tag:blogger.com,1999:blog-81936286598440016472024-03-10T20:23:29.947-07:00FLAMM FAMKicking Leukemia's Butt Since 2009Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.comBlogger377125tag:blogger.com,1999:blog-8193628659844001647.post-90376949288967672872013-09-28T21:38:00.001-07:002013-09-28T21:38:14.517-07:00Happy Birthday Millie!Millie,<div>
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Today is your 8th birthday. We missed you more than ever today, but we made it through the day by spending time with our family, attending Jager's baptism, taking Austin to see Cloudy With a Chance of Meatballs 2 (which you would have really enjoyed - your laugh would have filled the theater!), being showered with gestures of love by friends, family, and neighbors, and feeling you close by us during this special day.</div>
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They say that time heals all wounds. I hope this is true. We made it through the first month or two smoother than I would have expected. We felt comforted during your transition and that comfort made us feel like everything would be OK. As time moves on and your bedroom sits empty we miss you more with each passing day.</div>
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Your mom and I constantly say to each other, "Millie would have loved this." It is a conflicting feeling to have fun with Austin and enjoy the moment, while at the same time wishing that you were sharing it with us. The interesting thing that we are realizing is that you loved just about everything. You loved life, and your time battling cancer made you appreciate anything good that happened and you enjoyed the small things more than anyone I have ever met. I know you would have loved to be there for all the things we did today, but I know that your mission on this earth has been completed and I know you and know that you are enjoying whatever you are doing. I only wish that I could see the wonderful things that you are up to.</div>
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I know you are proud of your brother. He has started school and he loves it. Mom has convinced him that he should be a gentleman and he is always very proud to hold doors open for people. He misses you so much. He spends an hour or so every day watching the video that Pat made for the funeral. It doesn't make him sad. He smiles and laughs as he sees all your pictures, and gets a little embarrassed by the pictures of you dressing him up like a fairy or princess when he was younger.</div>
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I wish I had more time with you, but I am so grateful for the time I had. I'm grateful that you lived a happy life for three and a half years after your original diagnosis. We made so many amazing memories during that time, and it was thanks to an amazing medical team at Primary Children's Medical Center, as well as the fantastic team that took care of you at the Children's Hospital of Colorado, as well as the encouragement and advice we received from the team at MD Anderson.</div>
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We wanted your birthday to be a celebration of your legacy, not a day of mourning, and it was. You always chose to be happy, and we do our best to make that same decision every day.</div>
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I love you and miss you dearly,</div>
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Dad</div>
Bradyhttp://www.blogger.com/profile/02299215197321453603noreply@blogger.com65tag:blogger.com,1999:blog-8193628659844001647.post-11981695225529592782013-09-13T15:30:00.000-07:002013-09-13T15:30:38.357-07:00Millie's BFF, Princess Cami<span style="background-color: #f9f9f9; color: #959595; font-size: 12px; line-height: 20px;"><b><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></b></span>
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<span style="background-color: #f9f9f9; line-height: 20px;"><b><span style="color: #674ea7; font-family: Georgia, Times New Roman, serif; font-size: large;">Millie's Princess Foundation and I would like to introduce you to</span></b></span></div>
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<span style="background-color: #f9f9f9; line-height: 20px;"><b><span style="font-family: Courier New, Courier, monospace;"><span style="color: #959595; font-size: 12px;"> </span><span style="color: magenta; font-size: x-large;">Princess Cami </span></span></b></span></div>
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<span style="background-color: #f9f9f9; line-height: 20px;"><b><span style="color: #674ea7; font-family: Georgia, Times New Roman, serif;">aka Millie's Rock, her BFF, and her Cancer Buddy</span></b></span></div>
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<span style="background-color: #f9f9f9; font-family: Arial, Helvetica, sans-serif; line-height: 20px;">I don’t know where to start… </span><br />
<span style="background-color: #f9f9f9; font-family: Arial, Helvetica, sans-serif; line-height: 20px;">I have so much love for Princess Cami and I know you will too. Cami made my Millie’s life as normal as it could be. She helped Millie feel like she wasn’t alone. When Cami came to visit, the IV poles, tubes sticking out of her body, and the bald head all disappeared. When Cami came there were only smiles and giggles, nothing else mattered. Cami had the same cancer Millie had so she had somewhat of idea of what Millie was going through. Sadly right after we buried our beautiful, baby girl, Cami’s cancer returned. Now she knows exactly what Millie was going through. This incredible, little lady knew cancer was nasty before, but now she knows the shocking truth as she just witnessed it take her best friend. Sweet Cami even stood up at 7 years old and spoke at Millie’s funeral. We were heartbroken to hear the news and knew that </span><span style="background-color: #f9f9f9; line-height: 20px;"><span style="font-family: Arial, Helvetica, sans-serif;">we wanted to step up and help this beautiful family. </span></span><span style="background-color: white; font-family: Arial, Helvetica, sans-serif;">We are so grateful for all you've done for our family, and I'm not in a position to ask for anything, but we'd appreciate any support you can give Cami and her amazing family.</span><br />
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<span style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;">Here's the<b><i> </i></b></span><a href="http://milliesprincessrun.org/princess-cami" style="font-family: Arial, Helvetica, sans-serif;" target="_blank"><b><i>link</i></b></a><span style="font-family: Arial, Helvetica, sans-serif;"> for the fundraiser that </span><span style="color: #674ea7; font-family: Georgia, Times New Roman, serif;"><a href="http://milliesprincessrun.org/princess-cami" target="_blank"><b>Millie's Princess Foundation</b></a></span><span style="font-family: Arial, Helvetica, sans-serif;"> is holding for Cami. If nothing else, go watch the short video of these two little fighters journey together. </span></span><br />
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<span style="background-color: #f9f9f9; font-family: Arial, Helvetica, sans-serif; line-height: 20px;">We love you Princess Cami.</span>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com10tag:blogger.com,1999:blog-8193628659844001647.post-62199886250527502032013-08-17T10:50:00.002-07:002013-08-17T10:50:37.105-07:00Don't Miss It.....Cameron Rafati performing TONIGHT, the details are in the short YouTube clip.<br />
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Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com2tag:blogger.com,1999:blog-8193628659844001647.post-10213478494690703802013-07-31T10:53:00.000-07:002013-07-31T10:53:48.400-07:00Last Day for Millie's Outfit<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Today is the last day to purchase Millie's One and Only clothing line. We are extremely grateful to Persnickety Clothing for helping Millie's deepest desires to come true. We are honored that they are donating ALL proceeds to Millie's Princ</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ess Foundation. We feel so blessed and loved. Our family can't wait to see Millie's creations running around town. Thank you for everything! We are so blessed to have such an incredible support system in every single one of you.</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">If you are interested in purchasing Millie's outfit you can go <a href="http://www.persnicketyclothing.com/" target="_blank">HERE</a></span>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com0tag:blogger.com,1999:blog-8193628659844001647.post-88226962057853158332013-07-25T12:02:00.000-07:002013-07-25T12:17:18.728-07:00Dreams Continue to Come True for Millie<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Another dream for Millie came true today. Thank you Persnickety for making her a fashion designer!!!</span><br />
