Tuesday, July 12, 2011

Day Twenty

We spent most of the day angry. Yelling at doctors. Trying to impart our sense of urgency in them. Begging for tests, for answers. We yelled. We cried. We pulled all the strings we knew. And none of it matters.

The only thing that matters is the news. We got the MRI. James' tumor is back. All the way back. It's filled the space left from when we removed it, and spread like tendrils from a wildfire through his brain, coating the top of his brain, clustering around his brain stem. The images are vivid and terrifying. And it all happened in two weeks. Two weeks ago, James had a successful surgery. Today we learned in the time between that surgery and the date scheduled to begin his chemo, his tumor has not only returned to full strength but actually become worse.

Rhabdoids are extremely aggressive tumors. James' tumor exists in the most aggressive category of rhabdoid tumors. Our oncologist was genuinely surprised by how quickly this happened. You could see it in his eyes. This changes our landscape, and our world. We now have two options. The first is to take James home, to make him as comfortable as possible, and try to show him just how much we love him in the time we have left. For that, the timetable the doctors are talking about is expressed in days and weeks. Eventually the tumor will damage his brain stem sufficiently that he will simply stop breathing. The other option is to immediately begin chemotherapy- another surgery to remove the tumor would be pointless, as during James' recovery time the tumor would revive itself completely as it just has. Our oncologist expressed extreme skepticism about the usefulness of chemotherapy at this point- given the aggressiveness of the tumor, any gains would likely eventually be erased. Of the children he has treated with tumors similar to James', none have survived.

They asked us for a decision. We couldn't make one. We asked for the night to decide. It's the longest we can wait to begin chemo if we are going to do that- every hour, every day matters. On one hand, for James in his current condition chemo means chemo in the PICU, remaining on the ventilator, and getting sicker. Possibly sick enough to where when it becomes clear that the chemo isn't even buying us time- the most it could do- we won't be able to take him home. We'll lose him here. Home means we'll watch our son die in the room we decorated for him less than a year ago, in the convertible crib that never made it to the a toddler bed stage. There is no right decision. There is no wrong decision. We're beyond that duality.

We don't know what we're going to do. We feel like we're being forced to choose between making James suffer and giving up. I abhor both. We were prepared for a war, for a marathon of chemo and a devastating year of trying to make James better. But we never even got to fire the first shot. James is our perfect angel, he was born perfect in every way, and he remains perfect. Even now, with everything he's been through, his natural resilience remains. He holds on tight to your fingers. He's so far away from stable- so far away from three weeks ago or even Friday. His breathing remains in doubt. His heart rate is irregular.

Please don't tell us what to do. We don't need opinions, or second guesses. Please just pray for guidance and that we have clarity for our decision. Pray that it brings us peace, either way. Pray for James, that he not suffer, whichever course we choose. You all have walked this far with us and we thank you. We will certainly need all the support we can get moving forward.

48 comments:

  1. Prayers for you both as you make this decision tonight. May the Lord provide you the utmost peace that whatever it is, it is the right decision for James. Sending this right away to my bible study for immediate prayers from them as well.

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  2. love you guys so much and have been praying constantly for you all...those prayers will not cease. Calling on Deut. 31:6 for you all now - "Be Strong the Courageous - I have called you by name you are mine - do not be afraid - do not be discouraged - for I the Lord will not leave you or forsake you"

    Prayers for peace that truly passes all understanding for you both as you make this unbelievably hard decision.

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  3. Praying for peace, wisdom, guidance, and comfort

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  4. May the Lord bless you and keep you. May the Lord make his face to shine upon you and be gracious unto you; May the Lord life up his countenance upon you and give you peace.

    Numbers 6:24-26

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  5. Relax, everything is going to be alright. Rest, everything is coming together. Open your hearts, LOVE IS ON THE WAY! jude 1:2 MSG. Gods hand is on your son, whatever you decide is best. He doesn't need chemo or surgery to heal him. He is the creator of all things, our Father and savior. Praying for healing in your little boy. AMEN!

