpg" width="265" /></div>
<span style="font-size: large;">We waited and waited and waited to hear the news that could change the rest of her life. Mal had to be sedated again to have her bone marrow biopsy and MIBG scan. </span><br />
<span style="font-size: large;"><br />The MIBG Scan, the bone marrow, and the pathology report from the tumor resection would give us all the information that we need to see what the next step for Mallory was.</span>
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<span style="font-size: large;"><br />The sad thing is we've become pro's at scans, blood draws, and sedation's. The first time is always the hardest after that you have to learn to stay strong so that your child can stay strong. </span>
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<span style="font-size: large;"><br />The things they were looking for and we had our fingers crossed that would come back in our favor were:</span>
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<span style="font-size: large;"><b>Staging </b><br />We knew already that she would be not a stage 1 because she had 2 tumors. We had assumed that she would be placed in the Stage 4 Category because of the fact that her cancer moved past the mid line of her body. They had already told us that Stage 4S would most likely not be an option for Mal since she had 2 major organs effected by Neuroblastoma. <b>We knew whatever this came back as wasn't the end of the world, since there were so many factors that go into prognosis and diagnosis. </b></span><br />
<ul>
<li><span style="font-size: large;">Stage 1: Localized tumor confined to the area of origin.</span></li>
</ul>
<ul>
<li><span style="font-size: large;">Stage 2A: Unilateral tumor with incomplete gross resection;
identifiable ipsilateral and contralateral lymph node negative for
tumor.</span></li>
</ul>
<ul>
<li><span style="font-size: large;">Stage 2B: Unilateral tumor with complete or incomplete gross
resection; with ipsilateral lymph node positive for tumor; identifiable
contralateral lymph node negative for tumor.</span></li>
</ul>
<ul>
<li><span style="font-size: large;">Stage 3: Tumor infiltrating across midline with or without regional
lymph node involvement; or unilateral tumor with contralateral lymph
node involvement; or midline tumor with bilateral lymph node
involvement.</span></li>
</ul>
<ul>
<li><span style="font-size: large;">Stage 4: Dissemination of tumor to distant lymph nodes, bone marrow, bone, liver, or other organs except as defined by Stage 4S.</span></li>
</ul>
<ul>
<li><span style="font-size: large;">Stage 4S: Age <1 year old with localized primary tumor as defined
in Stage 1 or 2, with dissemination limited to liver, skin, or bone
marrow (less than 10 percent of nucleated bone marrow cells are tumors).</span></li>
</ul>
<span style="font-size: large;"><b>Histology </b></span><br />
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<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtBoZdvzH5JoZc4oIussvAwSbu1SFgYRcm7_3cUcP7uMW3Pwetp_VcDcA2NAgPWSZOt6E_YvveStCntD9pvwz5jQIXw0pkKUeMCsYk26pTo-u9gPD8j25zIX959As6WBAujzX30H89JgYu/s1600/IMG_5564.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtBoZdvzH5JoZc4oIussvAwSbu1SFgYRcm7_3cUcP7uMW3Pwetp_VcDcA2NAgPWSZOt6E_YvveStCntD9pvwz5jQIXw0pkKUeMCsYk26pTo-u9gPD8j25zIX959As6WBAujzX30H89JgYu/s320/IMG_5564.JPG" width="213" /></a></span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Tumor histology is based on how the neuroblastoma cells look under the
microscope. Tumors that contain more normal-looking cells and tissues
tend to have a better prognosis and are said to have a <i>favorable histology</i>.
Tumors whose cells and tissues look more abnormal under a microscope
tend to have a poorer prognosis and are labeled as having an <i>unfavorable histology</i>.</span><br />
<span style="font-size: large;"><br /><b>We wanted this to come back as FAVORABLE</b></span>
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<span style="font-size: large;">DNA ploidy</span></h3>
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<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfOPV_r_dsItbTlRqD4dLVAler1mapXyQaiYJH-NTwYdTXIsqoWAg7MRQ8KdrN0u0hY3BqLWLPKLheXNWRebuaUOvL1JCpMrj72ROKblbC0pvlUvSDYZKA-2_H6hTXo-k-Ml7ow6g1v3Ge/s1600/Copy+of+IMG_5553.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfOPV_r_dsItbTlRqD4dLVAler1mapXyQaiYJH-NTwYdTXIsqoWAg7MRQ8KdrN0u0hY3BqLWLPKLheXNWRebuaUOvL1JCpMrj72ROKblbC0pvlUvSDYZKA-2_H6hTXo-k-Ml7ow6g1v3Ge/s320/Copy+of+IMG_5553.JPG" width="320" /></a></span></div>
<span style="font-size: large;">The amount of DNA in each cell, known as ploidy, can be measured by
special lab techniques, such as flow cytometry or imaging cytometry.
