challenges

This morning was a rough start.

I gave her 5am meds but was a little lazy and didnt space things out the way I should have. . .

and we needed to change the bed so we moved her.

All of these things combined meant she threw up… pretty quickly after getting the meds in. So the problem was I had no idea how much of the meds she actually absorbed. I called into the hospice agency and they called the hospice dr in charge of her care.

The medication that was concerning is the methadone. Its job is to level out her pain throughout the day. (morphine for pain break through) So we gave her a half dose.

But I think thats all she got in her system since had 2 breakthrough headaches this morning.

We got to take a good deep bath together this morning since she wasn’t accessed. I washed her hair. She didn’t want to get out.

I thought to myself I wonder if we can make it so she passes away in the bath…she would like that I think.

I brushed her hair while she laid in my lap. One of my favorite ways of sitting with her. Between my legs sitting up together. Often she grabs my arm and pulls me tighter around her.

simple. . .blissful…

IMG_3795I took my time today. Even though it was terribly knotted I got all of it brushed. I was gentle and took my time. I didn’t do that nearly enough with her…

I will try harder with Charlotte…

 

 

 

And a reporter came.

Not our first interview but that one was at a vastly different time in our journey.. though only 2 months ago.

We chose to do a interview in our home. .  in the midst of our last days with Jennifer because we realize people care right now. That just maybe people will pay a little more attention.

My message is simple.

I actually realized it blogging a few night ago.

I have guilt and blame in my daughters suffering.

Its not that she got tumor and has cancer.

Its that there isn’t a cure.

My guilt is that I didn’t do enough before. . .DSC03359

If I had half the dedication I have now, when she was first placed in my arms. . maybe just maybe there would be a better treatment or a new medication. . Maybe just maybe. . .

she wouldn’t by laying next to me. .

slowly dying.

So I made her a promise. I would never stop trying.

And never stop trying to reach people and give them information and a fire to also try to make a change.

7 children died today from cancer.

Seven children.

My child wasn’t one of them.

But she will be. And on that day. The day my world crumbles. 6 other families will be living the same nightmare.

I don’t have the answer. But I will start with this blog and a promise that if you stick with me. .. if we stick together we can find a way to really make an impact.

I spoke with Dr Partap today. She asked how she was doing.. Impossible to answer since everyday is different with a new set of challenges. Once we find a rhythm and a way to stay ahead of a problem a new one crops up.

Keeping her comfortable is so much harder than I thought it would be. And no way we could be doing it without the people that are stepping up and stepping in. . .

thank you.

I look back through this blog. I cannot believe how fast this is all happening.

I am so scared.

Of so much. Tony mentioned after talking with the social worker that we are not just going to be teaching our kids abut DSC_0111grief and mortality at their ages now…4, 2 and 8 months (will she make it to 9?). We will do it for/with each at 7 and 10 and 16.

I knew it would forever change my children, but to look at it those terms . .. how it will color every aspect of their lives. . . that somehow didn’t register.

This is going to be a lot of work.

And sometimes I feel alone. I feel like so many have pulled back and away.

Unsure what to say. . .or fearful for their own pain or that of their children. .

I am so scared.

. .. and I am so so sorry. Sweet baby Jennifer . . .

I am so sorry.

DSC_0684

 

 

 

 

77 Responses to “challenges”

  1. I wanted to say first that i am thinking of your family and praying for you.

    Secondly, I wanted to say that, though it may be impossible not to feel guilt, this is in no way your fault. Sure we can all do a better job advocating for cancer research, but you as a person are not the cause of JLK’s cancer, and are not the reason there is no cure yet. I am a graduate student in biomedical science, and I can tell you that the work that goes into any drug involves so many people that one person couldn’t possible be held responsible for a cure or the lack thereof. I don’t say this to discourage your calling to advocacy–I think you are already an amazing voice for cancer research–I just want to encourage you to know that you are not to blame.

  2. Libby it breaks my heart to hear you say you are sorry to Jennifer. She absolutely adores you and knows you adore her.
    Both of you are amazing and I TRULY know that you will make a difference. Jennifer was given to you and Tony because you both will make a difference in the pediatric world of cancer.

    I know my words don’t take away any pain or hurt. But I hope you realize how amazing you and Tony are. You were all put together for a reason <3

    Much love and hugs xoxo

  3. Nothing I can say or do will ease your pain, but I can promise I’m right here by your side. I’m determined to help your cause. I read everyday and I’m scared too. Scared to read “the news”. With my whole heart and soul I pray for you, JLK and your family.

