Friday, November 16, 2012

Home Hospice

Bear with me.  I’ve just started getting used to how morphine affects me so this post will probably be a disaster. Hopefully I can at least cover the most important things I have to say.  

Me,  brother Ryan, my dad, my mom, and my grandmother, all went downtown to the cancer center yesterday to find out what my doctors saw on my CT scan from Tuesday. Because I have been feeling worse and worse, I was expecting bad news. The news was worse than I was prepared for though. Dr. Gore said the Avastin did not seem to be helping at all as the cancer was growing and spreading at the same rapid rate that it was without Avastin. I guess most of what he said was a blur to me. He and Dr. Barnes agree that at this point that any steps they try to take to control my cancer would be futile. I asked him the question that had been at the back of my mind but that I also felt was something that simply had to work out in my favor: “Will I still be alive and functioning reasonably at Christmas time?” But sadly he responded with, “No.” I had to give up on studying abroad. Then I had to give up on taking a shorter trip to Vegas. And now the newest thing I had chosen to focus my positive energy on (having a fantastic Christmas with my family) had to blow up in my face like an overly filled balloon. 

This is Mary’s mom taking over. She is feeling terrible right now.   

When we were at the doctor’s office yesterday they tapped her belly and removed 3+ liters of ascites (fluid).  That procedure made her feel more comfortable to some degree, but did nothing to help with the pain.  While the procedure was being performed, Dr. Gore’s office was setting up plans for Mary to have home Hospice care immediately. 

The goal of hospice is to make Mary as comfortable and as pain free as possible.  We are using Hope Hospice and they have been wonderful so far.  They called before we left the hospital to make plans to deliver a hospital bed last night.  Mary could not sleep in a bed flat with fluids pressing on her lungs.  A hospice nurse came to the house to assess her pain needs.  She gave Mary oral morphine in incremental doses until a level was reached to hopefully help her sleep more comfortably through the night.  So, the hospital bed and oxygen and other durable medical equipment was all delivered and set up last night, and Mary sleep better than she has in several weeks, although she did wake up several times to take more morphine.

Today hospice came out to set her up on a Morphine pump so she can administer her own morphine as needed with the push of a button.  This provides a steady stream of morphine to better control the pain.  Of course it will not allow her to receive more than a preset dose.  

Mary has eaten very little today, and did not keep all of it down.

We have decided to have an early Christmas because it is so important to Mary and us to enjoy our time together.   Her brother and John are out buying a Christmas tree as I am writing this entry.

Words can’t describe how difficult it is to see Mary going through this agony.  She continues to be unbelievably brave.  I really want to say more, but my way of expressing the way I feel seems to only come out in uncontrollable sobs.  (Reminding myself to be brave for her though).  Mary is my precious, beautiful, brilliant, funny and tough as nails little girl (and she always will be my little girl).   

Please, please keep her in your thoughts and prayers.  Thank you for all the notes and encouragement you’ve written throughout her blog.  They have meant so much to Mary and to her family.

Mary’s mom, Beth


  1. I don't know what to write, but I want to acknowledge that I read this latest post. I'm saddened by this turn of events, and Mary remains in my prayers.

  2. You are so very loved. . . All of you. Mary, you continue to blow me away with your strength and with your courage. My prayer is that you feel the love and strength of those around you, now and in the days to come.
    I so love you!!

  3. What sad, sad news this is. Words fail me, my friend. Bless your heart. I have been thinking about you lots this past week and hoping that somehow through all the difficulty you've sensed God wooing your heart and wrapping His mighty arms around you. Hugs to you as you bravely walk through the valley!!

  4. Sad news. I din't know what to say except that you are in my thoughts!

  5. The first thing I thought when I saw that she wouldn't make it to Christmas was, "Make Christmas early!" The second thing I thought was, "I really hate this time of year. It really sucks."

    Not a day goes by that I don't think about you, Mary. And Beth, don't let being strong for Mary take what you need to be strong for her. (It's the way I think; I hope you know what I mean.)

    Lesia N.

  6. I am so sorry to read this. I don't know what to say. I don't really know you, Mary, but reading your blog has really affected me. I will try to live my life today and not worry to much about the future.

