nine

9 months.

I just need to write it. Those words… to get it all out.

If you have googled or read my link then you know the average life span for a child after being diagnosed with DIPG is 9 months. On her birthday when we were first given the prognosis we were told 1.5-2 yrs. That was horrific enough.

Last week when she was inpatient we met with her oncology team again. We discussed her life and our lives and our plans. Of course there are exceptions…and we all hope our daughter will be one of those…but no way to know.

She is struggling. She is so tired. Her eye is getting worse and now her walking is being impacted. We are scared. Desperately scared.

I am surprised by my reactions at times and often ashamed by them. Bitter over Batkid. Longing for a bald child in chemo. And now hoping for 9 months.

9 months.

 

18 Responses to “nine”

  1. Dear Lord Jesus please give Jennifer a miracle.. Send your Angels of Love to protect her, comfort her and be with her.. Please Lord help her through all of this and allow her time.. Lord please be with Libby, Tony and the remainder of the family.. You promise you will not give us what we cannot handle, Lord this is to much for Jennifer and all of us.. Please show us your miracle and help her recover, heal and have the life she should be allowed. In your name Lord I come to you for mercy.. Amen.. I love you Jennifer, Libby, Tony, Jonathan, Nickolas and Charlotte I will not stop praying and begging for help… In my heart and thoughts always!!

  2. Great big hugs! My first experience with DIPG was with my neighbors son. They chose to forgo radiation as their son was soooooooo frightened and so they just used steriods to slow progression and they were able to never have to return to the hospital again after he was first dxed. He lived… well less than 9 mo but he got a last Halloween, Thanksgiving and Christmas after dx and he had very little pain. One family I was following I believe they found out on a Friday and their precious daughter was gone on Monday! They had one last weekend together, not knowing it would be their last. That was completely mind boggling for me! Since then I have made DIPG a cause close to my heart and shared the journey with a handful of families as a supporter. I so wish there was more that I could be done. There is a gene therapy being studied in AUS but it is just in its infancy as far as I am aware so the fact it is looking promising there is not of much solice to those in the US 🙁 I hope radiation is successful for her and is able to buy you some time once she gets over the initial icky feeling from it. xoxoxo

  3. Libby, I am so sad over Jennifer’s diagnosis. Cancer is so awful (having lost my mom to it.) I am praying for you all.

  4. You are not alone, although I am sure it seems that way at times. We are sad with you, and scared with you. We ache for Jennifer and pray fervently for her strength as she fights her valiant battle. We plead Heaven on behalf of your princess warrior.

  5. We can’t begin to know how you must feel right now, but our hearts continue to ache for you and your family. You are an amazing mother. Every day we pray for you and hope that Jennifer is an exception. Nine is so unfair, I wish so badly she could have 1000 more. Sending much love <3 <3 <3

    1. my husband was diagnosed with cancer 1 1/2 years ago. we always had the “quality vs quantity” discussion. go with your heart. whatever your decisions are, you’ll want to look back and know you did the best you knew how. please know you have people like myself, whom you’ve never met, praying and standing with you and your beautiful family.

  6. You do not know me…. I do not know you…. I am following your story from Nebraska. I check this site everyday for updates. Your story has deeply impacted me. I have children of my own 4 and 1. Your story gives me a harsh reminder EVERYday that things could change in an instant and to be thankful for the gifts God has given me. I have shed many tears for you… I am praying, praying, praying A LOT for your little girl and for your family. May God continue to give all of you strength. Here is a quote I came across on pinterest last week. It made me think of your daughter right away and then I thought of my own children. Such a sweet but true reminder…

    “You will never have this day with your children again. Tomorrow they’ll be a little older than they were today. THIS DAY IS A GIFT. Breath & Notice. Smell & touch them; study their faces and little feet and pay attention. Relish the charms of the present. Enjoy today. It will be over before you know it.”

    Just like the Bible verses and tv shows you watch that can be so difficult to watch or read right now, how one day the verse means something different to you than the next…. I feel this quote probably means SO much harder for you than I am sure me right now. But, because of your current life experience, you have changed the way I parent…. the way I view life… and my kids. I am trying to pick my battles more and to not fret over all the small stuff my kids do to “annoy” me, but instead to be thankful.

    God Bless.

    ~Karen

    1. Absolutely Karen… I think there are many of us that feel the same. I can’t help but think that the journey nurturing, motherly JLK is on is making countless of us better mothers everyday and touching the lives of so so many kids. Praying always… many hugs and tears…

  7. I’m so sorry Libby. It just isn’t fair. Praying for more time, for a cure, for high quality of life, for packing a lifetime of joy into however much time there is. Praying for more.

  8. ah. wow, it is just so frustrating. heartbreaking. maddening. I just saw a commercial where the leukemia survival rate in 1964 was in the single digits and now it is in the 90’s. Improved survival rates have to start increasing somewhere. i want for it to start with JLK! Love you guys…
    –dd

  9. Libby,
    All I have are huge hugs, and a boatload of prayers. I hope and pray that Jennifer gets lots of time, I pray she gets over the icky radiation and the tumor has shrunk. I hope you get to make many more sweet memories with your girl. <3

  10. My heart and brain are heavy thinking of you and your family. Please do everything you can to take care of yourself in this medical marathon you have been given. I am so sorry.

  11. Libby,
    No words I can say will give you solace- I wont pretend they will or that I have an answer. I’m sure you feel helpless and angry and overwhelmed and terrified and loved and hopeful and heartbroken, and probably a thousand other emotions in between. Please remember in all of our darkest moments we are not alone. Not you, not Jennifer, not Tony, or your other children. Don’t stop writing. Keep records of your moments and your feelings no matter how hard. You will want to reread these post someday. I can say without a doubt you have changed my view of what it means to parent and be in the moment with my child. I am positive you have changed many others as well. Sending you all love all of the time..

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