      1. I feel so bad no. One deserves to SLOWLY die. I pray every time I take a step so when I take the next step she will still be on this earth with her mommy and daddy. I hope the poor kindergartener is fine. I know my son will have a hard time since they are in the same class.

  4. Your children will miss her forever. But they will have an angel guiding and protecting them… Inspiring them to do good things in life. They will have heightened awareness and empathy that others will not have access to. Not all from this will be negative for them. They will be proud of you and love each other fiercely.

    You are doing and have done all that you can and could.

    Jennifer is so beautiful. I am so sad for you all.

  5. I have not stopped praying and will not stop. Your strength amazes me. Your children are so blessed to have you and Tony as their parents. Much love!!

  6. Never blame urself. Don’t out that weight on u , u already have so much on your plate. I just want to say that I am honored that u would share everything that u r going thought with us. Unfortunate the topic but still homered that u would let us in. Most of us go through our daily life’s not thinking about what the other person beside us may be going through. Through our words we connect together and join in pray for your little girl. As I said before u r a very strong amazing women. Your family is very lucky to have u. Take care and know we r all praying.

  7. I am afraid for you and your family. I pray each day that your fear will be lessened knowing that Jennifer will be with her Heavenly Father. I am with you in your quest for pediatric cancer funding. Please know that Jennifer will live on in our hearts and will be a driving force for a cure. You are not alone! We love you all very much.

  8. Libby, Please don’t feel guilty because there isn’t a cure yet. You see this is all part of Gods plan. Little sweet Jennifer was given to you and Tony because God knew that Jennifer would need a very special mom to help her through this terrible time in her little life. Through her you will help to find a cure and someday another child will live because of you and little Jennifer. You are the most strong, wonderful and caring mom and Jennifer loves you and is lucky God chose you to be her mommy. Thank you for opening my eyes to this horrific Cancer and making me realize that I need to do something also to help. You and Tony are a true inspiration to everyone that you touch. You both will get through this and will continue to be amazing parents to your 3 younger children don’t even think twice about that, I have no doubt. Jennifer will be a guardian angel to her siblings and live in their heart forever. God bless you all.

    1. I absolutely LOVE what Leslie wrote! Can’t agree more <3

      I thank God every single day for you, Libby, and your darling Angel Jennifer <3 I'm completely honored that you share her with us every day.

      Praying hard!!

  9. Blessings to you, Libby! I wish I could lessen your burden. We are praying – so many are praying – my 3 yr old prays for Jennifer by name, my 9 yr old has Jennifer’s name on his class’s prayer list, my husbands men’s group is praying, and today, I’m angry with God. I never thought I would be – I even thought if it happened to my own children I wouldn’t be angry, but I AM. So, we continue to pray for Jennifer and all of your family. God, master healer, may your will this time align with our plea, destroy Jennifer’s cancer, and supernaturally heal her, return her whole to her family and all of us. In Jesus’s name, we pray. Amen.

  10. Hello there my prayers go to your family. Meet you guys at one of her favorite ice cream shop. I would like to take her some.

  11. Your story has put my life into perspective. I pray for you and your family and especially sweet JLK. I couldn’t possibly know how you feel, but your strength in all of this is an inspiration.

  12. There is a time for all things. To say that your children won’t be affected would be naive. They will be affected. Everyone will. Forever changed. When my brother passed away, someone told me, the life you knew is over, now it’s time for a new normal. And it’s true. You will have a new normal. Just the other day my mom was at my house and she was having one of many of her bad days (which I sarcastically refer to as another day in paradise) she was crying and I was holding her and my son walked in and asked what was wrong. I casually said “Grama just has Uncle Johnnie tears today” and he shrugged and said “oh, ok”. Because this is our new normal….
    I feel like I have to tell you that it was a long road of therapy and counseling for my son to get to the place he is now. He was angry and confused and everyone around him was sad and crying and he had lost his best buddy….. But you will work through your new normal. And so will your children! Jennifer can become a star. I purchased a star and named it Johnnie! My son thought that was awesome… She can be a white butterfly or a hummingbird or a dragonfly. Whatever brings you hope and gives your children something tangible to remember her by.
    I believe in life after death! Like you, I refuse to let myself think I won’t see Johnnie again! I KNOW I will see him again and I know that he is In Such a place, that given the chance to come back, he’d chose to stay there!
    I sent your story to the Ellen show! I didn’t know what else to do. She’s got such a huge platform for You to launch from. A platform that you can pull congress in and MAKE them read your blog and MAKE them have emotion and feeling so that they will push for mor research and treatment!
    You have become part of my daily life. I read your blog everyday. The way you write makes me feel like I’m there with you! I only hope you continue to blog, so that you can feel the support and love that is HERE now and then….
    Prayers and thoughts with you always
    Sarah Smith