  7. All of you have been in my thoughts so much the past several months. Bless the Hospice nurses and their ability to help at this time as well as to have Mary at home. The idea to do your Christmas early is wonderful!
    Much love and prayers for all of you.
    Anne W

  8. I have been wondering how Mary was doing. I'm so very sad that such a young vibrant beautiful woman is facing this. Why is the GCT producing so much ascites? That is not usual for GCT. In fact, I've not read of any other woman with GCT having ascites. Prayers going up for Mary and her brave mother, Beth!

  9. Mary, you know you are loved by many, but its family time now, so laugh, love and remember. Share the love for your family with them, tell them how special they are and how they have shaped who you are. Build a wonderful memory to carry all of you through the coming days. You know many are lifting you up in prayer, so rest in our efforts and hold your family close.

    Beth, I pray the the Lord gives you and your family strength in the coming days. There is no way that anyone could ever understand what you and your family are feeling and going through. We try and provide words of encouragement, but I am sure we have no idea of the anguish you are experiencing. Please know that your tears do not go unnoticed especially by the one who made you. He is always there lifting you up.

  10. It seems so odd/funny that I first "met" you through a dating website, and made a donation on this blog more as a bribe for you to chat with me, or perhaps lay the groundwork for asking you out at a later date. Like you, it never crossed my mind that things might actually come to this. These things just don't happen to people our age, right? You struggle through some unfortunate circumstances and come out a hero on the other side, with a couple of scars and some great dinner conversation, then you wear a pink t-shirt in a 5K once a year. That's how this story is supposed to end. Right?

    For the handful that post, I know there are dozens if not hundreds more who are reading and just don't know what to write. I never met you in person, and only traded a couple of emails, but continued to follow your story and "check in" every week or so. People say you're brave or heroic, but you're not. You're just living your life as best you know how. I get that much at least. But you are still an example. Sorry, you don't get to shuck that title. You're an example of how to just keep living in spite of it all. And hell, maybe that's all heroism is. At the very least, there are those that will come after you, 20-somethings who contract illness at way too young an age, and faced with the worst, maybe find a little comfort in your journals. A sliver of sanity in the madness, or at least the knowledge of a shared experience. That's the gift you give.


  11. Mary we all love you, but I have to share with you that the one who created you loves you more than anyone else can. He made you just the way you are, perfect in His sight, but we all live in a broken world of sin and death, but The Lord has provided us a token that erases all the sin we will ever commit. Jesus loves you and wants to be there in your heart. His death on the cross paid the price so that we can have eternal life with him. His gift is free. there is no work, deed, or ritual required. The only thing He asks is that you invite Him into your heart by recognizing that we all have sinned and come short of His glory. He will be faithful to forgive us and cleanse us! There is no greater gift than to see each other in the presence of our Lord for eternity. Christ wants you to be there and so do lots of us who by faith believe. It is something that only you can do, no one can do it for you.

  12. Peace, dear Mary. You have been, are, and will be loved. To love and be loved is a great gift. I'm thankful for the time we spent with you and that you are surrounded by your family now.

  13. I have been following your blog, and I am so sorry to hear about this recent news. I also have granulosa cell tumor...the adult version. I have had it for the past 12 years. It has recurred twice. I know how frustrating it is to deal with doctors who have no idea how to treat this tumor. It seems like they could try something else...maybe surgery and estrogen blocking drugs...I don't know. Life just doesn't seem fair. I don't know if this will help, but I recently saw Dr. Gershenson at M.D. Anderson in Houston. He is a leading expert in stromal tumors. He is very knowledgable, and is a very nice guy.

  14. Mary, I have followed your blog for awhile now never posting just reading and admiring your strength, your honesty, and your tenacity in striving to maintain normalcy during this journey. Your insight belies your youth and I hope peace and comfort surrounds you as you are cared for and loved by your family and friends. have played and laughed with enthusiasm
    and sung with exultation;
    to know that even one life has breathed easier
    because you have lived,
    this is to have succeeded.

    Peace, light and love.

  15. Love ya Mary. You're totally right Beth, she's a great girl. I got my bracelets and shirt in the mail, I wore them both the next day, I've been wearing the bracelet wherever I go.

  16. Dear Mary, we met on OkC, exchanging just a very few messages recently. I was following your blog the last weeks. And now, what to say...
    I am, like many, with you and your family daily in my thoughts. It's just unimaginably what you're going through, words seem to be far beyond. I feel both so sorry and reluctant to lamentate all this relentless "No" against all your dreams.
    I hope for a beautiful christmas for you and that you somehow can feel relief and be at ease.
    Love / Ben

  17. Mary,

    We received your Christmas card, and it was such an honor that you thought of us at this time in your life! Thank you, and Merry Christmas to you!

