morning

So you know that whole no news is good news thing . . . not always true.

Her tumor responded well. It actually shrunk.

But . . . buts are never good are they?

More grew. The blood started pounding in my ears. This feeling..this pressure and sound in my head has only happened twice now. On her birthday when we got the prognosis . . . and yesterday. Its like the my ears are pushing outward . . . trying not to hear what they are hearing . . . and my throat closes . . . clenches up trying not to swallow the information being forced down.

I know at least one on her frontal lobe . . and sugaring on her spine. Her dr. a pediatric nero oncologists…said its one of, if not THE most aggressive cases she has seen.

fuck

I asked if it changed prognosis . . . I didn’t get a super straight answer on that one other than yes . . . its not good.

She said it explained the vomiting . . . and the personality changes. Her personality has changed so much..The other night she woke up to use the restroom and she was herself. Her sweet singing nighttime voice was back. Her love in words and actions for me was back. And as I left the room she said the last words we say each night.

“see you in the morning”

Oh wow . . .  one day  . . .

one day soon . . . those words will be -see you in the night . .

I will only have her again in my dreams.morning2

I can’t say how long she has. Obviously nobody really can.

I told Tony its time to make a few decisions. Will we do a feeding tube?

She hasn’t eaten or drunk anything more than a few sips since last night. How did that happen? Like she got so much worse once we knew.

Maybe she just needed us to know. For us to let her know it was ok to be tired and to be sick.

Ok to be dying . . .

Jennifer Lynn . . . it is not ok. But I will try with every fiber of my being to make you believe I think it is. I love you.

Today was rough. Lots of vomit . . . and bile. And sleepiness. But her true self re-emergered too. She enjoyed me and allowed me to enjoy her today. Thank you.

One of the times right after sitting behind her while she threw up and feeling her body grow sharp and ragged . . . then relax . . . I talked to her. I just told her when you are sick . . . and struggling in this family, we do whats right for you. Today thats you . .  so you decide. You want your brothers here . . . they stay. But if you want some time without them we will make that happen too.

Before they left I snapped a picture. Looking through the lens I wondered if this would be there last one together . . . or if I would know when the last will be.

morning1
sisters

Baby Charlotte is still here. Again Jennifer’s choice. She is wonderful for all of us. She is easy and happy and plays on the ground.

I let her sleep on her own a bit to talk with Tony. Other than feeding tube its time to start discussing after . . . Will we cremate her?

How the hell do you decide that. I hated it thinking about it for my parents . . but this . . .its not right.

We talked about donation.  We always said if we lost a child we would donate everything we could . . . They might not even take it if we could . . .

But her tumor. They better take it. And study it. And learn from it. I hope so much we can donate that. When a cure for DIPG is found she will have played a part.

The question I have yet to ask is what about pinkie? Her beloved stuffed animal. Will she go or stay with me?

Since she was in a chatting mood at bedtime, I asked as many questions as I could think of until she was done.

Before she went to sleep we talked about heaven. She thinks it smells like watermelon. All the time.

I think so too baby . . .

but don’t find out just yet . . .

I still get – to see you in the morning.

 

morning5

78 Responses to “morning”

    1. I am with you and Tony and your family, I am reaching you with my thoughts, lifting my prayers upward for all of you.

  1. Oh Libby…again the words are failing me after reading the ones you shared so well. This is unreal. It has to be…just HAS to. Thinking of your family and especially sweet Jennifer every single day.

  2. Oh Libby. I am in tears after reading tonight’s blog. I am so sorry. I’m so glad you all were able to go on your Make A Wish trip. It looked like JLK and the boys all had a great time seeing their favorite characters and Baby Charlotte always so happy. Such wonderful memories. I wish I could do something for you and Tony besides praying, which I will continue doing for all of you. You know how much we love you and how important you all are to us. If there is anything we can do, please reach out to us. Much love and hugs to all.

