One of my favorite parts of the last few days is reading books with her. I wish I had realized sooner how much she would still enjoy them. I read til my throat hurts or she motions to be done.

DSC_0603Tonight we read together with Daddy. But we used picture albums I had made for us over the years. It was fun. .. .and very very sad.

One picture caught me off guard. The one we take their first month of life and every year after. .

……in Daddy’s favorite Chargers jersey.

This year was her last to wear it. She was our first to start this tradition and she is already done. Her last one the day we learned the horrific combination of 4 letters . .DIPG



Her Stanford drs came for a visit today. To give you an idea they drove over an hour on their weekend. . . to see her . . and us. I have always been confident they are good physicians, but this is just another example that they are good people. It helped all of us to see them. They promised me early on they wouldn’t leave me. . and they have held true to that promise. I am so grateful.

Tony and I talked last night that we are going to whole heartedly concentrate on her comfort. Her drs gave us good advice on her back pain and the location of her tumors in her spine and what positions would be best. Tony got to build a board to keep her comfortable. Already we can tell its making it better for her.

I think it was also helpful for Tony to have a physical job to do that could ease some of her pain.

I asked if they had a guess on how much longer. . . it is of course always just a guess. . but

….this week…

We are doing around the clock morphine now to control the pain and opting not to do any more of the steroid. The steroids job is to take down some of the pressure in her little brain. But the only merciful thing in this death is that swelling can cause her to sleep.

When she is aware . . even when she doesn’t look aware . . she is totally aware.

So it is a little gift we can give her to allow her to sleep and not be totally aware of what is happening to her little body.

She spoke today. “what does that say”

Its been so long. I miss her little voice. And its forever gone. I thought maybe she was unable to speak. But thats not it . . she has lost the ability to form words correctly. Its a warbled, slow, deep slurred speech. She knew it before the words started coming out that way, so she just stopped doing it awhile ago.

Something she can control? or just a typical 6yr old self conscience girl? or…please let it not be

…it scares her?

I just had to step away from journaling to go the baby. . who is sick. All 3 other kids are sick.


But I can’t complain.  . because I have learned it can always be worse. I am lucky to have these 4 children, ill in very different ways. . in my life.

And I have Charlotte here because Jennifer asks for her. When I was pregnant I so wanted it to be another girl. I wanted DSC_0055Jennifer to have a sister. Somebody to lean on….and help through struggles….a best friend.

And I realized watching how Charlotte gives her what she needs daily…she is getting all those things. Although so blunted its the relationship I yearned for for Jennifer.




I love them all. So unique in their own little ways. and independent . The greatest big sister.

Jonathan..devoted and loving. The best smootcher.

Nicholas…strong and protective. The perfect laugh.

Charlotte…innocent and trusting. Simply joyful.



Perfect little family.

DSC_0328 K-2013-05-26-34 K-2013-05-26-22




105 Responses to “perfect”

  1. Wonderful that the doctors were able to come and see you all. To have her warriors come give you sustenance and support … what a terrific team!

    Praying for peace for you all.

  2. You have an incredible family. Please know that you have inspired so many of us to take action, in Jennifer’s name. We will make sure that she is never forgotten.

    How wonderful of her doctors to visit you. Jennifer touched their hearts.

    I know you want to have her with you forever and my heart breaks that she won’t be. She sounds like such a fighter. Do you think she might be waiting for your permission to let go and be at peace?

    My heart breaks for all of you.

  3. What a gift to be able to read to her and let both of your imaginations take flight for a short amount of time. I know those brief moments bring you both joy and she loves you so much for sharing these moments wig her. Sending you love, strength and prayers to cherish every moment with your beautiful girl.

  4. Oh Libby. Your children and your family are, indeed, such perfect gifts. Thank you so much for sharing them a little with us. Thank you for your beautiful, words which inspire us all to join you in this fight. We are and will continue to be by your side.

  5. My heart aches. Thank you for sharing her with us. May you be filled with each other in spirit and bond in every way possible for every moment that she’s with you.

  6. I don’t know if you’ve heard this poem before, but missionary friends just lost their 17 month old and shared this poem. I thought it might mean something for you, too, so thought I would share it.

