sisters

The day after Thanksgiving, me, Tony and the girls woke up early to get to Stanford for treatment. It was a special treat for Jennifer to have Daddy there with her. Since it was the day after a major holiday it was a smaller crew and people we didn’t really know. (all still amazing) The surgery waiting room where we traditionally wait wasn’t even unlocked. So we waited out front of recovery for her to be wheeled past us.

Jennifer and I have become surprisingly comfortable within the walls of our piece of this hospital. Its the halls that get me though…they are what bring me back everyday …sometimes just a fleeting moment…but every single day I remember the first time being there. I look down the hall to where they took her back for the MRI and I long to go back and erase it …When I look that direction it all seems so far away yet so familiar. Maybe since I was so turned around that first morning and it seemed like I was going down endless hallways. Only now to understand its all in the same area…I just couldn’t tell that in my fog.

Trapped in the hallway I can’t help but vividly remember the nervousness and confusion. Waiting in recovery after the first MRI, jumping everytime the door creaked. It was a a weekend so no other family was in there. I remember being so convinced everything would be fine since it took so long, I figured they must be doing the lumbar puncture which was the 2nd step if the MRI was clear. They let us all come to recovery since we were the only ones there. They ooohhed and awwed over the baby. Then I asked about the puncture and we all knew when the nurse happily said they didn’t need to do it. (she had no idea) but we couldn’t look at each other any longer. We knew…well we thought we knew…really we never knew a tumor that turned her eye in could be this……

We met with the drs all in the circle in what I now know is the pre-surgery area. These places I know so well now and find myself comfortable in…still send chills up my spine when I remember.

IMG_2819So often people talk about how hard it must be with a baby attached to me during this time. There are moments for sure. But days like today I realize what a blessing it is.

Back to friday, day after Thanksgiving. Waiting in those haunting halls things were taking much longer than normal. Tony and I were both fidgety and nervously trying not to be nervous. Eventually I got so antsy I walked the path back to the Cancer center where radiation happens and I leave her. They were just wheeling her bed in the elevator. I asked the dr how she was doing and she said “Not well we had some breathing issues.” That familiar spinning head feeling returned. Because of her cold when she was sedated and positioned she couldn’t breathe. They took off the mask gave her oxygen and tried again. Eventually it became evident this wasn’t going to happen so they cancelled radiation.

Once we knew she was ok we asked if it was bad to skip 4 days in a row of radiation. Weekend and Thanksgiving along with this cancelled day. It was so we brought up coming in on Sunday for treatment. They planned to talk with the head radiologist and get back to us. The call came and said they would hold off till monday since her oxygen levels dropped enough they weren’t  comfortable trying again over the weekend with the skeleton crew.

Back to today (and having the baby with me). Today I got a call in the waiting room from JLKs nurse to say they were having the problems again but they didn’t think it was cold related, it was actually her positioning and the mask itself compromising her airway. I was scared. Scared that she was struggling to breath and even though asleep might have some memory of it…scared to miss another day of radiation…just scared.

But since I had the baby I had a brother of mine there with me to be the “Charlotte cuddler”. They clipped the mask a bit and she did get treatment…but in that unknown time having him there was a gift.

Driving here today from home Jennifer cried off and on the whole way. IMG_2818What gave her comfort was being needed…when her baby sister started to cry she dropped her own sadness and comforted Charlotte.

Waiting for my brother we laughed. The 3 of us girls… at stinky feet and pretending the baby was walking to go find her Uncle…And Jennifer held her sister and talked to her and laughed at their mommy together.  I so desperately wanted JLK to have a sister to laugh with and learn with. Though expedited we are taking this time to make those memories…and build a lifetimes bond.

IMG_2823After some relaxing we walked together to the park. Charlotte sat in the stroller the whole time. Freeing me up to have my time with my oldest. We went up the structures and back down. Did some spinning  and played in the sand. We worked together to draw names, dig holes and build towers.  And I watched her play. I tried to absorb her movements and the freedom that being 6 at a park is all about.IMG_2824 IMG_2837 IMG_2827

 

 

 

She changed outfits to match what we were about to do the entire day. Jammies for treatment. Fancy matching dress for our tea party. Sparkly skirt for the park…It was fun to watch her be a little more JLK today. She has always been quite the fashionista.

Since its her left eye that turns I always assumed it would be her left side to fail her. But at the last oncology appointment I found out it will be her right side…her dominant side. For the first time since she was 2 she needed my help to button a shirt. My girl that can close buttons on her back needed my help..she didn’t seem too bothered…but that time will come. When she cant make it up the slide…or run with her brothers…or dance…or walk along side of me. I was preparing myself for that. But losing her ability to write and color and feed or clothe herself easily…Today was my first glimpse into this portion of DIPGs cruelty.IMG_2842

And then she was done and together we walked back. I taught her how to miss all the cracks walking down the sidewalk and that somehow turned into us weaving right and left down the sidewalk. Mother and daughters just being us.

Charlotte is the release Jennifer needs right now. Just enough to take some of the pressure off of her. And give her the innocent gift of someone who needs her help…and mine too…

A day will come when Jennifer won’t have the strength to hold her baby sister anymore…then a day will come that she won’t have the breathe to sing to her** JLK sings to newborn Charlotte ** and then Charlotte will lose the best friend she will ever know.

Today though….today she did….today we did…Tomorrow we remember.

11 Responses to “sisters”

  1. Libby, thank you for sharing. That video was absolutely precious! Charlotte is so lucky to have her, and that you captured that special moment, I’m sure she will cherish forever! Lots of love and prayers your way.

  2. Continuing to pray for a miracle. I get the losing a sister, this was one of the biggest heart breaks for me. Although it is a tough road you’re on, so glad you are able to truly enjoy every moment your kids have with each other.

  3. Sill praying and spreading her story! Cherish every single second together and remember there is nothing our God can’t do! Prayers and love to you all!

  4. I wish from the bottom of my heart that you, Jennifer and your whole family did not have to go through this and that a miracle will happen to change the course of this disease. Thoughts with you, Jennifer and your whole family.

  5. JLK and C are so lucky to have each other, they are the biggest blessings. I still am hoping for some miracle for you guys.

  6. Praying for Jennifer and your whole family. You are so wise to share the journey in this blog. Jennifer is lucky to have this family and you are blessed to have her.
    There are no words to comfort you. It is a dark and scary road you travel. I hope it is helpful to tell you I pray for you everyday. There are so many people giving support, but it is your shoulders weighed down. I send my love.
    Keegan and Damian’s Meemaw

  7. oh my. that song is the sweetest thing i have ever heard. my favorite/saddest moment in Dumbo…. how wonderful that you captured it… and that she knew the words and sang it to her baby sister.

  8. Such a precious video. I am sure Charlotte will treasure it forever, as I know you will. Prayers a million times today, and every day, for your family.

  9. Found your website after reading the interview you have to People Magazine about Embryo adoption. I was intrigued and looking to perhaps learn more about it, when instead I’m finding myself lost in your blog, reading about your amazing daughter and the journey your family has gone through as she battled her brain tumour. It’s so heartbreaking, yet I so admire you for sharing your story so truthfully and honestly, as it helps bring more awareness to pediatric Cancer, and DIPG, which is so desperately needed. And despite not knowing you or your daughter what so ever, even from these blog posts, you can tell what an amazing, special little girl she was. Reading about her bond with her little sister is just so unbelievably touching.

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