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Amelia (Millie) Flamm came into our lives as a result of a recent company service project. We haven’t been the same since.<br />
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Once a quarter we do a service project to increase the happiness of those within our sphere of influence. After lea<span class="text_exposed_show" style="display: inline;">rning about Millie and her desire to be a fashion designer, we decided we’d like to help make that dream come true.<br /><br />Our design team took a day and met with Millie to see which of her drawings would work best. We discovered Millie was a very talented artist – and a very talented “whistler” as you’ll see from the video.<br /><br />After deciding on the perfect art piece, we learned from Millie’s parents that her time left was short. Indeed very short.<br /><br />We rushed the design and sample process so we could get a finished product in Millie’s hands before she passed.<br /><br />The day we brought the finished outfit to Millie’s house she was so weak she would only wake for minutes at a time and<br /><br />her parents didn't expect her to make it through the day.<br /><br />We gave it to her Dad, left, and prayed for a miracle that she would wake up to see what she had created – to see her dream come true.<br /><br />Finally, she woke, got up and hugged her mom, then laid down and slipped away free from the pain and restraints of this life.<br /><br />We learned that throughout the struggle and fight against leukemia, Millie never complained. She spent her time and energy worrying about and helping others.<br /><br />Her Motto was “Stay Strong.” She has left a legacy of faith, strength and inspiration and will always be a reminder to us to Do and Be Better.<br /><br />Millie’s outfit will be for pre-order on our site <a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.persnicketyclothing.com&h=RAQGt6LkH&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.persnicketyclothing.com</a> and at participating online retailers for the next week.<br /><br />All proceeds will be given to Millie’s Princess Foundation.<br /><br />But the Millie Outfit Today and Support The Fight Against Leukemia.<br /><br />Visit <a href="http://www.persnicketyclothing.com/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.persnicketyclothing.com</a> and participating online retailers<br /><br />For more of the story visit our blog: <a href="http://www.persnicketyclothing.com/blog" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.persnicketyclothing.com/blog</a></span></div>
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To Read Her Story Go <a href="http://www.persnicketyclothing.com/blog" target="_blank">HERE</a>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com3tag:blogger.com,1999:blog-8193628659844001647.post-34872687987603250852013-07-18T22:24:00.001-07:002013-07-18T22:24:18.042-07:00One MonthIt has been a while. Two and a half months ago I wrote most of a very long blog post to catch us up. I'll have to finish it and get it up soon, but I didn't want to let today pass without writing something. This is probably more for my sake than anything, but feel like sharing tonight.<br />
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Dear Millie,<br />
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A month ago you were freed from your pain. I miss you more each day but I am happy for you. <br />
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In December we learned that it was not likely you would survive. In February we were told you were out of options. We all refused to quit and fought on. When bad news came it was very hard on your mom and me. I felt like I had failed you. I felt that if I was unable to protect you from this that I wasn't good for anything. I was heartbroken. We never gave up hope and knew you were capable of miracles, and you showed us many. <br />
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I know you did everything you could, and I know your mom and I did everything we could.<br />
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During those hard months I mourned your loss. On May 17th, two months and one day from today - our 10 year anniversary, we learned that there were no more options, and this time there was absolutely nothing we could do about it. What a bittersweet thing it was to hold you and love you, knowing that your time was limited, but protecting you from the pain of worrying about it. I am so grateful I got those extra months with you. <br />
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Those were not easy months for any of us, but they were especially tough for you. I know that those extra months were for your mom and me. I know that we needed the time to accept that this was what was best for you. You didn't complain much, but I can imagine how hard those months were for you. <br />
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You were too little to truly understand how brave you were or how many people you inspired. I wish I could have explained it to you, and I certainly tried. <br />
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I will never forget one of the last things you said the night before you left this life. I left the room in tears, horrified that I had to watch you suffer and that I had to let you go. You turned to your mom and said "tell dad to think of his brave Millie." <br />
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I miss you terribly, but I have not mourned your loss this past month. You suffered enough. I love you too much to wish you were still here suffering. I need you here with me, but I know that God did what was best for you. All I ever wanted was what was best for you, and if living the rest of this life without you is what is best for you, then I will not complain. I will be brave for you.<br />
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We have tried to serve others in your name. This year's Millie's Princess Run was amazing. I can't believe how many people helped, and know you were proud. We are not done. We have big plans for how to help others. I feel you close to me when I help others - frankly my desire to serve may be a bit selfish at this point.<br />
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I must have told you this hundreds of times but I will say it again. You are my hero. I am so proud to be your dad, and I hope I can be a better person so that when we meet again you will be proud of me too.<br />
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Love,<br />
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Dad<br />
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com28tag:blogger.com,1999:blog-8193628659844001647.post-14579178996970250042013-01-01T20:51:00.001-08:002013-01-01T21:53:11.708-08:00Bringing in 2013 Bald and BeautifulMillie, Brady, and Austin just shaved their heads together over facetime. So grateful for technology that allows my family to be together when we have to be apart.<br />
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BRING IT 2013! WE ARE READY! </div>
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Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com24tag:blogger.com,1999:blog-8193628659844001647.post-90189464354427804012012-12-24T20:44:00.001-08:002012-12-24T20:44:47.625-08:00Thank you<span class="userContent" style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Pulled up to the house, parked in the garage, and started crying. Sobbing really. I just couldn't walk into my empty house. I want Millie home. This isn't fair. She shouldn't have to do this again. Finally, I pulled myself together, got Austin out of the back (he was asleep) and started to get settled for the night. Jack started to bark so I slowly wandered to the front door. Not only had my driv<span class="text_exposed_show" style="display: inline;">eway been shoveled, but sitting on my porch was so much love. Some people left notes and some did not, either way I want you all to know how much I needed the pick-me-up and the Christmas cheer. I am amazed at the love that we are given. Not only was my porch covered with gifts, but Millie and Austin have been showered with them the last couple days, not to mention Brady and I. So many of you have gone out of your way to help our whole family feel loved and support. I don't know if I would be as positive as I am if I didn't know how many people were backing us every moment of every day. We can do this. Millie can do this. I know it. I wish I could give each one of you a huge and tell you I love you and I am deeply grateful, but I can't, so please take this message and know that your kindness has been noticed, needed, and appreciated. Thank you and Merry Christmas.</span></span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><span class="userContentSecondary fcg" style="color: grey;"> </span></span>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com10tag:blogger.com,1999:blog-8193628659844001647.post-57627805316603096032012-11-13T19:44:00.000-08:002012-11-13T19:44:08.557-08:00Bye Bye Broviac<div class="separator" style="clear: both; text-align: left;">
