Brave

There is a song that I am sure you know…”I wanna see you be brave” are the lyrics. Driving home after finding out the initial results that our first born had a brain tumor that song came on and I sang it loud and told her I thought of this song for her. Back then…a whole 16 days ago I was thinking we might do chemo or brain surgery to get that thing out of her head. “No cure” was never even on our radar…I think I just didn’t even realize that was a possibility. Its a popular song and so it comes on a lot and we sing it together…it always chokes me up. We also love the Roar song…I know I know pop culture fail that I don’t know the name of the song or singer

Fridays treatment went well. Taking the needle out for her port wasn’t bad but all the tape was involved. The nurse was slow and patient but Jennifer “owwwied” quite a bit. She was so excited to get in the car and drive home though. We made it in time to surprise Jonathan by picking him up at preschool. I was surprised by how reserved she was. We even saw one of her best friends and she was clinging to my leg. Driving home though she kept saying are we in Gilroy yet mommy? She loves this town and I am so happy we moved here. When we got into town and she recognized places she said I love it here I never want to leave. I felt the same way, but also overwhelmed, I can’t even really put my finger on how to correctly describe the emotion but I felt vulnerable.

This weekend JLK just had her “bump”. It’s actually the port that is placed under her skin. It’s a triangle shaped device that allows them to access her without IV and constant pokes. Tomorrow morning we re-access it. I hear it hurts and I can see why since the port is under her skin, so they need to put a needle through it to regain access to it. I put a numbing cream on it a hour before the procedure to help make it hurt less….I hope. But she is so tough I think she can handle any physical pain…its the fear of it that gets to her…and in turn me.

Our weekend together went well. Tony and I even got some time alone by going back to our house leaving the 3 big kids with my parents. We saw some friends both days for short play dates. She had a ton of fun but I see how tired she gets. Today we also met with Make A Wish. I was morbidly excited for this. To know we are getting help for a opportunity to pack a lifetime into a far too short time period. Since this is a rushed wish (its so surreal to not only have a child getting a wish but also knowing it needs to be expedited ) we should find out our options fairly soon. Guessing it will be something Disney princess related.

This afternoon/evening was difficult for Jennifer. Knowing tomorrow she would be going back to the hospital was sinking in. Truthfully, not just for her but for me also. I want her to go to radiation I want her to get the best quality of life…but at the same time I HATE it. I hate that she is sick and scared. I hate that tomorrow isn’t a day off from school to sleep in. I hate that this is our new reality. My parents have a huge tub and all 3 big kids were having a bath together. In my new lifestyle of not waiting till tomorrow or “later” I jumped in with them (don’t worry I was dressed) and they loved it. So did I. Why did I wait so long to be this mom? To let things be a mess, to go down all the slides and jump in the tub with my clothes on. I can never get those days back I spent waiting till they were older.DSC_0139

Baby charlotte even got in. Her first bath with all the other kids. She loved it and so did they. I try so hard to be in the moment and enjoy it. And I do…but then the thoughts creep in…Jennifer and I always talked about how she would teach Charlotte to take a shower one day and how to brush her hair. That’s why I wanted sisters so badly. They both are losing that. Those moments I wanted to give and to witness. And I look at her swollen skin slightly bruised around her “bump” but with a huge grin on her face and I ache inside…

Friday night Valley Christian and St Francis high schools played each other. One of my brothers is the VP of athletics at Valley and the defensive coordinator. At St Francis my brother in law is head coach and another brother is their defensive coordinator. So JLK had 3 uncles on the two teams, if you know the last names Scharrenberg or Calcagno that’s us! They got together to honor our girl at the game and send up a football field worth of prayers. T-shirts saying love 4 JLK on the front and her picture and the words we are team Jennifer were made for our family (Kranz, Scharrenberg and Calcagno.)Beforehand they took us up to a room with 3 princesses and a whole bunch of other girls to welcome us. Jennifer got very shy, Jonathan wanted to be completely hidden and Nicholas wanted to join in the fun but copied his older siblings.

We all walked out onto the field together. Standing out there they did a prayer for her.  We were worried about JLK, would she get scared or realize the severity of the tumor. I spent the days before building up to it…talking about how people are praying for her and that fighting cancer is a big deal and everybody, especially her family is so proud of her. Actually Friday afternoon I got so nervous about it I wanted to pull the plug and not come. I was so scared of how it might impact her, but Tony said no this is good and it’s our reality. (he was right) What we failed to do was think about Jonathan and prepare him. During the prayer he started grabbing at his sister, pulling on her arm and looking at her face. Something, though I am not sure what sunk into him about what is going on. I need to be a better mom to him and not forget how much all of this is going to impact him. He adores her and needs her..he isn’t meant to be the oldest in our family. Everything he knows will change. Damnit.

Then the kids ran off to play with cousins and had a blast. After the game we went on the field again. Big cousins playing catch and running with little cousins. My kids running and carefree or sleeping on my chest. And I saw people from the losing team so upset with the loss. And I wondered if things like that would ever matter to me again. Would my sons ever get the mom so invested in the outcome of a football game that will mean so much to them? Will they be forever cheated from that? From the mom I could have been?

