back

Hopefully I can keep this entry short. I am not feeling great. . . and although I don’t believe in getting sick I am scared I might be.

Today she was still very “methadoned” this morning. Its so scary to see her like that. Eyes half open. . totally out of it but aware. We won’t leave her alone for a second when she is like that since I know she hates the way she feels. She came around a bit faster today though.

I offered to take her in the rain. She said yes…wait no she didn’t say yes. She doesn’t say much ever anymore. But we communicate so well. Somehow even just a slight movement of her head I can tell what she is trying to say.

mother daughter bond I am so thankful for..

See and hear her just being goofy

I miss this voice…this attitude and personality.

So she signaled yes to the rain…but when Tony went to move her she swatted him away. We figured she wasn’t ready to move. So I snuggled her some more in bed. Then she agreed to a movie but when I went to move her she swatted me. Tony came back and we switched again. eventually he got her out to the “dance room” and got a movie going.

Later when the nurse was here I found out she didn’t want to be moved because her back hurt. This girl of mine never complains of pain so I imagine its pretty substantial. . .

and not new.

It could be positional. . . like it aches from a position or not changing up positions enough.

Or its tumor. That mystery one growing in her spine.

I run my hands along her back now feeling every bump thats supposed to be there  (though never jutting out like this) and I am wondering if I will soon feel the one that’s not.

Dr Partap was surprised that Jennifer had not already been complaining of back pain.

With the nurse we talked about how the vomiting is getting worse again. We aren’t sure if its because I have pulled back a little on the anxiety meds….but she fights me on taking the higher dosage…hates how it makes her feel. Or if its pressure in her brain.

We are going with pressure and she got a IV dose of steroid. While she was getting it we gave her some smoothie to drink.

SHE DRANK IT…and kept it DOWN!!!

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She had a bit more later in the evening and that came up after about 30 minutes. But I still think if we can get her just a little nutrition we can borrow a few more good days with her.

We also had to de-access her port. She hates it so much. Her port is a triangle device in her chest…and when accessed shehas a needle with tubing hanging out to give her IV medications.

The part of taking it out that she hates so much is the sticky tape rectangle covering it. Through radiation we learned some tricks. But none of them worked today. She screamed and screetched and even kicked. But tried to so hard to get calm and take deep breathes. I hate hearing her so upset.

Through this journey the sounds she makes impact me so much. Perhaps its because so few sounds come from her now I hate that most of them are pain and discomfort.

Like when I put in the suppositories. .  Its a gasp . . even after all these days…(I think tomorrow is a week) of putting multiples ones into her she makes a noise like its still a shock to have mommy doing that to her. At night is the worst because sometimes she is still pretty asleep when i do it.

I hate that noise…..

I will miss that sound….

The rest of the evening was spent snuggling watching movie after movie.

We like Disney. .

but I have noticed a disturbing trend. So often characters die, or at least we the audience are lead to believe they die only to come back again…

For her I guess its ok…maybe…?

But my other kids . . I think I will have to be very conscience of what they watch.

Because once she is gone from this earth, once her body stops working. .

. .  there is no fairy tale ending for my family .

she is never coming back.

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39 Responses to “back”

  1. Just wanted you to know that…….so sorry, I don’t know what I want you to know. I just want to say……I don’t know that either. I think of you all constantly. Please know we all are aching for you and care so very much.

  2. I just want you to know that your family are in our prayers and to reassure you that the Lord is there with you, comforting you and giving you the peace and grace to make it through. Just call on him, he is there and always will be. God loves you all so much. Your daughters’ story is heartbreaking, I can’t imagine what you are going thru, but a lot of people are praying for you all, and we will continue doing so. Just call on the Lord, he will get you thru this. Keep this in back of your mind, she won’t be able to come back but you can go to her when your time comes.

  3. Heaven is our “happily ever after” place. I wouldn’t want it on earth because earthly life isn’t eternal. You’ll all get your “happy ever after as a family” The best things in life are worth waiting for. Love you!!

  4. Thanks for sharing the pic of your Little Jennifer smiling. A beautiful pic. This is the image I play in my mind of her often! And I will continue to do so, just like I did when praying for another Sweet Child who went through a lot of very difficult days also. As matter of fact weeks! My prayer for Love4JLK (Sweet Jennifer) is that she will “come back” to being her precious Sweet Self again, just like Little Hazel did. I’m so thankful I can say that I received a note two days ago about Little Hazelnut (as she is so affectionately referred to by her family) that she is doing well and CA free. I’m still Praying for Sweet Little Jennifer to be Healthy, Happy and Smiling again!!! Hopefully soon! Just like Little Hazel is doing now! HUGS, Lots of Them.

