JLK’s Story

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

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

Jennifer Lynn Kranz was born on October 28, 2007, at 4:38 p.m. She weighed 7 lb, 8 oz. 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.

From the beginning, JLK seemed to have “gut issues.” After exhausting all the less-invasive options, at a little over 2 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 did… she just accepted it and lived it.

DSC_0593K-2013-05-26-33Blowing out her candles on her 6th birthday.

To write about who Jennifer is, I have to include her three 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 five 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. 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.

***updated April 7th 2014***

JLK will not be getting that opportunity. After seven 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.

The good news is, it did shrink. The devastating news is that it didn’t matter… her cancer had spread… to 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 year 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.

Jennifer was slowly dying. Seizures broke through the medications and she lost the ability to control anything but her beautiful brown eyes… they 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 lay with her the entire 36 hours before her death. Those were the most beautiful and grueling hours I have ever and I hope will ever experience.

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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.

Now we are attempting to survive as a family of five 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 for childhood cancer.

JLK Glitter Shoot
Jennifer was born with glitter in her veins… and knowledge is like glitter… and once we know better, we can do better.

Timeline:

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  • Oct. 28, 2007 – JLK was born.
  • Oct. 26, 2008 – She took her first steps.
  • Aug. 2009 – She was diagnosed with celiac disease.
  • May 12, 2013 – Our fourth child was born, completing our family.
  • Aug. 22, 2013 – JLK started kindergarten
  • Oct. 2013 – We noticed her eye turning inward and took her to a specialist who ordered a MRI
  • Oct. 25, 2013 – ER visit after headache and vomiting (one time)
  • Oct. 27, 2013 – MRI showed tumor on the pons.
  • Oct. 28, 2013 – JLK turned 6. We were told she had DIPG. A cancer that is terminal upon diagnosis.
  • Oct. 29, 2013 – Libby started blogging… almost every night. Sharing what it’s like for their family throughout this journey.
  • Nov.- Dec. 2013 – Libby, Jennifer and baby Charlotte stayed in Palo Alto for seven weeks of radiation. Brothers and Daddy stayed home.
  • Dec. 28-30 2013 – Celebratory trip to Disneyland for the end of radiation.
  • Jan. 24, 2014 – First post-radiation MRI should find new baseline.
  • Jan. 27, 2014 – Found out cancer spread.
  • Jan. 28, 2014 – Last day she ate a meal, a muffin for breakfast.
  • Jan. 29, 2014 – JLK was put on in-home hospice care.
  • Feb. 12, 2014 – She took her last breath in her mommy’s arms, 3.5 months after diagnosis.

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Below, are some of the most popular posts from Libby’s blog that tell the story from diagnosis day to being on hospice to how our family is coping with life after losing Jennifer.

hiding

This time of year when I will constantly make.. and then break plans. Where I will commit over and over...
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contagious

Its not contagious. Thats one of the early things you tell a child about cancer. As their friend/sister is battling.....
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her same long fingers

Her fuzzy head was nuzzled against me. It was a very rare moment for me with Bridgette. My 5th child...
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flash

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the...
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the 23rd -12th-

12th. I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for...
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broken trust

He has lost confidence in me. It's not that he blames me.. its just he doesn't trust me the way...
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lucille packard

I've made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia...
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i heard

I often talk about the good parts of me that Jennifer missed out on. The ways I have changed to...
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we’re coming

When we get close to home I have a silly tradition that we will call out to whoever is waiting...
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our bed.

Her bed. Well it was really our bed. Me and her. We shared some horribly beautiful nights in that bed....
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jennifer lynn kranz

I am so grateful for pictures. I feel like without them I am losing her. Like she becomes a figment...
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we all have 2 books

I think we all have 2 books we are assigned.. The first one.. our book of life. It holds all...
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questions without answers

I have been so busy with Unravel things lately.. I have found little time to truly grieve. But now I...
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changes everything

Death changes everything.. one thing I have really noticing rising the the surface lately though is perspective. The boys were...
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my role

Everybody has a skill a talent.. something that is special and unique about them. A way for them to give...
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release me

I am angry. I am frustrated. I miss my daughter. My sons. My husband. Me. I want to be free...
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