I already wrote that Millie got her broviac out, but I didn't share what the day meant to her and to us. Millie has had some sort of tube sticking out of her body since she was 4 years old. First she had a Picc line, then they switched to a Port and before her transplant she had to get the Broviac. Her chest is covered in scars from everything being placed and then removed again. Every time I see them I am reminded of how incredible she is. It is a constant reminder of everything she has been through. Millie couldn't wait to get her line out! Her list of why: I can play with Jack (our dog) without worrying if he will bite my tubes, Austin and I can rough house without mom yelling, "STOP, he will pull your tubes", SWIMMING, taking a bath and shower for the first time in a really long time, running around more freely, and it also means I don't need my fluids, and I don't need as many medicines anymore, we don't have to flush my lines and I don't have to taste how nasty they are. It was the worst. </div>
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I have to admit it was strange to see her tube free. She didn't seem like MY Millie. My Millie has chemo, fluids, and medicine running through her, she has tubes sticking out of her chest. Those things have been a part of her for so long and now they're not. It was amazing to say goodbye, but strange all at the same time. </div>
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It will be amazing to see Millie be Millie without all the extras. </div>
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Meet Porter.<br />
He is awesome and I admire him so much. I can't imagine the strength it must take for him to face losing his leg to cancer at 16 years old, but he smiles. Oh, how I love all these cancer kids.<br />
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We had to get a couple pictures before her surgery. Isn't it crazy that she had that sticking right out of her body.<br />
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Millie and her comforts.<br />
Blankie and Lemur have been through everything with her. When we aren't allowed to stay they are. Is it weird to be grateful for items? Because I am. I love that lemur and blankie. <br />
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Even though she'd been at the hospital all day, been under anesthesia, and had surgery she still wanted to be outside playing.<br />
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<b><span style="font-size: x-large;">I love my tube free girl!</span></b>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com7tag:blogger.com,1999:blog-8193628659844001647.post-74465096842810805662012-11-11T14:33:00.001-08:002012-11-11T14:33:38.287-08:00What we've been doing...<div class="separator" style="clear: both; text-align: center;">
Pictures from September and October.</div>
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com2tag:blogger.com,1999:blog-8193628659844001647.post-18228552407492370652012-11-10T12:43:00.002-08:002012-11-10T12:43:47.636-08:00Birthday, CureSearch, 100 Days!<div class="separator" style="clear: both; text-align: center;">
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So much has happened in the last month or so and I feel I will never catch up on the blog. Sometimes I wonder why I even write, but I know why. I forget everything, even the moments I think I will hold onto forever, or the funny things Austin and Millie say or do. I know that one day I will look back on this blog and be so grateful that I kept some sort of account from all of this. That being said...</div>
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The end of September was a huge month for us. We celebrated Millie's 7th birthday and I can honestly say that there were sometimes doubts that was won't reach it, but we did and Millie is doing incredibly well. I am grateful every single day for the prayers that have come her way and ours. I don't have the right words to say how amazing it is to be home with my family all together and not separated by the hospital anymore. All that is past us now, and I am typing today listening to Millie and Austin singing while eating their lunch, OK now they are fighting, but I'm still grateful. </div>
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We also celebrated Amelia hitting her 100 day mark post transplant. This was a big deal for her. They tested her marrow and we found out she had 100% of her donor marrow and that she was also cancer free! She was able to start tapering off her meds, have her broviac removed, eat basically whatever she wants, and just feel a little more like herself in general. </div>
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It was also the CureSearch walk. What an amazing experience that was. Not only for my family, but the whole childhood cancer community. Team Amelia really stepped up and we were able to raise an insane amount of money for research. Thank you to everyone that donated and to everyone that came out to walk with Millie and her cancer friends. I was in awe of how many people were there for us. I am speechless with the support and love that always comes our way. I am so blessed and honored to have so many wonderful people around us. </div>
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Millie's birthday</div>
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Isn't' she lovely.<br />
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Make a wish sweet angel.<br />
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2nd Annual CureSearch Walk in SLC. </div>
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Sadly I never got a group picture of our entire team and I also struggled at taking pictures at all. I did get a few, but if anyone has some good ones of Team Amelia please send them my way. </div>
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Millie was lucky enough to have 2 other amazing fighters walking with us this year. Thank you Nico and Spencer for bring your families and joining our team in honor of Millie when we should have been walking for you. You both are my hero, and Millie is going to be a better person for knowing you. Cancer Sucks, but it has also brought many amazing people into our lives. </div>
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Help Them Grow Old, WEAR GOLD! </div>
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Nico and Millie<br />
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Since Millie hit her 100 day mark Nico gave her a pad of 100 dollar bills! No joke! A dollar a day.<br />
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We will forever be in debt to the nurses that care for Millie and we were so grateful to see some of them<br />
there. We love you ladies! You make a difference in our lives.<br />
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We can always count on Swoop to come support Millie and this time he brought all his mascot friends with him. THANK YOU! All the kids were so happy to see you there.<br />
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OK, we seriously have the best nurses, including our home health nurse, Dylan. He is the best! So grateful to the support and care he gives Millie.<br />
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<span style="text-align: center;"><span style="font-size: small;">Spencer and fam, I am truly in awe of you. Spencer is honestly a miracle walking and there he was walking and supporting us.</span></span></div>
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<span style="font-size: large; text-align: center;">More Team Amelia walkers: </span><br style="font-size: x-large; text-align: center;" /><span style="font-size: large; text-align: center;">love you all!</span></div>
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And some cancer fighters we saw along the way. The one and only Cami and the rock star Rachel.<br />
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<b>GO TEAM AMELIA! </b><br />
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com1tag:blogger.com,1999:blog-8193628659844001647.post-11772061113844556292012-11-08T22:13:00.001-08:002012-11-08T22:13:52.599-08:00P.S. I Adore You: Meet The Flamm FamilyMy amazing friend and fellow cancer mom helped launch an amazing website today with incredible deals on some seriously fabulous items, and the best part is they are supporting childhood cancer research. I was honored when Chelsea asked if Millie could be the first family that they featured and even more honored to share the love that so many have given our family.<br />
