tag:blogger.com,1999:blog-42835769293520818292024-03-13T14:36:39.394-05:00DIPG- Hope for AvaAva was 4 years old when she was diagnosed with an inoperable brain tumor, DIPG. She lived for 11 months after her diagnosis. Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-4283576929352081829.post-58493082246893487882014-11-17T13:13:00.000-06:002014-11-17T13:19:47.262-06:00The Day Our World Changed<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: small;"><span style="color: #999999;">It was two years ago that Ava took her last breath. It seemed to happen so fast. We found out her tumor had grown and two days later she was gone. There were signs that she wasn’t getting better. I don’t think we wanted to see them. She wasn’t eating or drinking. There was talk of a feeding tube. She couldn’t void her bladder. Her little body was shutting down. I was so angry at her body for failing her. It wasn’t supposed to grow a tumor that would kill her. It was supposed to be healthy. </span></span><br />
<span style="font-size: small;"><span style="color: #999999;"><br />I haven’t let myself feel all the emotions that come with Ava being gone. I’m trying to remember that’s okay. That my mind will allow me to feel what I can handle. I guess right now I can’t really handle much. It just hurts so much to know she isn’t here. I can say the words but I don’t really believe them. I still feel like I’m in a dream. It didn’t happen. I will wake up and she will hug and kiss me and everything will be okay. <br /><br />She finally got the baby brother she wanted, only he won’t know just how awesome she was. He will have to hear from us about her instead of getting to know her himself. This is not how it should be but this is our life now. Forever thinking of how it would have been. What funny things would she be saying? Who would be her favorite characters? Would she be looking less like a little girl and more grown up? Would she still love puzzles? The questions are never ending and I don’t have any answers to them. <br /><br />I do know that she loved us and she knew how much we loved her. I can take comfort in that. </span></span>Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com2tag:blogger.com,1999:blog-4283576929352081829.post-20740744315846080712013-08-26T08:31:00.000-05:002013-08-26T08:31:07.435-05:00While your child is starting school...<span style="color: #999999;"><span style="font-size: large;">While your child starts school today, we are thinking of a sweet girl who would have been starting 1st grade. </span></span><span style="color: #999999;"><span style="font-size: large;">Ava loved school! </span><span style="font-size: large;">She would come home each day wilth her assignments and crafts and tell me all the fun things she got to do each day. One of her favorite things about school was picking out her outfits for the week. She really was such a fashionista! She had to wear a dress every.singe.day. and a pretty bow. </span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #999999;">Ava and her friend Chloe. </span></td></tr>
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<span style="color: #999999;"><span style="font-size: large;">She had a special friendship with two of her classmates, a little girl and little boy. It was so sweet how she would talk about her friends so much and i can imagine all the classroom fun they had! </span></span><br />
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<span style="color: #999999;"><span style="font-size: large;">The first day of school is a very exciting and sometimes nerve wracking time. We would love for Ava to be experiencing her first day. Of course this is sombering for us. We miss Ava so much and know that there will be many "should of" milestones that we must face without her. Take the time today to think about how lucky you are that your child is growing and you get to experience firsts with them. You know we would give anything to do that. </span></span>Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-8328732100817427012013-05-04T12:42:00.002-05:002013-05-04T12:43:56.922-05:00Never grow up<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">"It kills you to see them grow up, but I guess it would kill you quicker if they didn't."- Barbara Kingsolver. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">That statement sums up so much for me. I would give anything (I mean <i>ANYTHING)</i> to watch Ava grow up. Her childhood was stolen from me. There is no first day of kindergarten or learning how to ride a bike. She won't get to drive a car or go on a date. There is no walking her down the aisle or watching her become a mother. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">I used to be that parent that got<span style="font-size: large;"> a little heartbroken</span> as their child grew. As we continue on with<span style="font-size: large;">out Ava I see<span style="font-size: large;"> now just how lucky parents are that get to experience <span style="font-size: large;">each milestone with <span style="font-size: large;">their</span> child. Do you really wish your child would stop growing? Think about that for a minute... </span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Ava stopped growing and she will always be five years old. No longer here on <span style="font-size: large;">earth with us but in heaven.</span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Cherish<span style="font-size: large;"> each new phase with your child and don't be sad to watch them grow. Think about just how <span style="font-size: large;"><span style="font-size: large;">fortunate</span> </span>you are to have the<span style="font-size: large;">m with you. </span></span></span></span></span></span></span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com2tag:blogger.com,1999:blog-4283576929352081829.post-61860765892664690452013-03-20T08:00:00.000-05:002013-03-20T09:48:37.720-05:00Birthdays in Heaven<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Ava loved birthdays. Her social calendar seemed to be f<span style="font-size: large;">ille<span style="font-size: large;">d with lots<span style="font-size: large;"> of parties and she learned fast tha<span style="font-size: large;">t birthday<span style="font-size: large;">s m<span style="font-size: large;">eant <span style="font-size: large;">presents</span> and ca<span style="font-size: large;">ke. She loved being the <span style="font-size: large;">"special helper" and give her friends all their presents to <span style="font-size: large;">open. <span style="font-size: large;">She was always so interested in what they got and how neat their new toys were. I think her favorite part of the party was watching them open her gift. Her face would li<span style="font-size: large;">ght up as they opened it and she would tell them all about their <span style="font-size: large;">prese<span style="font-size: large;">nt</span></span>. </span>When her friends would have a birthday she <span style="font-size: large;">was always very specific in w<span style="font-size: large;">hat to give them<span style="font-size: large;"> and she could not be talked out of what she had set her mind on for their gift. I enjoyed watching her pick gifts for others! It was fun to see what she would choose. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Now if she loved other people's birthdays so much imagnie how she f<span style="font-size: large;">elt <span style="font-size: large;">about</span> her own! I think her favorite birthday was last year when she turned 5. We had been in Arizona for a few months and it just so happened that her break from treatment would fall on her birthday. We ca<span style="font-size: large;">me back<span style="font-size: large;"> home to Texas</span> and threw her a huge, and I mean HUGE party!! It was the first time we <span style="font-size: large;">could invite everyone she knew</span></span> and she was the s<span style="font-size: large;">tar that day<span style="font-size: large;">.<span style="font-size: large;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;">M</span>y favorite birthday was much more low key. Ava was turning 3 and I was pregnant with her sister (they had the same due date!). We started to think about what to do for her birthday. My due date was a week before her actual birthday and we didn't want to deal with the stress of a party during an unpredictable time. It turned out Myla was born exactly one week before Ava's birthday so just the four of us celebrated with her. We took her to a restaurant (her pick) and let her order anything on the desert menu. She got a "loaded" cookie. It must have been the size of her head and covered in ice cream and chocolate sauce. The look on her face was priceless!! She was so happy to get such a yummy treat all to herself. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">I look back on<span style="font-size: large;"> these memories with happiness but I am so sad that we don't get to celebrate anymore birthd<span style="font-size: large;">ays with Ava<span style="font-size: large;">. Today she would of been six years old. W<span style="font-size: large;">e are planning <span style="font-size: large;">to</span> have crab<span style="font-size: large;"> (one of her favorites) and cake, something we would <span style="font-size: large;">do</span> i<span style="font-size: large;">f she was here. Also, at sunset we will be releasing paper lanterns just like they do in Tangled. We think she would of liked that<span style="font-size: large;"> and I hope she can see them in heaven.<span style="font-size: large;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Not being able to celebrate Ava's birthday with her is very difficult. It has <span style="font-size: large;">completely</span> changed my view on birthdays. I used to get a little sad that my *bab<span style="font-size: large;">ies* were growing older with each birthday but now <span style="font-size: large;">it really is a c<span style="font-size: large;">elebration<span style="font-size: large;"><span style="font-size: large;">. I know how<span style="font-size: large;"> <span style="font-size: large;">fleeting</span> life can be<span style="font-size: large;">. I <span style="font-size: large;">never would of thought Ava would only get to have 5 birthdays here on earth. I can only imagine the <span style="font-size: large;">party she is having in heaven today. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com6tag:blogger.com,1999:blog-4283576929352081829.post-49377429879602917302013-02-01T07:30:00.000-06:002013-02-01T07:30:03.746-06:00Left Behind<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Myla doesn't understand. She knows her sister is go<span style="font-size: large;">ne<span style="font-size: large;">. Taken without any warning to her. </span></span>She tells us everyday how much she misses her "sissy" and asks if we miss her too. It<span style="font-size: large;"> isn't fair that Myla doesn't get to have her big sister anymore or that she may not even remember her. The photos and videos we have <span style="font-size: large;">of the two of them </span></span>may be all she has as she gets older. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">I have put off finishing our 2012 photo album. At first because I didn't have the photos printed<span style="font-size: large;">. Then I needed to find the perfect album. Then I didn't want to sort all<span style="font-size: large;"> the photos. I knew I didn't want to do it because there will never be another year of pictures I get to see <span style="font-size: large;">Ava's</span> <span style="font-size: large;"><span style="font-size: large;">beautiful</span> smile or t<span style="font-size: large;">hose big blue eyes</span>. <span style="font-size: large;">B</span></span>ut I had to do it for Myla. She kept sitting at the computer<span style="font-size: large;"> watching <span style="font-size: large;">the screen saver of Ava's pictures.<span style="font-size: large;"><span style="font-size: large;"> Her only way of seeing her<span style="font-size: large;"><span style="font-size: large;">. I<span style="font-size: large;"> spent last Saturday putting each photo of Ava from the last year into the album.<span style="font-size: large;"> It was hard but <span style="font-size: large;">therapeutic</span> at the same time. I'm glad Myla now has a book f<span style="font-size: large;">ull of memories. </span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com5tag:blogger.com,1999:blog-4283576929352081829.post-82441733858966777702013-01-17T18:02:00.003-06:002013-01-17T18:02:59.646-06:002 months...