Some girls are just born with glitter in their veins

JLK- Our Jennifer

JLK was diagnosed with DIPG on her 6th birthday.  Click here to find out more about DIPG.  Keeping reading to find out more about our little girl.

Jennifer Lynn Kranz was born on October 28, 2007 at 4:38pm.  She weighed 7lb 8oz and was 19.5 inches long.  It was a long road to find her filled with miscarriages, IVF and failed adoptions. But I was the first to hold her and got to cut the cord. As Jennifer says, “It was the day we went from being Tony and Libby to Mommy and Daddy.” She is our dream come true and the greatest gift we have ever been given.  Also, the 16th grandchild of Bill and Mary Scharrenberg, lovingly nicknamed ‘Baby Jennifer’

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“I didn’t give her the gift of life, rather life gave me the gift of her.”

From the beginning JLK seemed to have “gut issues”. After exhausting all the less invasive options at a little over two she had a colonoscopy and endoscopy and was diagnosed with celiac disease. Simply put it’s an autoimmune disease that means she cannot consume any gluten. We saw immediate improvement, she gained weight and shot up nearly 1.5 inches. Although she took to being gluten free like a champ, she did struggle with not getting to have the same birthday cake as the other kids.  I struggled too as it was a whole lifestyle overhaul, even down to shampoo (our girl is a bit of a hair chewer!). If I am being honest I complained a lot more than she ever didshe just accepted it and lived it.

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To write about who Jennifer is I have to include her 3 younger siblings. I think God knew I wouldn’t be able to raise all these kids without some help so he gave us Jennifer first.  Jonathan, age 4 and JLK share a room and are the best of friends, I love the sound of them giggling and talking at bedtime. When Jonathan gets hurt he often runs to “sissy” while knocking Dad and I aside. Nicholas is 2,  we call him “Bubbas” a nickname coined by Jennifer.  He is one tough cookie and adores his big sister so you better not mess with her when he is around.  And 5 months ago her little sister joined our family. When Charlotte was born JLK came running up to my bed and asked,  “Is it a girl mommy? Is this my sister? Is it Charlotte?” She wanted a sister so badly and I was so happy we got to give that to her and give her to Charlotte.

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Although the odds are not in her favor, she is a little girl born to be a mother and I hope with every ounce of my being she gets that opportunity.

Blowing out her candles on her 6th birthday.

Blowing out her candles on her 6th birthday.

***updated April 7th 2014***

JLK will not be getting that opportunity. After 7 weeks of radiation (I blogged throughout it..you can read to know what it was really like) treatment her first MRI was scheduled. It was supposed to be a new baseline… telling us what size the tumor was now. Stable was good enough, the hope was it shrunk.

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The good news is it did shrink.. The devastating news was that it didn’t matter...her cancer had spreadto her frontal lobe and down her spine. We went from looking into a clinical trial to admitting her to in home hospice care. I also blogged throughout this time period.

She was unable to eat or drink without vomiting. She wanted to eat, but couldn’t keep it down. She lost her ability to speak and to walk. We had to give our just turned 6 yr old daughter morphine and methadone to keep her pain tolerable. We had to give multiple suppositories daily to control the vomiting and keep the seizures at bay.

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Jennifer was slowly dying.  Seizures broke through the medications and she lost the ability to control anything but her beautiful brown eyesthey were always so full of love and trust.. cancer never stole that part of her.

The entire time, up until her heart stopped beating, she was fully aware of what was happening… how her body was failing her. I laid with her the entire 36 hours before her death. That was the most beautiful and grueling hours I have ever and I hope will ever experience.

She took her last breath in my arms February 12th. A mere 3.5 months after diagnosis.

A few hours later I told her little brothers that sissy’s body stopped working..

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Now we are attempting to survive as a family of 5 while spreading the word about pediatric cancer. I am still blogging our story daily and sharing the information I am quickly learning. I had no idea the grim reality ..lack and inequality of funding with childhood cancer.

Jennifer was born with glitter in her veinsand knowledge is like glitterand once we know better we can do better.

JLK Glitter Shoot

33 Responses to “JLK- Our Jennifer”

  1. Jen says:

    We are praying for your family. Your little girl is a very bright light.

  2. Patricia amstutz says:

    My thoughts and prayers are with you all….

  3. John Rhodes says:

    My thoughts and prayers go out to Jennifer and all of your family. May God give her and all of you the strength to fight this and get through this.

  4. Patti Jakel says:

    I have just learned about you and your family Jennifer and I am pleased to “meet” you, on Caringbridge, and yet heartbroken because it is because of DIPG. Please know that I will keep you in my heart and in my prayers during this battle. With Love, Patti

  5. Jill Mason says:

    Am thinking about you all during this heart-wrenching time.

  6. Stephanie T. says:

    Lots of love and prayers are headed your way!! We’re all praying for you!!

  7. Analeise guild says:

    Hello, I found out about your little girl from a friend of mine on Facebook. I live in gilroy also and adopted a little girl who is 4 with many medical conditions. We spend countless nights at Packard, it has become a home away from home. I also have 2 boys and 2 girls. My youngest girl is 6 months old. Please feel free to contact me at any time for help or support. I am a stay t home mom so I am always around. Take care!!

