chosen

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**our girls**

Today started beautifully. She called for me in the middle of the night to bring her into our bed. I happily did. We slept like we did when she was a baby…wrapped in each other. I breathed in her scent. She rubbed Tonys head and face and pulled him into her. She held her baby sister.

She even drank some water.

Tony brought her the radio he bought last night and she loved it. Then we headed to Palo Alto.

 

I am going to cut to the chase. Tonight I need to be with Tony and he needs to be with me . . . but we agreed to update on here. We belong to each other . .

 

What I posted about new tumors wasn’t exactly right. Its not brand new different kinds of tumors in her frontal lobes . . . Its a progression of sorts of her DIPG tumor. And some new ones “sugaring” on her spine as well as grown in her spine.

We accessed her port to get her some fluids and hopefully get her over this vomit cycle. Her last time in the hospital…should be cause for celebration . . . Its not.

It is very aggressive. Docs have never seen such a aggressive case.

1-2 months…mayyybbeeee 3 months. My momma sense says 1 month.

What we have decided..

We have chosen to start in home hospice care. We get on service tomorrow morning. They will help us keep her comfortable . . .

We could do chemo. But its been shown to be ineffective for DIPG and the side effects are just not worth it for us . . . well for her.

We have chosen to donate her tumors. All of them that Stanford can use. JLK will be part of the cure.

We have chosen to have the boys here off and on . . . but as much “on” as we can.

We have chosen to have Tony take this time off of work to be with her, and hopefully take time to rebuild ourselves and our family afterwards.

We have chosen to do our best to live, to embrace each other and every moment we can.

We have chosen life . . . her life. . . over the battle.

But she will never lose the battle to cancer.

It wasn’t a fair fight.

87 Responses to “chosen”

  1. Just wanted to let you know that I’m thinking of your family. After yesterdays blog post I did some research about donating. I knew of some other cancer families that did that but wasn’t sure if it was different for dipg. You should check out the dipg family group. I posted the question in the group and had one in my inbox from a mom. You are receiving some good advice in response to your post. If you’d like to talk about it, or if you’d like for me to help you with the leg work, please let me know. My cell is 405 205 8887.

    Please feel free to call if I can help with anything at all — or if you just need a listening ear.

    Blessings
    Kim Spady
    Caleb’s Mom

    I had to explain it wasn’t for me but a family going through DIPG

    Please feel free to pass on my info to them . There are several of us who are willing to help parents arrange the donations if that is not easily done via their treating hospital. We are still not close to a cure, but we are so much closer than we were when my son was diagnosed, thanks to many donations. It is amazing that so many parents think of it and choose to do it.

    Blessings to you –
    Kim

    Here is the family group link. https://www.facebook.com/groups/DIPGfamilies/

    I’m so sorry. Prayers going out to you!!

  2. Thoughtful, beautiful decisions, both unfair and horrible for you to have to make. Just shaking my head in frustration and sadness for you all. Hugs.

  3. Libby,

    As always, why words could I ever say to ease your pain or the ache in your heart? None- and I know it so all I can do is send you love and peace from the bottom of my heart to your heart, and Tony’s and JLK’s, Jonathan, Nicolas and baby Charlotte. Oceans and oceans of love.

  4. You don’t know me. I read about Jennifer through Ann’s post. I am so sorry for what she has been going through and for this unfair fight. I am amazed by your strength, faith and courage. I can’t imagine your pain. Being mother to three girls, I cannot stop weeping after reading about Jennifer’s cancer and your entries. I wish you all so much strength and peace in the days ahead. Beautiful Jennifer has been blessed with the most caring and loving family. May you all find comfort through one another and the beautiful moments you have with Jennifer.

  5. I found your website through a friend. My heart is with you, please know you are not alone! And please don’t ever question the decisions you made during this time. Last year I lost 4 love ones to cancer including my mother-in-law & father. I’m officially saying F@$K cancer! “Grief never ends but it changes. It’s a passage not a place to stay. Grief isn’t a sign of weakness nor a lack of faith. Grief is the price of love.”

    I grieve not yet for you JLK. You are in my thoughts you precious angel on earth. Fight on JLK fight on.

