click

…click…click…click

You know that sound a roller coaster makes. This is the sound track to my life. . our lives. . right now.

Last night I was almost euphoric. I was pacing around after she ate. Waiting to see if she threw up. She went at that applesauce with such fervor. . such hope. I stopped her from eating too much. I left the room for 10 mins and when I came back she knew her body didn’t want any more.

Tony offered her more multiple times. But her body said no and we listened to her body.

We ate dinner together and talked. Tony commented how strange it was to be talking about burial and tumor donation over pasta with no tears. . . just normally.

I cannot explain how hard it is to see your child not eat. Day after day. To have all of the bones in her body sticking out. . jagged reminders of the monster inside.

And to see moments of her coming back.

See cancer doesn’t just steal your child once. They take them many times over. . .piece by piece.

. . I think we almost forget the girl she was just 3 months ago.

She has changed. Many times over.

And each loss of her we grieve.

Then last night we get a moment. Last night we kept her on the couch near us. we took turns going to her every 10-15 minutes. Once on Tonys turn her found her on the ground. .. sipping some water. With her trademark smirky goofy grin

He asked what she was doing.

She said going potty…

where??

“You know!”

A total JLK at 5 trademark phrase.

wow every day she has lived at age 6, we have know she was dying.

. .. oh and ps she totally didn’t pee anywhere!

Her Stanford neuro onc dr called. We had a good talk. I have really been waffling on asking for a feeding tube for her. But we discussed again the pros and cons and why we didn’t opt for it in the first place. And then I laughed with her. I mean a real laugh. My first in over a week. It drew Tony back into the room. .

maybe he missed that sound?

But thats how good last night was.

I went to bed with her and struggled to sleep. I was still on such a hopeful high. I keep trying to remind myself she is dying. That this is real. That even though she has these moments. . it wont be too much longer.

And everything changes so very fast.

We went from struggling to pee to incontinence.

quite literally. Overnight. But its not bothering her so thats a huge positive.

And then she threw up in bed.

It was so scary for both of us. Because my sweet fashionable girl tried so hard not to get it on her jammies or on me…. laying next to her . . .  kept her head facing up and choked on it.

click….click….click….

down we go. its seems so much faster and steeper when you were just at the top.

Today she has slept. Most of the day.

I have been waiting for Tuesday (today) hoping she can make it to today. And yesterday gave me so much reason to be hopeful again for a magical day.

See it snowed this morning.IMG_3769

Just for my girl. Thanks to some work on her Aunties part and generous donations from friends and strangers alike.

Thank you so very much!

The boys had a wonderful time while she slept. I got out there. And I practiced.

. .. being a mommy. . a real mommy to them without her. With the ache in my heart we played and smiled with our boys. I got “in the bathtub with my clothes on in. . . ” again.

Then she woke up. She still wasn’t dressed. After her throw up. And many accidents I offered a bath with me this morning and she took me up on it. I loved begin in the warmth of one of her favorite places. . . the water.

This morning the hospice dr came to visit. We ended it with a talk of how much longer. Given how JLK is doing it could be a few days to 2 weeks she is guessing. And what the end looks like now that she has so much tumor progression. I had “prepped” for what it looked like with just a pons tumor.

She also shared with us that many children wait to be alone to pass on. Same as Dr Partap said at Stanford.

I am trying to prepare for that possibility and to make it not a reality frankly.

She was feeling so awful. . She didn’t even want to see/know what the surprise outside was. I gave her clues and she guessed. But I don’t think she believed me. So I got her some to touch and feel. . .

Daddy got her jammies on and wrapped a towel around her. She asked that her brothers and baby sister stay outside. This little request made me so happy since she is pushing Jonathan away. . . protecting her first little brother more than anybody else.

Daddy held her. She touched the snow Even threw a snowball at me. And shared a bit of snow with her sister. We crossed something big off of her own “bucket list” today.

And Jonathan threw a snowball at her. A normal act. I got too mad at him. I will have to tell him I am sorry later. He would never mean to hurt her.

Then she was done. And we took her inside. And she slept. IMG_3771

It was hard for me. I wanted this to be so fun for her. I think all I can do is hope she had dreams of snow. . . where she moved and ran and played in it.

free.

 

68 Responses to “click”

  1. Oh. . .while I am so sad for all of you, right now I am so very happy that she got to “go to the snow”! Ever since I heard about the expected snowfall I have been praying that she be able to realize there was snow and that she was able to participate in some way and she did! I have no doubt that the dreams were of playing freely in the snow! Sending prayers, love and hugs. . .again!

  2. My heart breaks for you every single day, Libby! I wish there was anything I could do. I’m sending thoughts and prayers and I’m so glad you got those happy glimpses. You, my friend, are so brave and so courageous and if I tried, I could not adore you any more.