  3. Libby,
    I’m so sorry. This news just breaks my heart in pieces. There just are no words I can form to say how sorry I am. Praying for strength, comfort, and hugs that will carry you through. May God give you a peace that passes understanding. You are an amazing and inspiring mom. I so sorry that your family is suffering such unimaginable circumstances. Praying for Jennifer . . .

    Lindsey

    “When you pass through the waters, I will be with you; And through the rivers, they will not overflow you.” Isaiah 43:2

  4. Oh Libby, I know I haven’t commented much but it’s 99.9% because I just don’t have the words to express my admiration and pain for you, Tony and your family. I’ve been reading every single post and I’m so sorry about her prognosis. I pray every day for JLK and I truly hope one of the “limited options” will be it for her. Tons of love and prayer for you and JLK!

  5. My heart is breaking for your family. She is so beautiful with a spirit to match. I hope for many more mornings for you all.

  6. My heart is breaking into a million pieces for you guys. I am sending so much love, prayers, and thoughts your way.

  7. As a mama of a cancer survivor I cannot imagine the news you just recieved. My heart is aching for you. If it were me I’d never let go of Pinkie. I’ll be thinking of you and your family. Love to all of you.

  8. Libby this broke my heart reading this. I can’t say I know what you’re all going through because I don’t. But I do know that you have a wealth of family and friends to support you, Tony, and the kids through all of it. Know that we love JLK and all of you. My thoughts, prayers, love and hugs continue to be sent your way.

  9. Oh Libby, I have read this around 3x hoping I missed something . I have no words. Just lots of love and continued prayers.

  10. I am so heartbroken for you. I want to help but I’m not sure how so I’m going to give some unsolicited advice and you can feel free to want to punch me for even bringing it up…but you mentioned cremation and my first thought was LifeGem and the Reef Project (it’s in my will to do both of these things with me when the time comes) – LifeGem takes a few ounces of the ashes and presses them into lab-diamonds. JLK has always sparkled…and the Reef Project will mix the rest into a cement block that gets dropped off one of the coasts to help rebuild the coral reefs… I don’t know if either option resonates with you, but I thought I’d float them out for you. I hate hate HATE that it’s even a conversation you have to think about. If they give you resistance about donating, and there’s anything we can do, please let us know. Keeping you all in my heart, every day.

  11. Libby as I read your post this morning I am both heart broken and amazed at your strength. We will continue to pray for you and your family to have the support, love, and strength on this journey and for JLK to continue to sparkle everyday. Peace be with you today

  12. I am praying. I will pray harder then I have ever prayed. In the meantime my heart hurts for your family. Please let this girl be a miracle and survive and not just a miracle that lived!

  13. Libby, no parent should have to make the decisions you and Tony will have to make. But if I can weigh in on one of them…both my parents requested cremation. They also requested that their ashes be mingled and spread over the ocean in Monterey. At first, I was upset over not having some “place” I could go to to visit and honor them. But then, I realized that they were now a part of the water, the air, the rain.The cycle of life… I bought a small (less than 3″) urn for a tiny bit of their ashes, and when I go, I’ve left instructions for my ashes to be mingled with the bit of theirs. Just some thoughts.

  14. I don’t know you personally. I learned of JLK and your family through my gym, crossfit Solano. I’ve been following your blog and I can’t even begin to tell you how much my heart hurts for you. I appreciate you sharing the information that you do. As much as it hurts, it’s reminded me on a daily basis to take nothing for granted, to count all of the blessings, and to live in the present and I want to thank you for sharing. Your family and JLK are heavy on my heart and I have nothing but respect for you and your strength to get through all of this.

  15. We are so sad and sorry for her pain and for your precious families pain. For all of you we are praying for strength, clearness of mind and for peace in moments it seems absolutely impossible. Let us know if there’s any way you need us to serve you. (Craig and Stacy Littlejohn)

  16. Oh, Libby… I am heartbroken for all of you. I have no words… I am praying that God blesses you all with peace and comfort. I pray for a miracle.

  17. My eyes are welled up with tears for you and your family! You are such a Good Mom and staying so strong for your daughter! I am still praying, God’s holding your family in his hands!

