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’
“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 did…she just accepted it and lived it.
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.
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.
***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.
The good news is it did shrink.. The devastating news was 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 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.
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 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..
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 veins…and knowledge is like glitter…and once we know better we can do better.