  6. Libby,

    There are no words I could use to express the sorrow I feel for what you’re going through, and the amount of prayers I’m sending JLK’s way and your family. You and Tony have made the hardest decisions and taken this impossible situation with such grace and dignity while giving your daughter the memories and dignity she deserves. She’s truly lucky to have you as her parents and I know you know you’re lucky to have her as your daughter. My heart aches so much for you it’s sometimes hard to breathe. I’m continuing to be hopeful for a miracle for JLK, being the miracle she is for you. Tons of love and continues prayers to you, Kranz family!b

  7. Libby, Tony and Jennifer, I read each post in tears – some of joy for how blessed Jennifer really is to have such wonderful parents taking such good care of her. But tears of such deep sorrow and pain is all that flows right now. No person could ever prepare themselves for what either of you have or will go through.. Im so sorry you are all suffering – but I cannot be thankful enough God chose you to be her rock!! Jennifer as the Angels whisper do not be scared know its a journey God is taking you on – save a place for all of us – God will bring us someday too. My heart is shattered – this is not the way it was to be – I planned an ocean trip Hailey you and me, Tony, Libby Nicholas, Jonathan and Charlotte.. But now I see God has chosen a different path for thee… I love you sweet heart and we see you someday… My love to all of you praying constantly this is a nightmare we must wake up!!! <<>>

  8. Your journal is a tribute to your strength and your love a of your cherished child. May you be blessed with the comfort of your family and friends as you walk this path.

  9. I sit here in tears with my heart breaking for you and your family … wishing there were something I could do … something I could say. Thank you for sharing your journey, letting us all in, teaching us important lessons about love, parenting, and bring positive. Many prayers and love.

  10. I don’t know you, but you and your family have become part of my life. I check each day to see how JLK is doing. My heart is breaking for you. You are in my thoughts and prayers! I pray for comfort for JLK. I pray for comfort for you and your family. I can tell that you and yours are very loved. Please know that your story is touching the lives of perfect strangers.

  11. This mother’s heart aches for you and reaches out with what strength I have to strengthen you in your sorrow. Praying for peace and some semblance of joy as you have these last days with your little girl.

  12. You and your beautiful family are in my prayers. I am so sorry that you are all going through this. Go love on one another. spend every last moment sucking in life’s marrow together.I’m praying for peace in your hearts and no pain for your sweet girl. God bless you and your husband for the strength you are summoning to get through what no parent should ever have to experience.

  13. I think and pray about your family daily. I am so sorry your sweet little girl has to endure this. You are the strongest mom I have ever seen.

  14. Last night I saw Heidi post a sweet picture of Theo and Jennifer a few years ago, both smiling and so sweet together. She asked that we say a prayer- which is something we have been doing every night since finding out about your and your family. When I woke up this morning I saw this updated post and it really shook me up for so many reasons. Libby- although we have never met I want you to know that you are one of the strongest women out there. Your grace and humility- while also being totally honest is so powerful. I am glad to hear that Tony will be able to take this precious time off work, that hospice will be there to assist you and hopefully help manage things so that Jennifer can be at ease. We will continue to pray for the love, supoprt and strength that you will need in the coming weeks. Enjoy today and all that JLK has to offer to you all- let her sparkle be even more radiant!

  15. I shed tears as I follow your blog. I am so sorry that you have to face this painful road in your life. You and your husband are doing great with JLK. I recommend a bereavement group to attend later for support. I volunteered as a Hospice nurse for 10 yrs. and I was going to recommend Hospice yesterday. I am glad you decided on Hospice to help you out. I got more out of life when I volunteered with them. It was a painful process since I became a part of the family that I served but I got more out of life by doing so.
    Your blog is helping people to enjoy,love,and appreciate their families. I keep praying for your family and JLK. God Bless You and He knows what you are going through.
    P.S. I am Melissa Naylor Bilardello’s mom.

  16. Libby & Tony,
    There are just no words. Just know, you have the support of so many across many different cities and states. Jennifer has touched the lives of many, large in part to your selfless sharing. I hope in your times of unbelievable heartache, you feel all the love surrounding you all. Our thoughts and prayers are with you, always. The Beasley Family

  17. I pray for strength and peace for all of you ad for everyone who loves you and JLK (there are so many!)
    Continued love and support for all of you on this new part of this journey. It will bring its own hardships and pain and moments of joy and I am thinking of all

    1. of you through all of it. I am so sorry for these decisions you have to make and time and again have made with love and clarity. What an amazing family you are.

  18. :sigh: I am in tears for you all. This is just not fair! Enjoy every second you have left with your little girl. I am glad you found someone to take that awful monster to study to help find a cure for the next “Jennifer”. I pray Jennifer is able to stay comfortable and for strength for all her family to be able to “take another breath” and you endure this horror that is breaking your heart.

  19. I can’t even start to understand the pain that you all must be going through. I am so sorry this is happening to JLK and all of you. I wish there was something I could do to help. I’m sending prayers and love, repeatedly through out the day.