  18. My heart is breaking for you. Thank you for sharing what your family is going through with the world. My thoughts and prayers are with you and your family

  19. Libby, It is so hard to know the right words to say. But I’ll say this…cancer #ucking sucks. (Excuse the harsh language.) Sucks, sucks, sucks…there’s no other way to describe it. There is no way that a parent should have to be faced with this horrible situation. And for a child, that’s just wrong in so many ways. I am so sorry that this is happening to you and your family. I’m so sorry that Jennifer is having her life taken from her and I’m SO SO sorry that your daughter is being taken from you.
    My daughter was diagnosed with rhabdomyosarcoma 2 years ago.
    If there is anything we can do for you, please feel free to contact me. kristincosner1@gmail.com

    In strength and hope,

    Kristin
    Team G Childhood Cancer Foundation

  20. Libby and Tony,
    I was hoping so much you were going to blog that things were at least staying the same. Dang it you are supposed to have at least nine months which seems far too short. You are going with Jennifer’s flow and that’s what you need. can they give her something to help with the vomiting? steroids? zofran?

    You’ve done so much in the last few months, learned things you didn’t want to know, found strength you didn’t realize you had or would need – and are taking us all with you on this journey. Please – I hope you can feel us sending you strength and hope and love.

  21. Oh, my heart breaks for you. I wish there was something, anything I could do besides pray. JLK is blessed with one of the most amazing families around, and I am confident that she feels the love that encompasses her. I pray that you find peace and comfort during this difficult time.

    I know several parents who have lost children have found comfort in having some ashes in their home, and some have also split the ashes and have had some buried and keep the rest. Whatever you decide, JLK will remain with you, in you, forever.

    Much love to you all.

  22. Hi LIbby. We just met the other day at the GF Expo where you shared Jennifer’s story and I had the chance to meet her. I took a moment this am to go to the FB page you gave me and found the link to your blog and read the update. I recall you mentioning that you would hear this week…..

    We have only just passed one another in this life and though it was brief my heart was touched. I know that it is only a small gesture in some ways but in others I hope that it is big and helps. I am sending love and more love and energy to wrap around you all.

    With love…. enjoy and embrace each second!
    Maria Sevier

  23. There are so many questions and answers during this time. My daughter’s hospital made arrangements with St Jude and I had my daughters DIPG donated for research. Live and love every moment!

  24. I’ve been reading along for months now and I was so hoping for you guys to get better news. Sending your family so much love and prayers. Your love for your children and family is so beautiful.

  25. There is nothing I could do while reading this except hug my own daughter tight and cry for all of you. I am so sorry. I pray for all of you every day. For peace and happiness and continued strength and clarity as you face more difficult decisions than anyone should have to bear. My admiration for you and my love and support are coming your way always. If you feel hearing the experience of someone who chose home hospice (we did with my mom and it was the right choice for us) might help in the decision making process, please reach out. I am not going to offer advice because you will do whatever is right for your family as you have time and again in these unbearable circstances. Just want you to know I am one of many people here for anything that might help ease this terrible burden. Hugs.

  26. Wow. Wow. Wow. I don’t know what to say. Except, I am reading, I am listening, I am praying. I am appreciating life and all it has to offer and I am hating what it does not offer to those who most deserve it. Thank you for your raw emotion. You are amazing. Truly.

  27. Tears and a sick feeling in my stomach after reading this. Prayers are being lifted up for JLK, for you, for your husband, and for your 3 younger children.

  28. I first want to say how sorry I am for you. I also want to comment on cremation. We lost our 38 year old daughter 10 weeks ago. I was stunned when she requested cremation. But you can have so many things to “keep her with you”. Her 5 week old daughter, 13 year old son and I opted for a necklace that contains some of her ashes. When I feel sad, I just hold onto the necklaces. No need to go to the cemetery. Our son, her brother, opted for a small urn for his mantel. Her husband is looking for a special urn because she was a paramedic. Just my thoughts. Thinking of you.

