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Ana’s Story – From the Beginning Posted August 25, 2012 by Jackie Dooley

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On Saturday, August 25th, Ana had severe pain on her lower right side. Her abdomen was very distended and she could barely walk. We took her to an emergency clinic and discovered she also had a low grade temperature of 99.1. They sent us to the emergency room, fearing appendicitis. She got a sonogram to check if her appendix was inflamed and they discovered her liver was enlarged, so she got a CT scan which revealed a huge mass on her liver. She was transported to Westchester Medical Center for more tests and to meet with a pediatric oncology team.

8/27/12: She got a needle biopsy of her liver but the results were inconclusive as to the origin of the tumor.

As of 9/3/12, we still did not have a diagnosis, but heard from multiple physicians including the attending pediatric oncologist and the surgeon that the mass is most likely malignant. It has not spread anywhere beyond her liver (as far as they know – she’s still getting testing done). The mass seems to be originating somewhere else besides the liver.

9/4/12: Ana had a more invasive biopsy and a central line put in – she was in surgery for three hours. They took a larger sample of the tumor so the doctors could get a definitive diagnosis. The central line (called a Broviac Catheter) was put in in preparation for chemotherapy treatment.

9/7/12: We got the preliminary results from the second biopsy that this is something called epithelial hemangioendothelioma (EHE). The final biopsy results were expected by the end of day on 9/7/12, but we were told we would get them Monday 9/10.

9/7/12: The Liver surgeon, Dr. Wu, met with us and explained that the tumor is operable as is (it is 20 cm large), but she would likely need a complete liver transplant. He is awaiting the final biopsy results before saying more.

9/11/12: We are STILL waiting for the final biopsy results. One of the resident oncologists, Dr. Mona Elmacken came in and explained that the tumor may not be EHE as initially reported. They sent the biopsy slides out to a specialist in California and we will hopefully get the results back tonight or tomorrow.

Ana is a smart, funny and imaginative child. She loves to draw, sing and hang out with her friends. She adores animals, especially our newest kittens, Pepper and Luna. She has always hated needles and doctors, and now she is being poked, prodded and examined by a fleet of them, but she is being extremely brave.

You can follow Ana’s Progress in the Updates section which will contain blog posts from mom, dad and other family members.

59 Comments

  • mary March 24, 2013 at 1:25 pm

    Hey ana its Mary I’m so excited that you are coming back to school after break and that you are all better.

    From: Mary

    Reply

  • Mary February 15, 2013 at 11:38 pm

    Hey Ana it’s Mary I’m so happy that you are getting much better. I can’t wait until you come back to school. Everybody misses you. You complete are class it’s not the same with out you but you will be back soon and fill that missing piece in our class

    From: Mary:)

    Reply

  • Joyce Huizing February 4, 2013 at 9:52 am

    I’d love to send Anna and you :-) some “Happy Mail”

    If you are or know of someone in need of extra support and “happy mail”, please have a form filled out for them or yourself at http://www.2theheart.com/angels2theheart. If they are under 18, they will need parental consent to receive mail. Anyone on the recipient end of this program need not be terminally ill, nor have any specific requirements. Sometimes we are simply going through a rough spot in Life, having surgery, chronically ill, or any number of reasons to need extra love. The Angels will however, need the reason (illness, etc.) for the angeling so that we can better meet their needs and not say or do something innapropriate. Read more at the website.

    Hope to see you signed up.

    Reply

  • Barbara November 19, 2012 at 8:58 am

    Hello – my company United HealthCare has grants available for families with a child that is ill and needs help with medical costs. Please visit http://www.uhccf.org or call 1-855-698-4223 for more information. Best wishes to Ana

    Reply

  • Caitlin Welles November 14, 2012 at 8:11 am

    Hi, Dooley Family –

    I have been hearing about your situation in the community, at the dojo where my son also takes karate, etc. Wanted to share that I have relatives who started a foundation to help families with ill children cover all the crazy costs associated with caring for their sick child. Thought your family might want to check out what they could offer. Go to the below website for more information:

    Tara Ann Ralph Foundation | Helping Families to Help Their Children

    http://www.taraannfoundation.org

    Thinking of you,
    Caitlin

    Reply

  • Courtney November 8, 2012 at 6:28 pm

    I am so sorry to hear about your sweet Anna falling ill, I really want to suggest you looking into the Gerson Therapy.
    Food Matters Charlotte Gerson speaks in this documentary, and there are many documentaries speaking about the promising treatment of the gerson therapy, The Beautiful Truth being a great one.