Neuroblastoma cells with about the same amount of DNA as normal cells
are classified as <i>diploid</i>. Cells with increased amounts of DNA are termed <i>hyperdiploid</i>. </span><br />
<span style="font-size: large;"><br />In infants, hyperdiploid cells tend to be associated with earlier
stages of disease, respond better to chemotherapy, and usually predict a
more favorable prognosis (outcome) than diploid cells. </span>
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<span style="font-size: large;"><br /><b>We wanted this to come back as hyperdiploid cells. </b></span>
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MYCN gene amplifications</span></h3>
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<span style="font-size: large; font-weight: normal;">this one SCARED the shit out of us,<b> </b></span><span style="font-size: large;">we prayed and prayed and prayed this would come back NOT amplified. When a child has cancer cells it means that cells are dividing, this can mean only 3 cells or thousands of cells. Which is where the M-YCN amplification lies when the cells are dividing in mass amounts. To have a better diagnosis your chances of survival are higher obviously with low - no amplification of the cells. <br /><br />After reading many many stories of other children, a lot of the stories we were seeing involved children passing due to that amplification of cells. <br /><b>So we prayer and prayed and prayed that she would not have MYCN. <br /><br /><br />This is the "Risk" Categories </b></span><br />
<h3>
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Low risk</span></h3>
<ul>
<li><span style="font-size: large;"> All children who are Stage 1 </span></li>
<li><span style="font-size: large;"> Any child who is Stage 2A or 2B and younger than age 1</span></li>
<li><span style="font-size: large;"> Any child who is Stage 2A or 2B, older than age 1, whose cancer has <i>no</i> extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 2A or 2B, older than age 1, whose cancer has extra copies of the MYCN gene <i>but</i> has a favorable histology (appearance under the microscope) </span></li>
<li><span style="font-size: large;"> Any child who is Stage 4S (younger than age 1), whose cancer has
favorable histology, is hyperdiploid (excess DNA) and has no extra
copies of the MYCN gene</span></li>
</ul>
<h3>
<span style="font-size: large;">
Intermediate risk</span></h3>
<ul>
<li><span style="font-size: large;"> Any child who is Stage 3, younger than age 1, whose cancer has <i>no</i> extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 3, older than age 1, whose cancer has <i>no</i> extra copies of the MYCN gene and has favorable histology (appearance under the microscope)</span></li>
<li><span style="font-size: large;"> Any child who is Stage 4, younger than age 1, whose cancer has <i>no</i> extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 4S (younger than age 1), whose cancer has <i>no</i> extra copies of the MYCN gene and has normal DNA ploidy (number of chromosomes) and/or has unfavorable histology</span></li>
</ul>
<h3>
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High risk</span></h3>
<ul>
<li><span style="font-size: large;"> Any child who is Stage 2A or 2B, older than age 1, whose
cancer has extra copies of the MYCN gene and unfavorable histology
(appearance under the microscope) </span></li>
<li><span style="font-size: large;"> Any child who is Stage 3, younger than age 1, whose cancer has extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 3, older than age 1, whose cancer has <i>no</i> extra copies of the MYCN gene but has unfavorable histology </span></li>
<li><span style="font-size: large;"> Any child who is Stage 3, older than age 1, whose cancer has extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 4, younger than age 1, whose cancer has extra copies of the MYCN gene</span></li>
<li><span style="font-size: large;"> Any child who is Stage 4 and older than age 1</span></li>
<li><span style="font-size: large;"> Any child who is Stage 4S (younger than age 1), whose cancer has extra copies of the MYCN gene</span></li>
</ul>
<h3>
</h3>
<span style="font-size: large;">We had NO idea what Mallory would be in the "risk" categories, this determine her treatment more than anything. She would most likely not be Low Risk because her 2nd tumor would not be able to be removed. She would have to have chemotherapy, there was no way around this. We were looking at Intermediate Risk or High. We had hope that she would be in the Intermediate Category for many different factors but the biggest is the cure rate is MUCH MUCH higher.</span><br />
<span style="font-size: large;"><b><br /></b><b>Prognosis: </b></span>
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<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Children in the low risk category have a five-year survival rate between
90 to 95 percent.</span><br />
<span style="font-size: large;">Children in the intermediate risk category have a
survival rate of 80 to 90 percent.</span><br />
<span style="font-size: large;">Children in the high risk group has a
survival rate of 20 to 40 percent.</span><br />
<span style="font-size: large;"><b><br />In 1960 the prognosis for children with neuroblastoma was ZERO! </b></span><br />
<span style="font-size: large;"><br /><b>Hopefully the world of medicine will eventually make this a 100%! </b></span>