  29. There’s nothing I can say that can even begin to ease the pain you must feel… but please know … you have been at the forefront of my thoughts and well wishes – and that JLK has more friends in her corner! My heart is shattered for you. I only wish the tears we’re all shedding for JLK helped more.

  30. My heart goes out to little JLK and your family. I pray everyday for God to give not only her but also your family strength and healing. There is this guy that my husband found out about on tv and the internet and we just had to share. He is suppose to be the world best doctor on cancer and tumors. http://www.burzynskiclinic.com/. I hope this helps and if it’s not applicable for u and your family keep strong and know that God always uses the negatives in our life’s to bring forth something beautiful.

  31. We do not know each other we do have a mutual friend who has blessed me with your blogs. Each time I read them this strange peace comes over me. This need pray for you and to do what ever I can do to help you and JLK into the next journey.

    I am hurting for you and I don’t even know you, I pray for a miracle and for you and your family to find peace and strength.
    I read your blogs as if we were personal friends. Please reach out to me or through your blogs if we as a community can help you. Much love

  32. My heart aches for you and your family, just as it is still aching for my Daughter and Son-In Law who went through this hell last Sept.
    My prayers will be with you and your beautiful little hero. I would like to suggest reading her the children’s version of the book
    “Heaven Is Real” it will comfort you as much as it does her.
    God Bless, Leah

  33. My SIL has been posting about you guys, so I’ve been reading and praying. I lost my son several years ago for a different reason, but I can relate to the heartbreaking decisions you just aren’t ready to make. I stand out further from the loss, and realize that I can offer my shoulder to others who suffer, and I have let go of many petty concerns on this earth because my eyes are focused on heavenly places, where my son runs free and whole. Not that every day things don’t pull on me. I have 4 other children here with me, though to my momma eyes, I will always be missing one. I have a necklace with a heart charm that holds some of his ashes, so I keep his memory close to my own heart. You struggle and suffer now, pray for a miracle. Just remember that sometimes the best healing doesn’t happen here. Don’t give up hope, and treasure what ever comes. Keep your other kids as involved as they can be so they don’t fear or grieve alone, no matter how hard it is for you. Hugs from another mom miles away!

  34. May she entertain angels and may they embrace her pain and fears cradled in their arms while she sleeps and your so eloquently descriptive story of your heartache be soothed by their songs of grace and blessings of eternity for JLK and all of you together.

  35. Love and prayers, dear Libby. Our son Adam (he has cerebral palsy) has a feeding tube. At first I was nervous about getting it for him but I quickly realized how great it is. He can eat while he’s awake or asleep. I can give his meds through the tube. It’s been wonderful not to have to worry if I got all his medicine in or did he eat enough today. Dr. Gary Hartman from Stanford did the surgery. Much love, super parents! xoxo

  36. Dear Jennifer,

    You have the very best Mommy and Daddy in the world! I know you have been personally selected to teach each one of us to appreciate what we have. Thank you sweet Jennifer for the gift you have given my children. I am a better Mommy because of you.

  37. We have never met but your story has found its way to me and our family. There are no words to soothe this terrible ache…only love. It is so clear how deeply you love your daughter and how deeply your daughter loves you and your whole family. That love rippling constantly through your house is holding you close and your ability to enjoy these moments with her are more acts of grace and love. I wish you more days filled with love and peace, more time for snuggling, and many moments of quiet connectedness. Mostly I wish you more time with your precious little girl. ~Beth

  38. I am so sorry to hear of the challenges you are facing with your sweet little girl. Enjoy every day with her, and never give up hope… Miracles do happen. I was going to share the same link, that Cynthia above shared, and then noticed it was already there. That documentary is EXCELLENT. Here is also an article, that talks about the documentary: http://articles.mercola.com/sites/articles/archive/2011/06/11/burzynski-the-movie.aspx
    I have had friends and family “beat the odds” after doctors gave little to no hope. Sometimes you have to find a new path, perhaps less travelled, but our children are always worth it! Never give up… Your family will be in my thoughts, hoping you find a new surge of hope in your hearts, and continue to forge ahead. Sending positive, healing vibes to the Universe for sweet JLK <3

  39. I have been praying for your family since I learned about JLK. I have never walked your journey so I can not even begin to imagine how you feel or give any advice on how to move forward.