<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">So hard to believe it has been two months since I last held Ava. Her death is much more real to me now than it was right after she passed. Someone told me that our hearts only let us take in what we can handle and each day I've been able to take in more. I'm still distracting myself as best I can but she is never far from my mind and my heart. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Everything is still so hard.<span style="font-size: large;"> <span style="font-size: large;">I break down when I see her pictures or when <span style="font-size: large;">Myla says how much s<span style="font-size: large;">he misses her (which she tells me a<span style="font-size: large;">t least <span style="font-size: large;">fi<span style="font-size: large;">ve times a day). Our home is now quiet<span style="font-size: large;"> when <span style="font-size: large;">it was filled with Ava's laughter. I think that is the <span style="font-size: large;">worst. Her giggle was so sweet and loud<span style="font-size: large;">! I miss it and her so very much. </span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">We have noticed s<span style="font-size: large;">igns she is sending us that she is still with us. It brings comfort right now that we <span style="font-size: large;">desperately</span> need. I had the most wonderful dream about her on Christmas<span style="font-size: large;">. She was in heaven with long f<span style="font-size: large;">lowing h<span style="font-size: large;">air surrounded by light. She told me she was okay and that she loved me. Then she told me I was the best mommy in th<span style="font-size: large;">e whole wide world! It was so sweet to hear that from her again. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">And because I know you miss her smile<span style="font-size: large;"> too<span style="font-size: large;">, here is a picture of her with her daddy. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com6tag:blogger.com,1999:blog-4283576929352081829.post-73238069541349213612012-12-31T08:00:00.000-06:002012-12-31T08:00:05.086-06:00Wishes Can Come True<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Ava loved Disney World so much! Such a fun, magical place where she could be a princess, go on rides and meet her favorite characters. Since her make a wish trip in March she kept saying how she wanted to go back. Thanks to Wish Upon a Hero and her hospice team, we were able to take her. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Ava wasn't feel well during this trip. It was the beginning of her little body starting to shut down. We didn't know that and looking back it makes sense how tired she was and how she hardly ate. She didn't want to go on rides like last time but she did love meeting all the princesses. We got to have lunch at Cinderella's castle and I think that was the highlight of her trip. They announced each princess and Ava's face was so full of excitement! </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">We also got a chance to meet the singer L<span style="font-size: large;">eAnn Rimes. She works with Wish Upon a<span style="font-size: large;"> Hero and helped us wish Ava's wish. They colored a <span style="font-size: large;">picture and <span style="font-size: large;">Ava sang <span style="font-size: large;">to <i>her</i>! It was great! </span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">We are very happy to have had the chance to take this trip with <span style="font-size: large;">Ava<span style="font-size: large;">. It was a wonderful way to spend <span style="font-size: large;">her last days with us. </span></span></span></span> </span> </span></span></span></span></span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-765528348378954992012-12-11T20:19:00.000-06:002012-12-11T20:23:50.058-06:00Remembering Ava<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">I have wanted to write since Ava's passing but I couldn't find the words. Many of you have asked how our family is doing. Our hearts hurt. They don't hurt every minute of the day but the pain lingers and rises when we don't expect it to. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;">Discovering</span> a present <span style="font-size: large;">Ava</span> <span style="font-size: large;">hid</span> under her bed, doing laundry and finding her last bit of dirty clothes and looking at her photos all have caused me to cry and face the loss we all feel without her. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Her funeral was beautiful. We found the prettiest pink coffin for her <span style="font-size: large;">and she was <span style="font-size: large;">buried</span> with all of her fa<span style="font-size: large;">vorite stuffed an<span style="font-size: large;">i<span style="font-size: large;">mals.<span style="font-size: large;"> She was dressed in all white and her head was adorned with her prettiest princess crown. </span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Her daddy <span style="font-size: large;">gave the euology. <span style="font-size: large;">He said, ..."</span>Ava lived her life for every moment and taught us to do the same. To enjoy the cuddles and quiet times just as much as the laughs and silly moments. Ava will be forever missed but never forgotten. Her shining light is now a part of everyone who knew her and we will always treasure that in our hearts." That is just what we will do. </span></span></span></span></span></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ7J7c6Ve4Yb8POaimp3TTeHYk1APyi4SH8eDFxsfctQcl7eIjKKtm1-dMWLDPEHlx5qxJLAf4clCRd52r99cz7g1BAAYBhnLCioemISZ2v5myTXFIh83yWaFhkyumUSGyMdhg5k0fJATX/s1600/Ava+11:12+funeral+collage1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ7J7c6Ve4Yb8POaimp3TTeHYk1APyi4SH8eDFxsfctQcl7eIjKKtm1-dMWLDPEHlx5qxJLAf4clCRd52r99cz7g1BAAYBhnLCioemISZ2v5myTXFIh83yWaFhkyumUSGyMdhg5k0fJATX/s1600/Ava+11:12+funeral+collage1.jpg" /></a><span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"> </span></span></span></span></span></span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX2u0nOofObb2iV03mQvXiBz8WoMeKbyKf6UCmupLbesU4mALk7vdYtQc4eEx-Hh4yAu9RJd3SIjfs6IOaEz3hXVuFZvHCoXImPMK1y3Kb6B5qIwNuit4zv9H0qUumKtkCFMOjR0RB04YW/s1600/Ava+11%253A12+funeral+collage3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX2u0nOofObb2iV03mQvXiBz8WoMeKbyKf6UCmupLbesU4mALk7vdYtQc4eEx-Hh4yAu9RJd3SIjfs6IOaEz3hXVuFZvHCoXImPMK1y3Kb6B5qIwNuit4zv9H0qUumKtkCFMOjR0RB04YW/s1600/Ava+11%253A12+funeral+collage3.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #999999;">Photos coursety of Morgan Kervin Photorgraphy</span></td></tr>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com4tag:blogger.com,1999:blog-4283576929352081829.post-58879282989932359772012-11-19T20:54:00.000-06:002012-11-19T20:54:15.491-06:00<div style="text-align: center;">