  20. Libby and family, you don’t know me, but I am a good friend of Ann’s, (and Julie’s and Christina’s), I feel like I know you all, though we have never met. I have read your posts religiously, I have re-posted all that I could. I have teared up and stifled cries while reading at work. But, this post hit me the hardest. I am not sure why I am even posting here. I have no words. I have no suggestions, or ideas. All I know is the You Tube video you shared a while back, of all of the children speaking out about funding for childhood cancers, hit a chord. A realization. That this needs to be a priority. Like your sister said to me last night. It needs to reach the exposure that Breast Cancer Awareness has. And, though I don’t have much money, I have passion for this, and I know alot of people. And, I will shout this from the mountaintops, if need be, to get this venomous disease, and other childhood cancers, into the forefront of society. But, this doesn’t quite help you today. Today is an unfair, ugly reality. And, just know there are more people that you can imagine praying for you all, and wanting to do whatever they can to help. Thought, prayers, everything in my being, coming your way.

  21. you are in my thoughts and prayers. You are great parents and provide her so much love and support. Know the journey will not be easy nor fair. Do not let anyone tell you how to feel or cope or anything else. Each person’s walk is different. Just know we are all here for you when and if you need us to be.

  22. God is holding you in the palms of His Hands; He has sent his most powerful Angels to wrap their wing around your family. Let us all pray that the beautiful tribute you are writing for Jennifer will keep you and your family at peace as you go through this heartbreaking time that us unbearable and so tragic. When time has passed you will have your letters and the responses of those who know and love you as well as those of us who are just here to help you bear the pain. May His Peace be with you all.

  23. Huge hugs, Libby 🙁 I don’t even have the words to express how much my heart is hurting for your family, and how much I am still praying for a miracle every day… If you need anything, just say the word…

  24. I am so sorry that you had to make these hard decisions. It is just so unfair. Please know we are praying for your family.

  25. This is something no parent should have to handle. My heart and love go out to you and your family. My heart breaks for her brothers and baby Charlotte, and for you. When it is time for Jennifer to go to heaven, my puppy is up there waiting to give her kisses and love and to keep her company. They can run and laugh and play together until we all join them someday. This little girl has touched so many people with her spirit and love.

  26. You all are so strong. My heart goes out to you and your family. You are an amazing mom and your daughter will always know that.

  27. I am with so many others who just don’t know what to say, how to say it except try to speak from the heart as you have so eloquently done in sharing “from the gut” with all of us. Will continue sending prayers for peace for all of you, comfort and some more fun times for Jennifer with her family, thankfulness that there is a Hospice to help, strength to all the family as you continue down this sad road, and more love than you can imagine. Your entire family is absolutely amazing in how you have all united to help in every way possible. Sending love and prayers for a miracle!

  28. For choosing love and living each moment and doing both in a way that brings you all the togetherness there is; you have already won.

    JLK has shown the world how big her brave is. Her Mom and Dad have taught her well. You are all in our thoughts and prayers.

  29. You are so brave. So much love to your family. I don’t know you but your story has changed me for the better.
    Love love love to you

  30. I am praying for your family, I am so sorry to hear of you daughter’s condition. I wish for you to keep hope alive around her, for her spirits. Your daughter sounds like a good candidate for a new clinical trial in NY by Dr. Mark M. Souweidane
    http://www.mskcc.org/cancer-care/trial/11-011
    I used to manage clinical trials and some can be life altering. Please try if you can. for more info call 212-639-2336.

  31. To Libby, Tony, JLK, Jonathan, Nicolas, baby Charlotte, and your extended family, I send you love and strength from the bottom of my heart and the depths of my soul. I know there are no words so I offer my prayers. Thinking of you all.

  32. I lost a daughter too, a long, long time ago. I did survive it, but at times I thought I wouldn’t. One time I had to run away, I went to relatives overseas, just to escape everyone feeling sorry for me…and having to talk to them in the supermarket. Just know you will survive this, but you will not be the same. After Anne-of-Avonlea lost her daughter, the narrator wrote (I am paraphrasing), She did smile again, but her smile was never as wide. For some reason, that quote brought me immense comfort. Even today, 27 years later, when I think of my daughter, I cannot do it without a tear in my eye and a lump in my throat, but I have gone on to live a very happy life. Be kind to yourself. Be your own best friend.

  33. You and your family are in my prayers since I read this. Love to all!
    You are such a strong woman! Hoping your family gets strength to deal with difficult times!