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<span style="font-size: large;"><br />We received a piece of the puzzle on December 12th that the MIBG showed that Mallory's Neuroblastoma had NOT spread to any other organs, the only spot that was showing up was the tumor that we knew she already had. The MIBG scan lights up any active Neuroblastoma cells. </span>
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<span style="font-size: large;"><br />on the 13th we got the news that Mallory did NOT have any neuroblastoma in her bone marrow! Another great piece of the puzzle!</span>
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<span style="font-size: large;"><br /><br /><br />Friday December 16th Ryan Wrote this:</span>
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<span style="font-size: large;"><br /><i>Oh, we can see the light at the end of the tunnel, and it is a warm and
glorious light. It is God's light. God showed us that he will see us
through this difficult time, and we will endure.<br /><br />
Chemo starts next Wednesday. They are going to keep her at the hospital for a few days, but she should be home by Christmas.</i>
<i><br /><br />
We're not exactly thrilled that we have to isolate our daughter during the holidays, but make no mistake about this:</i>
<i><br /><br /><b>This is by far one of the best Christmas presents we have ever received!</b></i></span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><b>Mallory had NO MYNC AMPLIFICATION AND FAVORABLE HISTOLOGY! PRAISE THE LORD! </b> </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Her official Diagnosis was <b>Stage 2B Neuroblastoma, Intermediate Risk.</b>The stage 2b was very hard for them to place, the chances of having a child so young with a tumor that was on opposite sides of the body is very RARE, let alone having double adrenal tumors. They have only ever had a few cases of this. <br /><b><br />We checked everything off<br />No Cancer in the bones<br />No Cancer in the bone marrow</b></span><br />
<span style="font-size: large;"><b>No MYNC amplification<br />Favorable Histology</b><b><b><br />Hyperdiploid cells</b><br /><br />I remember crying and crying and crying. And holding my sweet dear love. We would start chemo the week before Christmas. We didn't know what to expect, it wasn't going to be great, but to get her to the point where she needed to be we would have to do this. We would have to pump posion into our little girls body so that she could LIVE. </b>So that she had a chance at life. <br /><br />Her prognosis was 90% cure rate. What a glorious glorious number to hear. No one should ever be given a number to determine what chance your child has at life. </span>
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<span style="font-size: large;"><i>(Mal's 1st hair cut. People looked at us like we were NUTS when we were getting her hair cut off, but she would lose it regardless so we thought we'd at least have a keepsake!) </i></span><br />
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Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com1tag:blogger.com,1999:blog-5028365015521060863.post-61749494550815981992012-09-07T11:08:00.002-04:002012-09-08T08:24:01.050-04:00Life is Good<div class="separator" style="clear: both; text-align: center;">
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Mal is going to be 1 in 16 DAYS! WOW WOW WOW! <br />
Seriously, our little sunshine is going to be 1! <br />
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She is the most sweet, kind, and laid back little girl I know. Jillian was pretty laid back too, but Mallory takes the cake on sweetness. <br />
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Ohhh how blessed are we, we get to have a big big birthday bash for her. We've had over 60 people RSVP for her Birthday Party which is going to turn out to be an amazing event! I just ordered 250 Cards to put on balloons, we are going to rent a helium tank, and put together a TON of balloons for the party to send out for our big balloon launch! <br />
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If you can't make it to the party and want to be a part of the big launch print off these and attach them to balloons and email a picture of them to us! (Ashley Wiersma <---- on facebook). <br />
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com6tag:blogger.com,1999:blog-5028365015521060863.post-17865182048771535932012-09-05T12:54:00.002-04:002012-09-05T16:45:40.825-04:00(2) <div class="separator" style="clear: both; text-align: center;">
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In the next few days we spent majority of the time snuggling our sweet ray of sunshine. The difference between a child an adult having surgery is incredible, Mal bounced back the very next day. Although when she woke up from surgery she lost her little baby cry, we also gained a very very big brave little girl. It took days for the swelling to go down, she gained almost a whole pound from the surgery alone. We received news that day that Mallory had NO CANCER IN HER BONES! One little piece of the puzzle, we had to wait on the pathology from the tumor, and also the MIBG, and bone marrow to know exactly what we were dealing with. After much reading and research, we knew what we wanted, no neuroblastoma in the bone marrow or bones, we wanted favorable histology, and no m-nyc amplification for the best possible news. The waiting game was the worst. <br />
