7.06.2012

It Never Ends

9:45 pm. Just confirmed brain surgery for Lucy to be done in a week and a half. Why? Because we have a Neuro Oncologist, Neurosurgeon and Nurse Practitioner who will never stop when it comes to making sure we do everything in this world to give Lucy the best chance at an awesome life.

It's been a wild day but we are home. As in our real home, in our real beds. Tonight is the first night I've slept in my own bed since June 2nd. Boy, does it feel heavenly. Our family is together. The kiddos have been giddy with excitement all night.

We thought we left St. Jude with a firm diagnosis and game plan. As the day progressed things have shifted a tiny bit. In a nutshell, we have reason to suspect that Lucy has relapsed.

What's interesting is that it's not the area that Atlanta said it was. Our team thinks that its a totally different issue that we will have to figure out. Instead, there appears to be areas of leptomeningeal disease. The consensus is that it's a small area and does not seem to be aggressive.

That being said, we are seriously considering a course of chemo that will
hopefully work to put Lucy back into remission. Before that can be done, however, work has to be done on her shunt and possibly a biopsy will be taken.

So that's the news in an abridged version. All I can say is "who knows what tomorrow will bring." If there is anything I can say for sure it's that nothing is for sure.

I'm so confused and emotionally drained, but I am so happy to be home with my family. Today we received a gift. One more day together as a family. I've said it before but going through an ordeal like this sure helps you put life into perspective. Everyday is a gift.

Thank you all for you continued prayers and support. We have some huge decision to make and covet your prayers and love.

86 comments:

  1. So glad your all together and back with your faithful medical team. That must give some peace. keeping you all in prayer

    ReplyDelete
  2. Hugs and many continued prayers!

    Amy

    ReplyDelete
  3. I wish I could give you all a huge hug from the west coast. Enjoy your time together, and try to rest. We - the blog family - will hug you all virtually as we continue to blanket you in prayer.

    ReplyDelete
  4. So happy to hear that you are home together as a family! You guys are in my thoughts all the time.

    ReplyDelete
  5. Prayers for LucyJuly 6, 2012 at 10:18 PM

    We are praying for you all.

    ReplyDelete
  6. Thank you for the update. I have been praying for Lucy and your family all day. May God hold you in his arms and give you peace. I will continue to pray for your family constantly. I pray Lucy will be cured.

    ReplyDelete
  7. Praying for you all...thinking of you. So glad you get a time of refreshment at home with all your loves.
    We will continue to pray until Lucy is COMPLETELY HEALED!
    Thank you for the update.
    Sleep peacefully...He is in control...He is not surprised...He has a plan.
    Love,
    Cora

    ReplyDelete
  8. Sleep--prayers will not stop--embrace your children and your home this weekend--you all deserve to be wrapped together in Love.....

    ReplyDelete
  9. Judy Walk ThompsonJuly 6, 2012 at 10:22 PM

    Praying! I find myself thinking of you during the day and wondering how you'll are-including your parents..Hope we get rain--think it would make all feel better here in Tn.

    ReplyDelete
  10. Thanks for taking the time to update. Praying you all enjoy your time at home and are able to get some rest. I pray for God's guidance for you and your team of doctors.

    ReplyDelete
  11. Awesome that you are all HOME tonight under one roof....surrounded by each other! I am so happy to hear that tonight you will sleep in your beds and you will have all your children near you, in one place. Continued prayers for Lucy and for you and Erik as you navigate the twists and turns and have to make decisions no one should ever have to make. Praying for all of you....always.

    ReplyDelete
  12. You are all most certainly in my prayers. I've kept Lucy in my heart- hoping & praying constantly for God to work a miracle with her so that we all may be reminded how great He is. I know that He can & will do it. Keep on hugging your babies & keep on fighting through the hurdles. We're all there by your side in spirit.

    ReplyDelete
  13. Never will we forsake our optimism as we continue in prayer for the whole family. The truth is, each member of the family needs our prayers and each other's prayers. No one can tell you right now where this path will lead, but your medical team seems awesome. If it can be done for Lucy, it will be done at St. Jude. You are remarkable through this, but please give yourself times just for your own personal regrouping. Enjoy your time at home with your family!