  34. Libby and family,
    I have been following with teary eyes all along. How brave you all are! Please know that there is not a day that goes by that I do not send a prayer for your family! I am not a parent yet and so the weight of this I can only imagine. I hope your time as a family is all that you need it to be in these last few months. I will keep praying and sending you all strength!!
    Sarah

  35. I am so very humbled reading your words…your heart and soul for us to see. I’m a single mother of an amazing 9-year-old little girl and the thought of what you’re going through just paralyzes me. The urge to drive like a madwoman to her school right now and hug her fiercely until neither one of us has breath left is overwhelming me! My own heart and soul plainly ache for you and your precious family. I pray fervently for your miracle…and I thank you from the very bottom of my heart for your words, for they remind us all how dear and short life can be.

  36. Is there anything I can do? I live in San Jose, CA, so I’m close. Even if I can just bring you something to eat or groceries. My cell number is 408-888-6062. Please don’t hesitate to call or text!

  37. A parent should NEVER have to make the choices you are making. You are handling it all with such grace and courage. I read your blog and have no words to describe the sadness that I feel after. I am sorry that you and your family has to go through this. Thoughts are with you and your family.

  38. Dont give up, as long as she is here, there is still hope. There are many alternative medicine options you may want to consider, but prepare to meet resistance from traditional doctors. (since it cuts into their profit margin). Free info at: cancertutor.net. I am praying for a miricle for your family…. spontanious and unexplicable cure! Dont give up!

  39. No words, just love being sent from neighbors in San Jose. I am carrying your Jennifer and family in my mind and heart every moment of the day. Praying for peace and love to surround and keep you through these days that no parent, sibling, or child should have to experience.

  40. More and more I have been reading about children with some kind of cancer. I can not even begin to comprehend your lives, your love, your hearts. I will pray for all of you.
    This poem helped my mother over 30 years ago. I hope you can find some comfort in it as well. As you go through this, remember, all heaven is rejoicing and preparing for her to come home.

    “A Child of Mine”, He said.

    “I will lend you, for a little time
    A child of mine.” He said.
    “For you to love while he lives
    And mourn for when he’s dead.
    It may be six or seven years,
    Or twenty-two or three.
    But will you till I call him back
    Take care of him for me?”

    “He’ll bring his charm to gladden you
    And should his stay be brief,
    You’ll have his lovely memory
    As solace for your grief.

    “I can not promise he will stay
    Since all from earth return,
    But there are lessons taught down there
    I want this child to learn.

    “I’ve looked the wide world over
    In search of teachers true
    And from the throngs that crowd life’s lanes
    I have selected you.

    “Now will you give him all your love
    Nor think the labor vain
    Nor hate me when I come
    To take him home again?

    I fancied that I heard them say
    ‘Dear Lord, Thy will be done!
    For all the joys the child shall bring
    The risk of grief we’ll run.

    ‘We’ll shelter him with tenderness
    And love him while we may
    And for the happiness we’ve known
    Forever grateful stay.

    ‘But should the Angels call for him
    Much sooner than we’ve planned
    We’ll brave the bitter grief that comes
    And try to understand.’

    Edgar Guest

    A Child of Mine, is written on my brothers stone.

    Marcia

  41. A friend posted a link to this blog on Facebook. Our prayers go out to you. I don’t want to sound like a fanatic giving you false hope, and I realize that you have already had to overturn your diet to go GF for the celiac, but research is showing that going on a plant based diet is a very effective way to fight cancer. It is an overhaul to cut out all meat and dairy, but it can increase the body’s defenses against cancer eight-fold. Please look at the website by Dr. Gregor: NutritionFacts.org and search cancer. Also ForksoverKnives.com All my best to you!!

    1. She isnt eating anything currently so plant based is pretty much a mute point. Also I have watched the documentary…what I took away was those dietary changes could prevent cancer versus cure it. So as I am sure you can understand I don’t put a ton of stock into them…since if I did I would be accepting blame for her cancer. Sorry if this sounds harsh…but its something I felt I had to reply to. Thank you for the thgouths and prayers

  42. My prayers are with you and your family. Your decision could not have been easy but it’s clear it was made in the best interest of your daughter.

    God be with you all.

  43. My heart goes out to your family. Thank you for sharing Jennifer’s story. May God bless your family and be a comfort to you during this unimaginable time

  44. I am not really sure there are any words to say. I know I am heartbroken – I know that can only mean I don’t know how you, Tony, and all of the K and S family are. Please know that there are so many many people sending you their love and support. Some you know, some you don’t. All of us wish it was a different prognosis. All of us wanted JLK to beat DIPG. And with JLK’s help the doctors WILL BEAT IT. So many tears shed, but so many happy memories full of laughing, loving and living. Jennifer would want all of us to continue to do that, and sparkle, and dance in the glitter….