<span style="font-size: large;"><span style="color: #999999;">Ava has joined the angels in heaven. Rest in peace, sweet girl. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqYQW83FkAWfDXTGoBC4-mM6_pzY-R5tAPuW-BtJXeg-JoZFNjYj2mKSBteJcX9t9gEGxt2ah3PR4RNk5yA1_EWCLD01hrhL01Lg5uqPDqY7C1bCMiNp2IOu5ljvHHTauRu4xQfVK58mLx/s1600/Ava+11:12+sleeping+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqYQW83FkAWfDXTGoBC4-mM6_pzY-R5tAPuW-BtJXeg-JoZFNjYj2mKSBteJcX9t9gEGxt2ah3PR4RNk5yA1_EWCLD01hrhL01Lg5uqPDqY7C1bCMiNp2IOu5ljvHHTauRu4xQfVK58mLx/s1600/Ava+11:12+sleeping+blog.jpg" /></a></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-39008831240191168562012-11-04T07:00:00.000-06:002012-11-04T07:00:08.580-06:00A picture is worth a thousand memories<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">I<span style="font-size: large;"> love<span style="font-size: large;"> pictures. I love to take them and to edit them and share them. </span></span>There is something about a <span style="font-size: large;">gorgeous</span> photo that s<span style="font-size: large;">tops me in my tracks. <span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">A really beautiful photo has the ability to transport you <span style="font-size: large;">and your <span style="font-size: large;"><span style="font-size: large;">emotions</span>. I don't think I understand that more than<span style="font-size: large;"> I do now. </span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">I look back at photos of Ava and I want to cry and laugh at the same time. Cry because most of them were taken <span style="font-size: large;">at </span>a time of pure <span style="font-size: large;">innocence. No <span style="font-size: large;"><span style="font-size: large;">tumor</span> in her brain. N<span style="font-size: large;">o threat of her leaving us. Just a happy<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">, </span>healthy</span> child growing and playing<span style="font-size: large;">. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Photos now mean something else. They aren't to <span style="font-size: large;">capture</span> how she is growing or what she looked like when she<span style="font-size: large;"> was <span style="font-size: large;">five</span></span>. They are to capture her <span style="font-size: large;">in case</span> <span style="font-size: large;"><span style="font-size: large;">she has to leave us</span>. They are so we can remember every detail of her smile<span style="font-size: large;"> and </span>every light in her eye<span style="font-size: large;">s. Someday <span style="font-size: large;">photographs may be all we have left. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Every single photo that has been take<span style="font-size: large;">n of Ava over these last<span style="font-size: large;"> ten months has meant the world to <span style="font-size: large;">me. Our family has been lucky enough to have some wonderful photographers <span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">capture</span> Ava<span style="font-size: large;">'s spirit in ways we will <span style="font-size: large;">treasu<span style="font-size: large;">re forever. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Some families going through t<span style="font-size: large;">his same situation need help in connecting with photographers that can give them the greatest gift, memories of their fighters. That is why I'm sharing <a href="http://goldhope.weebly.com/index.html" target="_blank">The Gold Hope Project</a>. Their mission is bring <span style="font-size: large;">awareness</span> to childhood cancer through <span style="font-size: large;"><span style="font-size: large;">photography<span style="font-size: large;"> and along the way <span style="font-size: large;">families get those precious memories that will last a lifetime. If you kn<span style="font-size: large;">ow of a photographer or <span style="font-size: large;">fighter</span> that <span style="font-size: large;">would like to apply to be a part of the project, please share it <span style="font-size: large;"><span style="font-size: large;">with </span>them! </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Ava's glitter <span style="font-size: large;">photo shoot</span> was the first one from<span style="font-size: large;"> the project and we are hon<span style="font-size: large;">ored she is the ambassador for <span style="font-size: large;">TGHP</span>. Please s<span style="font-size: large;">pread the word about this wonderful charity that means so much to us! </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> <br />
<span style="color: #999999;">To see all of Ava's glitter photos, click <a href="http://hopeforava.blogspot.com/2012/09/living-with-dipg-glitter-makes-ava-happy.html" target="_blank">here. </a> </span></div>
Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-23203817723980556162012-11-02T07:00:00.000-05:002012-11-03T14:40:02.283-05:00Flashback Friday! <div style="text-align: center;">
<span style="font-size: large;"><span style="color: #999999;">We've been doing Flashback Friday on Ava's <a href="http://www.facebook.com/hopeforava" target="_blank">facebook page</a> and I wanted to bring this over to the blog too! </span></span></div>
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<span style="font-size: large;"><span style="color: #999999;">Ava was just over six months in this picture. I always smile when I look at her big ole grin in this one! Hope it makes you smile too!! </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com0tag:blogger.com,1999:blog-4283576929352081829.post-47019074660473917362012-10-31T21:30:00.005-05:002012-10-31T21:30:59.504-05:00Happy Halloween!<div style="text-align: center;">
