Thursday, June 30, 2011

The Roller coaster ride

(James in early March)

I know that Matthew posted about yesterday, but it's 4:00 in the morning and I can't sleep because my thoughts are taking over. I think I am still in shock. At some point I keep thinking that the shock is either going to wear off, or this whole thing is going to be just a nightmare and I'm going to wake up. Neither one of those have happened yet.

Yesterday started out being a good day. Dr. Sacco and his groupies came in early and told me that they were going to take the EVD out in the morning. He had about 10 groupies with him instead of his usual 2-3. They all follow him along like he's the Mother Duck and they are his ducklings, following him in a row wherever he goes. The other day I heard him pass our room in the hallway. He was saying to them, "Now let's go to the office and talk about what you have learned today." For some reason it cracks me up. Probably because he said it very kindly to them all while wearing one of his infamous suits. I call them Pimp suits. Because seriously, no one else could pull off these suits.

My friends Cathryn and Kristin stopped by to see Jamesie. They got to see him without all of his tubes and wiring for the first time! The nurse even said that he might even be able to put clothes on later in the day. I was so excited that I started looking through all the baby clothes that I had brought.

I thought that once the EVD was out, James would begin feeling so much better. That still hasn't happened. He starting throwing up, much like he did before he was diagnosed. Honestly, I panicked. After 3 brain surgeries, I thought that the vomiting had been taken care of. And then I got mad. I mean, could the poor kid just catch a break? Could he just have one day where he felt well?

They are watching the fluid around his brain. If it doesn't go down, they will have to put another drain in (I'm not sure whether it will be internal or external. I didn't even ask.).

When Dr. Klesse walked in, I was just expecting her to talk about the surgery. But when I saw her, I knew that it had to be a rhabdoid. I had started preparing myself that this was the most likely option. I thought that even if it wasn't one, it would be much better to be relieved that it wasn't. I do really like Dr. Klesse though. By the end of our almost hour long discussion, she was crying with us.

Like we've said along, we are going to be positive about this for James. But today it was hard to be positive. Today was a minute-by-minute kind of day. We had to sit and brainstorm what the positive was. Fortunately Matthew's dad, Jim, was still in town and came up with some good positives. I am so grateful that he was still in town. He is a calming presence, and we desperately needed him today.

When Dr. Klesse told us that his prognosis was 50-50, it was actually better than I had been thinking. If you google the prognosis on a rhabdoid, she said that most percentages will show you much lower. But that takes into account that there was no treatment 5 years ago, and we are going to be doing a very aggressive and progressive treatment. I am SO thankful that it is 2011 and we have a hope and a treatment plan. I can't imagine what families must have been going through several years ago. To be told that there is absolutely no treatment plan would be devastating.

It's going to be a long year. I think we will go through the stages of grief and sometimes we will cycle back through those stages. I think today I have been through all 5 stages and have ended up back at stage 1. I spent several hours today begging God to give the tumor to me instead. James doesn't deserve to have to go through this. But the truth is that no one does. No one gets cancer because they "deserve" to, no matter what they have done in their life.

Random things have upset me today. I know that he is going to lose his hair. I have known that for days now. I think I'm ok with that. Tonight I got to hold him on the couch for the first time in a long time. He snuggled up on my chest and laid his head in the little space that his head so perfectly fits. It's the spot where he normally naps (I know, bad parenting 101- I've never made him take naps in his crib. I almost always let him sleep on my chest. I don't regret that decision for one minute.). Parts of his head are shaved right now from the various incisions throughout his head. He has so many at this point, including a large, hook-shaped one in the back from his last surgery. The thing that made me start to bawl is that his head doesn't smell "normal" to me right now. We haven't been able to wash his hair in over a week. It's had several washes of anti-bacterial solution and iodine, but no baby shampoo. Oh how I miss that smell of freshly-washed Jamesie hair! I miss being able to wash his hair and comb it afterwards. I miss being able to give him a bath.

I miss that our typical songs and dances don't make him smile. James is such a happy, happy baby. I have this song that I sing to him when we do diaper changes. It's called "Baby legs" and its sung to the tune of "Baby love". It came about during the winter when the only time I got to see those adorable baby legs was when I would take off his tiny pants for a diaper change. He has this one tiny roll on each thigh- they are the only rolls on his whole body! Normally I sing the song and wiggle his legs in the air and Jamesie laughs and laughs about his baby legs. I so desperately want the baby legs laugh to come back.

I know we are in the best possible place for James, and under the care of terrific doctors. I know that God is the Great Healer, and I know that he can work a miracle through James. I believe that God is 100% in control of James' life, and he knows how all the puzzle pieces fit. I am thankful that on a day like today I don't have to be in control. I am thankful there is a treatment available. I am thankful that we live in Dallas, and therefore James will get to be at home in between his treatments and in his room that he loves. I am so thankful for my church family. I need to write an entire blog about how amazing they have been. I could probably fill an entire book at this point actually. I am thankful for friends that give me faith when I doubt. I am thankful for family that turn upside down their lives to support us.

I know a lot of you keep telling me how strong I am- let me tell you that God has put amazing people in my life to journey with me. I am only strong because I have thousands of you lifting me up. There is nothing in this strength that comes from me. All glory belongs to God because he has truly blessed me with everything that I need. Everytime I needed to hear something one of you, sweet friends, has sent me an email, text, shown up at the hospital, phone call and said exactly what I needed to hear. I don't believe that it is a coincidence.

So I am preparing for the roller coaster ride of a journey we are about to embark on. I know we will have highs and lows. I will rejoice in the highs and the lows, because I am thankful that we have a treatment plan and that we have been given the opportunity to fight. That tumor just better watch out because he was one angry Momma coming after him!