    Marjorie

    ReplyDelete
  14. praying for you everyday!! :)

    ReplyDelete
  15. Been waiting on your post all day to see how Lucy is doing....I stayed up most of the night last night and read your Blog from 2008. Shed alot of tears and smiled alot of smiles. You are a great Mother and so strong in your faith. SO many are praying for healing for Lucy. I just wish there was something I could do for you and your family besides pray. SO glad you and your family are together tonight. Prayers going out for you and Lucy and your family....

    ReplyDelete
  16. Naomi Williams KlidjianJuly 6, 2012 at 10:38 PM

    Glad you all made it back to Memphis safely! I hope tomorrow is a good day!!! One day at a time! Glad you are all together!

    ReplyDelete
  17. Thanks for the update. H.O.P.E. always. Still praying!!

    ReplyDelete
  18. Praying for Lucy and for the decisions that have to be made. She is the bravest of brave. Go Lucy Go.

    ReplyDelete
  19. So happy you are with your family at your REALhome tonight. You're right, every day IS a gift!!! Praying hard for your family!

    ReplyDelete
  20. Praying!! And happy your family is HOME! Enjoy every second!!

    ReplyDelete
  21. Kate,
    I have been following your blog for well over a year. I want to plead with you to talk to pediatric hospice or palliative care before you plan further treatment. Your story is a familiar one to me working in the medical field. I can't tell you how many times aggressive treatment is taken and sometimes spilts a family up and takes a child and a parent out of town for the last month or so of a child's life. When you left for Atlanta, I was terrified this pattern that I have seen again and again would play out in your family. I know you can't hear the tone of my voice and I don't want to sound cold, but please consider what kind of death you want for your dear precious child and your family. I'm so sorry you and your family are going through this.

    You mentioned in an earlier post that the MDs in Atlanta seemed to not be as warm and helpful. This is a common occurrance. It is well documented in research that MDs known to cancer patients are warm and compassionate to them. The longer one knows a cancer MD, the less likely they are to tell you the cold facts about the progression of cancer and the more likely they are to recommend a treatment that they know will not help. They are human too.

    You asked if you should hope or you should grieve. I'm suggesting that you do both. When Jesus Christ was facing his death he asked God to please let the cup pass from him. That's manifestation of his hope that something different could be. But he still went to the cross despite having the hope that there could be a different outcome. Again, I'm sorry you are going through this.

    I vowed to keep my mouth shut from the beginning of following your blog, but I can't. I just kept asking myself, what if they went to Atlanta, so I would post this while they still had time to choose how and where their child dies. Pleas at least consult with pediatric hospice. You can always choose not to use them. I'm so sorry if this post hurt you and expedt that you will delete my post if it's too painful. I just want you to make a conscientious choice about how your daughter will spend the end of her life and not just get caught up in the "we must do something" medical culture without consciously choosing it.

    Whatever your choices, they are right for you. I hope you can forgive me for posting this. Love to you and your family always.

    ReplyDelete
  22. I rarely comment, but want you to know I'm praying and have been. You are on my heart and I will continue to petition God for your lovely daughter and family. My heart aches as you all go through this and I know that's not much compared to what you are facing, but you are cherished. May God's Hand of healing and peace be on you all.

    ReplyDelete
  23. Thanks for the update. I have been thinking about Lucy all day! Praying for your sweet Lucy and your family!

    ReplyDelete
  24. After reading this, it is time for me to go crawl in bed and snuggle with my 4 "gifts." I view each and every day different because of you and your family. Thank you!

    ReplyDelete
  25. We probably won't ever meet this side of Heaven but when we do finally meet I am seriously going to hug your neck!! :) I love Lucy. I love you. I love your family. Praying for you all right now and every day.

    ReplyDelete
  26. Thank you for taking the time to share the news with all of us. Continuing to pray for more miracles. God bless xxxxxx

    ReplyDelete
  27. Thank you for taking the time to update all of us. While this is not the kind of news we had hoped and prayed for, I am so encouraged by the game plan your team of experts has already put together to help Lucy battle this relapse. May you feel the love and prayers coming from all over the world to bless and heal your beautiful family.