<span style="color: #999999; font-size: large;">Scooby Doo and Daphne wanted to wish you a Happy Halloween!</span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-43292914228958439582012-10-21T11:00:00.000-05:002012-10-31T13:05:24.790-05:00Picture Share!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNq6kiMLa4e77BFVjCevUczG365dMgfitiBnXIjuE1jnR2shP23drFF7tGK5SW4lB5bStaxOG675vbbvnfTKHqsvPIyN_RD_xVC_P9LIZLs9i1dqD42U52qbXaMloGg-5-mftBqdntfHOl/s1600/Ava+10:12+pretty+pout+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNq6kiMLa4e77BFVjCevUczG365dMgfitiBnXIjuE1jnR2shP23drFF7tGK5SW4lB5bStaxOG675vbbvnfTKHqsvPIyN_RD_xVC_P9LIZLs9i1dqD42U52qbXaMloGg-5-mftBqdntfHOl/s1600/Ava+10:12+pretty+pout+blog.jpg" /></a></div>
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<span style="color: #999999;"><span style="font-size: large;">Ava's eyes just shine in this one. I had to share it with you!</span></span>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com2tag:blogger.com,1999:blog-4283576929352081829.post-20730963853990368052012-10-12T19:48:00.002-05:002012-10-12T19:48:19.152-05:00Picture Share!<div style="text-align: center;">
<span style="font-size: large;"><span style="color: #999999;">Ava was invited to her school last month for a very special lunch. She and the children from her class last year were reunited. Ava loved visiting with her school friends and them telling her all about kindergarten. The smile never left her face the whole time we were there! </span></span></div>
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<span style="color: #999999;"><span style="font-size: medium;"><span style="font-size: xx-small;"><span style="color: #999999;"><span style="font-size: xx-small;"><span style="color: #999999;"><span style="font-size: xx-small;">*If you want blog
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com0tag:blogger.com,1999:blog-4283576929352081829.post-63995337898228569592012-10-03T22:50:00.004-05:002012-10-03T22:54:13.342-05:00Get Your Ava Gear!<div style="text-align: center;">
<span style="font-size: large;"><span style="color: #999999;">"Hope for Ava" bracelets are now available! The proceeds from these bracelets will go directly to the Dawson family and help Ava receive a Disney vacation of her dreams! </span></span></div>
<div style="text-align: center;">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHjvRnBT2oOCIwXThiFwZO5ReMliOb6Ro1-cvlzEN4YQ2vl3oVvn-VhZs0YB1VBSRzsdsAWeuxYG50rUQZATseWBTbfZsfxUaWjCtZ83snq7uWnsp4mng7qg6ziyQbeRbL-5uLEHhbAjD/s1600/bracelets+2+web.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHjvRnBT2oOCIwXThiFwZO5ReMliOb6Ro1-cvlzEN4YQ2vl3oVvn-VhZs0YB1VBSRzsdsAWeuxYG50rUQZATseWBTbfZsfxUaWjCtZ83snq7uWnsp4mng7qg6ziyQbeRbL-5uLEHhbAjD/s1600/bracelets+2+web.jpg" width="519" /></a></div>
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<span style="font-size: large;"><span style="color: #999999;"> </span></span> </div>
<div style="text-align: center;">
<span style="color: #999999;">To order, click <a href="http://hopeforava.bigcartel.com/product/hope-for-ava-bracelets" target="_blank">here.</a></span> <br />
<br />
<span style="color: #999999;">If you would like to make a donation without ordering, click <a href="http://hopeforava.blogspot.com/search/label/donation" target="_blank">here. </a> </span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com3tag:blogger.com,1999:blog-4283576929352081829.post-6189734534336723792012-10-01T14:27:00.001-05:002012-10-01T14:27:24.773-05:00Coping with DIPG-Shopping Isn't Fun Anymore<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Last fall Ava and I had so much fun back to school shopping. She was starting to form an opinion on what clothes she liked (dresses) and what she didn't (anything that was not a dress). I took her to the mall and we went to one of our favorite stores. She walked in and started thumbing through the rows of clothes, pulling out all the pretty sweater dresses and matching leggings. After my hands were full of potential new outfits, we proceeded to the fitting room. This was a new experience for both Ava and myself. Up until a certain age, you can buy your child's size and not worry about how it will fit but Ava was not at that stage anymore. She had to try her clothes on, just like me! She tried on numerous dresses, commenting how pretty they were. I let her pick her favorites because its no fun to wear clothes you don't like and we left the store. I remember this shopping trip so well because it was the first time Ava and I really shopped together. It was such a fun day and I loved experiencing it with her. </span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtH2I-HPBtpWT6ue9UeOkM_WBPxI5dc9ZwLDtXI3C96tXJzVLf3YIk6jW95EVwCSU5ozHIN0ks1Fq9tfBF9ZzK6WbmgQ2WRM6mtyqrZGR8wcvMynMTiWom6rTXVa1t1ZkIbUMfcav8KBPT/s1600/Ava+red+dress+blog.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtH2I-HPBtpWT6ue9UeOkM_WBPxI5dc9ZwLDtXI3C96tXJzVLf3YIk6jW95EVwCSU5ozHIN0ks1Fq9tfBF9ZzK6WbmgQ2WRM6mtyqrZGR8wcvMynMTiWom6rTXVa1t1ZkIbUMfcav8KBPT/s1600/Ava+red+dress+blog.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #999999;">Ava and her favorite dress from our trip. She would wear this red dress so much and always asked for me to wash it if it was dirty! </span></td></tr>
</tbody></table>
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<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Fast forward to this fall. The weather has started to cool off a tad and it made me think how Ava has no clothes for fall. She's outgrown most of her things, thanks to the extra weight gain from the steroids, and I knew it would be time to buy her some new clothes. Only this time I wasn't excited about it and neither was she. She told me to go without her and I was really bummed she didn't want to shop with me like last year. I proceeded to the same store and as I was picking out dresses, I got sad...very sad. <span style="font-size: large;">Would she like the dresses I was picking? Would she gain more weight and then not fit into them like her summer clothes? </span> </span></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">And then, the worst thought of all...would Ava be here a few months from now to wear these clothes? Each month my anxiety grows. When doctors tell you that your child is going to die within 9-12 months and it has been 10 months since that conversation, you wonder everyday if they will be here tomorrow or next week or next month. If your time might be up with them. I don't want to think about life without Ava but I do. Those thoughts are there and they don't go away. I can push them down, but then they come back up. </span></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">I still have hope for Ava and everyday she blesses us with her smiles and laughs. She continues to show no symptoms from her brain stem tumor but we don't know what the other tumors are doing right now (hopefully shrinking). Each day brings me joy and fear but ending the day with Ava in my arms is so comforting. I can only pray to end many, many more days like that. </span></span><br />