  3. Praying Jennifer had wonderful dreams of the snow, playing freely with no sickness or pain. I am praying constantly for Jennifer, for a complete healing of cancer, and of course, praying for you and your family, to be comforted and at peace during this difficult time. I haven’t met you, but I heard of your story through Lori, who is my sister. I have been trying to share to others as well, to my friends, my church, anyone who can keep her in their thoughts and prayers, and to spread the word on pediatric cancers, via your video. Sending my love, and praying constantly for your beautiful little girl to be rid of this horrible disease. <3

  4. Every day I send your Jennifer and her family prayers and love. Everyday. I will be doing that for a very, very long time.

  5. Praying for moments where you have your sweet Jennifer present with you… that you can savor those moments. Prayers for strength and peace.

  6. I think of Jennifer and all of you so very often. I can’t stop thinking of you guys. It is so nice to hear the sweet gestures she gives you. Sending you love, strength and prayer.

  7. Libby, we are thinking of you, Tony and your brave kids – and that amazing Scharrenberg family network, you are all doing such an amazing job with such a difficult burden. sending love and hugs from here and prayers for you all. xx

  8. You write these posts with so much detail and emotion
    I feel like I know you and your family. My heart
    Aches for all of you. No parent should ever have
    To watch their child die and no child should
    Ever have to endure such things. Thank you
    For sharing your little girl with us and may god
    Give you strength in the minutes, hours, days,
    Weeks, months, and years to come!! God bless
    You and your family.

  9. While I don’t know you, I’m sending you lots of love and hugs! I’ve been following your journey and my heart is breaking for you and your family. I’m so amazed that you’re able to live in the moment and write so freely…what a blessing your written words will be for you further down your path. Hang in there and please know that we are all keeping you in our thoughts.

  10. My prayers are with you and your family for strength and peace now and in the future. I’m new to your blog via ‘Emily Zimmerman – the Cancer warrior princess’. I have been shedding tears through your words. What a blessing your beautiful daughter is to you and you to her.

  11. My heart breaks for you. You’re so strong and amazing. Your daughter is beautiful and amazing and I am in awe of her sweet soul. There are a lot of us here, following your story, her story…..keep fighting.

  12. I don’t know you personally but my cousin is a very dear friend to you and I just wanted to let you know your family is my thoughts daily and that I’m praying for you xoxoxo Jennifer has touched my heart

  13. I don’t really have anything to say that even seems remotely helpful. I just hope it helps in the tiniest little bit to know that someone, a stranger, is loving your beautiful daughter and praying for her comfort and yours. Sending love from NH.

  14. You dont know me nor I, you. But I’ve been following your posts. And I still cant come up with words to express my feelings. I have a 3 year old daughter. I can’t even type this without crying at what you have been going through .. just thinking about it makes me sick. I hope for nothing more than peace now and even more than peace, whatever it is going to take, to get through the most difficult time coming. May your soul, your being with every fiber, be provided what is needed to give you strength. I’m sorry words cant comfort but I feel like I cant read these moments without saying something – even if they cant change anything. I’m so very sorry.

  15. What a special memory for her brothers and for you, I’m so sorry she didn’t get to play as much as you had planned… sending lots of love and prayers for peace from a random internet friend in Houston.

  16. A friend of mine, who has lived this like you are… like I have… shared this blog. It is heartbreaking that you have to go through this. Just keep on keepin’ on. I too have other children – two boys – and they will keep you grounded, even on days you don’t want them to. Sending much love, peace and strength. And most importantly, comfort for your beautiful daughter. I hope mine will be waiting for her when her time comes, and I know she will welcome her with open arms. xoxo

  17. Could you possibly ask “why” the kids wait until they’re alone to die? It is so mind-boggling to me. God bless your beautiful baby.

  18. I have been sharing this with others and we are lifting your little girl up in prayer. This is what my aunt posted:

    Wow, that is so sad. I can’t imagine the heartbreak. praying for God’s peace, comfort and strength. I have a friend in Houston who’s son, Austin, got aggressive brain cancer when he was 2. He survived!! He got very sick, it really looked like there was no hope. We prayed and anointed him with oil. He was in ICU on a ventilator and about 10 different drips. He got better over the next few days. They even stopped his chemo because they said his body couldn’t handle it and it would kill him. After that he just continued to get better. He has some deficits, and needs some special ed and has to wear special glasses. But he made it! Don’t give up praying. God uses these kinds of situations to show His power.”

    1. AMEN Erin!!!!! I whole heartedly believe GOD is our healer. My stepmother was healed from rheumatoid arthritis and my brother witnessed a blind woman See!!! I believe that Jennifer can also be healed. I will continue to pray for Jennifer and her family everyday.

  19. i dont know but since there is no chance for her to be recovered, i really hope she will got free soon. seeing this angel struggling is so heartbreaking.