    Much love to you and your family x

    Reply

  • Mary Gersec October 5, 2012 at 8:59 pm

    Hey Ana when you came to high meadow today it brighten my day I am so glad that you have been getting so much great news with everything I hope you feel better and come visit us again

    Sincerely Mary

    Reply

  • Susan D September 22, 2012 at 4:53 pm

    I wanted to pass along another note, from Cecelia’s grandmother and my friend, Marie Dezort, when I shared the link “Waiting, Round 2″ on Facebook — for Ana and you two (Jim and Jackie) to see. Marie wrote:

    “My granddaughter, Cecelia, wrote a comment on Ana’s site and asked Ana to text her if she wanted to. Pen pals circa 2012? At any rate, Cecelia is quite impressed with Ana…..and it’s not about her illness or courage so much, although, that’s a big part of it………but Ana’s singing “Set Fire To the Rain”……..which is also in Ceil’s repertoire :)

    That is cool. Ana’s singing has impressed and inspired so many!

    Many, responding to the FB link, too, said they are continuing to send thoughts, prayers, and positive energy to you all in this difficult time. Hope Ana is able to get good rest and have a good day – hopefully some fun if friends have visited! That is what I am picturing and hoping today. Also, love to see those photos and any drawings by Ana online! Love, Susan

    Reply

  • Cecelia Hostetter September 20, 2012 at 1:05 am

    Hi, I am Cecelia Hostetter, granddaughter of Marie Dezort who is friends with Susan DeMark. I am 12 years old and live in Lancaster. I think your courage is very inspiring and I would love to talk to you! If you ever want to say “hi” you can e-mail me at ceceliahostetter.2000@gmail.com ( i can tell you all about the amish :) I think you are the most awesome girl i have ever heard of!! Thank you for being such an inspiration!!! -Cecelia.

    Reply

  • Mary Gersec September 17, 2012 at 5:37 pm

    Hey Ana and family its mary. I hope you get better soon i’m sorry that I haven’t visited you yet. I hope you feel better soon. we have been thinking about you and praying for you.

    Reply

  • Jean September 14, 2012 at 7:02 pm

    I just found out about Ana. I feel terrible for all of you. I will keep up with what is going on with Ana on this page. Jackie, please know that you will all be in my thoughts and prayers. Ana has proven before what an amazing girl she is and she will prove it again. Please give her a hug from Gramma Judy’s friend. Again, you are all in my thoughts and prayers. Not much more to say.
    Jean

    Reply

  • francesca wolfe September 14, 2012 at 12:43 am

    school is great.we are learning about cells. to me its a lot of fun having elena as our assistant teacher. its to bad that ana has to miss it. we are making ana a quilt in class for ana. max is making a chimerical for the coffee thin and im in it and same with a bunch of other kids.hopefully it will be good and rase a lot of money for ana. oh my dad worked on a ralf laurene fashion show this week. ill send ana some pics to cheer her up or something.
    best wishes,
    francesca & the wolfe family

    Reply

  • Mary-Ann September 12, 2012 at 6:05 pm

    Hi Jackie , Jim, Ana and Emily
    Oh what a long time it is taking and I so hope that you get the results today so that you can start the relevant treatment. We would love to come down this weekend and will call to see what time would be good for you. Natasha sends her love as does the rest of the family, Mary-Ann

    Reply

  • Bill September 11, 2012 at 4:27 pm

    Quiet and shy in PE, I remember standing in the audience, mouth agape, as I witnessed Ana’s unbridled strength shine through at the talent show. Ana approached me a couple days later in her usual timid way to ask a question. I couldn’t help but smile, being more comprehending of the powerful soul which resides inside. I let her know the gig was up, she acknowledged with a big smile of her own.

    With the limits of your family’s strength being challenged and redefined, please know you are in our thoughts and prayers.

    Oh… and please let Ana know that the medical staff make great punching bags.