    ReplyDelete
  28. Been following along for a while now and I'm so glad that things are starting to "come together". I pray that the Lord will show himself mighty in all of this. Know that I'm praying for you as you move forward.

    ReplyDelete
  29. Deborah in Grenada, MSJuly 6, 2012 at 11:41 PM

    I'm so sorry that Lucy and you are having to go through this again. I am praying that God will touch Lucy and heal her. Also praying for peace and strength for the entire family. I go to the V.A. in Memphis with my boyfriend regularly. I used to look at LeBonheur and think of the children there and at St. Jude, but it wasn't real to me. Because of your blog, it is now real. Each time I'm there and see that building, I pray for the children who are fighting illnesses and their families. God bless you all!

    ReplyDelete
  30. Juaacklyn CunninghamJuly 6, 2012 at 11:45 PM

    Thank you Kate for sharing your story with us. Last night I went back to your Feb. 2011 posts and started to reread. I got to March 6 and was reminded of some powerful words by Dr Boop's NP "This little girl has won her battle...victory has been claimed...we just have to travel this road with her so she can become the Lady - Christ desires.....So tonight in your prayers...thank Him for the victory won and strength for the road....TT" This road has had many bumps but stay the course. pray and be obedient. You are surrounded by a medical team that is under the direction of God Almighty. Lucy has touched so many people and pray that it is God's will that she be healed and made whole. Tonight I am thankful that the whole Krull family is sleeping in their beds. May you get sleep for your body and rest for your mind. Go Lucy Go!

    ReplyDelete
  31. Hi Kate,

    I am so sorry the Dr.'s feel like Lucy is relasping. I'm really sad about that. It is so nice to hear the happiness in the tone of your post Kate. I'm so happy you are H-O-M-E with your family!!! ENJOY every bit of this time!!! Thinking of & for praying all of you!!!

    Jenn xo

    ReplyDelete
  32. So glad you guys are ALL home! Hope you enjoy your beds and your shower. :) And a home cooked meal too... ;)
    Many prayers into your next days ahead.
    HUGS from here to there!
    Michelle

    ReplyDelete
  33. You are in the hands of some pretty skilled and special medical folk. Sleep well tonight. Hopefully you have a king size bed and can make tonight a a family bed night! In all that is going on and with today's news, the fact you are all together at your home, your real home, is something to treasure. It will bring you all a sense of peace and hopefully some renewed strength.
    Love
    Elizabeth

    ReplyDelete
  34. Thinking and praying for your family. You are absolutely right, everyday is a gift. Thank you for reminding us.

    ReplyDelete
  35. I am so happy to hear you are home. Although it will be short lived, it is a welcome blessing for tonight. Prayers for Lucy and praise to our Heavenly Father for more time with our babies. You truly don't grasp the fragility of life until you are on your knees begging for one more day with your child. Enjoy every moment at home, I know you will be soaking in every precious moment.

    ReplyDelete
  36. I have no words. I do have lots of prayers, love and hugs.

    ReplyDelete
  37. Enfolding you all in prayer, for God to give Lucy's medical team, you, and Erik wisdom, discernment, and guidance concerning Lucy's diagnosis and course of treatment. Praying forever for sweet Lucy, that she not be afraid or in pain, that she be strong, and that she recover by God's powerful healing hand. How spent and exhausted you and Erik must be. May God's give you his strength and endurance to run the race set before you. May He protect and keep your family safe and forever in his care and love.

    ReplyDelete
  38. I go to sleep every night praying for your sweet Lucy and I wake up every morning thinking of her. I will keep Lucy and the rest of your beautiful family in my prayers. Sending love from So. Cali.
    xo
    Suzie

    ReplyDelete
  39. Kate, I'm praying for you and your family! I think of Lucy throughout the day and always say a little prayer. You have such a precious family. Thank you for keeping everyone updated. Many many prayers and lots of love sent your way.

    ReplyDelete
  40. Praying that you may receive guidance in your decisions, peace in your heart. Praying for Lucy's medical team that they may be skillful and successful in her treatment. Praying, as always, for Lucy's complete healing and return to health.