  20. <<>> and tons of love, your the most amazing family!! Jennifer is so lucky to have such a loving family to see her dreams come true even as heartbroken as you must be. God Bless and I love all of you! <3 always with you Jennifer…

  21. I must be one of the few dads to post. I have a hard time imagining your struggles. I have a 5 and 6 year old. Sounds like you have done all you could for her physically, AND have given her all you could to bring joy to her. I hope you can realize that, and it brings you contentment. I hope afterwards you will not feel any guilt, but just remember your sweet little girl and TRUST in God. I think anger is normal. I think of our perspective must be like an ant in a forest and God’s is like a bird in the sky flying over.

  22. There is nothing as magical as snow, except for watching your child enjoy it. You are the most amazing parents and family. What wonderful aunties to make this happen. I know it has to be brutal to have your heart breaking every minute. I’ve experienced a little of that. Know you are making her days the very best they can be. You’ve crammed many years into so few months. Every moment does matter. So very sorry that i don’t have a single word that will possibly ease this pain. Know that you all are loved.

  23. Sending you all prayers for peace, comfort and strength when you need it most. Thank you for sharing your story so beautifully, so raw. While we don’t know you all personally, we continue pray for JLK every day. She’s captured our hearts!

  24. I worked with Tony several years ago. I think the last time we spoke was right after your oldest son was born. I just had to write and say how very sorry I am that this is happening to your beautiful family. I am literally beyond words…
    Please know that you are all in my heart and in my thoughts and in my prayers. Hugs and love to you and that beautiful, amazing little girl of yours.

  25. Prayers, love and gentle hugs for your little Angel Jennifer and your family. May God’s blessings shower on you and keep you strong and give you comfort.

  26. tears and prayers coming to you DAILY. you don’t know me, but your written words have invited me into your life; i am grateful. i woke up at 3:45 this morning and prayed for you. God has a plan…and part of His plan involves an amazing mother…YOU. thank you for sharing your beautiful Angel Jennifer. God Bless.

  27. I have a book that I read to Teagan almost every night called “I love you all the time”. The message to our kids is that no matter where we are, what we are doing – even when we are mad, we love them all the time. The last line as the child falls asleep says, “Even when you can’t see me, I love you all the time.” Jennifer knows you love her all the time as do your boys and Charlotte. And Jennifer loves you all right back. Even when it comes that you can’t see her, she will love you all the time as you will continue to love her. And while you cannot see all of us, we send our love to all of you for all time.

  28. Your family is in my thoughts. I am so very sorry for your JLK..you…your family. I cannot begin to imagine the horrible and tragic hell you are going through. Thank you for sharing your story with us. Your writing, though painful is beautiful. Thank you for helping me realize I should have more moments with my son to just enjoy life and not worry about chores. etc. My son is 6, he is our only child and cannot imagine anything happening to him. Your children are so very lucky to have such a beautiful soul as their mommy. As I type this, tears are streaming down my face. Sending love to JLK and you all, from a 32 yr old mom and wife from MA.

  29. Now I feel guilty because it snowed here all day and I didn’t want to go out to play in in because it was so cold and the snow suits take so long to get on… I will have to change that mindset.

    Jennifer is so beautiful. I am so sorry she can not eat. Tears.

  30. We don’t know eachother but I pray for strength for you and your family.
    I read your blog and some of the stuff you’re going through just breaks my heart. I too was faced with a child with a brain tumor, I’m so sorry for your pain. I still remember the ache and the strength I had to show to my sick little angel… I have a miracle and was able to keep my Angel. I can’t even imagine your pain, I’ll pray for you often that God holds you during your darkest hours and keeps your strength up for your other babies. God bless you and your family and little JLK.

  31. Thank you, again, for sharing. My heart hurts, but I smiled a few times while reading. Please continue to share with us. We will continue to pray for you all.

  32. Praying for you and family. I cannot imagine what you are going through. I ask every moment I think of your family for a miracle of healing and comfort for all of you. May the God of peace surround you with His very presence.

  33. I just came over from the Momastery site where your link was shared. Your daughter Jennifer is beautiful – I love the picture of you two together. You will always be together in some way. Love knows no bounds.
    Sending love and prayers to you all.

  34. The beauty of each moment and relishing them all even when they suck and when they fill you with love. You are all amazing! I send you and wrap you in love and prayer.

  35. My thoughts are with you and your sweet family. I’ve held my own children extra tight ever since I started following your blog. Peace, strength, and prayers.