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  6. Continuing to pray many prayers for you and James. I'm so unspeakably sorry that this is the decision you are now facing. Trusting that Jesus is exactly who he says he is and will be The Prince of Peace for your family.

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  7. We are praying for you two to find peace and guidance, and for little James to find strength and comfort. I am so, so sorry that you are facing this decision.

    --Katie & Clint Burrus

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  8. Lifting you all up tonight. Know that no matter what, you are loved by all of us that read here (even if we don't know you!) and more importantly by the One who made sweet James. My heart breaks for you and I'm praying for a miracle!

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  9. Mallory sent me the link to your blog. Sitting at my computer praying for your sweet boy and that you both have peace as you have to make this decision.

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  10. I am praying so hard for you and your baby boy. I don't have the right words but just know that you are being lifted up in prayer tonight.

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  11. Im so sorry. Praying so hard for you and precious James.

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  12. Heartsick for you. Prayers for peace, wisdom and guidance.

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  13. I go to church with Lindsey Weldon and have been praying and thinking of you so much since I heard about James a week and a half ago. I can't imagine the position you are in. My heart and prayers are with you. Everything I can think at this point seems trite with such a hard decison before you. I am praying for the Lord's best for your precious family.

    Love in Him,

    Kate

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  14. My heart is breaking for you both and for James.

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  15. Know that you are again covered in prayer! I am asking the GOD who ROSE his Son from the dead to heal and destroy all of the disease in him! I pray for a miracle and I pray for you, his parents. No words will suffice but know that the prayers will not stop for a long time no matter what. Know that God is in complete control and is not shocked by the news. I pray for guidance from God to speak to you- and remember that no matter what you choose you can not destroy God's perfect plan-- you can not make a "wrong" decision. Love from up high being sent to you both! May the peace of God that transcends all understanding be with you and guide you tonight and forever more!!

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  16. Dear James,

    May God bless you and your family and give you strength, peace, and love.

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  17. Kara my heart is absolutely breaking for your family. I can't even find the right words to say. Please know that you and James will continue to be in my thoughts and prayers. You are an amazing & strong person and I know God will see you all through this awful time. I hope whatever decision you all make that it brings you peace. Sending so much love your way!

    Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
    -Proverbs 3:56

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  18. (I'm a high school friend of Kali Lucas & have been praying for your sweet boy). May God bring you comfort & peace in this heartbreaking time that us mortals will never fully understand. No one should have to go through what you are going through & no words that anyone can tell you is going to make that pain any less. Know that I am continuing to pray for your family & sweet baby James. May his life be filled with love.

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  19. No words, just hoping for a miracle. Waiting for something amazing.

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  20. "Now this is the confidence we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petition that we have asked of Him." I John 4:17

    I'm so sorry and all of you will remain in my thoughts and prayers.

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  21. Praying. I don't know what else to say, but we are praying. And we won't stop praying.

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  22. (friend of Jen McCrady). Praying for you and your family in this difficult time. Your son is so beautiful.

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  23. This is Jen McCrady's mom... Prayers are covering your sweet family. God will give you the strength you need for each step ahead. Love, Kim and Steve Davison

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  24. Many prayers to you for your sweet, precious James. May his life be filled with beautiful love.

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  25. Praying! Know that whatever decision you make, it is the right one. Many people are beseeching the Lord on your behalf. Never second-guess yourselves. I can't stop thinking about y'all and I don't even know you. Praying like crazy

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  26. My prayers are with you and your precious James.

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  27. Praying for James and your whole family, that you may find peace in whatever decision you come to.

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  28. I found this blog through another and have recently lost a young family member to a glioblastoma on Nov. 11, 2010 at the age of 19. My husband and I will pray tonight for strength for you and your family. I will not give you what I think you should or should not do, but I can tell you that Chrissy came home to be in her home surrounded by all those that loved her, surrounded by all the things that comforted and mattered to her. We were all there with her in her last few moments and it was the most dignified passing. In the strangest way beautiful and perfect in the way that this was how it should always be when letting a loved one go. Our family knows the devastating effects that brain cancer can have on the family unit and on your hopes and dreams for your children. I can only tell you that you are the only ones that know whats best for James- and Dr.s can only tell you the paths on which to go- you will know in your heart what is best for your boy. We will be praying for you.