And then the song came on again….I wanna see you be brave…and I choked up all over again. My brother walked over and hugged me. I told him how happy she was and he whispered “be brave” Constantly there are moments in this journey I have realizations and I feel like I fall into a different level of acceptance or sadness or just reality and hearing him say that, I had one of those moments. I realized as I look at her and I hurt so much for her…they are hurting for me the same way. Willing they could fix this and make it all better, but they can’t.

I am their baby sister and daughter and wife. They are looking at me and wanting to shout at me to be brave.

I am trying….but I am scared.

11 Responses to “Brave”

  1. Port and child should never go together. I feel for you and understand, as my wife has Invasive Ductal Carcinoma in Situ. She has a port also and it kills me. I am praying for your daughter and hope that all of us will meet one day as survivors, because this is a disease that affects us all.

  2. Oh Libby. I heart breaks for all of you. Please remember it is okay not to be brave 100% of the time, you need time to process too. I was told something by my therapist the other day that resonated with me. I think it will help you too. Did you know that although many people think the pine tree is the strongest tree, it really isn’t. The Palm Tree is. It learns to bend when under stress and strain. Libby you are doing a beautiful job learning to bend. Your children will learn to bend too. Sending you love and prayers.

  3. Libby, I know “of” you through my daughter, Sarah Kingsley. I read your posts and marvel at your ability to be honest about what you’re feeling. Not everyone would have the strength to admit to fear or regret. You are facing the worst possible scenario a mother can face, and yet you are “there”…present in everyone’s life. My granddaughter just turned six, and every time I look at her, I think of JLK. Will be asking for a miracle for your little one.

  4. Thank you for sharing glimpses of your journey with us. We pray with you, for you and stand in the gap when you can’t. We rejoice when you have good moments and pray you through the rest. As you climb mountains, endure valleys, hit bumps in the road and detours, we pray for strength and good memories along the way. You are an amazing family. Much love and prayers sent your way. The Johnsons

  5. My name is Carmen Murray and I was told a little about your precious little girl by a couple of friends of mine thorugh my son’s school ( Danielle Smart and Coyo Andher from Las Animas school). I also am now following your blog and my heart just aches for your family:(

    I am also a local family here in Gilroy and my son Ty is ” surviving cancer” as I tend to say … because he will never be “cancer free” according to the doctors and I really never know what to say when I’m describing our situation. BUT our doctors have declared him ” NED ” No evidence of disease” since 2010.

    Ty was diagnosed with stage 4 neuroblastoma at 16 months old and went through very harsh treatment. Chemo, radiation, stemm cell transplant, antibodies ( that we traveled to and from New York to receive monthly at times for 2 years), surgery etc….He was given a 30% chance to survive 5 years after his diagnosis. Well, he’s still with us and it is 5 years later! He suffers from side effects of his harsh treatment and we know that if he relapses, there is NO CURE. I know that is what you are currently facing, and its absolutely UNFAIR and SUCKS!
    When we traveled to NY we met many many families with children with cancer and found there is basically no money for research for kids cancer…another oncology mother from New Jersey founded a non profit 501 charity called ” Arms Wide Open Cancer Foundation” http://www.awoccf.org to help raise funds for less toxic research for cancer kids….

    I started the California Chapter of AWOCCF last year and we do various fund raisers to raise money for critical clinical trials for ALL types of cancer. I’m not sure if my friends gave you my information yet, but just wanted to let you know even though I do not know you or your family… I am here for you. I know your journey is different but some of the challenges you face I have been through as well. There are also a lot of resources out there for you as well.. JAcobs Heart, National Childrens Cancer Society… just to name a few. Cops CAre Cancer Foundation also hold a yearly christmas event that is fantastic for all kids in treatment.
    Please feel to call me ANYTIME! 408-396-8112 cell… whatever you need..please don’t hesitate to reach out. Thats why we are here…

    You have a true gift for writing and I am glad you are getting things off your chest. I wish I started journaling when we first started on this journey… but you say whatever you need to say and continue to be honest with yourself and friends and family….don’t ever apologize for pushing people away or isolating yourself. No one is walking in your shoes and you will quickly learn who your can truly depend on. This cancer world for kids is sad…and often people are just not going to know what to say or do around you….they mean well, but it’s just something people are afraid to deal with.

    With much hope,
    Carmen Murray
    http://www.caringbridge.org/visit/tymurray
    http://www.thetruth365.org

    ** I’m glad Jennifer has a port. Ty had the hickman line for about a year then we were able to switch to a port. When you put the EMLA on it cover with saran wrap ( press and seal from Glad works best!) and she won’t feel a thing.**

  6. Libby,

    When you titled your post Brave, it made me think of a local video that the pediatric oncology nurses at the University of Minnesota Amplatz Children’s Hospital made: http://www.youtube.com/watch?v=N8xnLkyKgsE

    I love the video and the message it sends out about all the Brave kids who are going through such difficult things, just like JLK is. Hugs to you. You are in my thoughts and prayers daily to help you get through this.

    Nancy

Leave a Reply

Your email address will not be published. Required fields are marked *