  36. I anxiously wait for your posts in hopes I will see a good change everyday. It hurts me so much that children have to go through this and suffer so much. I am a Christian but I sometimes as myself is there really a hell or is hell on earth? We suffer from the first day we are on earth. We have to grow teeth, we have learn to walk and talk, we have to struggle with learning so many things its like a constant suffering. That is why I ask myself that question. I am so sorry Libby and Tony for all you are going through and there are so many of us praying for precious Jennifer and hoping for a miracle. I ask God to reveal himself and how things are possible through him in hopes that he will cure her completely to show us that we serve a loving and awesome God. I wish there were words that I could say to make you both feel better but I am lost for words to comfort you because I know there are no words. Just know that even though I dont know you and your family Jennifer and you have touched my life. You are such a strong and loving mother and I dont know that I could be as strong as you. May God give you all the strength and comfort each and everyday that you need to make it through from one day to the next. Sending you love and hugs and prayers to you and your sweet Jennifer and the rest of your family.

  37. Libby, always thinking of you and here if you need me. And a little of my own experience…my son in his last day was hanging on and hanging on…it was like he thought he couldn’t go because we were so sad or something. But I could tell by that point that he was ready…that he wanted to let go and be free of the struggle. I had been told that sometimes they wait until they are alone to go. I laid beside him in bed, smelling his sweet little boy smell, and whispered to him that it was ok to go. And that moment was when he breathed his last breath. The doctors would say that he was unconscious, that he didn’t know I was there, or hear me. But I know he waited until I was with him, that close. So sometimes, I think the opposite is true.
    So many hugs and so much love going out to you.

    1. All of you Mama’s are so very strong. I weep for these experiences you have shared and thank you at the same time, see it wakes us (parents) up to live in the moment with our children and appreciate the now. I think children, especially children who bravely face these moments help guide parents to a place where they can continue to press on. I think of Jennifer’s Mama every night and every morning and send her love and light. Thank you. The words are your child’s legacy to remember the simple and precious things life gives us.

  38. As much as I have grown to know and love your family through your beautiful, painful, funny, heart wrenching words, it is your photos that completely undo me. I, too, have a daughter who “grew not under my heart but in it.” When she was Jennifer’s age, she was also a glitter girl with personality galore. She also had a stuffed bear named Pinkie that was with her always. And as I gaze on JLK’s unbearably sweet face, sleeping here so peaceful and loved, I know that I cannot stop praying to the One “who is able to do immeasurably more than ALL we ask and imagine,” ……. Please, please, please …….. I understand that sometimes God says “no,” and it is a mystery to us, but He also says we have not because we ask not. I lay my hand on your head, Jennifer, and I ask.

  39. Dear little Jennifer,

    a BIG HUG!!!…a big one with lots of love and strength!!!… so much love like all the way to the moon, the sun, and all the stars AND back…(that’s what I always tell my little daughter you know)…this hug is for you AND your family!!! <3 <3 <3

    Yours,
    Miriam

  40. have faith in believing that when the time comes that our merciful and dearest Lord welcomes the children into His arms…I am so sorry, this is just so tragic…

  41. My heart continues to break for you and your family. I think it’s amazing that you are all able to spend this time together. I guess my one piece of unsolicited advice would be to live in the moment. Do things you feel you have to do to not look back on this time with any regrets. Also, you don’t have to explain your choices to anyone, no one knows what they would do in this situation. I will pray for your little girl, and pray that you’ll be present when she decides to take her last breath. Thinking of you often.

  42. I am praying for your entire family to find strength. I can’t imagine what you are going through. Sending lots of love to JLK.. I am so glad she got to see the snow!

  43. My heart is aching for you. I just went through the final stages of cancer with my mother in August of 2013 and can relate to the physical aspect. But for this to be your child, a child a year older than mine….I am praying and crying and praying more and more for you and your family. I am praying for your sweet daughter. It is not fair. These days with her will be priceless times and I am so glad she is giving you some good lucid moments. Hang on to those. God Bless you all.

  44. Libby and Tony
    We know that words aren’t meaning a lot to you right now, but just know that you and all the family are in our hearts and prayers all the time.

  45. Libby: Each time I read the blog I just cry for Jennifer and your family. The grieving process began when she received a diagnosis and it’s important to have a plan as things seem to be happening faster than expected.
    You said you heard that children sometimes go off by themselves to die. That breaks my heart because I know you want to hold her, calm her and give her reassurance of your love. I pray she will allow you to do that.
    I heard of a good book called “Drawing Angels Near” and I couldn’t find who it was written by but she has researched children’s visions of angels which started with her daughter drawing a picture of “Sophia” her angel, which is the cover picture of this book. Her research talked about an unexplained strong, sweet scent when angels are around us and how angels are a gift to us so that we are not alone. She has researched children’s interactions with angels and has written several more books. It might be something you could read to Jennifer.
    I believe angels are surrounding Jennifer and they will appear in a way to help her recognize them (so expect alot of glitter). They are around us to remind us of God’s glory and awesome love for us and overflow with God’s light of love.
    I pray that angels are surrounding Jennifer, you and your family and giving you all some comfort. I hope she’s dreaming of angels while she sleeps.
    God bless you and your family.

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