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They prepared us for going home by showing us how to change the patch on her chest (which we had to do every 4 days until she was 6 months old), flush her lines with VCH every morning, and she would be started on many different medications. At the time I felt a huge pain of disapointment at the fact that they could not remove the other tumor. I know that the surgery would have put her at risk, that she would be on medication for the rest of her life, but there are very few cases of double adrenal tumors. And we just wanted our daughter to live, we would deal with whatever life gave us but knowing that they were leaving a significant sized tumor in her little stomach was huge to us, but you have to learn that you are there to love, and they are there to take care of everything that involves her health. <br />
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She received her first blood transfusion the day after surgery, her hemoglobin was quiet low, although she did not lose a whole ton of blood during her surgery even a little bit for a child weighing 11lbs is a lot. I'll never forget the little syringe of blood that they used, this was the first of many transfusions she would have. <br />
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We had a hard time through a lot of this with our friends and family, we tried to be as upbeat as possible. And yet when someone would walk through the door there hearts would sink, in the beginning it was the nurses that kept us going. They hugged us when we cried, they laughed with us, they've seen the best of the best and the worst of the worst. It was tough and at one point I came right out and said it's ok to cry, it's ok to laugh, it's tough for us to even begin to understand. This is our daughter and without everyone's support I honestly don't think we would have made it out as a whole. <br />
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We spent 8 days there, the longest 8 days of my life, Ryan stayed with us the entire time. We had our final meeting before we were discharged because I didn't want to go home without answers. I couldn't bear the thought of having a sick child, of having to take her home without knowing what they were going to do for her. We met with an oncologist (which I won't say her name but trust me I still hate the lady), our social worker, our discharge nurse, and two of our other nurses. We were told that the preliminary pathology report was showing no sign of n-myc amplification and favorable histology, this was not a for sure answer but from what they could see it was looking in our favor. I still didn't want to bring her home, honestly you had us a big pile of SHIT and expect us to just "deal with it", the oncologist said to me "If you can't take care of her, I'm sure we can find someone that can". At that point I wanted to reach across the table and punch that lady in her face. I remember saying to our social worked "DO YOU HAVE A KID WITH CANCER? KIDS DIE FROM CANCER" and he in his sunshine and lollipops attitude says to me "We don't like to think that way". Well of course you don't, it's not your kid. <br />
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We got to go home for 1 day after that, I had a bad taste in my mouth for some of the people we had worked with but when they gave us our Oncologist I was pleased. We have Dr. Axtell, which some of the people I've talked to don't care for him, but we LOVE him. I told him straight up that we didn't want the "whole package of reports", when they got information we wanted it good, bad and ugly.. He is a no bullshit kind of guy, he is incredibly smart, and from the 1st time we met him we had nothing but respect for him. <br />
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We spent our first day at home, feeling like new parents. New parents with no "manual" for what to expect. Our expectations where no longer there, we just wanted her to live. <br />
<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com0tag:blogger.com,1999:blog-5028365015521060863.post-77255461305016095952012-09-03T23:00:00.000-04:002012-09-03T23:04:10.255-04:00The Mallory Story (Part 1)<div class="separator" style="clear: both; text-align: center;">
We had our perfect little wedding last week August 25th on Saturday. </div>
From each detail of the wedding, to the ceremony, to the reception, it couldn't have been any better. <br />
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This past year had its good moments, its bad ones, and now we're onto the amazing ones. <br />
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I think back to last year, I was around 38 anxious weeks pregnant with
our 2nd beautiful daughter. I had a rough August with being pregnant,
between pre-term contractions and absolutely 0 sleep, I was so ready! It
amazes me how much life changed the day she was born. She was such a
sweet little girl, with big chubby cheeks, the smallest newborn whimper,
and everything couldn't have gone more perfect with my labor and
delivery. She was a perfect 7lbs, 10 ounces and 20.5 inches long! And in my opinion she looked so different from her big sis. I can't believe in a little over 2 weeks we're going to be celebrating this beautiful little girl's Birthday. Little did we know that she would have one hell of a 1st year. <br />