    Warmly,
    Bill, Katie, and Liam.

    Reply

  • John Hughes September 11, 2012 at 1:50 pm

    Hi Jackie and all y’all,
    As you heard, we turned my impromptu solo show at Rosendale Cafe’ on Saturday (Sept 9) into a last minute “door proceeds” fundraiser. Very few folks knew about it beforehand, no time for any press either, and it was pretty informal in its presentation that night.
    The door take that night would have been around $280; instead, we raised $685 (that includes a $100 pledge coming Friday)! I want to thank all of those generous people for their kindness. Hi and hugs to Ana,
    John Hughes

    Reply

    • admin September 11, 2012 at 2:22 pm

      This is so amazing, John. Thank you for donating the door for Ana, and thanks to everyone who gave that day. We are extremely grateful. Words aren’t enough. Love, Jackie, Jim, Ana & Emily

      Reply

  • francesca wolfe September 10, 2012 at 8:46 pm

    hey ana
    its francesca. max is going to sell coffee and baked goods in the lobe of the upper school building to rase money for u. i hope u got the video that we sent u today i think its on youtube i dont no.i think patrick is asking the hospital if the whole class can come and visit for a field trip. one more thing i hope that u dont have to many presents because………
    we all miss u and no that u will be all right
    yours, francesca and the wolfes

    Reply

    • admin September 11, 2012 at 1:11 am

      Hi Francesca, thank you so much for your note. Please tell Max that Ana was very touched about his fundraiser in the upper school lobby. She did get the video and watched it twice! It really made her smile. Please send more videos!!

      Reply

  • Patrick Keating September 10, 2012 at 6:12 pm

    Hi Jim,

    I am one of your drum loops customers and just got your email. Our family has just been through this with our nephew and I know what a trying time it can be. (He was at St. Jude hospital by the way and I can’t say enough good things about that place, it is absolutely incredible.)

    You sound like you are blessed with an amazing set of family and friends and I am hoping and praying for your family. Stay strong brother.

    Reply

  • sonia resika September 10, 2012 at 2:00 am

    dear ana,

    augie and i send you all of our thought and well wishes and love, and know you will be all better, and through this, and back where you belong very very soon!! its always been augies total absolute dream to go to hawaii too!! he was so excited for you at the thought you might get to go someday!

    love and wishes, sonia and augie

    Reply

  • Donna Cohn Viertel September 8, 2012 at 5:29 pm

    Hi, I know Sensei Sean from when he used to teach my son and myself karate in Stone Ridge before he got his studio. I work for the local paper in Stone Ridge, the BlueStone Press. Please email me information on the fundraisers so I can put it in the calendar section of the paper. What town are you guys from? We only cover the towns of Rochester, Rosendale and Marbletown, but we can put other towns info in the calendar at times, so let me know and lots of love to you guys.–Donna, BSP office manager and reporter.

    Reply

    • admin September 8, 2012 at 9:24 pm

      Thank you, Donna. There are several people working on fundraisers for Ana and we will definitely send you info about them as dates and details are confirmed. We live near Kingston, but both my girls go to school in Stone Ridge. It is very likely that an event would take place there or in Rosendale at the theater.

      Reply

  • Mary-Ann and Natasha September 8, 2012 at 12:46 pm

    Dear Jackie, Ana, Jim and Emily
    I am thinking of you as you get all these results of things that not much is known about. I hope that Ana is feeling better although I know that if she starts chemo that this might change. What a complicated path ahead of you all. I just wanted to let you know that I am thinking of you and hoping that you all continue to have the strength and support you need. Natasha sends her love, take care, Mary-Ann

    Reply

  • ginag September 8, 2012 at 12:14 am

    Hi. We don’t know you guys but both my son and daughter have trained with Sensai Sean so we know what is happening with Ana. I can truly empathize with what you are going through. My son has some medical issues and he was actually in maria ferari for 2 weeks last summer. He has had to undergo various surgeries but what you guys are going through is so horrific and my heart aches for you all. The worst thing in the world is when you can’t physically help your own child and you have to watch them suffer. We live in New Paltz right around the corner from the dojo and I would like to extend our help. Please let me know if you need help with cleaning or your kittens (we are animal people here). I also work from home so if you are ever in a situation with Emily please let me know. I know you don’t know us or what kind of people we are but you can check us out anytime!:) My email is wordwiseny@earthlink.net and I check it regularly. Our prayers are with you all.