<br />
<span style="color: #999999;"><span style="font-size: large;"><span style="font-size: x-small;"><span style="color: #999999;"><span style="font-size: x-small;"><span style="color: #999999;"><span style="font-size: xx-small;">*If you want blog
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com8tag:blogger.com,1999:blog-4283576929352081829.post-87996835761241933182012-09-20T11:06:00.003-05:002012-09-20T12:52:58.462-05:00Living with DIPG- Glitter Makes Ava Happy! <div class="separator" style="clear: both; text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Ava loved her glitter session by <a href="http://goldhope.weebly.com/" target="_blank">The Gold Hope Project</a></span></span> <span style="color: #999999;"><span style="font-size: large;">so much! What girl wouldn't love playing with glitter? </span></span> <span style="color: #999999;"><span style="font-size: large;">I hope you enjoy these pictures as much as Ava enjoyed taking them! </span></span><span style="color: #999999;"><span style="font-size: large;"><span style="color: #999999;"><span style="font-size: large;">You can also check out a video from her session <a href="http://hopeforava.blogspot.com/2012/09/living-with-dipg-giggles-glitter-and.html" target="_blank">here.</a></span></span> </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com6tag:blogger.com,1999:blog-4283576929352081829.post-65630240377131977212012-09-19T13:00:00.000-05:002012-09-19T13:00:01.202-05:00Living with DIPG- Be a Match<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtXEw3MudJxtQXcyJioeOUzsHBYxL3Grzp6JWI6nDr4uoZb7JtGCj07NXytJEOODwpg7NUzgsDVMGvqSh-DoaGe_lyA-k7Jw31w9V2tYKo9zHMmkCPAoWwHHY8yX9rSzqqdFcGfbgtAKWr/s1600/Ava+Bone+Marrow+Flyer+web.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtXEw3MudJxtQXcyJioeOUzsHBYxL3Grzp6JWI6nDr4uoZb7JtGCj07NXytJEOODwpg7NUzgsDVMGvqSh-DoaGe_lyA-k7Jw31w9V2tYKo9zHMmkCPAoWwHHY8yX9rSzqqdFcGfbgtAKWr/s1600/Ava+Bone+Marrow+Flyer+web.jpg" /></a></div>
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<span style="font-size: large;"><span style="color: #999999;">We are holding a <a href="http://www.bethematch.org/" target="_blank">Be The Match</a></span></span> <span style="color: #999999;"><span style="font-size: large;">bone marrow registry event in Killeen next week. If you have been wanting to register and are local, now is your chance! </span></span></div>
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<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">Ava is not in need of marrow, but many other people are and haven't found their match yet on the donor list. You could help a family like ours and a child like Ava! </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><br /></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">If you would like to register and can't attend, please visit their website. A kit can be mailed to you. A few swipes inside your cheek and you can be put on the list. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Hope to see a lot of you there! </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com0tag:blogger.com,1999:blog-4283576929352081829.post-27907372227729892202012-09-19T07:00:00.000-05:002012-09-19T07:00:09.197-05:00Living with DIPG- Giggles, Glitter and Gold!<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/FYXQ-DlduyU?feature=player_embedded' frameborder='0'></iframe></div>
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<span style="color: #999999;"><span style="font-size: large;">Ava got to be a model for <a href="http://goldhope.weebly.com/" target="_blank">The Gold Hope Project</a></span></span>. <span style="color: #999999;"><span style="font-size: large;"> This is a video from her session and a few pictures. She was so giggly for Morgan and Julie. She just LOVED playing with the glitter! If you listen closely you'll hear her sing "The Booger Song" (this is right after she picks her nose...LOL). She learned this from Dr. Etzl and he sung it for her every time she asked. She was a sight to see and I'm so happy to share it with you! </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">I want to thank <a href="http://www.morgankervin.com/" target="_blank">Morgan Kervin Photography</a> and <a href="http://www.jewelsavenuephoto.com/" target="_blank">Jewels Avenue Photgraphy</a> for all their hard work putting this together! I know we will cherish the pictures and video of this forever!! </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com9tag:blogger.com,1999:blog-4283576929352081829.post-70019591647867198222012-09-17T08:23:00.000-05:002012-09-17T08:23:53.492-05:00Living with DIPG- Radiant After Radiation<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<span style="font-size: large;"><span style="color: #999999;">It's finally cooling off here in Texas so we are able to enjoy our backyard again. Ava has always loved chalk and she got a huge laugh out of this chalk that looks like dessert. It was so nice to see her outside playing! </span></span><br />
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<span style="font-size: large;"><span style="color: #999999;">Overall she is doing great. She is trying to walk and can crawl again. We are planning a mini trip to an indoor waterpark next month. That was one place she wanted to go all summer but we weren't able to take her for various reasons. I know we will all enjoy a weekend of playing and splashing! </span></span><br />
<span style="font-size: large;"><span style="color: #999999;"><br /></span></span>
<span style="font-size: large;"><span style="color: #999999;">She finished her 10 days of radiation last week and one cycle of </span></span><span style="font-size: large;"><span style="color: #999999;">
temodar. She handled it very well so we will discuss her starting another chemo cycle with her doctor. We will probably get a MRI in October to check the status of the tumors. Prayers that they shrink so she can move more freely! </span></span><br />