    I was so proud when you decided to go back to school despite your illness. Education is a great gift and your goals merit praise.

    I want you to know that since hearing about you from Aaron, I have prayed for your recovery. When I go to church, I light a prayer candle for you and watch its glow through the service. Yesterday, knowing that recovery is not possible for you, I prayed that God would ease your way. My sister-in-law was in pain with her cancer at the end of her life, and she prayed for relief and got it in a miraculous way. Your prayers are heard, I promise!

    I am certain that you will find your way to Glory in God's heaven. My heart goes out to you and your family because you're beautiful, young, smart and have so much to offer. The world is a better place with you in it. Please remember that this life is a phase. You'll be reunited with everyone you love in due time.

    Enjoy your Christmas, and smile for the camera. I will never forget you.

    Charlotte LaRoux

  18. I just stumbled across your blog this week looking for information/personal experiences with GCT. My mother is in her 3rd reoccurrence, I just need answers. As I skimmed through your posts, I couldn't help but to get brought into your world. You are so brave to share your story and I wish you peace.

  19. Peace to you Mary and your family and friends. Rest well.

  20. Wow.. I am so sad to hear about this. I never knew Mary but followed her story and she always seemed so strong and very brave! She captured every moment of what was good in her life and made it bigger. I never thought this would be the way it would end... Sending you many prayers and thoughts and I hope she was able to have her final Christmas with the family. --- An angel has been returned to heaven, that's all I can really say.

  21. RIP Mary, I love you so much. I will always remember that November 30th is the day you started making people smile and laugh in heaven instead of here on earth. You will be missed.

  22. Rest in peace beautiful Mary!

    How fast will the maples get yellow,
    that illuminates our walk in the park.
    To die is to travel a little
    from crotch to solid ground.

    How narrow is the golden streak,
    that bodes that day will dawn.
    It tolls a tram in the fog,
    and the air is heavy to breathe.

    How soon will the cheeks white.
    So kiss those lips with water.
    See, gulls subtitling with chalk
    a poem in the black night.

    How soon stand tall poplars
    and naked with blacks in bars.
    To die is simply to snow
    like leaves in the merry hill.

  23. That's very sad! I really think to start learining bioinformatics and genetics to research cancer problems.

    Peace, dear Mary
    Andrew from Russia

  24. It makes me so sad that such a young beutiful girl has been taken away from life and her family at such a young age. I didn't know her but her story touched my heart.

    My thoughts goes to your family and rest well in wherever beutiful place you've passed on to.

  25. I have almost been afraid to check this blog out again after reading this post earlier. I have been following your blog for almost a year. And now to find out that you past away a few weeks a go... I didn´t know you IRL but it feel surreal that you are gone anyway. It all happened so fast...
    You have affected so many people with this blog....
    RIP and all my thoughts to your family!

  26. Thanks for the beautiful postcard Mary :) it has a beautiful picture on it.

    I hope you and your family are doing good, it's been a while since there's been an update... hope you had a good Xmas.

    1. It breaks my heart to let you know that my precious daughter passed away on November 29th at 6:15pm....only 13 days from her last post.

      Mary fought until the end, but thankfully passed away peacefully in her sleep. She was incredibly stoic and seemed to be more concerned about the welfare of everyone else. She seemed to know that I couldn't let her go, too.

      To be honest, I'm still in a state of shock and disbelief that Mary is really gone. I've surrounded myself with her photos, have a memorial to her on my mantel, and keep the door to her room closed so that when opened, I can smell her. I read and re-read her blog and cards she received in the mail. Her favorite hoodie is in a zip lock bag in my room so that it too will continue to smell of her.

      It is my belief that her energy and her spirit lives on, and that I will see her again someday. Those are the thoughts that comfort me.

      I'm so thankful that she found a place to express herself through her blog, and unexpectedly gained new friends who supported and encouraged her. So thank you to all of you, whether you posted or not, for being there for Mary.

      Mary's Mom,

  27. Words cannot express how I feel, I am glad I got the chance to meet her for a brief time. Your whole family are in my thoughts still.

  28. OMG...I just notice... My prayers! / LOVE