    A Child Of Mine (To All Parents)
    Edgar Guest

    I will lend you, for a little time,
    A child of mine, He said.
    For you to love the 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 charms to gladden you,
    And should his stay be brief.
    You’ll have his lovely memories,
    As solace for your grief.
    I cannot 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 for 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 labour 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 Thy child shall bring,
    The risk of grief we’ll run.
    We’ll shelter him with tenderness,
    We’ll 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.

  7. Sending prayers Libby. We are praying for precious Jennifer. Lord be with her. We are praying for comfort and strength.

  8. So much love for you Libby. You continue to be so brave and honest… I wish I could shoulder some, even just a tiny tiny part, of your burden for you. In the absence of that, just know I have you, JLK, and your family in my thoughts and prayers constantly.

  9. Lord I pray for healing of JLK. I know you r the true healer. Please Lord bring healing and comfort to JLK and her family. Take the tumors away as if they never existed. I belive that u have the power to heal and make anew. Whatever your will is Lord please bring light onto this family Lord. In Jesus name.Amen.

  10. I pray for peace and comfort for Jennifer. And comfort for you and the boys. I can barely let my mind wander to a place of how it would feel to be you. I cry for your pain and pray for your strength.

  11. What you are going through is beyond comprehension. Children should never be this sick or ever in this kind of pain, but they are. It is good and kind the Dr.’s gave you the support of a visit. Jennifer is so special and that is evident to everyone who reads about her, sees her photos and knows her. We are another family who wishes none of this was happening, but offers all our prayers for your beautiful daughter.

  12. Sending so much love and light to your entire family, Libby. Jennifer has touched so many lives, and while it’s unfortunate that so many have to know her name for this cause, I truly believe she will make an impact on those horrible four letters tearing apart another family.

    How I wish it didn’t have to be her to impact that change, as I know that will never replace what you’re feeling now.

    Prayers of peace, tranquility, and love to envelope your home during this time.

  13. I have no words. Just love and strength for the whole family. Jennifer has the best family. You’re all perfect for each other.

  14. I am with you in your time of sorrow and moments of joy! I will pray for another week for Jennifer up feel the love and warmth of her family.

  15. I found this poem some time ago. I keep thinking of it as I read your journal.

    Do not stand at my grave and weep.
    I am not there, I do not sleep.
    I am a thousand winds that blow
    I am the diamond glints on snow
    I am the sunlight on ripened grain
    I am the gentle autumn rain
    When you awaken in the morning’s hush
    I am the swift uplifting rush
    Of quiet birds in circled flight
    I am the soft stars that shine at night
    Do not stand at my grave and cry
    I am not here, I did not die
    – Mary Elizabeth Frye

  16. Dear Jesus, please heal Jennifer. Yes, we pray that your will be done, but Lord, please let it be your will that these tumors and every single cancer cell be gone. We trust you, Jesus, but we are scared and sad and heartbroken. Please bless this family with your presence and peace. Amen

  17. I’m sorry, nothing more to say than that. I went to Mass today and prayed for your daughter, and your family. She knows how much you love her and she knows how hard all of this is for you. They just “know”.

  18. I dont know what to say but thank you for sharing your beautiful Angel with us..I feel your pain through your blogs and I cry with you..I pray for you and your family every day, much love and big hugs..and please hug Jennifer extra tight for me.

  19. My heart is so heavy for you. I really have no words. I feel honored that you chose to so generously and eloquently share Jennifer with us. Thank you. Sending you love, light, and peace.

  20. Libby – you once said something about being afraid/worried about people floating away with time. Let that worry go – we are not leaving. We are not letting go. We are not floating away. We will be here to continue to support you and Tony and the kids. That is where I see God’s love in a time of such pain. Your support system will still be there. I wish I could give you some relief for just on day – just one hour. But I understand the desire to not leave her side because what if you miss something. So just know that while you and Tony hold your daughter, we all do our best to hold you and your boys and baby. We all are here to support you, no matter the day, no matter the reason – we support you. Love from me and my family to all connected to the Kranz family.

