Friday, July 8, 2011

What are you waiting for?

Now that we are going on day 15 at the hospital (with tiny interrupted visits at home), we have been watching a TON of movies! James is now well versed in some of Disney and Pixar's finest creations. Matthew and I didn't really have a large collection of kids dvds so we are adding as we go along. One of our newest favorites is The Incredibles. Do you all remember that movie?

There is one part in the movie that always strikes me when I watch it (which has probably been about 10 times so far :) ). Mr. Incredible is coming home from work at his normal day job. He's frustrated, burned out, and searching for some sort of meaning. A little boy on a tricycle is sitting on front of his house. Mr. Incredible asks, "What are you waiting for?" The little boy answers, "I don't know. Something amazing I guess." Mr. Incredible shakes his head and softly says, "Me too, kid."

I think this sums up where I'm at most days. I'm tired, frustrated, and searching for some sort of meaning in all of this. I'm waiting for something amazing. Some sort of miracle to happen for James. During my lowest times, I cry out desperately for God to give some sort of divine intervention that will cure James from the cancer and to change the mutated cells in his tiny body so that even when the tumor is gone, he will no longer be at risk for developing it again.

But then, usually with the help of sweet friends, family members, church clergy, or the kind chaplain at Children's that we have grown to love come to me and remind me that we have truly seen miracles for James. James himself is a miracle sent directly from God. I believe that about every child. When you think about it, how does this tiny bean-shaped cluster of cells form into the most beautiful creature you have ever laid eyes on? How can that not be a miracle?

James' tumor was 95% resected (taken out). What a miracle that was! What a miracle it was that his tumor was operable. And isn't it a miracle and blessing that there is a treatment protocol that gives James the chance to fight. It's a miracle that his cancer hasn't spread to his kidneys or his spinal fluid. It's a miracle that he is still able to smile at us. It's even a miracle that he can cry and fuss! I would have never thought that I would be so thankful for a fussy baby!

I have learned so much from this experience already. I have learned that every precious second is a blessing. We aren't promised tomorrow. We are only given the present, and it is our choice what we do with it. I just really want to encourage each of you to take the time to thank God for the many miracles in your life- many of which you will never even know about! Who knows how many times that we are frustrated about driving behind a slow car that ultimately would save our life?

Although I am praying for a HUGE miracle for James, I am also cognizant of the fact that God is guiding the hands of every doctor involved in James' care. After 52 weeks of chemo, when James is better, it will truly be a miracle that he is healed. I truly believe that God works his miracles through many different venues. And we are ok if the route he chooses for James' miracle is through modern medicine!

So look for the "Something Amazing" in your everyday life. I promise that if you keep your eyes out for it, the little miracles will reveal themselves to you.

Thank you for continuing to pray for our sweet baby. We do have some specific prayer requests, and we would love for you to pray specifically for these things!

  • For James' nausea will begin to subside so that his vomiting will stop.
  • That his spinal fluid study that he is undergoing right now will come back positive. This study ensures that when the chemo is injected into his spinal fluid (through his spine) that it will go to all the areas that it needs to.
  • For peace and understanding. James can't understand what is going on, and it's hard for us to explain to him. Please pray for peace as he endures so many tests and he begins chemo. I can't imagine how scary this is for him.
  • That the first 2 rounds of chemo will be very effective. At the 6-week marker we will have another MRI and we are praying that it shows that the tumor is completely gone! If it does, we will not have to do any radiation therapy. Radiation on an infant's brain can inhibit their mental capacity. Even though we would be using a Gamma knife that can pinpoint to 1mm, it still leaves room that some of his brain cells could be damaged. So please pray for NO RADIATION NEEDED!
  • Patience. I am probably the least patient person on the planet. Please pray that I can have patience with those people I come in contact with, and patience to let the drugs work. It's hard for me to let go of the control!
Thank you, dear ones.


  1. Hello! We have never met, but I go to church in Tulsa with your sweet mom. I have spent the last half hour reading about your beautiful James, and wanted to add my commitment to pray for all of you. You are blessing more people than you will ever know as you share of your faith and the strength of our God. I pray that you will continue to feel the warm comfort of His arms wrapped around you on every step of this journey.

    Chrissa Ortega

  2. i will definitely pray for those specific requests. love ya!

  3. Amazing things are hapening Kara. Praying for James every single day.

  4. Prayers going up for you all. Your little son is being lifted up in prayer by so many....I have never met you....I go to church with your Mom. Thank you for sharing your journey.

  5. Hi I found the link to your blog on the CBTRF site. We too have a baby with a Rhabdoid tumor (although our daughter's was even more rare and not found in the brain rather on her skin). She was diagnosed in April and has received 4 rounds of chemo. I read that your son will start chemo next week. I wanted to encourage you that our daughter has so far tolerated her chemo regimen extremely well and had minimal side effects. I pray the same will happen for your son.

  6. Hey!
    I came across your blog through a friend's link on facebook. Just wanted to let you know that I am praying for y'all and your sweet, precious boy every day.

  7. We continue to pray daily for your family.

  8. Thanks for your beautiful writings. we are praying hard for you and that beautiful boy.

  9. Prayers going up for your family.