light

We tried the new meds. I talked to Jennifer about trying to eat even though she was scared. She was so excited to eat. Her eyes sparkled as she took those few bites of chocolate gelato.

Then she vomited again.

I felt her collapse in my arms.

Defeated.

Tony cried with her. A pure outpouring of love and an ache for his daughter. It was beautiful and touching and heartbreaking.light

I rubbed her head and we “talked.” She couldn’t speak, so I asked questions. She would squeeze my hand to answer.

She is scared of what’s happening to her body.

I talked to her about it. About our goals for her care. About how it’s OK to be scared.

I told her I’m a good mommy; I’ll always take good care of her younger siblings. But that she will always be the one that made me a mommy and I will always be grateful to her for that.

she would have been an incredible mommy
she would have been an incredible mommy

That Daddy and I are best friends and we’ll always take care of each other.

That I love her enough to keep our hearts bound together always.

She requested a nap in our bed. I asked if we could take Jonathan to Starbucks for a talk. She squeezed a yes. Charlotte was napping and Nicholas was happy to play with Auntie, so we left.

We held his hands and skipped through the parking lot: my husband and I taking our boy to rip apart his whole world. At least he got a doughnut . . .

I asked if he had any questions. He said yes. “Jennifer has a brain tumor. And she is still throwing up.”

I told him the bad cells are taking over the good cells. The doctors aren’t trying to make the cancer go away anymore; they’re just trying to make her not have owies and stop throwing up.

We told him that he doesn’t have any of these cancer cells in him, and neither do we. We told our 4 year old what we do when we are sad or mad. We showed him what it looks like to be sad.

And most importantly, we told him how desperately we love him.

light4At home, our girlie woke up and got a new dose of meds and seemed to perk up. She drank water and was keeping it down. Three hospice care people came to access her port. She wasn’t overjoyed about it but handled it well. She lay down almost asleep as they dosed her with steroids. Then she threw up.

This was the first time it scared both of us. She was lying and gagged on it. I yanked her up and held her as she quivered forcefully, emptying her already-empty tummy. But her emotions didn’t dip so far this time around. Maybe our talk helped.

Phenergen seems to help. So we got a little happy time … Until the headache hit. She got her first dose of morphine tonight.

Our 6 year old got morphine. Right after her methadone. And it didn’t knock her out.

How is this our life right now? How did this happen?

We snuggled ’til she slept, and carried her to bed to give her a dose of her anti-seizure meds and soothe her to sleep.

Throughout this misery there is light.

A friend who lost her daughter. She texted to see if she could do something. I gave her something to buy; it was helpful, but really I just wanted to hug her.

Throughout this misery there is light.

My family watching our boys. Picking up Jennifer’s medicine from 3+ pharmacies. Setting up a schedule to Face Time with our kids.

Throughout this misery there is light.

Friends bringing fruit and toilet paper and beds. . . Filling in the gaps to run the household.

Throughout this misery there is light.

The power of social media. Raising an incredible amount of money and awareness.

I write for me … my outlet. I write to spread the word about the horrors of childhood cancer. I write to help others who will come after me.

Throughout this misery of today and tomorrow.

She is always my light. light2

 

 

27 Responses to “light”

  1. Stunning writing, Libby. ((((((((((Kranz Family))))))))) I hope the phenergan continues to help…I hope tomorrow is a better day…I hope you get some sleep tonight. I hope for so much for you six.

  2. Her light, her love, her spirit … will always live on ♥♥♥

    Prayers & more prayers Libby. Thank you for sharing your beautiful Jennifer with us.

    Peace to you & your family…

  3. Libby, You may write for you, but your words are for many. Thank you for sharing your very private journey and thank you for sharing your family.

  4. Just wanted to let you know that you’re all in my thoughts and prayers. We don’t know each other but RoniCedra sent a link out to our moms’ group here in Marin about your daughter and family’s plight and I wanted to send along my support. You are doing an amazing job of staying present and making every moment count…you are an inspiration.

    Wow – what beauty and sheer joy!! That is an amazing photo of you two together at the beach, filled with such love and light. It’s clear that you have a truly special bond.

    Wishing you many miracles, large and small and anything and everything in between…
    Catherine

  5. This is the most beautiful photograph I have ever seen. You are so much more than a good mommy. You are the perfect mommy for Jennifer. And Tony is the perfect daddy. Please remember that “the Light shines in the darkness, and the darkness will NEVER overcome it.” Shine on, JLK, forever in all of our hearts.

  6. I am the blessed mother of a 5 year old daughter and I read your writings. . your outpouring of emotion and I would give anything to make this better for you.. for your precious daughter. I send my Angels to you. . to wrap their wings of warmth around you and your daughter. I know there is nothing I could say to ease this for you. . Just know my heart is with you.