  21. The poem from Rachel is wonderful! I have heard it many times and it always makes me stop and think. . .

    Our family has had some experience with Stanford’s physicians and support staff. No, we’ve never been through anything close to what you are going through. I am not surprised though that they came to support you today–they are just awesome and caring people as well as the best of the best at what they do.

    Praying for peace for Jennifer, an end to her pain and suffering and acceptance in knowing that you have done everything you possibly could to make her life the best in every way. Also praying for Jonathan, Nicholas and Charlotte and that they will always remember how much their sister loved them and how much they gave to her as well.

  22. I wish I had words that would bring you any amount of peace right now, but since I know that isn’t possible, please believe that my heart and mind are completely and entirely there with your beautiful family tonight, and if it were possible to give hugs from afar, mine would be wrapped around all of you. I don’t know you, but from your writing alone, I feel like I do, and the unfathomable pain I hear through your words has reached me in such a profound way. A friend shared one of your blogs on friday night and from 10pm, until 4:30am I read every one of them, from the first until the most recent, witnessing this roller coaster of the scariest parts of a person’s life that has been your reality for these last few months, and my heart just breaking for what your family is going through. Having a young daughter of my own I just can’t even begin to wrap my mind around it, its just not possible, its not. I keep having to remind myself that it has been just over 3 months, because with everything that’s gone on it seems like so much longer. Thank you for your brutal honesty and your sharing your entire heart, without hesitation, during your most vulnerable and terrifying time, it takes a certain amount of bravery, not feasible by most people, to give/share that with not just family & friends, but complete strangers. Sending all of my love to you 6, and all of your extended family and friends, tonight. ******Hugging you.******

  23. God bless you as you struggle this week, because I, who don’t even know you, am struggling. I pray that this week brings some comfort in knowing what a great mother you are. Comfort for Jennifer and peace. No suffering or pain, and help of understanding for all of us.

  24. I so wish that I could offer words of comfort and reassurance. I wish I could hug you all and soak in some of your pain in hopes of bearing your burden. I wish God would heal your sweet girl. We do not know each other but I wish we did. I do not know the pain you feel but I do know this is not the end. This is only “until we meet again”. Jennifer will be in the arms of Jesus and eternally at peace and living in joy. As I sit tonight reading scripture for a women’s group I am a member of, I came across this one and want to share it with you. “28 Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” Matthew 11:28-30. I am praying for your family. I am praying that Jennifer’s passing is peaceful and painless. I am praying for God’s mercy, wisdom, and peace to be with you all. I am so very sorry for the sadness you are feeling and this terrible situation you are all in. May the joy of The Lord be with you, even in midst of your sorrow.

  25. I can only hope that you, Tony, and ALL of your children can feel the love we are all sending you. The doctors haven’t left you, and we won’t either. Today, tomorrow, and…always, we are here. Sending you all love, light and peace.

  26. I am so sorry….I think of you, your family, Jennifer..every day! You have touched soooo many people by sharing your story. For me, it has been two things: 1. Teaching me so much more about DIPG and pediatric cancer. You have made me aware of a problem I didn’t realize was so big
    2. You have made myself, and everyone else who reads this blog, a better person. The grace, dignity, and positive attitude that radiates from you, even in the hardest times, is AMAZING. You are a wonderful person and have made all of us better people!

  27. I may not know you but I love you. We continue to pray for the acceptance of God’s will. His faith will give you the strength to do the next best thing and just breath. Life is a gift, death is a wonderful journey in the arms of God.

  28. Dear Libby,
    when I write this on the other side of the world I hope you are sleeping and that Jennifer can sleep a little too. I read your whole blog at once, only yesterday, because of what you wrote about switching the TV channel. I am, I was like that too. I won’t turn to another page anymore. But it is very heavy on a mother’s heart (like mine too) and I don’t deny that I cried while reading most of it…and every time I read the date of the post just try to imagine what I did back then… it hit me so hard that things can change and are changing in life so fast, in your life and in the life of your little ones. I want to tell you that you are an amazing mother to all of your children, an amazing wife to your husband and that even without knowing you or your family I wish I could do anything to take away from your pain. We can not even imagine the pain you are going through. You are in my thoughts all the time….you put important things into words in such a beautiful and honest way that sometimes it feels like the thoughts would be mine. You put a lot of things into perspective for all of us, thank you for that. Please just hug Jennifer tight as you did until now. You will have the strengths when you need it and your family with you all the time. Jennifer will stay forever in our hearts! God bless you all!