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Check out their incredible deals <a href="http://www.psiadoreyou.com/" target="_blank">HERE </a>and read about Miss Millie <a href="http://psweadoreyou.blogspot.com/" target="_blank">HERE</a>.Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com0tag:blogger.com,1999:blog-8193628659844001647.post-25328613161661373172012-09-30T21:21:00.001-07:002012-09-30T21:21:35.700-07:00Day 95 or so<b><span style="font-size: large;">This was written last week around day 95, just never got around to posting it and I'm trying to catch up. It reads like Amelia hasn't had her birthday yet, but it was Friday. Today is also her day 100, and all her test results are back. </span></b><br />
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<span style="font-family: inherit;">At the end of this week I feel a little less </span>pressure<span style="font-family: inherit;"> on my shoulders. I feel like I can breath. Millie is CANCER FREE and there is so much to celebrate. We are coming up on her 7th birthday, the CureSearch walk, and her 100 day post transplant. Life is not normal by any means, but for us it's starting to feel like it is.</span><br /><span style="font-family: inherit;">All of Amelia's tests aren't back yet, we are still waiting on her</span><span style="background-color: white; color: #15222b; font-family: inherit; line-height: 20.78333282470703px;"> </span><span style="color: #15222b; font-family: inherit;"><span style="line-height: 20.766666412353516px;">chimerism in her marrow </span></span><span style="background-color: white; color: #15222b; font-family: inherit; line-height: 20.78333282470703px;"> (translation; how much of her marrow is from the new donor, hopefully 100%). The results of this test will decide how the next few months go. </span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #15222b; line-height: 20.78333282470703px;"><br /></span><span style="background-color: white;"><span style="color: #15222b;"><span style="line-height: 20.78333282470703px;">I have been asked a lot if Amelia is fine now that she is cancer free and if she can go to school and stuff. The answer is No. The plan is still the same. What is keeping Amelia home and with that lovely mask on is her medication called Cyclosporin. Is it was keeps her body from fighting off her new marrow. It weakens her immune system. She will </span><span style="line-height: 20.766666412353516px;">continue</span><span style="line-height: 20.78333282470703px;"> to take it for about 3 more months and then she needs a few months to recover from it. We are hoping things will be pretty "normal" for her near the end of March.</span></span></span><span style="background-color: white;"><span style="color: #15222b;"><span style="line-height: 20.78333282470703px;"><br /></span></span></span><span style="background-color: white;"><span style="color: #15222b;"><span style="line-height: 20.78333282470703px;">All these pictures are from September 26, the day Millie's marrow was tested. I felt so alone and scared. Thankfully we ran into a few of our cancer buddies, had one of our favorite nurses (really, they're all awesome), and got to see Dr. Verma. We miss her! It really helped take the edge off to be surrounded by so many people that I know care about Millie. Thank you also for everyone who fasted along with us to prepare for this day. As you know our prayers were answered and Amelia was declared cancer free. </span></span></span><span style="background-color: white;"><span style="color: #15222b;"><span style="line-height: 20.78333282470703px;"><br /></span></span></span></span><br />
<span style="background-color: white;"><span style="color: #15222b; font-size: x-small;"><span style="font-family: inherit; line-height: 20.78333282470703px;">Exhale. </span></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYhqY6IEGUlziueyiZsQ35l71KZsVQqrxMyrGbz0P0IMrvYAP0xdZt3k_zN8retn-2Y9fmEs05BE2qbDIa235jsXceUR0KvubM2jMUiQvDzIs3YKUJRdSaPfjbKZA4z_eoGyv4_xltqG0/s1600/September+2012+bone+marrow+check+001.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYhqY6IEGUlziueyiZsQ35l71KZsVQqrxMyrGbz0P0IMrvYAP0xdZt3k_zN8retn-2Y9fmEs05BE2qbDIa235jsXceUR0KvubM2jMUiQvDzIs3YKUJRdSaPfjbKZA4z_eoGyv4_xltqG0/s1600/September+2012+bone+marrow+check+001.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYhqY6IEGUlziueyiZsQ35l71KZsVQqrxMyrGbz0P0IMrvYAP0xdZt3k_zN8retn-2Y9fmEs05BE2qbDIa235jsXceUR0KvubM2jMUiQvDzIs3YKUJRdSaPfjbKZA4z_eoGyv4_xltqG0/s640/September+2012+bone+marrow+check+001.JPG" width="640" /></a><br />
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com7tag:blogger.com,1999:blog-8193628659844001647.post-79904295327532927522012-09-17T16:04:00.001-07:002012-09-17T16:04:36.385-07:00Miss Millie<div class="separator" style="clear: both; text-align: center;">
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com4tag:blogger.com,1999:blog-8193628659844001647.post-69796552658532277252012-09-02T09:39:00.000-07:002012-09-02T20:29:26.311-07:00September: Help Them Grow Old, Wear GOLD!<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">It's September and this is a HUGE month for our family. September is the start of Childhood Cancer Awareness Month, GO GOLD, and please tell everyone. If you are really brave you can even tell strangers, Millie does! September also brings Miss Millie's 7th birthday. It's on September 28 and we have a lot to celebrate! Want to celebrate with us? Come support Millie and all our Cancer Cutie friends on the 29th at the CureSearch walk in Sugar House Park. </span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">It's only</span><b style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> $10</b><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> for adults, and kids are </span><b style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">FREE</b><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">. </span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">CureSearch is Amazing. They donate 100% of money raised at the walk to fund Childhood Cancer Research, 100%! We Need A Cure and helping raise money for research is the best way to make that happen. We will also be celebrating Millie reaching her 100 day post transplant mark, which is September 30th. </span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> </span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">P.S. <b>MILLIE WILL BE THERE</b> and we ca<span id="goog_767258683"></span><span id="goog_767258684"></span>n't wait. </span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">You can sign up for Team Amelia <b><a href="https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1012842&lis=1&kntae1012842=A9F8F941B4C24F458ADA367DC462F082&team=4982367&tlteam=0" target="_blank">HERE</a>.</b></span><br />
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<b>Miss Millie 2009 right before her 1st cancer diagnosis. Her initial treatment was just over 2 years when we found out that Amelia still had cancer 3 days after we had celebrated Kicking Cancer's Butt. </b><br />
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<b>4 years old</b><br />
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<b>You have cancer baby.</b><br />
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<b>Way To Go Millie! You Did It! </b><br />
<b>February 2012 </b><br />
<b>6 years old </b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEgyicxHPQstbOihP6Jr6zwIfJk6GCumxY7C3SEDhEINStNclLkCGvebsIhMyjFtgZHOEjt-xhXVPzy4nu_W9zrFgOoGOcw-sLbTYqLo14WS9QUYyoSGqkRM8yP9IlGfVy256eERIgeky2/s1600/Feb+2012+064.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEgyicxHPQstbOihP6Jr6zwIfJk6GCumxY7C3SEDhEINStNclLkCGvebsIhMyjFtgZHOEjt-xhXVPzy4nu_W9zrFgOoGOcw-sLbTYqLo14WS9QUYyoSGqkRM8yP9IlGfVy256eERIgeky2/s400/Feb+2012+064.JPG" width="266" /></a><br />
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<b>We found out about Millie's relapse 3 days later. She had around a 96% cure rate and it wasn't good enough, it still came back. It will NEVER be good enough until it's 100% cure rate.</b><br />
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<b>Watch Out Cancer! Super Millie is coming for you, AGAIN! </b><br />
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<b>After 3 rounds of intensive chemotherapy treatments and 8 doses of radiation, Millie's body was prepared to have her bone marrow transplant. We couldn't risk waiting any longer. She went into transplant not having a perfect marrow match and also having some leukaemia. We pray every day that her last blasts of chemo and radiation were enough to put her in full remission before starting yet another battle for her life. </b><br />
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<b>June 22, 2012. Happy BMT Birthday! </b><br />
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<b>Please help us cure childhood cancer! Even after everything Millie has gone through and a transplant she still only has a 60% chance of her cancer not coming back. Please, come walk with us. You can make a difference. Sign Up <a href="https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1012842&lis=1&kntae1012842=A9F8F941B4C24F458ADA367DC462F082&team=4982367&tlteam=0" target="_blank">HERE</a> to walk with Team Amelia.</b><br />