  8. mary aron says:

    Libby. When I think of you, I think fighter, loving mother, faithful to God. I pray for you and your sweet girl. Xoxo
    Mary

  9. Geoff and Deb Ortolan says:

    Deb and I are praying for you guys and hoping for a miracle we know the angles were watching over Debs mom and they are watching over you guys too please let us know if there is anything we can do to help.

  10. Juan Perez says:

    Tony,

    My families thoughts and prayers are with you and your family. Jennifer seems like a wonderful little girl with lots of love in her heart.

  11. Brittany Gomez says:

    We heard of your family through a mother group in Morgan Hill. Our thoughts are prayers are with you guys and that beautiful little girl. God works for all things good and your daughter is inspiring so many with her story. Stay strong. God bless you guys.

  12. Sue Fouche says:

    My sister, LuAnn, and I are praying for Jennifer and your family. we have made a prayer donation to Saint Lawrence Seminary. God Bless and keep you.
    Sue Fouche and LuAnn Nealon Psalm 91:11

  13. Annie & Steve Kellenberger says:

    Libby,
    We are praying for you and your family. God has a way of working miracle.

  14. Melanie says:

    I saw your story through a friend on Facebook. I couldn’t stop reading about your beautiful daughter & family. As a mom, I wish I had the words to express how much my heart goes out to you. I admire you so much. Your daughter is so lucky to have you. Your words also remind me to appreciate every moment, so thank you for that.

  15. Matt Jefferson says:

    I wish your family the best of luck.
    I’m just glad I got to meet you, even if it was only for a brief time on a plane.

    By the way Jonathan, I think you’re right…Batman can “fly”…just like these guys: http://www.youtube.com/watch?v=TWfph3iNC-k

    We’ll keep an eye out for you at Disney World (Magic Kingdom) on Saturday.

    -Matt (the random guy in seat 25F).

    • admin says:

      Thank you so much Matt. We were telling my parents what a great guy you were to our Jonathan. Tony and I appreciate how kind you were to our son. It was a great send off for our trip! Hope yours was magical as well. I will show him the video tomorrow. And thanks for looking at our site.

  16. Saman says:

    Hi Libby,

    I just recently found out and I am sorry that you & your family are going through this. She will always be in my prayers. Please let me if I can do anything.

    Your las Madars friend
    Saman

  17. Sof & Lara says:

    You’re a brave little girl! We’re praying for you….we serve an awesome God! You have a purpose here little JLk!!

  18. signe' says:

    My grandson daniel curtis was diagnosed Oct 23th 2013 today is his follow up MRI.. he’s 5 yr old.. FB has a page Danny’s Warriors.. Im sending u lots and lots of prayers for ur lil glitter girl and ur family..power of the prayer.

  19. Fawn says:

    Sending you and your family many prayers and lots of love and hugs!!! Praying for a speedy recovery and lots of smiles soon. XO

  20. Tammi says:

    Jennifer, you are a brave, beautiful girl… We are keeping you close in our prayers. We are a non profit 501 c/3 & assist pediatric cancer families directly. I found Jennifer’s story on Twitter…. Mom, if we can help, please download application & fax to us. “We are OF the families, FOR the families” GiannaNicolesHeartOfHope.org and GiannaNicolesHeartOfHope@gmail.com Sending hugs XO

  21. Cyndi says:

    JLK is the most precious little girl I have ever seen, my prayers are for JLK and your family. I think that god needs a precious angel to be with him and that is why JLK is going to be joining him. I truly admire your strength.

  22. Jodi says:

    My heart goes out to your family, I sit here with tears in my eyes and my wish for you is you will find peace in all of this.

  23. Suchitra Chander says:

    I don’t know you personally but know many of your friends in Las Madres, Libby. Our family’s deepest and sincere condolences on the loss of Jennifer. What a horribly difficult time but what happy memories you have .. .and what a nice strong family you are. Wish you all the best as you heal from this ordeal and carry on with love together and with peace.

    Suchitra

  24. Karen says:

    My heart bleeds for you. What a beautiful, loving wee girl. X

  25. A'lyce says:

    Some people don’t need a lifetime to make a difference. God Bless.

  26. Norma says:

    Please contact me when you get a chance, I would like to give you information about Jacob’s Heart support group. Our prayers are with you and your family. norma@jacobsheart.org

  27. Blogwdyk says:

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  28. Emily says:

    I cried again reading the new information added to this section. I continue to follow, pray for, and spread the glitter for you, your precious family, and Jennifer I know you, and she through you, will do amazing things in this fight. I am just so damned sorry you have to fight it at all. I will continue to read and support as long as you will let us, and will continue to spread the glitter even if you decide you are done. Your baby and your words have forever changed my heart, and for that I am blessed.

  29. Marcia Davis says:

    There is no worse pain. I am so sorry for your terrible loss. I, too, lost a daughter to a brain tumor. I had her for 29 years, not merely 6. The pain is still there after 20 years, but it does get more bearable. Life does go on, but I suspect that you, like me, will be changed forever. My heartfelt sympathy to you and your family.

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