    Reply

    • admin September 8, 2012 at 9:26 pm

      Thanks so much! We really appreciate the words of support and offer to help. We have two teenage kittens who think they own the house because it’s empty so often lately. We have lots of people helping us take care of them but will reach out if necessary.

      Reply

  • Julie Misiano September 7, 2012 at 6:00 pm

    My son Jace is in Emily’s karate class. He takes class Mondays at 5:30 and Saturdays at 11am. I don’t know where you live, but if there is any need for Emily to get a lift to either class, we would do our best to get her to and from class. Please let me know. You can find me on FB, or get my # from Sean. Sincere wishes for some answers for you and Ana as well as peace and hope for the whole family.
    Julie Misiano

    Reply

  • Kate Waage September 7, 2012 at 4:52 pm

    Hi Ana & Jackie,
    We are very sorry to hear that Ana got sick, we wish Ana to stay strong and believe in herself.
    Love,
    Kate, Dan, Daniel Waage (Daniel trains with Emily @ Sean’s dojo)

    Reply

  • Nicholas Avallone September 7, 2012 at 4:51 pm

    I’m a dad who has a kid enrolled in karate with Emily, and just heard about Ana via the dojo. I just wanted to extend my sincerest wishes for Ana’s speedy recovery.

    Reply

  • Mary-Ann September 7, 2012 at 11:23 am

    Hi Jackie and Ana. So glad that Ana had a quieter and more relaxing day yesterday. Sending thoughts and good wishes to you and hoping that you get more information today, love to you both, to Jim and Emily, Mary-Ann and Natasha

    Reply

  • Mary Gersec September 7, 2012 at 1:35 am

    Dear Ana and family. Its Mary I’m so sorry that your sick. I know that you will feel better soon. Today we all made cards for you. We are all sending hopeful and amazing thoughts to you. Everybody is saying that there’s a missing piece in our class. but we all no that you will be back soon. I am so excited to see you soon. hope you get and feel better!!!!!!!
    Sincerely. Mary

    Reply

  • Suzanne McHugh September 7, 2012 at 1:25 am

    Hi Ana,

    I am a friend of your GrandMother Janne. I can tell from your eyes in the photo above that you are an old soul (I’m sure I am not the first person to tell you that). That means that you have the strength and the will to triumph through this illness. I suspect that you will probably help your loved ones find the courage to support your journey. I am a 20 year survivor of breast cancer, so I know it can be done. I am keeping you in my thoughts and sending healing white light your way. Know that you are loved by many.
    Suzanne

    Reply

  • Mary Gersec September 7, 2012 at 1:16 am

    Dear Ana and family. It’s Mary. I’m really sorry that you are sick. Everybody in the class is saying that there’s a missing piece in our class. It just is not the same without you here but we all know that you will soon be back in our class. We are all sending hopes prays to you and all good and amazing thoughts to you. Everybody in the class sent you letters today. I know that you will be well soon and I hope you feel better!!!!!!!!!

    Reply

  • francesca wolfe September 7, 2012 at 12:32 am

    hey Ana its Francesca.The first day of school was great but the room dose not feel the same with u not in it. i hope u got my letter and enjoy it. u are being very brave going threw this. mary and i are going to try to come and see u.i am looking forward to hopefully seeing u, writing letters, Patrick wants to try and face chat with u. we all miss u and hope that everything will be ok and we all miss u very much. love Francesca

    Reply

  • erinjulianne September 6, 2012 at 6:20 pm

    Hi Ana. I am Julianne’s mom. Julianne and Emily are friends/classmates. Our hearts are deeply touched by you and your inspiring strength.
    Julianne knows this poem in Chinese and thinks that you might like this English version. It’s a thousand-year-old Chinese poem on homesickness (by Li Bai, a famous poet from the Tang Dynasty).

    “In The Quiet Night”
    So bright a gleam on the foot of my bed –
    Could there have been a frost already?
    Lifting myself to look, I found that it was moonlight.
    Sinking back again, I thought suddenly of home.