  13. You are an amazing mom, your dedication  and strength is truly inspiring.

    Your children are blessed to have you…

    Love & Hugs We hope your family receives a miracle …

    Love the picture and video of your radiant girl…

    Prayers and love for JLK coming from Reno, Nevada

  14. I wish that there was more time for your family to be together. Your strength is as beautiful as she is and I hope you know how much she loves having you near. We love you and will be here to fight with you now and with whatever journey you embark upon.

  15. I just want to hug you and tell you even though I dont know you I am so very proud of you Libby. You are stronger than you will ever know.

  16. Libby, you don’t know me but I was in Mark’s class at SF. I am a pediatric cancer advocate and have been praying for you as well as staying active writing congress and raising awareness. Yesterday Jonathan Agin, a cancer advocate who lost his sweet daughter to DIPG, had meeting at the White House. I have included the link to read what he said about it. People are fighting for JLK!!! We are fighting so no one will have to know the pain the you know. You are amazing and you have an army of friends and perfect strangers behind you.
    http://fb.me/2wcLwb0JO

  17. Libby you are in no way at fault!!! Don’t carry that guilt!! Some day after, we should talk! I carry guilt but I know it is not mine to carry! We are not alone! You have done more then many parents could have ever done! Your an amazing Mom and I am so proud of you, Tony, your other children and your entire family! Jennifer was sent to you from Heaven because you needed her as much as she needs you!!! You are loved by all of us here and so many many more…. Because of you I was able to sit at Youtube last night and see all the amazing videos and caring out pour for her! You allow me a connection I would never have had! God Bless you sweetheart you are so very special to me I love you so much and just know I am keeping all of you in my prayers!!

  18. Your daughter is so beautiful! I know what it feels like to loose someone close to me that had cancer. Its devastating and depressing. It just plain sucks. I pray for you guys everyday. I’m so mad this is happening to your baby girl. I hope and pray for comfort and peace as she goes to dance with Jesus

  19. I have been following your journey with you and JLK. I know that we don’t know you, but please do not feel you are alone. xoxo This in not your fault. JLK needs you and you need her!!! I am inspired by you, your blog, your love, dedication, strength and your honesty. God has a plan. I pray for JLK, you and your family daily. I wish I could HUG and HOLD you right now and give you peace. Please if you need anything we are ALL here for you!!! With all my love, support and prayers.

  20. Sending you my heart and comfort, as that is all I can do :'(

    I so wish I could help you.

    I love (for lack of a better word) the idea of trying to let her pass in the water.

    I want to contribute to the fight. All I’ve done, so far, is monetary. I don’t know how to do anything else.

    With love from NH

  21. My heart aches for your family and Im sending many prayers your way!! Not only are you guys so very blessed to have Jennifer as your daughter but she is just as blessed in having you guys as her family. You are such amazing parents who give all the love in the world to your kids. Your strength as a Mom is so inspiring. I want to Thank You for sharing your story in such an open way that it now gives so many, myself included, the drive to fight for our children before the day comes that someone we love is given such an unfair diagnosis.

  22. I pray every day for you and your family too give to give you strength through this difficult time..just keep in your heart that none of this is your fault you are a very strong mommie and you are doing your best for your sweet Angel and she knows that..no one knows Gods plan for us, we just have to deal with what he deals out to us and you are giving her what she needs and that is YOU her mommie who loves her. I send my love and prayers to all of you and most of all big hugs to that beautiful sweet angel Jennifer…

  23. Libby,
    You are and will continue to make a difference in pediatric cancer. Please know that I am not going anywhere and neither is your online moms community. We love you and the entire Kranz family. Always.