  5. Your family is in my thoughts all day long and I pray for all of you. I wish for as many minutes, hours and days with her and know that you cherish them all. We love your family and are here for you all.

  6. Hi, I’ve been following your story for quite sometime now. I’m very sorry you guys are going through this. I have a tip that may very well be useful for you. My daughter had a broviac line and a pic line when she was a baby, and always hated the removal of the tagaderm (sticky rectangle covering). Once, she was coming out of surgery and a nurse was changing the dressing using an adhesive remover (we were at LPCH), we aske for some to take home and they happily obliged. Perhaps you can call up there and ask for some for you guys as well. I’m also going to try to get my hands on some for you too. Prayers and hugs your way.

  7. I have read every word you have written since you started this blog. My heart breaks for you. I pray for you, your family and JLK many times a day. Your strength is inspiring. JLK’s strength and courage is mind blowing. Even though I don’t know you, I wish I could just give you a big hug and cry with you. Sending love and healing thoughts.
    Fuck cancer. Big time.

  8. Your blogs are so captivating! You have managed to capture Gilroy and beyond with your boldness and truth. Have you told your glitter girl that she will live on forever like a fairy godmother granting wishes a cure will be bestowed upon other children because of her. Your blogs are giving such in site to this disease that no one could possibly understand unless they were in your position. I think everybody reading these feels like they are loosing a child with you. Which is what makes this so strong and powerful! I am sure you will meet the President and that the funding in Cancer will change in the name of JLK. The world will know her name and good will prevail in the end because of your Braveness. Tears are falling while I write this. My heart breaks for you all! My prayers and hugs go out to you and your family. You have started a movement Libby. No longer will I sit back and do nothing, we will make a change for JLK

  9. I heard about your story through a friend, and have been reading for a few days now. I’m so sorry your family has to go through this. I just wanted you to know that all of you are in my thoughts and prayers. I fell asleep last night thinking of you, and I woke up thinking about you. Hugs, my friend.

  10. You are being the perfect mama to Jennifer… and to your boys. I hope you know that what you are doing is perfect for all of them…. God bless you.

  11. Your family is beautiful and JLK is so brave and it hurts my heart to think of her suffering and as a mother I can’t imagine how you and your husband get thru each day. I wish I had words of comfort but I can’t believe anything would comfort you. I just wanted you to know prayers are being said for your family. You guys are in my
    thoughts daily. I cry with you and I am mad with you of the unfairness for JLK. God be with your family during this time and the years to come.

  12. I watched her cute video and it made me laugh. I hope all her captured moments will bring you laughs, smiles and warmth in your heart.

  13. Just first of all have to say what a proud mom
    You must be!! You have. Beautiful family!!! I do my know you personally but thru a RN that I work with at Alta Bates! Your blogs are so raw and well written. I lost my Dad from diagnosis to 6 weeksatrt Turing off like support. We felt so cheated … Then I look at beautiful lil JLK…. So unfair to happen to a child. Cancer has robbed multiple people in our family and it is an evil beast. Enjoy … Love… Everyebt you have with your precious girl. Your family has been thru so much in a short amount of time and I’m so very sorry for this!! JLK is a lil rock star going thru all of this! Know lots of people who don’t know you are still
    Praying for you and your beautiful family!’

  14. I read your blog everyday and wonder where you get your strength and your will to do anything. I think I would be in a constant world of despair wondering how I would survive without her. I am so sure you have these feelings to but because you have another 3 children you are responsible for you have to function. I am so praying that God continues to give you the strength each an everyday to get through all of this. Besides that I pray he embraces you and your family each and everyday and night and gives you the comfort you need while you are going through this helpless situation. You and your beautiful Jennifer and the rest of your beautiful family are in my prayers and I will continue to pray for Gods mercy and for him to reveal himself to you with a miracle for your little princess. God Bless you Libby you are by far a very loving and strong mother. HUGS to all from me and my family.

  15. sending you support from nyc. our dear friends started cookies for kids’ cancer. our family is actively involved and will keep your sweet daughter in our thoughts as we continue to fight the monster that is childhood cancer.