  29. Jennifer has changed my life forever. Thank you, sweet girl. I promise I will make a difference in childhood cancer. I don’t know how yet, but I am on a mission. I love you.

  30. Your sweet girl comes in and out of my thoughts everyday. I hope you know how many people are praying for Jennifer and your family. A whole community is silently supporting you. Your child is our child. Your tears are our tears. Your aching heart is our aching heart. We continue to pray…

  31. There are no words I feel I can say. I just wanted you to know that I’m not leaving you during this fight or after Jennifer’s fight is over. Sending love and feelings of peace.

  32. Writing this all the way from New Zealand.
    Please know that your story has touched people from all over the world.
    Love and blessings to Jennifer and you all xx

  33. This should not be happening…..Words fail me, as I do not want to intrude on what is your sacred time with Jennifer, I add my love, prayers and support to the heart hug that is enfolding your family.

  34. Your story has touched me forever. Thank you for sharing your amazing child with us. I will keep you all in my prayers and I wish you all peace and comfort.

  35. I wake up thinking of you guys every morning then get on the computer to check your blog.
    I pray for you all.
    Libby, you are doing a great job, you are a great mom!
    Thank you for sharing your raw emotions and experience.
    Praying for strength to get your through this week.

  36. I’m so glad you found the gift of reading to share in these final days. I’m praying for peace and comfort for Jennifer and for your family during these incredibly hard days.

  37. I don’t know what to say. My heart is breaking for you, Jennifer, and your family. I’m so sorry Libby. I will pray for you, and I will pray that someday you can makes some sort of sense of all this. I pray for her comfort and for all of your breaking hearts. God bless you.

  38. Continually praying for peace and comfort for your entire family. Thank you for sharing and for being so open. My heart aches for you. Wishing you all much love during this difficult time.

  39. I’m so so sorry for what you’re family is going through. I do not know you personally but I know several people that are close to you, and know that they always say what amazing parents you are and how much you are fighting for Jennifer. I pray that Jennifer has no pain everyday and I pray for all of you to be strong. Know that because of your words, I hug my kids a little tighter, Kiss them a little longer and take a deep breath for them. God Bless you and your family and my prayers are with you everyday.

  40. Libby, To say my heart breaks for you and your family would be an understatement. I pray everyday for all of you. Today, I opened the St Jude’s envelope that just came in the mail. Something I have never done. I know it seems like a small thing but I would guess that there are hundreds/thousands like me out there. Those who Jennifer has touched deeply, through you. Those of us who will be forever changed having known her through your writing, wishing we knew her in person. Those of us who will now and forever fight at whatever level we can for support and funding for childhood cancer. With love and prayers

  41. I found your blog through a friend of a friend. Jennifer’s sweet face and energy pop off the screen and you can tell she is one special person. My heart is breaking for you guys – I wish there was something to give your family comfort but I imagine the only comfort you get is giving your sweet Jennifer some comfort. Sending you love and strength as there are no words that can carry away your pain.

  42. Sending lots of love and support to you and your family! I have been following your blog for the last couple of months and am so deeply touched by your words and your journey. As a parent, I cannot begin to fathom what you are going through, but I pray for you and your family each night to find comfort and strength in each other. I pray for Jennifer and for her siblings. You have made me (and countless others) more aware of childhood cancer and inspired us to push for more research and answers. You are an astounding woman (and courageous mother) and I thank you for writing these words and spreading awareness. You have a beautiful family and we are all wishing you the very best and lots of love!

  43. I’m not eloquent, but totally agree with all the above posts!!

    Praying for peace & comfort for all of you ♥♥♥

    I wish to God that I was in Cali so I could physically help. Your writing, Libby, makes me feel like I know your family.