Love you all.


  1. Kara, I'm continually praying for you guys. I'm so sorry about all of this. I know it's going to be a hard year, but I can't wait to see all of the wonderful things that God does through James. James is already touching so many people around the world. Love you girl.

  2. Hi, I found your blog through a friends blog.

    My son spent many months in the hospital, including a month in the nuero PICU. He had 3 separate surgeries for an EVD, he has hydrocephalus. I know how scary the hospital, especially the ICU is.

    Praying for a quick recovery of your little guy. One thing I learned is how resilient babies are...they are amazing.

  3. Kara,
    I am so sorry. I am sending lots of love and prayers your way. My Daugther saw Jamesie's picture today and commented on how adorable he is. She is saying her prayers too. Kids are so tough, I pray this will be a distant memory for him in a few years.

  4. Kara, I'm Jen McCrady's mom... Please know that your family and especially little James are in our thoughts and prayers each day. Remember that God never lets us face anything that we aren't prepared to handle with His help. And, I know that you all have faith that can move mountains, so that tumor better watch out!! Sending my love, prayers and good thoughts your way.

  5. I regularly read Jen McCrady's blog and she has been updating us on your story. I am praying for you and your family from Alabama. I pray that God will be with you during this hard journey and provide comfort for you and your son.

  6. Kara, just wanted you to know that I am praying for you and James and your family throughout this journey. Thanks for your honesty in sharing and updating. Praying for healing, comfort, and peace for all of you.

  7. Our whole family is praying for your and your precious little James. We're adding him to our First Baptist prayer list in Tulsa. Hang in there...God is still in his throne!! Lana Ervin

  8. Hi,

    I am a friend of Jen McCrady, and I am so sorry to hear that James has the more malignant version of the cancer. We will be praying for your family- all the way in England.

  9. Praising God that a treatment plan has come about in the last five years. What a strong little boy he is and when this year is over, what an even stronger person he will be. You haven't left my thoughts yet, Kara. We are praying for you every day here. You are so brave, friend, and I know James' story will bless and change people all over the world.

  10. Kara,
    You do not know me (I think we met once or twice), but we had several mutual friends at Baylor. My husband and I are following James's progress and are sending all positive thoughts your way. You are very strong!
    Sarah (Boswell) Council

  11. Kara, We are Sid and Pam Terry, Shelly Anderson-Terry's mother and father-in-love. We are holding you in thought and prayer as you begin this "roller coaster journey" as you so preciously called it. There will be many ups and downs through out this coming year, but you will be blessed by God's blessing ten-fold. Having raised a chronically ill child, we could not have imagined the goodness in people, of the blessings that God would provide for us! God is good, all the time! Continue to journal and create a small sliver of time for yourself as time allows.

    We will continue to hold you close in prayer!!!!

    Sid and Pam Terry

  12. Hi, Kara. Jen McCrady has told me the story of sweet baby James. I work with her, and everyone in our office is so enamored with him. I will pray for his recovery and for your strength during this journey. --Nikki

  13. Hello. My name is Andrea Skelton. I am good friend of Shelly Terry's from SLP grad school. I can't even imagine what you are going through but so grateful that James has such a terrific, tenacious family, a wonderful medical team and of course the great healer and creator of miracles, God to help him fight this tumor. I have two boys, a six year old and an 11 month old. My baby Alex is just 3 months older than your James. My Mommy heart aches for you and your sweet boy. Praying for James and your family and sending out this prayer request to all my family and friends.

  14. Kara, been praying for your family and thinking about you guys so much! I get teary eyed reading your blog every day because of my own 19 month old son and I can't even imagine what all of this must feel like. I am grateful for your faith, for your family and I'm trusting that God's faithfulness and grace will never fail you. That is the greatest comfort I can offer, but I just wanted you to know that we are hurting with you, hoping with you and holding on to God's grace for you.

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  16. hello! i am cris, one of your dad's colleagues in utmb.
    rest assure that there is an army (at least 500 that i know of) praying for you. the heavens will be shaken by everybody prayers! I have requested prayers both in PR and in TX praying.
    I want to thank you because your faith has made my faith stronger. When i found out about lil dub (that's how we call james...hope u don't mind!) my faith crumbled....but reading your blog has had a powerful effect on me. you are an amazing woman/mother and admire you very much!
    we are praying for a miracle and i am confident that many lives will be changed for the better because of james....just the fact that there are thousands of people that don't know each other praying for the same cause, that is just amazing!
    all the best for you, the lil one and all your family....remember....there is power in prayers!....heaven will be shaken and our Father moved!

  17. hello. stumbled upon your blog, and wanted you to know i am lifting sweet baby james to our lord. may this precious baby be covered by his grace. sending many prayers from arkansas.

  18. Reading this, I'm struck yet again by how sudden it all was. At the same, I still wonder now and then if we ever got off the roller coaster.

    Jen: Thank you for all you've done.

    Heather: I am glad your little one is well, and they are quite resilient.

    Aubrey: Your daughter's right- he was adorable.

    Kim: Thank you.

    Newlywed: I think god was with us, but that he sometimes surprises us.

    Liesl: Thnk you.

    Lanaosu: Thank you. I am amazed by how many prayer lists James made it on to. It's humbling.

    Will and Vanessa: Thank you. James was partially named after place in England.

    Yartyms: It is good thst there's a treatment plan, but we're always hopeful there will be better ones.

    Sarah: Thank you for your thought and prayers.

    Sid and Pam: Thank you very much.

    Nikki: James was easy to like. Thank you,

    AndreaS: Thank you for following us.

    Jeff and Erin: I hope your little boy is doing well.

    Cris: Thank you for the recruits.

    Kimberly: Thank you for praying for James.