  16. I just wanted to say how sorry I am. No parent should ever have to go through this. Your strength amazes me. Please know that you are all in my thoughts and prayers.

  17. It totally sucks that you’re hoping to “borrow a few more days” and I HATE it for you . . . for Jennifer, for Tony, for the kids, for every single person who loves JLK and her family. No, there is no fairy tale ending here. Thankfully, you can keep your own tales of precious Jennifer going through sharing your photos, memories, and more with her and the rest of the world.

    We are still with you and will continue to be.

  18. I cry and my heart aches for you and your baby girl. I read your posts and I pray with a knot in my throat. You are something magical, a true hero to your little angel. God Bless you and your precious family, may he protect and comfort you always.

  19. You are all so strong…including your sweet little girl. What a strong, brave, little lady you have raised. I am so sorry….prayers.

  20. My heart aches for you, your family and your beautiful, brave and amazing daughter. Reading your blog gives me so much gratitude for my boys and my life. You see, I am a single mom and have been for awhile. I sometimes get depressed about raising boys to men, being the sole supporter, mother and father. I worry that I may not be doing it right, not giving them enough attention, not teaching them the values of being good men. But then I pause here, on your blog to read your final moments with this sweet angel and I weep for you. I am so sorry you have to go through this. I am grateful for my life, my boys… The moments I share with them. I won’t ever know how much time I get with them but today we are all good, perfect, healthy, loved…what else really matters? You haven given me new eyes to view my life, the world and I am so thankful for you and JLK. I am praying for you, your family, JLK. I am signing petitions and spreading the word of pediatric cancer. Please know you are all deeply loved and surrounded by God and the angels. I wish I could help you more. Much love and peace.

  21. We are friends of friends of yours and have been following your story and sending you positive and healing energy during this horrific time in your lives. I hope that you will keep her little pink bear always as I honestly believe that the child’s spirit and love — just a small bit of it — can reside in those childhood treasures. May you find what peace you can during even a few minutes of each day.

  22. For months I have been in constant prayer for your family and I check in every day to see how you and sweet JLK is doing. I’m really proud of you and your family and the courage you exude each and every day. Know that people are praying. Know that people care. Know that JLK will never, ever be forgotten!!!! She lives on in so many of us now. The way you mother has taught me to be a stronger, more intentional mother.
    You are not alone…. ❤️

  23. I love you guys so much and I don’t even know you. I twittered Ellen and posted your plea on her page yesterday. The day before i wrote diane feinstein. I just don’t now how you are doing this but it’s remarkable how strong you are staying for her. We are all praying for a miracle- her picture when she was well makes my heart hurt because of how she is now. I hate that cancer and the medications are doing this to her- making her unable to talk- making her personality different. I read this blog everyday Libby- Jennifer and your family and your struggle has changed my life. So much love and a HUGE bear hug to you and your girl.

  24. What a beautiful picture of Jennifer! I just sat here and stared into those beautiful brown eyes and golden hair and then felt a tear fall down my cheek. I’ve been praying for your family for months now, I posted the link you sent out yesterday on twitter yesterday, I wish I could do more. You’re a strong woman and I’ll continue to pray for more strength your way 🙁

  25. I just read your journey … all of it. I wish I could think of something wise or uplifting to say but I am speechless and overwhelmed. How do you do it? I will just say I am thinking of you. Sending you ♥♥♥ and prayers.

  26. Prayers for you and your sweet angel..when you hug her at night give her an extra squeeze for me let her know im thinking of her…big hugs and prayers sent your way..

  27. As a mother, I can only imagine the personal pain you and your family are suffering watching your beautiful little girl go through this terrible illiness. I’m sure you are doing everything possible for her but if it was my child, I would go to St Jude’s . The advancements they have made in the treatment of cancer in children is amazing. They take all children with or without insurance. I will pray for your family.

    1. We got a 2nd opinion there, they are amazing. Stanford is one of the leaders in DIPG (our daughters tumor). Part of the struggle with pediatric cancer is they are all unique so no one place or treatment can take care of all types. DIPG has no cure…there is only one treatment option that is not a clinical trial so for us…staying near her family is what made her treatment time quality time for her. Thank you for your prayers.

  28. Unisolve is what you want. It is sold in individual pads like alcohol wipes. You wipe it over the sticker and it breaks down the adhesive and after a few minutes it will just lift off. Ask your nurse about it or I can get you some. I pray nightly for your beautiful family!

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