  7. Libby, Kranz family, and beautiful JLK. I am friends/old neighbors of Kelly and Heather Graham. Now Rodriguez and avrech. Even though I do not know you and your family I have began to feel your pain. I am doing everything I can to help spread the word for your lovely daughter and family. You are such a wonderful mother libby!! I pray for JLK daily thank you for sharing your stories

  8. One of the neuro-oncologists on our team gave us a great example to use. We told Matthew that going to Heaven is almost like going to a sleep over. Even though we can’t see each other, we’re still a family and always will be. I found that examples like that seemed to help him. There is a great book called “The Next Place” that we also read which was really good.

    All my love during this difficult time….NIkki

  9. Libby & Kranz family,
    My heart is heavy for you all and all my prayers are with you I’m this difficult time. Thank you for sharing jlk and her story with us.

  10. Libby her light will forever shine through you. I am not amazed at your strength for I knew how strong you were from the first day I met you. I knew the strength, confidence, loyalty, independence, and courage was only going to get stronger in time. You are what many of us strive to be. Jennifer was brought into your life for a reason. In reading your blogs and following your journey I thank God for that. I still have the letter you wrote me when you left Y. I read it every now and then when I need a pick me up. You told me I made a difference in your life. Well you have now made a difference in mine. You are an amazing woman Libby. Thank you for sharing and giving others the strength they might be needing as well.

  11. Thank you for sharing your light with us. You have truly made Jennifer a light that will shine on this world always.

  12. Thank you (again) for having this outlet. To allow us (even those of us who are so far removed) to grieve with you, pray for you, lift you up and share you with “the world”.

  13. I am not sure how I found you on FB. However, I’m here to stay. Your story touches my soul. Your writing brings tears to my eyes. I’m sending you strength, goodwill, and prayers for all. Your daughter is showing us grace, patience, bravery and love. All because of your strength, grace, patience, bravery and love. My heart is with you.

  14. I’m so sorry. It’s so incredibly unfair that all of you are going through this and have to have such serious and grown-up talks. You and Tony are amazing parents. Through it all, you’ve given the fairness and honesty each child deserves, especially to Jennifer. Your children are so blessed to have you. I will always pray that you have the strength you need and for the strength of your family and friends to help and care for you both when the moments are too much to handle. Jennifer’s light has touched many of us. Thank you for sharing it.

  15. I have been following your journey for awhile now but have never posted…..I just pray! I lost a 2yr old granddaughter to cancer a few years back so I have a lot of empathy for everything you are going through. Stay strong! Make special memories (I cherish mine even last couple days)!I promise there will be good someday…God wastes nothing….my Brianna’s death was the one thing to bring her PaPa to Christ before his death. You will remain in my heart & prayers!
    Cindy Hemphill

  16. Libby,
    Your writing has helped share JLK’s heart with hundreds if not thousands of people. What a beautiful gift you have given us by sharing her with so many. Your love for her and your family have changed so many lives. Thinking of you every single day.

  17. May the good moments move slowly so you can savor them….

    Jennifer is changing the world through her story

    Prayers for peace continue.

  18. Hi, this is only my second time to your blog. I am sensitive to your journey, and I am praying for your family. The reason I am commenting is to see if you have tried Zofran for nausea? I couldn’t tolerate Phenergan when I was pregnant, and Zofran worked wonderfully without the drowsiness. Stay strong! Much love <3

  19. I cannot thank you enough for having this blog and sharing it with all of us. My heart, my prayers, mi love and Light is with you, with JLK and your whole family.

  20. You are incredible, Libby. I hope you know that. I have no words to describe how much I feel for your family. I don’t know you but you have taught me so much…..and so has Jennifer. Someone commented that YOU are perfect for Jennifer, and I couldn’t agree more. I loved what you said about God and saying no to your kids. Your insight is just such a gift. Praying for you all.

  21. SO sorry this happening to your family… DIPG is the worst of the worst and more research should be done!

    I wish we could offer more hope to families with DIPG children… no child should have to needlessly suffer and then die because our government refuses to raise the pediatric cancer research budget and the public remains ill-informed on how little does go to research/the statistics behind pediatric cancer.

    My heart is going out to your daughter and family… in the coming days/months ahead.

    “There is a time for everything,and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to DANCE,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to SPEAK,
    a time to love and a time to hate,
    a time for war and a time for peace.”

    Thank you for sharing your voice with us… and for challenging the hearts of those in our country. Praying that for your voice will continue in the war that is pediatric cancer… that you’ll find reasons to in spite of the pain and for eternal peace/comfort for your daughter… as well as your family.

  22. I’ve read every word you’ve written on this blog, and yet, I’ve never commented before. As a mother, there just aren’t words for me to convey the depth of pain I feel for you– someone I’ve never even met!

    I wanted to write you a comment today to let you know one thing. I have experience with hospice taking care of my loved ones, and the morphine. At first, you think it will just knock her out, but it won’t. It will be such a relief for her to be out of pain on the morphine that she will perk up. The morphine seems like such a big hurdle, but it is a gift on so many levels– knowing her pain is under control, being able to spend more time with her talking and awake, allowing her body to relax…

    I will continue to read as long you post. I wish you and your family strength and love.

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