  24. Libby, I am so sorry for you, your family, you pain, and most of all sweet little Jennifer. I don’t know you but have read your blog and cried many tears for you and Jennifer. I have prayed that somehow God can touch you and your heart and help you with all that you are going through and will. rmember you are now to blame, but us moms always have guilt when it comes to our childrens happiness, health, and well being. My heart breaks for you and know that you, Jennifer and your family are in my daily thoughts and prayers. You’re an amazing mother. God bless sweet Jennifer.

  25. You don’t know me, but I know some friends of yours. My daughter turned 6 one month after Jennifer did. The first time I heard about your family was on the day of her birthday party because my friends kids couldn’t make it since they were at the Giant Playdate for Jennifer. Since that day I have made a connection with you & your family. I sat down with my daughter to explain why her friends were unable to make it and we started praying for your daughter every day. Every day she asks me how Jennifer is doing, and I tell her. I think it is important that she understands (Maybe not every detail) and that she prays with me. I just wanted you to know that you have touched our lives. Your daughter has impacted us and has changed our family. We are here, silently following your journey, with out heart aching for you, and praying for you every day.

  26. You are never alone…you have every right to be scared…you have very right to doubt…don’t let the doubts steal the precious moments you have with your beautiful girl…you did the best you could at every moment…even if you don’t believe it…the path you are on did not come with an instruction manual…you are doing your best…and that is enough…prayers and blessings for you all…you are not alone…

  27. There are so many things that can steal our children. The ones we preach against, like drugs and driving safely. Until about years ago cancer was not a thought I had of a child thief. 2 precious children I knew passed that year and I was stunned. My efforts to raise awareness seem feeble but I hope they help. You will honor your daughters life even though you would trade it all for her life.

  28. First and foremost, my thoughts and prayers are with you and your family.

    I wanted to tell you about being the sibling of someone who passed at at young age, though not as young as JLK, nor under such circumstances. But loss is loss, and grief is grief.

    My brother died in a car accident when I was 14. The pain seemed almost completely unbearable. Learning about life and death at such an age was hard ( and so wrong). My other siblings and I all felt it; our sadness and anger, and more importantly, our parents sadness and anger.

    You remind me a lot of my own mother. Strong, brave, and sad (is sad even the right word?). And like my mother, I know that you will pull your other children through this. Teach them not to fear life because of death, to continue to live even though they know, and see in you, the fear of another loss.

    Continue to be brave. Continue to live. Your other children will mirror your grief process. Let them be sad with you now, and many years from now when it will still feel new. But let them make you live. You and your husband have show by this blog the strength you have in one another. Continue to be strong. Let them make you live a life refilled with happiness once again. You deserve that. Tony deserves that. Your beautiful children derserve that. And so does JLK because she will live through you and Tony now.

    We have never met, but thank you for touching my heart. Please know that even though we have never met, I am here for you in prayers and thoughts of love and strength.

    Sincerely,
    L

  29. Libby, I pray everyday for all of you. I know how determined you are to make change, find a cure, and save other lives. Please know that you have an army behind you to help echo your voice and support you.

  30. I don’t know you, I follow your story though and grew up in Giroy. You are such a strong Mama, hang in there, you are doing everything you can. Praying for everyone.

  31. I wish I could make this all stop for you. I wish I could wave a magic wand and make things all go back to Sept and have everything just be normal. Over the years, I’ve watched in awe as you braved so many obstacles to have a child, to deal with her health, and now this. If there’s a person in the world that didn’t deserve this life it was you and Jennifer.

    Your constant grace and vulnerability leave me in awe. You are so very special and if there’s anyone in this world who can bring about change, it is you. I believe in your so very much. So, keep leading us, keep telling us what we can do, and we will stand with you and make give this movement a voice. I pray for you guys everyday, multiple times a day.

  32. You have made a definite impact in my life and I’m sure others. You’ve helped me realize that every moment is precious and to never take it for granted. I will forever be reminded to cherish every second I have with my baby, even in the tough times. You and Jennifer have made a difference. Sending our love <3

  33. us parents seem to blame ourselves for when our children do wrong, get sick etc…our job as a parent is to Help our children, comfort our children and susupport our children. You are doing everything right for your daughter. I think and pray for you all every day. God Bless and know you are doing everything Right (((HUGS))))

  34. Like so many that frequent your blog, I don’t know you…. I grew up in Gilroy and started following your blog because I felt a hometown connection to your story. I never thought I would become so emotionally invested in your journey. I find myself waking up in the middle of the night thinking of Jennifer and of you. Your story has forever changed me…

    You have lit a fire inside me to help get equal funding for pediatric cancer research…. I would have gone through my life donating money here and there and feeling pretty good about myself, but now I have a deep burning desire to change the way research funding is dolled out. And for that I thank you! I thank you for your raw honesty in sharing your story.