    While I can not give you any precise answers.

    I did a quick check of google and did find the following about organ donation when someone has cancer :”Each person’s medical condition is evaluated at the time of their death to determine what organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.”

    I also found “•Organs that can be donated after death are the heart, liver, kidneys, lungs, pancreas and small intestines. Tissues include corneas, skin, veins, heart valves, tendons, ligaments and bones.”

    So while some items might not be able to be donated if she passes at home or at hospice, there might be some items that can be.

    I am also aware that many parents have been asked to donate their child’s DIPG tumor to be studied.

    Please, do not take it as me trying to advise you one way or another. Just know there are options and only you and your husband can decide what options are best for you and your family.

    Please know that there are a lot of us out here praying for all of you and we will continue to be here for you when you want or need us.

    May God give you peace and comfort beyond understanding as you begin this new stage of Jennifer’s journey.

    Much love

    Michelle

  40. Hi Jennifer,

    As a father of a 3 year old I read your blog and my heart is hurting for your family. I know that as parents, our children are what give us air in our lungs and I’m sure the feeling you and your husband have is unspeakable. I want you both to know that many people just instantly became your friends and supporters and your beautiful daughter is in the hearts and prayers of many across the nation and abroad guaranteed. If you ever feel that your family could use some assistance and help to get through this time, my company HealthDonor would love to get involved to take some of that pressure away. Our website is http://www.healthdonor.com. Please let me know if there’s anything we can do.

    God Bless Your Family,

    Andrew Watson
    CEO/Founder
    HealthDonor
    awatson@healthdonor.com

  41. You are such an incredible Mother, Libby! Being so patient and intuitive to what you think she needs. Always in my thoughts and prayers and sending you love from Washington.

  42. Please don’t lose hope . My uncle had a liver cancer and doctors told him he had only 2 months to live five years ago he is still alive, healthy and happy . All he used was honey .. So you can try it as well instead of giving her plain water mix honey in it and keep giving her I know so many people got cured and God will cure her too Amen

  43. Praying my heart out for you and your family. My heart is so sad that you have to experience something so devastating . You are an inspiration to a lot of people, and an amazing Mom, and I know for a fact that God wants you to know that. The way you love your daughter is an example of how all Mom’s should to reflect love to their children . Jeremiah 33:6 states, “Behold, I will bring to it health and healing, and I will heal them and reveal to them abundance of prosperity and security.” I will never stop praying for you and your family for you are stronger than anyone I’ve ever known.

  44. I don’t know you or your family but your story has touched my heart. I am sending you prayers and love. Please believe that GOD has your daughter in his arms. I pray that GOD wraps his arms around you and your family and gives your peace.

  45. My heart breaks upon reading this latest news. Huge hugs Libby. My thoughts and prayers are with JLK, you and the rest of your sweet family. Xxoo

  46. It don’t know you or your family but your story has touched my heart! I am so sorry for the hurt you all are going through i wish there was some way I could take it all away…your family is in my prayers! I know it’s hard at times but remember to never lose hope and always have faith your family and you as a mother are so strong! My prayers are with you and your beautiful daughter

  47. My heart is shattering as I read this. Im so sorry. JLK is such a beautfiul girl. You are so lucky to be her mommy. ♥

  48. Oh Libby! My heart breaks and aches for you.. I pray so hard that you get your “see you in the morning” for a long long time… for a cure, for a miracle.
    My thoughts and prayers..

  49. Hi Libby, I’m Heidi Scharrenberg’s cousin, and a mother of two little boys. Jennifer has big brown eyes like my older son…they draw you in and don’t let go. She seems so brave, and so full of life even in these terrible circumstances.

    My heart goes out to Jennifer and your family.

  50. I cannot express anything that could ever be remotely consoling for you and your family. You’ve made me a better mom and have taught me the wonder of every single moment. I am thinking of you every day – and we’ve never met.

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