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<span style="font-size: large;"><span style="color: #999999;">I know I've said this before but we couldn't get through this without your help so I just wanted to thank you all for following us during this journey. It's not a path we would have picked but it makes it just a little bit easier knowing you are there for us. Thank you. </span></span><br />
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com3tag:blogger.com,1999:blog-4283576929352081829.post-52197385706048011142012-09-14T13:03:00.002-05:002012-09-18T17:27:59.635-05:00Living with DIPG- Picture Share!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNzYJFr-uLZzrx45qZ7bGhd7xEIXUPHAbWoySxtjXgflU55oXWYei9NPRQYBZ8EhOQlPU-plT8dQzn2s-cnoWhFrBBu9ZkfTegvLhAx0ssUBMaV-oHtLqfNJEqypbcbsxA8cu7hgbFlWZT/s1600/Ava+09:12+looking+up+bw+blog.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNzYJFr-uLZzrx45qZ7bGhd7xEIXUPHAbWoySxtjXgflU55oXWYei9NPRQYBZ8EhOQlPU-plT8dQzn2s-cnoWhFrBBu9ZkfTegvLhAx0ssUBMaV-oHtLqfNJEqypbcbsxA8cu7hgbFlWZT/s1600/Ava+09:12+looking+up+bw+blog.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #999999;">Oh those eyes! They get me every time. </span></td></tr>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-63526839327542217702012-09-05T14:28:00.000-05:002012-09-05T14:28:36.773-05:00Living with DIPG- Picture Share! <div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">You may remember when I wrote <a href="http://rachelbrenke.com/blog/photography-is-a-gift/" target="_blank">"Photography is a Gift"</a> and how I struggled to find an organization and photographer that could take our family pictures in Arizona. Well, thanks to <a href="http://www.thefilmproject.net/" target="_blank">The F.I.L.M. Project</a> we found <a href="http://www.ohsnapbycarlee.com/" target="_blank">Oh Snap Photography by Carlee</a>. Carlee was amazing with Ava and she just shined for her camera! These are some of my favorites from our session.</span><br />
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<span style="font-size: large;">Portraits mean the world to us and we are so grateful to Carlee and The F.I.L.M. Project for the providing these services to our family. </span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com7tag:blogger.com,1999:blog-4283576929352081829.post-52632285550043614392012-09-01T09:16:00.001-05:002012-09-03T14:59:14.627-05:00Fighting DIPG- You Can Help Save Lives<div style="text-align: center;">
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<span style="color: #999999;"><span style="font-size: large;">It's September. Fall is coming, kids are back in school and for us in Texas hopefully some cooler weather but it's also Childhood Cancer Awareness month. I will admit that before Ava's diagnosis I didn't even know there was a gold ribbon. But I do now and we need to spread the word! </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Cancer in children acts much different than cancers in adults but kids are treated like a smaller version of their grown up counterparts. Why? Because there is not enough research and very few drugs that were formulated specifically for children. This gives them poorer outcomes and more lifelong side effects. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Childhood Cancer</span><span style="font-size: large;"> can not be prevented and it's a mystery why some kids get cancer and others don't. Everyday, 36 US children and families are thrust into this world and 7 children die from cancer. It isn't as rare as you might think. In fact it is the 2nd killer of children. Car accidents are number one. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><i>What can you do? </i></span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><i> </i>Each of you reading this has the potential to help children like Ava. </span></span></div>
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<li style="text-align: left;"><span style="color: #999999;"><span style="font-size: large;"><i>Share- </i>Share this blog post, <a href="https://www.facebook.com/media/set/?set=a.427065854004567.100791.425507574160395&type=3" target="_blank">pictures</a>, <a href="https://www.facebook.com/media/set/?set=a.434230363288116.102570.425507574160395&type=3" target="_blank">awareness posters</a>, <a href="http://curechildhoodcancer.ning.com/page/facts-1" target="_blank">facts</a>, etc. </span></span></li>
<li style="text-align: left;"><span style="color: #999999;"><span style="font-size: large;"><i>Inform yourself and others- </i>Know the facts and where money for research goes. For example, the National Cancer Institute's federal budget last year was 4.6 billion dollars but only 3% of that budget went to fund research on ALL 12 major types of pediatric cancer. This leaves it up to private donors and non profits to pick up the slack. Do you think that's okay? I sure don't! </span></span></li>
<li style="text-align: left;"><span style="color: #999999;"><span style="font-size: large;"><i>Organize</i>- Organize a charity walk, lemonade stand, bake sale or pay a $1 to wear pjs to work or school this month all in honor of a pediatric cancer organization (I've listed my favorites at the bottom). </span></span></li>
<li style="text-align: left;"><span style="color: #999999;"><span style="font-size: large;"><i>Act</i>- Sign the petition at <a href="http://thetruth365.org/petition/" target="_blank">The Truth 365</a> to increase federal funding for childhood cancer. Register to be a bone marrow donor at <a href="http://marrow.org/Home.aspx" target="_blank">Be the Match</a>. I recently did this and it would be such a blessing to help cure a child of cancer! </span></span></li>
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<span style="color: #999999;"><span style="font-size: large;">I'm urging<i> you</i> to find something you can do </span></span><br />
<span style="color: #999999;"><span style="font-size: large;">this month to help the gold ribbon </span></span><br />
<span style="color: #999999;"><span style="font-size: large;">become as well known as the pink or red. </span></span><br />
<span style="color: #999999;"><span style="font-size: large;">Our children need us! </span></span><br />