    Thank you, as i usually say, for sharing you r baby with us. I know this will sound weird, and I hope it doesn’t bother or worry you, but I have put some of your pictures of Jennifer on my cell phone ♥ She & you have affected me in some unimaginable way & God is touching my heart & changing me for the better because of your sweet glitter girl ♥♥♥

    #Love4JLK always

  44. I don’t know you, or your family. I know your story, your love and your dedication. You are amazing, Jennifer is so lucky to have you. Godspeed! Sending all my love and support!

  45. I don’t know what to say but my heart breaks for you and your family. Thank you so much for sharing these moments with us. We will keep you all in our prayers and thoughts.<3

  46. Dear Libby,

    As everyone has said on here before, no words can express how deeply sorry I am for you and your family. My heart is breaking for all of you. As a mother of a 5 year old little girl, I truly can’t imagine what you are going through-and I pray to God that I never have to. But if I ever do, I pray that I will have the same grace and strength that you show. I know that cancer does not discrimintate- so I will continue to fight and spread awareness for your beautiful Jennifer, for all the kids who have passed and the ones who are yet to be diagnosed. As one cancer Mother said “I wasn’t a cancer Mom either until my child was diagnosed.” Hold onto your beautiful little girl tightly for as long as you can, I know she feels the amazing love. I’m praying for comfort for your family and for Jennifer in her final days in this life. Sending light, love and peace your way. God Bless.

  47. I am so heartened that you have re-discovered books with Jennifer, and sharing beautiful images and memories as a way to provide comfort and a continued rich connection with her. I hope and pray that these small but important blessings continue throughout the days and hours to come.

  48. I heard about you through my Las Madres 2008 group, and have been reading along the last couple weeks. I am so sorry you all are going through something so completely awful. 🙁 My first child is also a Kindergartener and a girl, and I have a 3 year old boy and a baby girl too. I’m touched by how you write about your perfect family with 2 girls and 2 boys, about how you are glad that Jennifer got a sister when Charlotte was born, etc. I feel the same way about my family and can’t imagine it being torn apart in such a way. 🙁 I am just so, so, sorry. I hope Charlotte will be able to have a sister-like relationship with one or both of her brothers as she grows. Thinking about your sweet Jennifer.

  49. Sending your family unending support, love, and prayers. Snuggle her, read, breath her in, memorize each detail of her. I am in awe of your strength and your ability to know what your daughter needs each step of the way. I pray that she is free from fear, comfortable, and feels surrounded by so so much love this week. This is the unimaginable.

  50. My heart id breaking for all of you, especially Jennifer. No child should have such a bright future that is taken from them. You will have your memories of her and I wish nothing but a peaceful passing. God Bless all of you.

  51. Thank you again for sharing. You and your children and Tony are in my thoughts and my heart. I am so sorry and wish you love and peace.

  52. I hope this week is not the week… If it is I hope it goes slowly… God why? Why doesn’t she get more time? Why is this happening? I think we are all asking that right now.

  53. My heart is with you and your family, Libby. Prayers go out to you for strength in the days ahead for you and Tony and for peace and comfort for Jennifer.

  54. I am so touched by your family and your strength to write daily. You family has stolen a piece of my heart.I lost my father to cancer recently…I understand how hard it is and how ugly cancer can be 🙁 Your children are gorgeous and you have got to be the strongest Mother on earth. My prayers are with you <3

  55. I don’t know you but feel like I do as I’ve watched your journey with Jennifer unfold over the last few months through the power of social media. My thoughts and prayers are with you all and please know your story is impacting so many of us into love, action, and faith.

  56. I have been following since Yvonne put together
    The fundraiser. As a mother , I can not imagine the
    Pain you are going through. I will pray for
    Peace in these very struggling times. You have
    A beautiful family. I am praying for you .

  57. I don’t know you but feel so close to you all… I wake up in the morning and wait to read your blog… Ur words are always so beautiful and I admire the strength in you to be able to share with the world… Jennifer is a very special little girl and has definitely impacted my life… I promise to join you and fight in Jennifer’s name….I feel like I continue to repeat myself but all I can say is my heart grows heavier each day and I wish I could take some of this pain away from you all…. Praying everyday for you all

  58. As with everyone who is following your blog, I think about and pray for Jennifer, your family and your Drs. all day long. You will never know how many hearts you have awoken with your words. I see Jennifer streaking across the sky as a glittering rainbow of a warrior — strong and funny, fiercely protective of her earthly family, peaceful and pain free. Wrapping your family in love and prayers.