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When she was 2 weeks old, I fell asleep on the couch she started to whimper and I went to nurse her. I then said to Ryan "Please take Mal, somethings not right". I put my hand on my stomach and experienced some of the worst pain of my life, so bad that after 3 minutes Ryan called an ambulance. When I arrived at the hospital they did an ultrasound and found that I had gallstones and pancreatitis on top of it. I spent the next 3 days on antibiotics and had surgery to remove my gallbladder. We stayed with my mom for a week following surgery. <br />
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Mal and I hit a big bump in the road when it came to nursing. She would wake up every hour or less to nurse, it seemed like she was never going to eat more. Believing it was my supply that caused this issue I went to her doctors office and was prescribed a medication to up my milk supply but instead I just walked around with way too much and Mal was still taking the same. After 6 weeks we then went in again and she was prescribed Zantac, thinking that possible it was because she had reflux (although she never puked, I had thought it may be just a bit of an upset tummy since her big sis suffered from extreme colic as a baby). After 7 weeks of fighting it, I threw in the towel on nursing. We went in for her 8 week checkup, at this point she was taking no more than an ounce of formula at a time, which was irritating but manageable. Her doctor then did her 2 month well child visit, checked her tummy, walked out, came back in and decided to do another check. He felt like there might be an enlarged kidney or spleen. I was told that we would be setting up an ultrasound at Helen Devos to check to see if anything was going on.She received her 2 month vaccines and we were on our way. I always call Ryan on our way home from these appointments, to let him know all the cute little statistics and such. For Mal eating so frequently even though it was a little bit at a time she was gaining weight like a normal child. I couldn't get the ultrasound out of my head.<br />
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When we got home from the doctors office Mallory started crying, and crying, and crying. Something I had never experienced with Jillian, usually she just took them like a champion, but then the little red flags started going up even higher. I had gotten a call from Helen Devos about setting up the ultrasound, we had 2 options to go in the next day at 7:30am or to wait for 2 weeks. Thinking that we didn't want the weight of this to hang over us for 2 weeks we would just opt for the next day apt. That night we did a google search about "enlarged spleen or kidneys" well the first thing that pops up is "CANCER". We stopped searching right away, we couldn't bear the thought. That night I remember balling and praying to God that our daughter would not have cancer. I snuggled Mallory all night long, I cried, and cried and cried. <br />
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The next morning Ryan took off of work so that he could be there for the ultrasound. We entered the room and the lady that was doing it was very sweet. She told us that they would call us with the results in a week or so. We had small talk for a little while, she started scanning Mal's left side and STOPPED TALKING, she got up from her chair and told us she had to have the radiologist look at these a minute. My heart started racing, I felt sick to my stomach and we were told nothing at all. She came back in the room and told us that she would be scanning her right side next, still never saying a word to us, she then left the room again and came back with the radiologist for him to scan some more. We were then lead to a different room and told to wait. Knowing that we would not be recieving any news in the next week, knowing that it was entirely possible that we had the kid with cancer was more than we could bear. We sat there for what seemed like an eternity when we were told Mallory's pediatrician was on the phone and had to talk to us. <br />
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I remember just breaking down when he said "They found 2 large masses on Mallory, we're going to figure this out, we'll be praying." My heart sank, it shattered, it fell to pieces. We had no idea if it was cancer, but there were masses, what else could it be? We were introduced to a slew of nurses and an oncologist. They had given us contrast to give to her so we could get a CT in, I held her down as they attempted to put an IV in, which failed to work, I just remember the blood from that alone. How could I take anymore. We were escorted to the 9th floor which is the Hemotology / Oncology inpatient floor of the hospital. By now we had assumed she had cancer, no one could say for sure at this point. Mallory then had a CT scan done, a urine check, and an echocardiogram. We were introduced to Dr. Kurt a pediatric oncologist and Dr. DeMarco who was working with us the whole day. Our families were sitting with us when they broke the news. Mallory had a tumor the size of a baseball on her left adrenal gland and a slightly smaller one on her right side. They were pretty confidant that it was Neuroblastoma because of where the tumors were located and the fact that her catacholomine levels were very elevated. We had never heard of Neuroblastoma. I remember skimming through a chapter of "What to expect the 1st year" and in there it states not to worry about childhood cancer, it is EXTREMELY RARE. The day she was diagnosed all bets were out the window that we no longer knew what to expect. All of our hopes and dreams of our perfect family of 4 just weren't going to happen, our winter of baking cookies, drinking hot chocolate, and doing anything normal just disapeered. <br />