<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com3tag:blogger.com,1999:blog-8193628659844001647.post-34087261734620077292012-08-19T09:07:00.002-07:002012-08-21T18:45:35.571-07:00Day 63<div>
Millie is doing wonderfully. She is feeling so much better (she's dancing around the family room right now). She has been making it whole days without stomach pain and she didn't need any transfusions last week. They went down on her IV fluid intake and there is talk of taking her completely off IV if she ups her drinking. If that happens there is no more need for her broviac and it can come out!!!!!<br />
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I honestly haven't seen Millie without a tube sticking out of her chest since she was 4, she is almost 7. She will be covered in scars, but tube free and it's going to be a beautiful sight. Now all I have to do is get her just as excited with thoughts of swimming and taking a bath. Those are two good motivators!<br />
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Her hair is coming in, so are her eyebrows, and lashes. Her lashes are so dark I have had few people ask me if she's wearing eyeliner. We are all just so use to seeing her hairless I think it will take some getting use to. </div>
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Millie is suppose to get 4 doses of a chemotherapy called, Methotrexate, in her spinal fluid via a spinal tap, but her platelets have not been up high enough for the doctors to feel comfortable doing it. She hasn't had to receive a transfusion, but her platlets are still low at 20. They'd like them to be above 50 to move forward, so I don't know if they are even going to give her the chemo anymore. It's the protocol for bone marrow transplants and helps to prevent CNS relapse. I hate not doing it, but at the same time I am grateful she doesn't have to have any more chemo aka poison running through her spinal fluid. I will know more on Monday when we go back in for her check-up. In the mean time here is a little of what we have been doing the last week or so...</div>
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Playing with Jack Attack.</div>
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Austin being Austin.<br />
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Cupcakes!</div>
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So you know that Cupcake App? Well my kids love it and so their freaking amazing dad brought it to life for them. Brady made 4-dozen cupcakes with Millie and then they mixed different colors of frosting. He also bought a bunch of random candy for them to stick on top. </div>
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Last weekend we hit up the drive-in and saw Ice Age. Austin and Millie both loved the drive-in. I was a little nervous about taking Millie as always, but we took all our own snacks and drinks. We all used the restroom before leaving the house to avoid that nightmare, yuck! Millie never touch anything but the truck since Brady carried her from her booster seat to the back where we had filled the cab with pillows and blankets. It was awesome. Thanks to Uncle Bry for letting us borrow his truck. Austin was pretty upset we had to give the truck back, he thought that we would keep going every night. </div>
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We also went hiking. It was short and sweet. Brady had to carry Millie up the steep parts, but she was fantastic. Austin ran most the way and jumped off everything while proclaiming he was going to be in the Olympics. My kids are awesome.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWjsjiATMngQlDuGA_v-4A8UEkyNVRbYuLfoMsWBXDIIuEfR3Sacg3ERFTBMD2ajPSggy3iQ00h0haJ9sbOkNiyY0shcYHYC3TAwAqKKWIJNxfFY5APCQ08Ues9KS3eG2J048tA5kYSqFw/s1600/2012-08-12_12-09-26_570.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWjsjiATMngQlDuGA_v-4A8UEkyNVRbYuLfoMsWBXDIIuEfR3Sacg3ERFTBMD2ajPSggy3iQ00h0haJ9sbOkNiyY0shcYHYC3TAwAqKKWIJNxfFY5APCQ08Ues9KS3eG2J048tA5kYSqFw/s400/2012-08-12_12-09-26_570.jpg" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCqMIupdzuuxWsdYkYHye6SqoX91qEsKWS7ea4PqLqP23LJ2lvMxgndE6n1oCyfuc4jC5NHfCxjXn2-XmWyVAeJ_iAbnN8-tgM1KBXXm0Ryvdaoaw3GMWzMXOmzEoxXpakAZKtXlKKluXZ/s1600/2012-08-12_12-07-31_672.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCqMIupdzuuxWsdYkYHye6SqoX91qEsKWS7ea4PqLqP23LJ2lvMxgndE6n1oCyfuc4jC5NHfCxjXn2-XmWyVAeJ_iAbnN8-tgM1KBXXm0Ryvdaoaw3GMWzMXOmzEoxXpakAZKtXlKKluXZ/s400/2012-08-12_12-07-31_672.jpg" width="266" /></a></div>
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Millie has also gotten to play at her Nana's house for the first time, which she was thrilled about and play at the neighbors in their backyard. She is always making some sort of craft to keep her busy and Brady's thinks I should start a blog reviewing crafts for kids since Millie has done so many. She also started piano back up and is doing great. We decided to have her review the last book she did instead of moving on and she is flying through it. The girl is a natural, and it doesn't hurt that she has the best teacher. What I think is the best news is she has started eating a lot more. Hopefully there will be no more weight loss. Wahoo!<br />
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<b>It's been a good week.</b>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com9tag:blogger.com,1999:blog-8193628659844001647.post-61332356104386111592012-08-12T21:12:00.001-07:002012-08-18T22:25:05.887-07:00Day 45 (sort of)I started writing this post around day 45 so that's what I titled it because I didn't update it with the last week and a half events. I will try to do that in the next day or so, no promises. :) Day 45 was August 1.<br />
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Things are pretty good. Millie's stomach pains are not as frequent as it use to be. It's hard to notice the differences day to day, but if I think back to last week I notice a huge improvement in how she is feeling. Millie had clinic on Wednesday (Aug. 1) and the doctors are happy with her progress, we will go back in tomorrow for another check-up. She did lose a little weight so I have to make sure she is eating more this week or she will have to go back on TPN. It's a battle every meal and she complains about stomach pain the second anything hits her lips. I am starting to wonder if it's more nerves. Eating use to always make her sick, so now my thought is she has that in her head and she's scared. I would be if I were her. I can do most kinds of sick, but stomach pain is the worst and she has been feeling this way for about 2 months. Can you imagine having chronic stomach pain and what goes along with that for 2 months straight?!? No Thank You! She did make it a whole entire day with out complaining about her tummy on Saturday. It was amazing! I felt like she made a huge jump. She did get a little sick here and there on Sunday, but she is showing improvement and that's all we can hope for.<br />
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I have eased up a little and have let her play with the neighbors a couple of times this week. It makes me nervous, but she has been so down. I know she needs to have some sort of normalcy in her life. When we are in the hospital she knows she can't play, but at home she looks out the window and all the kids are out in their swimsuits playing in the water and riding their bikes. I try to distract her from our kitchen window because I don't want her to see them out there and ask me, "Mom can I play?" It makes my heart ache. Today is the last day she takes one of her many medications, Micolphenelate, and I can't wait for her to come off of it (this happened on her day 45). It is one of the anti suppressants so I feel like I can trust her own immune system a little more after it's gone and she has some time to recover from it. She will still be on her main anti suppressant, Cyclosporine, for awhile, but ever pill we come off the better. <br />
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We can also see shadows of hair starting to grow and it's dark! Her eyebrows are going to be huge and it is looking like she will take on one of the main side effects from her medication, being extra hairy. We will have to wait and see but I have seen some really hairy kids after transplant and it's everywhere. I talked to her a little about it today, because I want her to be prepared for the day she wakes up with a uni-brow and hair on her cheeks. She took it pretty well I thought. It's seems like such a small thing in comparison to the other possible side effects, but it's the small things that put her over the edge right now and I didn't want it to be a shock. The hair will fade in time if it comes, so it's really not a big deal, but in her 6 year old mind I don't know how it will affect her. Her hair also seems very dark but I don't know if that's the meds or not. Last time when her hair came back it was white it was so blonde and got darker as it grew. This time it's very dark brown. It will be interesting to see if it stays that way. We were told that she may take on the hair color of her donor so it's possible that we will have a very different Millie. She said if it came in a different color then before that she wanted it to be red, not orange, or light red, but dark red like her friend's mom. She has it all planned out. She has also mentioned that she can't wait to dye her hair green with blue stripes....<br />