  59. You were so blessed to have those doctors who were so kind and sincere, the kind of human beings that truly should be doctors. It has to be hard for them too. I bet they cry a lot that they can not spare your little angel, Jennifer. They know a lot. My experience is their estimates are very close. Say every thing you want to say to Jennifer. She understands and hears every word. If you want to, make an agreement that she can send you messages in certain special ways, and believe me, she will. Even death can not break the bonds of love and connection between you and she. I send you love today and always.

  60. I wish somehow you could freeze every moment you have with her and it would last an eternity. Kevin and I read your posts and cry with you. Your family is not only a blessing to one another, but to us.

    When my mom passed away, some of her last words to me was that she had angels with her. There were angels with her while she was still on this earth in those last days. I became fascinated with angels after that and read many accounts of them. I am a believer. I know there are angels watching over you and your beloved JLK and bringing her comfort during this time. I wish this wasn’t happening so soon, let alone at all. I just wish somehow I could adequately convey how much love we are sending you from Texas. I can never find the right words to say but we love you and wish we could take this away.

    -Liz K

  61. Like Terri, I have kept pictures. I don’t ever want to forget. My favorite is of you holding her. I want to remember your love.

  62. I pray for your family, that the days slow down so you can have a few more, a few more hours, a few more minutes with your princess and I pray that she is not suffering and that when she goes, she goes in peace surrounded by you all. You may think she is your angel but really, you are all her angels because you do waht you can to protect her in this time and make sure that she is not in pain. I admire your strength and your husband’s. Your family will forever be in my thoughts and prayers.

  63. I feel for Jennifer, you and your family. It is just unbelievable that something like this has to exist. I have prayed and continue to pray that God would miraculously heal Jennifer. I have also prayed that you would all lean on Him for strength and comfort. May God bless you and your family.

  64. I am keeping Jennifer and your whole family in my prayers. One thing that I include in my prayers every day is thankfulness that you are the mother of Jennifer and her siblings. I just know in my soul that you are the perfect mother to beautiful Jennifer and her siblings, that no one else could possibly be right for this job that you face. It is obvious that they are every bit as lucky to have you as you are to have them. I will continue to pray for peace and comfort for your sweet girl and your whole family.

  65. You don’t know me, I have been reading your blog. I am thinking of you and your family during this difficult time. I am so sorry that you have to go through this. I told my young daughter about your daughter. She thought if she went to a fundraiser like the one this weekend, everything would be better. They could play together and then the drs would give her medicine and voila, better?! I told her, that’s what we all want. Praying for your family and your sweet sweet girl.

  66. Wish I had words to say but I am sad and I am hurting for you and for your family. I often ask myself why does God take the good and leave the hateful and evil here on earth. I hav eno clue but my heart goes out to you. Jennifer is a special young lady that has impacted so many people. Today I wrote a message to President Barac Obama and I gave him the website to go to so he could hear your plea. I have no clue if he will read it or not but I can tell you that will not be the only message I leave. I am ready to help bring this terrible childhood cancer to the light of day because no on really knows about it. I know the doctors said this week but all I am hoping this week is for a miracle and I will keep praying for that for you and your sweet Jennifer. God Bless you and your family.

  67. A Facebook friend shared the link to your blog. I have read every word and cried many tears. Tears for your family and tears for myself for the times I am short tempered with my own (10 year old) daughter. You, your family and JLK are in my prayers and thoughts…now…every hour. Bless you.

  68. I pray for little JLK as she makes her way to heaven…I’m always nervous to follows blogs, but I just read all of it and I’m crushed, saddened, & grateful. Grateful for what I have at home with my beautiful children. I spent the majority of day nagging about something (not picking up toys, or incorrectly writing a letter or spilling a drink, etc). Wow, all while you are grieving over a child.

    Really put me in check. Thank you for sharing JLK with us.

    Bless you & your little angel!

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