    You are not alone… Together we all stand…. We stand for Jennifer.
    Our voices will be heard!

  35. I too am afraid to read every post. I don’t like the pain and fear that follows. But I do read every post. I’m grateful that it is not my child. I feel guilty for feeling that. I wish so much that it wasn’t your child. I am so sad and sorry for all of this. But I will stick with you. I will not pull back. I will be afraid to say the wrong thing. But I will stay and support and I ask you to know that if I do say the wrong thing, I’m sorry and was trying to say a right thing. How can there be a right thing to say in this situation that is so wrong? But you are amazing and beautiful and loving and strong. Jennifer is all those things and also so pure.

  36. You will develop a new “normal”. You will go on. Your other children will be affected, BUT…you will see children who are not as selfish as others, more in tune with suffering or sadness when their peers must go through a crisis, more empathetic, and in the end…THEY WILL BE STRONGER. It is hard, sad, and exhausting, but you WILL GO ON.

  37. Listening to your story and the road Jennifer took to get to you, Libby and Tony… nobody could love their child any more. You are fierce and strong with that love and that is evident to in this painful journey you share with us.

    Thank you for your love and your strength – please know that we’re with you. If you can think of anything we can do – I’ve written, emailed people, sent a message to Ellen as well.

    But more, if there are things we can do here in Gilroy, shopping, cooking, whatever….

    Hugs to you guys…

  38. Elizabeth, you have nothing to be sorry for but do understand your feelings as much as I can anyway without living it as you are. Please try to focus on all the happiness and amazing experiences you have managed to provide for Jennifer in such a very short time. I suspect that Jonathan will remember these very special, sad yet fun times with his adoring big sister. Nicholas will likely not remember too much but will remember through all the pictures and videos you have taken as well as from hearing the stories over and over again. He will know how much Jennifer loved him! Charlotte will also learn through the pictures and stories of Jennifer’s love for her and how she was looking forward to sharing more times painting her nails, combing her hair, helping her pick out what to wear. . .they will remember with laughter, smiles and love.

    When they are much older they will all realize that you and Tony, together with your amazing family and friends made it possible for them to have these memories of their time with Jennifer; and they will know without a doubt what wonderful parents they have and how much they are all loved!

    Continuing to send love, prayers and hugs. . .

  39. Libby,
    Was wondering if the hospice nurses have recommended giving the Ativan 20 minutes prior to other meds or food when she is hungry to avoid the nausea and vomiting. This is a common practice with anticipatory nausea and vomiting in cancer patients. Please do not take this as overstepping, ask your nurses first. Just want to make your little girl as comfortable as possible. You continue to be a constant in my thoughts. Love and strength to you.

  40. Libby- you are her momma so you are going to have all of the feelings. Those of us on the outside looking in marvel at your strength and grace.

    While some may have pulled away, I assure you that you have an army of mamas that are ready to fight the long fight with you. Making changes and finding cures is hard. But we are here standing with you ready for the long fight in the name of Jennifer and other children taken too soon by cancer.

  41. My heart aches for you and your family. I am a first grade teacher, a mother of 2 (boys, ages 6 and 3), and I live locally. Something about your story, your family, has tugged on my heart in a way that nothing like this ever has. I hold my breath and pray each time I read a new post. And I’ve planned to say something, to comment a hundred times, but I couldn’t find the words. But even though I don’t know you personally, I want to support you.

    I spend my days surrounded by six year olds–my students, my own son. I cannot imagine. The mother and teacher in me desperately wants to do something to help. As nothing I can do will ease the pain you are feeling now, I am choosing to become active on Jennifer’s behalf, on your family’s behalf, to work towards knowledge, a cure, towards eliminating this DIPG monster. I have emailed, tweeted, forwarded, reposted, and donated. My class drew “happy pictures” and messages that I took to Stanford/Lucille Packard in Jennifer’s name to be given to children going through radiation/chemo, and it will be an ongoing project.

    Most importantly, I am loving ALL my children (my kids and my students) a little deeper. A little more patience, a little less hurry. Tighter hugs, more laughs.