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We have been able to do a little bit more and it's been so nice. We went for a drive up Big Cottonwood Canyon and Little as well. We don't push it and stay long, but it's relieves a little tension for all of us to get out of the house for a bit. Brady also took Millie to go see Brave finally. She loved it. Seeing a movie is probably not on the top of the list on things we should be doing, but we played it very safe. Amelia wore a mask the whole time unless she was eating popcorn, which we popped at home for her so we knew it was safe. Brady also bleached the seat and armrest the best he could and then covered it with a fitted sheet. He went Sunday afternoon to make sure there were a minimal amount of people there and it worked. I think he said there were 4 others in the whole theater. They also sat on the side, in the back away from the main areas. He said it was so worth it and that she laughed hysterically the entire time. I'm sad I missed it. I love taking her to the movies just so I can hear that laugh. <br />
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All in all, I feel like this is all becoming a little easier and every day that is done is a relieve. Today brought a milestone with only having to give meds at 10 am and 10 pm. Goodbye midnight dose! I won't miss you and I hope you never come back! Now if we could get her off her IV fluids at night.
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Big Cottonwood Canyon</div>
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Playing on her new swing set</div>
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com4tag:blogger.com,1999:blog-8193628659844001647.post-27861491195763348672012-07-29T14:10:00.000-07:002012-07-29T14:10:12.304-07:00beautiful<div class="separator" style="clear: both; text-align: center;">
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com4tag:blogger.com,1999:blog-8193628659844001647.post-66889079089867968362012-07-27T21:35:00.000-07:002012-07-28T10:16:01.175-07:00Day 30 somethingHome. Home brings such a mix of emotions. Of course we are beyond happy and grateful to be here, but unless you have been in the shoes of a family that has a child with cancer there is no way to understand how difficult it can be as well. I hook up IVs, inject medications, schedule out pills, clean up barf, hold 2 crying babies; one because she is incredibly sick to her stomach, and one because he is sick and tired of being left home with sitters. I try to keep my house clean - up to Bone Marrow Transplant standards and that is an impossible task with a 2 year old and dog running around. I spend entire days at the Bone Marrow Clinic when Millie needs transfusions or check-ups, today we were there for 7 hours. There is never enough time for anything, BUT the house is full of crafts, games, spills, giggles, and crumbs. My family is here and the house is being lived in. In a way the mess is a beautiful site. The last week has been incredibly hard because I was the sickest I have been in, I don't know how long. I had to give Brady instructions on how to do all Millie's IV stuff over the phone since I couldn't be near anyone. It was frustrating and scary. Saturday night was the worst of it and I cried myself to sleep. I was so worried that I could have gotten Millie sick. I don't even know how I got sick, I hadn't been anywhere since we'd been home but the vet. Did I catch the flu at the vet? When you live this life you have to analyze everything. Do I let her go outside without a mask, can she at least see the neighbors puppy for a second, what do we do with our dog, should I make Austin wash his hands again, is it alright if she sits on the grass, did that dish get washed and soaked in bleach before I put her food on it, do I need to steam her toys again... The list goes on. It is stressful to say the least and on top of everything else my house looks like a pharmacy blew up in it. We have bottles and bottles of medications, IV bags, syringes, saline, heparin, needles, prep kits for her broviac, bandages, and more.<br />
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Austin is having such a difficult time that the last day I was stuck in my room he sat in my doorway literally all day and watch shows on my tv. He couldn't really even see me since I was in bed and we wouldn't let him in, but he knew I was there and he didn't want to leave my side. He even snuck in at one point and kissed me. He is such a sweet boy and I feel sorry for him. He is so little and doesn't understand. Hopefully we have done enough his last 3 years of life to let him know how important and special he is to us.<br />
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Millie has been doing great! What does great mean? Well most the time she is feeling pretty good and able to play for a little while before her body gets too tired. She is eating a little and her docs are starting to taper her off her TPN. We are hoping she will be taken completely off by today, but we have to get her eating a little more first. She has a ridiculous amount of pills she has to take and we have figured out a routine that helps her not to get too sick and throw them up. Today has been one of the worst days for her stomach pain. I had to hold her up on the toilet while she was screaming in pain. It's an awful feeling to know there is nothing you can do for your child. The first couple of days her legs were killing her. Her little muscles have been unused for so long I think they were freaking out with how much playing she was doing. Her body seems to be adjusting though. It's normal for her to feel some pain as she is growing new bone marrow. Of course she will ache, but for a bone marrow transplant patient she is once again showing everyone who is boss, and that's Millie. She had clinic last Friday and she need some platelets, but everything else looked good. They thought she'd need blood by Monday so they brought her in again, but she was great. No blood, and no platelets. That's fabulous news, it means her body is starting to make all of these things on their own. We had another appointment today and since she had gone a week without transfusions I wasn't surprised she needed both. It was long and exhausting<span style="background-color: white;"> day.</span><br />
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If I could choose being home or the hospital of course I would choose home 1,000 times over, I am just surprised at how much of an adjustment it has been. I should be use to this as it always takes time to get back on a schedule, but this time has been completely overwhelming. But I can do overwhelming when my family is all under one roof. I can love and snuggle both my kiddos at the same time. I see my husband for more then a few passing moments in the hallway. I have missed him. Being together is something I will never take for granted. I love my family.<br />
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Thankfully we have had so much support. When I was sick my mom cleaned and disinfected everything. Poor Brady had to have been more then overwhelmed with everything and then I was on quarantine to top it off so he had to face everything all on his own for a few days. His family has also been amazing. Thank you Kyle, Adam, Andy, and Jeff for helping put Millie's playset together. It was a ton of work and he couldn't have finished it without you and it's finally done! The kids have been enjoying it all night. Nancy also babysat so we could go on a much needed date. Being trapped in the house is taking it's toll on me and I enjoy every free moment I have.<br />
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Since I don't have any pictures I thought I would post a video of Millie singing at the hospital. This was one of our final days there. It's not a big show like usual. You can tell her energy is down, but I still love it. Enjoy. <br />
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<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com10tag:blogger.com,1999:blog-8193628659844001647.post-22856316658390189342012-07-19T12:43:00.000-07:002012-07-19T14:40:07.424-07:00Day 26: HOME - July 18, 2012<div class="separator" style="clear: both; text-align: center;">
ANC 900 and FREE.</div>
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Dr. Barnette has shown so much love for Millie and I am grateful to him. I am happy she was able to tell him goodbye. I know we will see him in passing, but he is no longer Millie's main man since we moved from the Oncology Team to Bone Marrow. We have missed him.<br />