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That was the 1st time I'd ever seen Ryan cry. We both felt completely helpless. <br />
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The next day we were bombarded with different doctors. One of them is one of the top leading Neuroblastoma specialists in the field, at the time we had not known this, but she had papers for us to sign so that they could use any left over tumor tissue, extra blood, or urine to use for research. Ryan and I never 2nd guessed ourselves and signed them right away. If there was any hope that someday they'll find a cure we would do anything we could. We also met with an endocrinologist to go over the removal of both of Mal's adrenal glands and tumors, we were told that she would be placed on steroids for the rest of her life. Everytime she would get sick she would have to take more, every time she gained weight they'd have to adjust her meds. At this point we would do anything just to give us time with her, even if it meant a lifelong medication. We then were told that Mallory would have to have another ultrasound because they feared that her right adrenal tumor was connected to her Inferior Vena Cava. After the ultrasound we were told that in fact it was, that they would not removed this tumor at present time because it was a) very risky b) they believed with chemotherapy they could neuter the cancer where it sits not leaving her adrenal insufficient meaning she would not be on any sort of medication. The adrenal gland would grow to take the place of the one they were removing. She would still be placed on steroids so her body would not go into shock from the removal, but then she would be gradually weaned off from them in a few days. Ryan signed papers that allowed them to give her a blood transfusion if necessary. This was a huge thing for both of us, a blood transfusion? She recieved her MIBG injection<br />
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We then met with Mallory's surgeon who had given us more explanations to what he would be doing. We had hoped and hoped that they could do a laproscopic surgery verses an open abdominal. But because of her sizes and the fact that the tumor was so large that would not be possible. He had hoped that because the tumor was so large that it did not begin to infuse to her stomach and from what the CT had showed it looked like it was just pressing into it. They would also be putting in her central line Broviac, honestly this scared the hell out of me. They explained it to us, we didn't have another option because her size she could not receive a port, and this would prevent her from many pokes. She would also have a bone scan and a bone marrow biopsy to rule out any more cancer spread. <br />
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I remember reading Ryan's prayers <i>Dear God, please be with the surgeons tomorrow. Guide their hands and
their minds to do the best work possible. Please let them have a
productive surgery, and let Mallory come out of this stronger than ever.
Oh, and please God, if it be thy will, please let the doctors leave
all that extra blood on the shelf. They won't be needing it. Amen.</i><br />
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To this day, my heart still hurts when I read this. <i><br /></i></div>
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The next day was the big surgery December 1st, we were lead into a room with Mallory's anesthesiologist, she was a warm hearted person and as the tears floated down our faces she too began to cry. She told us that "I'll be the doctor when we go back, but I'm a mom too!", quiet frankly this was something we will never forget. The love from a person we had just met, that she was taking care of our little baby. They then began to take her back, I held on tight, we all kissed her, and kissed and kissed her. The prayers from around the world started flooding in, for our sweet girl. They were putting in several IV lines in case of her losing too much blood, the thought of never seeing my baby again was heart wrenching, it was the worst feeling in the world. Knowing that she might die was devastating. The took her back at 2:15, everything went flawlessly, the broviac placement and the tumor and adrenal resection. It was not infused in her stomach and when he removed it there was little spillage of tumor cells, a lot of the tumor appeared to be already dying although they could not confirm anything right away. They were able to do the bone scan but not the bone marrow, that would be done when they did her MIBG scan. <br />
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She looked nothing like our sweet little peanut, she was swollen, she no longer had her little baby newborn cry. She wallowed in pain, her stomach was covered in bandages and we felt the stab as well. Watching our daughter go through immense hell, and there was nothing we could do about it. We just had to sit and wait. <br />