    I just want you to know that sharing your story means something. Her life means something. She is important. She is loved. She will be remembered.
    I wish comfort for all of you. Now and in the days to come.

  42. DEAREST ELIZABETH,
    AS ALWAYS, SO MUCH LOVE AND WISDOM HAS BEEN SHARED IN RESPONSE TO YOUR BLOG TODAY. I HOPE YOU DO OR WILL BELIEVE THAT THIS SUPPORT WILL ALWAYS BE THERE. I ALSO HOPE THAT YOU WILL ALLOW YOURSELF A “RETREAT” FOR A PERIOD OF TIME TO GATHER NEW STRENGTH FOR YOU AND YOUR FAMILY.
    THE IDEA OF A BEAUTIFUL WHITE OR COLORFUL BUTTERFLY WOULD HELP YOU ALL REMEMBER THAT JENNIFER IS CLOSE BY. WHEN MY BROTHER & I WERE SPEAKING AT OUR MOM’S MEMORIAL SERVICE, EVERYONE WAS AMAZED AT THE PRESENCE OF A WHITE BUTTERFLY THAT GRACEFULLY MADE ITS WAY DOWN THE AISLE AND HOVERED AROUND US AS WE SPOKE.
    YOUR BOND WITH JENNIFER IS AMAZINGLY POWERFUL AND BEAUTIFUL. I HOPE THAT SHE WILL BE WEIGHTLESS AND IN YOUR ARMS WHEN SHE PASSES.
    I ALSO WONDER IF SOOTHING MUSIC MIGHT BE COMFORTING. IF YOU WISH, I WILL SEND IT TO YOU VIA OVERNIGHT EXPRESS. IT’S A CHILDREN’S CD CALLED ACOUSTIC DREAMLAND.
    LOVE AND PRAYERS ALWAYS. (I APOLOGIZE FOR THE CAPS.)

  43. Libby,
    Your dedication to finding a cure or new treatment options amidst your pain, hope and precious time with Jennifer is astounding. You are a powerful mother who will make a change and a difference. Thousands of people are reading, listening, praying and donating because of your soul-baring through this blog and through your network. I remember your posts when Jennifer came into your lives. Your family’s story of love and determination then, and now, is inspiring. I follow your journey daily and pray for Jennifer and your family for time, comfort, lots of tight hugs and holds, and support.

    I love the suggestion and action towards giving you a public platform and will help in any way.

  44. I do not know you or your family but I have been following and praying for jennifer and your family.You are amazingly strong Libby. Your words are beautiful just like the love for your daughter!! My mother loved the name Jennifer and named me after a friend of hers. She told me that every Jennifer she knew was strong, brave,loving and kindhearted just as I imagine your Jennifer is. Thank you for blogging. Thank you for sharing your story with us!! Praying for you and your family

  45. Dear Elizabeth,
    I am new to your blog. and want to thank you for expressing your feelings in such beautiful way.
    I can’t imagine what you and your family are going through. I am so sorry you and your beautiful little Angel have to go through this.
    I’m sure others have expressed this on other blogs., but our children are a gift from God. They are only loaned to us. He will call them home in His own time as He will any of us.
    Please don’t think you have failed your little Princess. I have learned after having cancer twice it is not anyone’s fault. It’s part of life and live everyday like it’s our last. Having Faith that after your beautiful Angel is in Heaven she will be whole again without pain and live in Paradise.
    I will place your blog on our Prayer Group e-mail.
    Love and prayers are being sent your way.

  46. Not an hour goes by that I don’t think about your sweet and beautiful JLK. You have given me a reason to fight. She has given me a reason to fight. I am fighting and will continue to.

    You are not alone, Libby. We are all here with you. Right here by your side. And even in your darkest days and hours, when you feel like you are all alone. We will be there with you. Right by your side.

    I hope a miracle touches your family. I pray for this every day.

  47. I am sorry for all the hurt you are feeling. Many of us do not know or understand the pain and fear you have as Jennifer’s mother but you are not alone as you live it. Please remember that one person alone cannot fight the battle against cancer, especially childhood cancer. Still, Jennifer and all of us know that if you’d known before that she was going to be diagnosed with DIPG you would have done everything possible and the impossible to prevent it…because you are Libby.

  48. I am so touched by Jennifer’s story! Her smile in all the photos tells it all! I don’t know you or your family but I know that you are extremely sting people and a wonderfully awesome family! Cling to each other and stay strong! Enjoy every single nano second with your gorgeous daughter and know that you are doing absolutely everything possible for her and then some! My prayers are with you!