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As a going away gift Irish let Millie squirt him with saline. Oh how she giggled. Thank you Irish. </div>
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Millie waited for no one to ring the bell. We were all standing there waiting to hear what to do and she jumped up and got to it.</div>
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<b>Ring This Bell</b></div>
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<b>Three Times Real Well</b></div>
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<b>Its Toll To Clearly Say</b></div>
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<b>My Treatments Done</b></div>
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<b>This Course Is Run</b></div>
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<b>Now I Am On My Way</b></div>
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When she was done she asked Brady and I if we would like to ring it with her. </div>
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Goodbye to all her friends. These people loved and took care of my baby. I owe them everything. Every nurse, every tech, every doctor, every housekeeper, our dietitian, every pharmacist, every therapy dog and owner, every social worker, our music therapist, and countless others all took a part in getting Millie through the last 6 months. These people became my friends and my family away from home. I will miss them. Yes, we will be at the hospital a lot, but hopefully not in ICS, only clinic visits for check-ups and transfusion. I know that's a lot to hope for, but hope and prayers have gotten us this far and I know that they will continue to hold us together to Millie's next big milestone, Day 100.<br />
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Bye Beezer and Cheri. You will be joining us soon and we will miss you. </div>
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Bye Amy and Timmie.<br />
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Millie ran the rest of the way out.<br />
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Welcome HOME Millie! </div>
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Gold Balloons for Childhood Cancer, Orange for Leukaemia, and Turquoise because it's her favorite. </div>
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Millie wanted to surprise Austin. He had no idea she was coming. When she walked in the room and said, "Hi Austin" he buried his head in the couch first and once he got a grip he buried his head in her lap. He loves her so much and has missed her like crazy. I get teary eyed every time they play together. It's amazing how much Austin has even learned about love in his short life. He does not take his sister for granted. He knows he's lucky to have her and she him.<br />
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It wasn't long before Millie's presence had once again filled our empty home.</div>
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You are my Miracle Millie. </div>
<br />Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com37tag:blogger.com,1999:blog-8193628659844001647.post-4561540751654780322012-07-17T22:51:00.002-07:002012-07-17T22:51:39.359-07:00Day 25 (I think)Everything is fine, we have just been tired. Millie's ANC is 600 and has been for the last couple days. We are hoping it jumps up again tomorrow so we can stop giving her neupogen. Millie is eating better today and has way more energy then I've seen for awhile. I even got a song and dance today, I will post the video later.<br />
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I also have to mention that Rachel Steele is the coolest! Thank you for the amazing comic book you illustrated and wrote for Millie. The finger puppets were so awesome! I know the kids are going to have a blast with them! I will post pictures of that too. Just give me a day or two. Marie, there are no words. Thank you just doesn't cut it.<br />
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Thank you so much to everyone! I had gotten a few concerning comments since I wasn't posting and I just want you all to know Millie is fantastic. Tune in tomorrow to see how fantastic.....Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com1tag:blogger.com,1999:blog-8193628659844001647.post-1999176331776435452012-07-14T22:03:00.000-07:002012-07-14T22:03:14.950-07:00Day 22 - ENGRAFTMENT<span style="font-family: inherit;">This morning Amelia's nurse walked in, handed me a print out of Millie's blood work, and said, "she officially as an ANC of 500". How amazing is that?!?! Amelia wasn't awake yet and I tried to wait, but I couldn't. I went and snuggled up to her and whispered in her ear that her ANC was 500. She had the sweetest smile.</span><br />
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<span style="font-family: inherit;">Day 22 was the day that both Cousin Sherry and I picked for her engraftment. WE WIN! I just knew I was going to win. ;) When her doctor came in for rounds they said that they were going to take Millie off her <span style="background-color: white; color: #222222; line-height: 25px;">Meropenem, and switch her IV </span><span style="background-color: white; color: #222222; line-height: 25px;">Amphoteriein to an oral anti fungal called, F</span><span style="background-color: white; line-height: 25px;"><span style="color: #222222;">luconazole. Tomorrow she will come off her </span></span><span style="background-color: white; color: #222222; line-height: 25px;">Flagil pill (c-diff antibiotics 3x day). They will retest her for c-diff on Monday and decide then if they can keep her off or if she still needs the Flagil. </span></span><span style="background-color: white; color: #222222; font-family: inherit; line-height: 25px;">If we can get her to eat more Millie will also start tapering off her TPN and lipids. HOORAY!</span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #222222; line-height: 25px;">Yesterday was emotionally difficult on Millie and this was just the wonderful news she needed. As always, thank you for your prayers. I can honestly say that they are making a difference and being heard. Please keep them coming. The next few months are critical for Millie. If we make it to her day 100 without any hic-ups then we can breath a little more easily once again. </span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #222222; line-height: 25px;">Brady calculated it out and her day 100 is September 30. It's going to be a big weekend for our family; Millie will turn seven on Sept 28, Sept 29 is the CureSearch Walk, and Sept 30 is day 100! We will be celebrating like crazy and I hope you can join us at Sugar House Park for the annual CureSearch walk where we will party. </span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #222222; line-height: 25px;">I pray every second of every day that this is Millie's last run with cancer, but the cruel truth is that she could relapse again and this disease NEEDS a cure. I will continue to support CureSearch until the day we can say <b>We Have A Cure</b>. Last year we did a hard push for everyone to come walk with us, but with Millie's Princess run we have decided not to try and fundraise as hard since you have all done so much for us already. I do hope you all have the same passion that I have and will join us anyway. Please sign up for Team Amelia <b style="font-size: x-large;"><a href="http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1012842&lis=1&kntae1012842=E1708816CE414AC381FD0B41026E0C9A&team=4982367" target="_blank">here</a> </b>and come celebrate her birthday and day 100 with us. Kids are free and adults are only $10. We love CureSearch because 100% of all the proceeds raised at this walk will go to help find a cure for our Cancer Fighting Cuties, 100%! That is unheard of. </span></span><br />
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<span style="background-color: white; color: #222222;"><span style="font-family: inherit;"><span style="line-height: 25px;">Please take a minute and watch this video that our fellow cancer friends made. Millie makes a few </span></span><span style="line-height: 25px;">appearances</span><span style="font-family: inherit;"><span style="line-height: 25px;">, as well as her Cancer Fighting Cutie Friends. It's a beautiful </span></span><span style="line-height: 25px;">tribute</span><span style="font-family: inherit;"><span style="line-height: 25px;"> to these kids. Watch till the very very end, even after the written words so you can hear Millie's cute giggle. I love that giggle. </span></span></span><br />
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<iframe allowfullscreen="" frameborder="0" height="281" mozallowfullscreen="" src="http://player.vimeo.com/video/44556682" webkitallowfullscreen="" width="500"></iframe> <br />