  45. Your blog is so eloquent, so heart-rendingly beautiful, and such an enduring monument to your incredible daughter and your family’s love. I hope you will continue to write, even if, at some point, your writing becomes just for you and, someday, JLK’s siblings. What a tribute to your Glitter Girl.

  46. I asked God if making Jennifer an Angel once she arrives in Heaven is His plan, because what else could it be???

    “Grace & Peace to you, from God the Father”

    Much <3 LOVE <3 to your family

  47. Like so many here, I’m simply speaking up to say that you and your family are in my prayers, and I am so sorry for the pain and suffering you are having to live through.

    I learned of your family through a friend, who’s part of your Facebook glitter squad, I’ve been reading for quite some time, but realized that if I were in your place, I would want to know that there are people reading, and caring, and crying, along with you.

  48. I can’t say a thing to help or ease the pain because the horror of what you are going through is beyond my understanding. All I have been doing is praying that the peace of God which surpasses understanding will fill your heart and mind.

  49. Thinking of you constantly. I have no words…just more thoughts your way. Adding my name to the long list of people who’d drop everything to to help you guys…if there is anything at all I can do…I am so very sorry, Libby. xoxoxo

  50. I’ve lived without the wonder of my little girl for too many years now, so I know that sentiment is little comfort. In the end, you will hold to the precious wonder of her, and you will know that not disease, nor pain, nor darkest dark that grief could throw at you will ever spoil the sweetness of her time. Hold fast to that love she has left in her wake. You will find it in the most amazing places.

  51. Dear Libby,
    Like many others I don’t know you personally, I’m a friend on Amanda Stanford”s and Rachel Andrade’s, but there isn’t a day goes by that I don’t think of you and your family. I too read your blog religiously and love to hear updates and see pics of your gorgeous family. It seemed almost pointless to leave a comment as there is nothing I could say that could lessen your pain. Just know that you have affected so many people with your blog, and I have come to care for your family just as much as mine, it has truly been eye opening to see Gilroy and the surrounding areas come together with the love and support for you. You and your family are in our every thought and prayer. Much love, Iona Cariglio

  52. hello. I first found out about your family tonight when Team Ella asked for prayer warriors. I started reading the blog from the beginning. I am reading about things you will miss. her going to prom, on a date, . all the things we parents dream of for our children. you can make these things happen and have your dreams. valentine’s day would be a fabulous day for a father daughter prom and dance(and if you could do it as a suprise). your husband would be so honored and you would have your dream. I feel sure you can manage a dance or two with your boys. JLK would probably think it is awesome to have other members of the family dress up and dance together. I also think that your JLK and your entire family have graduated. You all have graduated from the school of family love. You all have such a love for one another, and your children are a direct result of unconditional love!!! to me thats magna cum laude and a masters degree!!! thank you so much for sharing your family! you all are in my prayers

  53. This is so devastating. I thought she had more time with you. I wish I could give that to you and take away any suffering she’s going through. Please know I’m available to help out at any point with whatever you might need, even if it’s just messaging me your grocery list. Seriously. My heart goes out to you, Jennifer, Tony, Jonathan, Nicholas and baby Charlotte.

  54. I thank God that he choose you to be JLK’s mom and guide her on this journey. I am so thankful that there are amazing doctors and hospice to help with this. I am thankful that you have a large, loving support system to help you through this. I am thankful to you because you have helped me to appreciate the simple moments I have with my family.

  55. You are wonderful parents. Your love for your children is so apparent in the way you are making these choices at this point. You are doing the right thing with all your decisions about her care. We all are sending you love.

  56. Oh Libby…. I’m so sorry… My sobbing heart goes out to you and your beautiful and strong family.. You’re in my prayers.

  57. Love to you all. You are an inspiration to all of us everyday and a reminder to look at the people that we love with new eyes. My heart breaks for you, Libby.

  58. I don’t know you but I have read your blogs on my Facebook. You are beautiful parents and I really admire your strength and clarity. I send you prayers and energy. You will be in my thoughts……

  59. I just found out about your daughter and this blog from a mom’s group here in Los Angeles and though I don’t know you I wanted to tell you I have shared the YouTube video and I send you all the love and prayers I have. I am a mom of two daughters and I can not even begin to imagine what you are going through, but reading this I know you are all amazing and have incredible strength. I am in awe of all of you. I had tears streaming down my face as I read your words. I will keep you all in my heart, thoughts and prayers.

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