In this very special addition to our series for Pediatric Cancer Awareness Month, I get to introduce you to two truly amazing women and their equally incredible daughters. They are “Warrior Mamas” in every sense of the term, their stories so similar yet so different. Both with lives affected directly by one of the most horrifying pediatric cancers, DIPG.
Diffuse Intrinsic Pontine Glioma is a tumor in the brain stem, the Pons. The pons is responsible for regulating basic yet essential functions like breathing, swallowing, heartbeat and balance. DIPG is diagnosed almost exclusively in children, typically aged 4-11. It has a 0% survival rate. You read that right, 0%. It is extremely aggressive with no known cure and no treatment options, limited to alleviate symptoms and extend quality of life. Survival is typically 9 months to a year from the time of diagnosis. Clinical trials, experimental treatments and some advancements have seen those numbers extended in some cases.
Libby Kranz is Warrior Mama to Jennifer Lynn Kranz and founder of Unravel Pediatric Cancer. Jennifer passed away on February 12, 2014, only 3 ½ months after being diagnosed on her 6th birthday. In that short time Jennifer captivated thousands, myself included – primarily through Libby’s blog. You can learn about Jennifer and read the blog here. I encourage you to start from the very first entry.
Wendy Stanley is Warrior Mama to Kira Stanley, a 17-year-old high school student from Encinitas who was diagnosed with DIPG last November. Kira loves to surf, has a calm wisdom about her just in her photos and has good days and not-as-good days. Her family is doing everything they can for their daughter in the face of such uncertainty. Keep up with Kira on her Facebook support page kirasupdates.
Both mothers to daughters of DIPG, but mothers first and foremost. Here they share an intimate look inside a warrior family and how their lives have been affected by pediatric cancer – what they knew, what they thought they knew and what they’ve learned.
Tell us a little about yourself:
Libby Kranz: “39-year-old mother of 5. 4 (ages 9, 7, 5 & 3) who walk with me and 1 (forever 6) who soars above me.”
Wendy Stanley: “45-year-old mother of two teenage daughters, Zane (18) and Kira (17). COO for a lighting distribution company in Vista, CA.”
Tell us a little about your daughter:
LK: “Jennifer Lynn was my perfectly imperfect girl. She was bold yet gentle. She loved being a big sister but also a little cousin. Jennifer Lynn was the kind of kid who other children were naturally drawn to… and she took that seriously. Trying to be a good friend and leader. Though only a short while in school. She was the kid who loved recess the best. Her time to be social. But her favorite times were always those spent with her family.”
WS: “Kira is intuitive, sassy, strong-willed, sensitive, old soul. She is a good friend. She’s also a good student. She looks on the bright side of things. She is a natural leader and loves little kids. She loves music and surfing. My favorite thing about her – she “gets it” – she’s just really wise beyond her years and is brutally honest. She and I have a connection that just can’t be replicated. And what I love about that – others also feel this way about her. She is deep and soulful.”
Before your daughter was diagnosed, what did you know or think about pediatric cancer?
LK: “I knew bald smiling kids next to Jennifer Aniston. I knew relay for life. I knew kids didn’t really die from cancer. Basically, I knew nothing. Because everything I thought I knew was wrong.”
WS: “I knew very little about pediatric cancer. I was pretty familiar with adult cancer as my father passed away from bladder cancer when he was 59 (8 years ago) and my aunt passed away at 45 with lung cancer. But, I was unfamiliar with pediatric cancer.”
How has your daughter most surprised you throughout her journey?
LK: “How much she knew. How much she was waiting for me to know…and that she always needed me to be her parent. To have rules and be stern.”
WS: “Her strength really. Her optimism. Her determination. Her desire to understand the process. I guess I am not surprised by this as much as I am just so impressed. Anyone facing all this – much less a teenage girl – would have more than enough reason to fade into hopelessness.”
What have you learned about yourself as a mother throughout her journey?
LK: “That I love my children enough to let them go.”
WS: “What I have learned is that I can handle more than I ever could have imagined. People say all the time, ‘i don’t know how you do it.” Quite honestly, I don’t know, either. What I do know is that I have no choice – not because I am obligated – but because it just is what you do… It’s not even a question or a decision to be made. You continue…. Continue researching, continue mothering, continue working, continue consoling, continue self-care, continue fighting, continue paying bills, continue spending time together, continue crying, continue laughing… you just continue loving.”
How has it changed you as a mother?
LK: “I say yes at times I would have said no… and I am absent now sometimes. Because I am active in the fight against childhood cancer. I am more honest with my kids about the hard things in life. Because we can do hard things… and I want them to know that. I cry more. I laugh more. Losing Jennifer has made it so I can see darkness I never knew. But also a joy I never knew either. I am a better mom now…and a worse mom…but grateful. Always always grateful.”
WS: “I guess I just didn’t know I could love any harder. I have always loved my girls and been a fierce protective and loving mom… But, through all of this, my heart swells bigger than i ever thought… or even thought to think… It’s like “normal” love and protectiveness on steroids (of an entire baseball team). ”
What is the scariest part of being a “Warrior Mama”?
LK: “Time passing and her being forgotten.”
WS: “The scariest part is not knowing if I will be able to handle what is to come. The scariest part is letting my girl down when I know I am who she looks to to save her. The scariest part is not having any control even though I so desperately want it in this situation more than anything I have ever faced. I would give up just about anything to gain some traction in this situation.”
What advice would you give a brand new Warrior Mama? What about their friends?
LK: “New warrior mama: You got this. You don’t know it…but you do. And somehow every day what that means will change. But the core truth never will. You can do this. You already are.”
To their friends: There is no right thing to say. Follow their lead. And take care of yourself too. You cant support if you are drained. And insulate your friend. Be the food person. So all people contact you to bring meals versus the family (even at drop off time) Be their medical clearing house. So people email you. Fundraise for them. Its always needed and always hard to do.”
WS: “To a new warrior mama: The most important thing to consider is your child. Do not let others get in the way of you doing what is right for your kid. Do not feel obligated to make others happy or comfortable. Get rid of negative or needy people in your life… even if it just temporary. Surround yourself with people who support you no matter what. And keep searching. Get more opinions. Don’t take a death sentence. There are so many things happening in the world – technology is improving at an insane rate. Just because an option isn’t available day 1 doesn’t mean it won’t be available soon…. Our mission is to buy time.
To their friends: Support the warrior mama with kindness, silence, encouragement and know that you may lose them for a while. Do not take it personally and please don’t require a relationship analysis in the middle of this fight for their child. Be there when they need you…. And leave them alone when they need that, too.”
What motivates you the most?
LK: “My 4 surviving kids and the grandkids I hope to one day have. I failed my Jennifer… I will not fail them.”
WS: “Keeping my daughter happy. Part of what makes her happy is if I am good… So, she motivates me regularly. I cannot fall apart.”
What are your hopes for the future?
LK: “To make cancer a manageable disease. And I know we can. The ideas are out there. They just need money to make it happen.”
WS: “That we find a cure for my daughter. And that the lessons we are learning through this process can be shared with others who are on the same path.”
To learn more about Unravel please visit our website www.unravelpediatriccancer.org
To learn more about San Diego Events, visit our event page https://unravelpediatriccancer.org/blog/tag/eventssan-diego/
To chat, find out more, donate or get involved email me at [email protected]
Until there is a cure…….