<a href="http://vimeo.com/44556682">CureSearch Walk Salt Lake City</a> from <a href="http://vimeo.com/user2258086">DHT</a> on <a href="http://vimeo.com/">Vimeo</a>.<br />
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I had to take Millie's picture the second she was awake enough to sit up. My baby engrafted! I will never forget July 14, 2012.<br />
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To celebrate we did glitter tattoos.<br />
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Cute Cami, Millie's cancer buddy came to visit and the glitter came out again. I wish we'd taken a picture of them when they were done. They were both covered with tattoos.<br />
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After Cami left, Millie spent an hour or two in her secret hideout. We pull the couch out a little to give her some private space. She sits on blankets and pillows and loves it there. When she came out, she had a gift bag for Brady. She had made him an amazing family portrait, a bracelet, and dozens of hand cut snowflakes. It's amazing that she's always looking for the opportunity to do something for someone else.</div>
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<span style="text-align: -webkit-auto;"> This morning before coming to the hospital, Brady and Austin went for a hike up to Dog Lake. It's only about 2 miles round trip, but it has a pretty good elevation gain. With a little rain, it wasn't too hot, and the wildflowers are in full bloom.</span>
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Austin loves to go for hikes, but getting him to pose for pictures is tricky. At this age, Millie would constantly pose in front of things and request to have her picture taken. Austin has to be bribed. </div>
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He did good and hiked all the way up, and most of the way down. With a few hundred yards to go he insisted on being carried. Within a minute he was asleep on Brady's shoulder. He woke up in the car just long enough to demand the sucker he had been promised and then went to sleep before tasting it.</div>
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Austin and Millie also got to see each other for the first time in over a week since Austin had been sick and he just kissed her and kissed her. It was really sweet and the icing of top of the cake. </div>
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Sigh of relief.</div>Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com12tag:blogger.com,1999:blog-8193628659844001647.post-47441154956181086972012-07-13T22:59:00.000-07:002012-07-13T23:21:49.066-07:00Day 20 and 21Ya, we skipped a day. Austin hasn't been feeling well and so I have been staying home with him and the CRAZY dog. Neither of us felt like blogging. <br />
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Yesterday I had a bit of a break down and it was nice to be able to cry and just let it out since I was home in my own space. I feel so good about things most of the time, but the reality is my daughter is sick and fighting for her life. What is getting to me now is that she still has such a long road a head of her. She keeps asking if we can have a swim party and I hate telling her that it will be a LONG time before we are having a swim party. I don't even know when she will be able to get her broviac out, let alone be near enough people to have a swim party, or be in a germy pool. <br />
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Yesterday Brady's mom spent the morning with Millie since I was home with Austin. I didn't want to risk bring something to her. Brady was able to come be with her after his lunch meeting and she did well. Her ANC was still 100, but today it's back up to 200! Hopefully it won't dip again and we can start moving on with this. <br />
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Millie needs platelets today and blood, I know I have said it before, but I am very grateful for those that donate. Her Uncle Adam sent her a picture of him donating the other day and it made Millie smile. She knows that she wouldn't get the blood and care she needs if not for those willing to donate.<br />
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Millie also got a surprise visit from her swim teacher Raelene and her daughter, Kelcee. I am so glad that they showed up. Millie has been a little off all day and that gave her something to focus on. Tonight before she fell asleep she had tears in her eyes and asked me if I've ever felt different. She said, "I know we are all different, but I mean REALLY different". My sweet sweet baby. She talked a lot about how she feels forgotten. Adults come visit all the time, but it's hard to be a kid without other kids to goof around with. She also told me how sad it made her when her friend from school emailed and said they weren't playing army anymore. She felt that if they could move on from a game that they all loved, then why wouldn't they move on from her too. "It's not like I'm around" she said. She then told me how sad it made her that her friends from school don't visit. She only hears from one of them on a regular basis. I know people are busy and have their own life's going on, but it's difficult for me to have no control over who calls, who sends emails, who visits, and who doesn't. It's not up to me and I can't make it better. <br />
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The princess walk was so good for me so actually get to see everyone and not just hear about everyone out there, but she doesn't get to experience any of that. For her she can't leave this room, she has no idea how many of you love her. If someone says, ya we'll come visit and they don't she notices. This is her reality. Living in a hospital room. She can't even open the door to peek out and say HI to those walking by. It reminds me of how she compared her room here to Rapunzel's Tower. She's trapped and it's starting to really take it's toll. She just needs to sit and play barbies with someone who actually wants to be playing barbies. It's such a simple thing for a "normal" child, but for her it changes her whole perspective. Playing barbies means she is a kid, not a cancer kid.<br />
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One day Amelia will be able to look back on this experience and realize how truly amazing her support system has been. She has been blessed. We all have.Amandahttp://www.blogger.com/profile/03721498108360561910noreply@blogger.com4tag:blogger.com,1999:blog-8193628659844001647.post-87923268642586702592012-07-11T23:47:00.000-07:002012-07-12T07:17:35.063-07:00Day 19Today was a great day, even though we started the day off with slightly bad news. Millie's ANC had been 200 for the past two days, and we were hoping it would go up, but unfortunately it went down to 100. It's just a temporary setback...<br />
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I spent the most of the day with Millie today, as my work is nice enough to let me work from the hospital on Wednesdays. Hopefully there aren't many more left. <br />
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I had a lot of work to do today, so I'm grateful that my mom sat with her while I went to a business lunch, and my sister-in-law Elizabeth for coming by with her sweet baby to keep Millie company while I was working.<br />
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Hanging out with Nana.</div>
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Showing off the car she made with an old tissue box and other random hospital items. She keeps herself busy.</div>
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My mom brought some more pipe cleaners, and Millie had a lot of fun with them. Pretty fancy jewelry!</div>
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Millie was so excited to spend time with her cousin Eliza. It really made her day. She spends so much time up here with adults, being the "big person" and playing with a baby had a great effect on her. She made Eliza a fancy headpiece. </div>
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Apparently Elizabeth needed one too.</div>
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Austin was feeling a little better today, so Amanda took him to the zoo. He loves the zoo. Although his favorite is the lions. The first thing he wants to do when he gets there is go see the lions. The only problem is that the zoo here doesn't have lions. He doesn't seem to believe us and gets a little frustrated that we're holding out on him. He's a character, as my grandpa would have said.</div>
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He got to see the polar bear swimming in the new exhibit, and got to see the grizzlies. Amanda said they had a great time.</div>
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He was so worn out after the zoo that he fell asleep on the floor with Jack. </div>Bradyhttp://www.blogger.com/profile/02299215197321453603noreply@blogger.com3