    We are thinking of you and wishing you a quick, spirited recovery.
    Hugs to you, Emily, your mom & dad
    from Julianne, Danica, Erin & Don.

    Reply

  • Lauryn September 5, 2012 at 10:31 pm

    Ana i just wanted to let u know that I pray for u every night and that my parents told my grandmas & two of my aunts & uncles & in their church u r on their prayer lists and they all pray for u every nigh :) I hope u feel better!!!!!

    Reply

  • Terri Schoenlaub September 5, 2012 at 3:03 pm

    Hi, Ana, I am praying right now for a great outcome. I am a friend of your Grandma Judy’s. Please know that I am asking God and his angels to take care of you and make you better so you don’t have to do this again. I’ve seen lots of pictures of you and you are a beautiful girl. You grandma loves you so much. Just keep praying and trusting that this will all be over with soon. Picture in your mind all the fun things you do and know that you will do them again. You are such a beautiful girl. Sending hugs.
    Terri

    Reply

    • Nadia September 5, 2012 at 5:21 pm

      Dear Ana,
      I have met your Grandma and my son goes to school at High Meadow. Maybe you know him, his name is Sasha. This year he will be in grade 8. I will bring your name to a pray circle I am part of where many people can pray for your speedy recovery together creating a strong current of healing. I am so sorry you and your family have to go through this challenge and I pray that many good things will come of it as they often do.
      We will be thinking of you in good health,
      Nadia

      Reply

  • Patricia Barnett September 5, 2012 at 1:38 pm

    You are all in my thoughts and prayers. May God speed your recovery.

    Patricia

    Reply

  • Rachel Van Carpels September 5, 2012 at 1:04 pm

    This is so difficult for any family to go through, but it is clear that Ana is incredibly loved and will have a massive team of supporters throughout this challenging journey to health. I will be following along and sending out positive, healing vibes to her and everyone affected. I am sure all of her friends and teachers at HMS are thinking of her daily as they begin the school year, and can’t wait to see her smile!

    Reply

  • Mary-Ann September 5, 2012 at 11:21 am

    Dear Jackie, Ana, Jim and Emily
    I am glad that this is now over and that you should get the answers you need this week at least. I am sorry Ana is in so much pain – perhaps a stomach wrap will help her move around as it would support her and prevent excessive movement when she uses her muscles. My thoughts are with you all and especially Ana. Natasha sends her love and care as well. Take care, Mary-Ann

    Reply

  • erin September 5, 2012 at 3:30 am

    Dear Ana and family,
    I do not know you, but i want you to know you are in my prayers and that i have read of SO MANY MIRACLES with cancer. Anything is possible. I wish there was more I could do. I do believe in the power of positive thinking and prayer, both of which i will be sending to you all in spades!!!
    you will be in all of our hearts tomorrow during the procedures.
    namaste and godspeed,
    lots of love “auntie” e (that’s what all the kids i know call me;)) xoxoxo ;)

    Reply

  • Carol Tomassetti September 5, 2012 at 12:02 am

    My thoughts and prayers are with you. Jackie we rode bikes together early this year. Ana I’m sorry to hear about your health challenges. Just know that so many people are thinking of you and sending prayers and positive healing thoughts your way. Whenever one of these things happens, it’s so hard, but at the same time you realize how many people care about you, your family and how much love and healing everyone sends your way. I hope all that love accelerates your healing and wishing that you get better soon!!

    Reply

  • Leah Tyler September 4, 2012 at 8:37 pm

    Hi I am a friend of Grandma Judy and am so sorry to hear of Anna’s health crisis. My thoughts and prayers are with her and all of your family. Bless you Anna girl hang in there! Leah

    Reply

  • Lauryn September 4, 2012 at 8:25 pm

    I can now visit this sight from my iPod, tell Ana I said I hope she feels better, I hope for the best of the biopsie (idk how to spell that) results

    Reply

  • Bob Nolan September 4, 2012 at 7:44 pm

    Jackie,

    Many thanks for making this site so we can follow Ana’s progress. I know we’ve only been connected by email, Facebook and Twitter for 5 or 6 years, but in reading about Ana today on Facebook, I added a link to your page on mine. It goes without saying that my prayers are with all of you and as a church elder I’ll make sure Ana gets added to our prayer list.