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  29. I have been following your blog and thinking of your family throughout this process. ( Kara I was in undergrad w you at Baylor-my name was Kim skinner) I cry with you guys this morning and beg God to send you comfort and wisdom as you face this awful decision. I am sorry you have to face such pain.

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  30. Praying for you and your sweet baby James. Our hearts hurt for you all.

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  31. Praying for you and your precious baby.

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  32. My heart aches for your family. My thoughts are with you and I pray that you all find peace that only He can provide.

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  33. I don't know you guys, but was sent your blog in a prayer request from a mutual friend. As the mother of a 3.5 month old, I am in tears reading this and just hurting for you both at this time. I pray that whatever decision you make, the Lord provides you grace and comfort that only He can provide. I'm sending my prayers to you and that sweet angel you have.
    -Darla Eisemann

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  34. Wow. I am so saddened to hear this. We don't know each other, but do know that I will be praying for you while you are making decisions. Just know that God is a loving God and will not let you make the wrong choice. It's all in His mighty hands. What a blessing to pray for you all.

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  35. Sara Banks sent a prayer request for your family. As a registered nurse for 38 years, I cannot imagine how painful this journey has been for you. I have three grown sons I treasure. May God's Grace and Mercy be sufficient for you, your husband and James as you make hard decisions over the next few days. Breath in the Love of the Lord, Breath out the fear and anxiety; breath in the love of the Lord, breath out the fear and anxiety. Repeat this over and over as you feel God's ministering angels surrounding you and protecting you with their mighty wings.

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  36. Prayers of peace for your precious James and family. My heart aches for you and I pray that you feel all of our thoughts and prayers surrounding you.

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  37. Prayers from Puerto Rico. May God's light shine upon you and his love comfort you!

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  38. Dearest Kara. My heart is so broken. I cannot imagine the pain you must be feeling at this time. As this is the most difficult decision you will make in your lifetime, please know that our Heavenly Father and Jesus Christ are watching over you and are with you at this time. Christ has suffered this pain, and agony and knows exactly what you're going through. I know you are turning to him daily, if not hourly. Stay close to our Heavenly Father, and I know that you will be comforted. My prayers are for you and your family, and for sweet baby James.

    -Merrill

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  39. Dear James and family,

    You are in my prayers and thoughts. I pray for God to help guide you in your decision and to bring you some semblance of peace. I pray for a miracle for James and I also pray for his peace and that he not suffer. God bless you all. My heart aches for you.

    The Splendore Family in Pennsylvania.

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  40. I wish there were words we could all say to make this better. I cannot imagine going through this.

    I pray that God will guide you down the path that is best for your family. I pray that you will trust Him and know that He has a plan for you.

    God bless.

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  41. My heart is completely broken for you. I will pray that God will give James, you, and your family peace and healing. I will also pray that he gives you wisdom. Jennifer

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  42. I don't know you but my heart is broken for you and your family. Prayers from Cincinnati for your family and your precious baby boy.

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  43. Praying, praying and praying some more.

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  44. I am so sorry for what you are going through with your beautiful boy... I pray for your decision and God's peace that comes with it. My heart is breaking for your family.
    God Bless you all.
    much love,
    tara pakosta

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  45. There are no good word. There is little to give comfort during these dark, dark days. There is prayer, tears, bargaining, begging, pleading...and a love that hurts. I wish I could give you word to take away your pain. I wish there was magic to heal your son.

    I do understand this. Almost three years ago we lost our nephew to a long battle with a brain tumor. Even though I don't know you, Ii do know where you are in your journey. I will lift you all up in prayer. Amen

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  46. Praying for your family and James. Praying that the Lord will guide and comfort you in this time.

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  47. Our hearts are breaking and our prayers for a miracle are being lifted up for Baby James. May God's love surround and comfort you during this time.

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