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<span style="color: #999999;"><span style="font-size: large;">These organizations are funding ground breaking pediatric research or are close to my heart. They each have ideas on their website how you can help spread the word and support children like Ava. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><a href="http://www.thecurestartsnow.org/" target="_blank">The Cure Starts Now</a>- founded in memory of Elena who had DIPG. They focus on pediatric brain cancer research. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><a href="http://www.jessie.org/" target="_blank">Jessie Rees Foundation</a>- Founded by Jessie. A DIPG angel whose motto of Never Ever Give Up is being spread by Joy Jars, special gifts to pediatric cancer patients. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;"><a href="http://curechildhoodcancer.ning.com/" target="_blank">People Against Childhood Cancer</a>- They are on an awareness campaign. It was eye opening to see their graph showing how The American Cancer Society spends their donations. 1 penny for every dollar goes toward pediatric cancer research. </span></span><br />
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<span style="color: #999999;"><span style="font-size: large;"><a href="http://www.stbaldricks.org/" target="_blank">St. Baldricks Foundation</a>- A challenge between friends to shave their heads and raise money for children's cancer started this foundation that raises more money for children than any other organization. </span></span><br />
<span style="color: #999999;"><span style="font-size: large;"><span style="color: #999999;"><span style="font-size: large;"><a href="http://www.alexslemonade.org/" target="_blank">Alex's Lemonade Stand Foundation</a>- Founded by Alex, a little girl with neroblastoma, they are on a mission to cure all childhood cancers. </span></span></span></span><br />
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<span style="color: #999999;"><span style="font-size: large;"><a href="http://rallyfoundation.org/index.php/rally/home/" target="_blank">Rally for a Cure</a>- They are raising awareness and funds for cancer research and better treatments for pediatric cancer. </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com1tag:blogger.com,1999:blog-4283576929352081829.post-35869028641065109062012-08-16T14:55:00.002-05:002012-08-17T21:15:06.447-05:00Living with DIPG- Picture Share! <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPtvivvnm9zuol4a7Yw_5opvSn_47vc8nJwc4trQPzYw20R56WDo1PQ03Mki3yhTTaJjo4YGuY6hLfym0YPn4Kw78F0iPPXffNqyquYN_v3xA3dSY26D1P2Z9F8tkt1CK2JTEzSCRv0ie/s1600/Ava+08-12+coloring+smile+blog.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPtvivvnm9zuol4a7Yw_5opvSn_47vc8nJwc4trQPzYw20R56WDo1PQ03Mki3yhTTaJjo4YGuY6hLfym0YPn4Kw78F0iPPXffNqyquYN_v3xA3dSY26D1P2Z9F8tkt1CK2JTEzSCRv0ie/s1600/Ava+08-12+coloring+smile+blog.jpg" /></a></td></tr>
<tr style="color: #999999;"><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Ava smiling can make the worst day better! </span></td></tr>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com2tag:blogger.com,1999:blog-4283576929352081829.post-81440182592033238972012-08-15T14:17:00.001-05:002012-08-15T16:56:49.649-05:00Fighting DIPG-Results are In<div style="text-align: center;">
<span style="color: #999999;"><span style="font-size: large;">We got Ava's latest MRI results today. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">We knew we were going to be told that Ava's lesions on her spine have grown because of her inability to walk. Unfortunately, they have grown and spread. When they were first discovered they ranged from the T2-T8 vertebrae. Now they go from T1-T8 and there is a cluster on her L2 all the way down to her coccyx. These are clustered around a lot of her nerve endings and we think this may be causing some the pain she has been complaining about.</span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">The gliobastoma on her dura has also grown back by about 10-15%. Her brain stem glioma is stable (one piece of very good news).</span></span><span style="color: #999999;"><span style="font-size: large;"> </span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwrNE-RAzU_qkLExAkie0OiVphchwUNWAZAFDnMgsi9mAbS5niNmUJWH2mL-qbGQKdL8eI5_DPrEsPpqud91a-W0zhiFsqZPD2BKlgCHFuuuRgoAikWbxF0lkOysHM8ZL6sHiJnGyPIrdO/s1600/spine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwrNE-RAzU_qkLExAkie0OiVphchwUNWAZAFDnMgsi9mAbS5niNmUJWH2mL-qbGQKdL8eI5_DPrEsPpqud91a-W0zhiFsqZPD2BKlgCHFuuuRgoAikWbxF0lkOysHM8ZL6sHiJnGyPIrdO/s1600/spine.jpg" width="382" /></a></td></tr>
<tr style="color: #999999;"><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Here is the very large mass in Ava's spine. </span></td></tr>
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<span style="color: #999999;"><span style="font-size: large;">We have come to a point where we understand that none of this is curable but we said in the beginning that we will fight and we aren't giving up now. Ava will have an aggressive course of radiation to her spine and part of her brain (she has received her lifetime dose to the pons area) along with two different types of chemo. The hope is that it will improve her quality of life and function will return to her legs. There is no guarantee that she will be able to walk again but we are hopeful this will help. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">This is very hard for us. Ava is such a beautiful child. She is always laughing and smiling. I hate that her childhood is being taken away. There is no back to school for her. No excitement for the upcoming year filled with after school activities, new friends and learning to be independent. She gets to go back to radiation instead. She has to rely on us for everything. If she wants to go somewhere in the house, someone has to carry her there. We have to take her to the bathroom and even pull her pants up and down. Seeing her go from being so active to not being able to do things on her own is just so sad. </span></span></div>
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<span style="color: #999999;"><span style="font-size: large;">Please pray that radiation and chemo does help her gain function in her legs so she has more time to enjoy being a carefree child. </span></span></div>
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Cynthiahttp://www.blogger.com/profile/10841977220010248851noreply@blogger.com15