  49. We haven’t met, but I’ve “known” you before JLK came into your life. The “One Who Brought The Dragonfly Pillow” is like a sister to me. Thus, I’ve been on the sidelines through the challenges life has brought you, your husband, and your family at large.

    I lost my father when I was 5, so I’ve lived a lifetime with the concerns you’re facing now. While that was 49 years ago and at a time with little support, I can attest that it has shaped and colored my life. I’d like to echo what Kimberly Redublado said…there are amazing gifts that you and your kids will take forward from this experience.

    I admire your strength and awareness as you face JLK’s passing. I cry as I read your posts as you paint with words the gruesome effects of cancer along with the light of love and magic. I am sure you’re exhausted, but you seem to be so connected to living each second–with JLK, with Tony, with your kids, with your family, and with all of us who are here for you in a much stronger web than you know.

    Thus, I can only give you a cyber hug and send love, prayers, and strength.

  50. I can’t imagine what you are going through. You are so strong. I would be trying to handle this alone and commend you for creating a very public blog.

    I believe a cure is already out there in alternative medicine but it is not a mainstream concept so not embraced. You have to go with what you are comfortable with.

    Hang in there and trust God to give you the strength you need for your daughter.

  51. I just want you to know I’m here, reading and praying for your strength. You right in that I don’t know what to say, so I’ll just listen. You say how your feeling, all of it.. And I promise to listen. Your strength that we are praying for is so visible already, and with it you will make a difference. You will make good on that promise to JLK, and we will help you do so. Don’t let guilt eat you alive, it’s good to feel we could change things because we want that control. However some things are just bigger than us. It’s like that quote, we don’t get to choose what happens to us we just get to choose how to react to it.

  52. Hi momma!! I am a grandma now, and recently returned to Cali after a 3 year stay in TX caring for my youngest daughter and raising her autistic son. I gained custody for him after 3 years and he has been adopted by a family member. My youngest daughter was born with 6 heart defects and sometimes the digitalis would go in and then she would throw up and I never knew if she got enough. I live and am a part time bookkeeper living in Gilroy with my oldest daughter – and I am available, I have been in your shoes where people just weren’t able to help me care for my youngest daughter, or for my grandson. I know what it takes to be true to your child and work tirelessly. I have many references – and I am willing to come and just do your laundry and put the clothes away – clean up dishes – and just do the hard stuff that you can’t even imagine having to do right now. I am a faith filled follower of Jesus and attend South County church. You can have someone else contact me and handle this – not looking for anything but to be a part of relief for your family. Juliene Larsen 408-767-0588

  53. I hear you. I saw a quote the other day about how when someone cracks you open and makes you feel things, you fight for them. You and Jennifer have cracked me open and made me feels things and I will fight for you. <3

  54. Libby
    I came to your blog through my best friend who knows you.
    My tears, prayers and love are with you and your family each day. Your honest and brave words have touched me deeply. The glitter shoot of JLK is precious – her smile lights up the room and her legacy will light up the world. I am inspired to be the best mom I can be to my almost 6 year old daughter and toddler boy. Hugs and prayers to you.

  55. I read it all – every word – I wanted to get to know your daughter a little. And I wanted to get to know you, too. I will try to keep a piece of my heart for JLK and you and your husband and your other children. You all are in my prayers.

  56. You are not alone, we are here with you. I’m one of the people silent because nothing seems like the right thing to say. But I’m here, reading, crying, praying.

  57. Dear Libby,
    First and formost I am so so so sorry you are having to go through this. No parent should have to deal with what you and your family is being faced with. It breaks my heart to read your story.

    You don’t know me. I heard of your blog from my sister-in-law whose son does BMX racing and her family is a big supporter of the foundation that is hosting a racing event for your sweet Jennifer. She knew this would touch my heart because I lost my husband to melanoma 15 1/2 yrs ago when our daughter was 13 months old. I too was dealt with the horrible task of teaching my sweet little Jennifer about death and mortality far sooner then anyone should have to.

    I would be honored to be of any support to you whether it be talking, listening, a shoulder to cry on, or a hug. My name is Cyndi Cossey. I am on Facebook so please feel free to send me a private message or friend me.

    Take care of yourself and God bless you and your family. Please know we will keep you in our prayers.

    Cyndi

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