    Godspeed my friend,
    Bob

    Reply

  • JessieBanks September 4, 2012 at 6:23 pm

    I just learned about Ana’s situation from my friend Susan Perrin, on Facebook. Although I don’t know you guys I’d like to say that I feel compassion for Ana, and for your family. Our children are so sweet, so pure and lovely that any trauma, pain or danger is devastating to us. My prayers are with you and may God’s love win in Ana’s life.
    Love,
    Jess

    Reply

  • suzbe3 September 4, 2012 at 11:55 am

    Sending all our love and healing thoughts to you all and Ana. She has the voice and spirit of an angel and we know she is well supported.
    with love from Hudson, Bryan & Susan Perrin

    Reply

  • elizabethlittleton September 4, 2012 at 3:15 am

    This new site is great- thank you for making it so easy for all of us to follow Ana’s progress- she is in our thoughts constantly, and you are so generous to share in this way. It was so good to see Ana and Jim tonight, I just wanted to sweep her away and take her to the mall! We will be back down this weekend. Lots of healing love to all of you. xoxo liz and storey

    Reply

    • admin September 4, 2012 at 11:08 am

      We are all so appreciative of your visits, gifts and love, Liz. I know you have a busy life and it really gives me strength to know you are coming to bring Ana company and encouragement (and lots of wonderful gifts)

      Reply

  • kellygarbo September 4, 2012 at 3:07 am

    Love the website and we are so happy there’s a direct way for us to help. Please tell Ana she is everyone’s “Girl on Fire” and we are ALL cheering for her!! Kelly and Ian and Cleo

    Reply

  • Barbara September 4, 2012 at 2:36 am

    I’ll be following you here. I am a dear friend of Gramma Judy,,,we are in touch daily,,,now I can send my wishes and prayers directly to Ana. ..Ana….tomorrow I will be thinking about you all day as you have your special procedure.Lots of love and healing light are coming your way all the way from Los Angeles, California. xxxxxx “Nana” Barbara

    Reply

  • Mary Jean September 4, 2012 at 12:34 am

    I am a neighbor of Ana’s grandmother and aunt, I have been following Ana’s story and will be keeping you all in my thoughts and prayers. I have a youth group I work with, and would be interested in sharing Ana’s needs/story with them to see if they can come up with a way to help. Possibly Letters/cards, small gifts etc. Maybe a coin drop at the local stores. I will be meeting with them tomorrow evening. Please, feel free to direct me in your and Ana’s needs.

    Reply

    • admin September 4, 2012 at 2:29 am

      Thanks so much for your kind words and support. We are so grateful for everyone’s desire to help. I’m really glad I can finally respond to people’s comments directly too – the Carepage didn’t allow me to do that. -Jackie

      Reply

  • shanb September 4, 2012 at 12:29 am

    Hey Jackie (and family)
    I haven’t written until now, although I’ve been following Ana’s story on Carepages. I’ve wanted to write many times, but I had no idea what to say. Words seemed so unhelpful. But your message the other day, about Ana (and you) wanting to go home really touched me. I remember sitting in Albany Med after my water broke early while I was pregnant with Jilly. Mike and Norah had come to visit, as had my parents and some friends. They all left and I remember feeling so lonely and scared and pissed that I couldn’t go home. I just so desperately wanted things back to “normal” and I knew it just wasn’t going to happen.
    Please know we are thinking about you all every day. Norah and Jilly would like to make cards for Ana. I’ll try to get them in the mail soon. When I told Norah Ana would need chemo and and Ana was sad about losing her hair, Norah said, “Mom, that’s why I donated my hair a few months ago, so girls like Ana can have an awesome wig”.
    Just know we are with you, supporting you, cheering for you, and crying with you.
    Love,
    The Beckwith Family

    Reply

    • admin September 5, 2012 at 11:33 pm

      Thanks so much, Shannon. Your words are helpful. I come back to the site (and the Carepage) regularly to read people’s comments because they give me strength.

      Reply

  • jennifer September 4, 2012 at 12:19 am

    i’ll be following you. say hello to ana for me and i hope tomorrow’s procedures go well. jennifer

    Reply

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