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(to be continued)<br />
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I have never fully written out the full story of Mallory's diagnosis, treatment, and remission. With this month being Childhood Cancer Awareness Month and Mallory's Birthday I thought it would be an appropriate time, I plan to elaborate more and more but for now is my rough sketch. <br />
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com3tag:blogger.com,1999:blog-5028365015521060863.post-3034894267333253312012-08-28T10:49:00.002-04:002012-08-28T10:49:57.749-04:00Some more Wedding Pictures :-)<div class="separator" style="clear: both; text-align: center;">
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<br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com3tag:blogger.com,1999:blog-5028365015521060863.post-61873459961427273122012-08-27T12:12:00.004-04:002012-08-27T12:12:59.503-04:00We're MARRIED! <div class="separator" style="clear: both; text-align: center;">
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I'll write a big long blog post later about our absolutely PERFECT day. It rocked! <br /><br />Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com3tag:blogger.com,1999:blog-5028365015521060863.post-79974188376839524332012-08-23T15:37:00.003-04:002012-08-23T15:37:49.039-04:00Clear ScansIt's official Mal is still NED! No active neuroblastoma! What a great beginning to our weekend! Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com4tag:blogger.com,1999:blog-5028365015521060863.post-77305147853983859292012-08-21T12:24:00.003-04:002012-08-21T12:24:53.688-04:00Our Crazy Week :-p Monday : <br /><br />We spent the day CLEANING house, which included scrubbing, washing, and doing laundry. My house is sparkling clean now :-) What a relief! Now we can go about our week and come back from the honeymoon with a nice clean house. <br /><br />We started Mal's SSKI drops. <br /><br />This weekend I finished EVERYTHING for the wedding so this week I get to relax, well sort of. <br /><br />Tuesday (TODAY!): <br /><br />I had to wake up at 6 to get ready to bring Mal to Helen Devos at 7:30, she had to have her MIBG injection. It was heartbreaking, the poor punky had to be poked 3 times to get her IV started. They only needed it for 2 minutes while the injected the Radioactive Isotope into her for tomorrows scans. She screamed and cried, and cuddled with me. But once she got it out she went back to her happy perky self! <br /><br />I ended up calling clinic to see if they could do Mal's other IV tomorrow, I just feel more comfortable because we get the same guy everytime there. And he knows Mal is very difficult and won't poke her until he's confident that he's found a good one. Usually he gets it on the 1st try and it never takes him more than twice to get it in. <br /><br />We also recieved some WONDERFUL news today about Mal's ultrasound. The cancer spots on her liver have DECREASED along with her Adrenal tumor! This is evidence that she in fact the chemo did it's job and she is STABLE! Her MIBG scan will show any active neuroblastoma cells, but with this ultrasound and low catacholomine numbers they are pretty confident that it should show nothing. So Once again we praise the LORD for these incredible results! <br /><br />Wednesday: (This is my CRAZY day). <br /><br />On top of the MIBG scan, we have a doctors apt for Jillian. <br /><br />She was born with strabismis (lazy eye), and she wore glasses for 4 months, we patched her eye for a few months, and then she had surgery to correct it. Her eyes are PERFECTLY straight but we go in every few months for a check. She is nearsighted which means eventually she'll have glasses but I hope we can hold off until she's a little bit older. Her apt is at 8:45 and will run about 2 hours (If she cooperates)<br />
<br />Which poses a little bit of a scheduling conflict with Mal's scan which is at 11, the thing that stinks is Jill's eye apt is right across the street from Helen Devos but she cannot come with us to this scan. So Ryan has to bring Mal and I have to backtrack all the way home drop off Jillian and drive back up to the hospital. I haven't missed any of her procedures and I don't intend to this time either. <br /><br />Mal's MIBG scan lasts about an hour, she will be sedated for the procedure, and she will be SO VERY hungry when she wakes up. But we will make do, Thank Heavens Ryan's Mom is watching Mal in the morning, she'll be able to keep her busier than I would. <br /><br />Thursday : I get to do NOTHING! Ahhhhhhh a relaxing wonderful Thursday, I am looking forward to just snuggling with the girls. <br /><br />Friday : Manicures & Pedicures with my Mom, Sister and Niece! It's going to be so lovely! Then we have to pick up flowers head back to my house and put together my bouquet. Then it's off to the Country Club to set up for the reception! Then Rehearsal & Dinner :-) <br /><span style="font-size: x-large;"><br /></span><span style="font-size: x-large;">Saturday : I AM MARRYING MY BEST FRIEND! </span><br /><br />(I will have some fine words for the weather man if this "thunderstorm" crap happens!) Sweet Baby Malloryhttp://www.blogger.com/profile/05245939604965675741noreply@blogger.com2