    ReplyDelete
  41. You can really appreciate the old song that says, "I don't about tomorrow, but I know who holds my hand," more than the vast majority of us can. So thankful that the Holy Spirit can take our groanings and interpret them to our Father for us.

    ReplyDelete
  42. I hope you rested well in your own bed with all the kiddos together. Continuing to pray that God heals Lucy. Love, hugs, and prayers!

    ReplyDelete
  43. I am praying for Lucy and your family. MY Sunday School Class and my church (Oak Hill Baptist Church-Meridian, Ms.). Has you on our prayer list. We. Will all be praying. Be strong in the Lord. Ramona Clayton

    ReplyDelete
  44. That roller coaster you've all been on has brought such unbelievable highs and lows. Faith and love have kept your beautiful family hanging on together thus far, and will continue to do so. I keep you in my prayers, as always, hanging on with you. I loved seeing the photo of Lucy and Ella reunited. And I loved hearing that you're back in your own bed. I'm sure you're finding the comforts of home a huge relief. There's also the comfort of knowing your team at St. Jude is going to fight hard to help in every way they can. They care deeply about Lucy, that's obvious. It sounds like they have started to feel like a second home to your family. You're so right, every day is a gift. I know you will have great guidance in making some more tough decisions.

    ReplyDelete
  45. Still praying daily for your baby and family :) So glad you get to spend some time at home together!

    ReplyDelete
  46. I don't pray. But in the last few days i have found myself just asking god to please heal Lucy. Im so glad you're home. I think of you guys daily!

    ReplyDelete
  47. Michelle in AustraliaJuly 7, 2012 at 7:48 AM

    I couldn't have said it any better. The photo of Lucy and Ella was SO special. We will keep up the prayers.

    ReplyDelete
  48. Hoping the right decisions are made and that Lucy gets on the road to real recovery VERY SOON! Glad you're home enjoying each other. I'll keep praying for all of you daily.

    ReplyDelete
  49. Lucy is such a strong little lady! My family is still praying for your family!

    ReplyDelete
  50. I just heard of Lucy and her story earlier this week. What an amazing little fighter she is. Praying for her daily. Go Lucy Go!

    ReplyDelete
  51. Please rest and know that your friends in the blog world are bridging the gap for you and your family. I pray the peace that passes all understanding will guard your hearts and minds today. Much love to you. Lisa

    ReplyDelete
  52. I am praying that God's peace will envelope you as you continue on this uncertain daily journey. Lucy and your family are in my daily prayers. God Bless!

    ReplyDelete
  53. Lucy continues to be in my thoughts & prayers, as you all do. Glad you are together now. Each day at a time, it seems and I can only guess how tough that is. So sweet the kids are thrilled to be home , all under 1 roof.

    ReplyDelete
  54. Kate,
    We will certainly be in prayer for wisdom for you and Erik. We will also be praying for the doctors who will be involved. Of course, your precious Lucy!

    ReplyDelete
  55. May the Lord wrapped you tightly in His loving arms and His grace, peace and wisdom be ever present in the moments, days, weeks, and years ahead. So glad you are home together!

    ReplyDelete
  56. Oh my goodness...I am soooo happy that you all are home together! I am sure everyone slept so well last night! :) Of course we will continue to keep the entire Krull family in our prayers.

    ReplyDelete
  57. The only constant in all of this is God and His love. Keep on clinging to this and looking up to Him.
    Psalm 63:7-8
    Because you are my help,
    I sing in the shadow of your wings.
    My soul clings to you;
    your right hand upholds me.

    Romans 8:28
    And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

    Kate, I will never stop praying for Lucy. I know there are many people here that will agree with me on this and continue to pray and pray for complete health for Lucy. She is very precious and I am so glad to hear that the doctor's at St. Jude's are going to continue to work to give Lucy a good quality life. I know this is so hard and mentally and physically draining, but keep trusting in God and asking Him to heal Lucy here on earth.

    Praying and praying,
    <><

    ReplyDelete
  58. I am so happy you are with your family in your home. St. Jude must be an amazing place. Blessings and prayers to you.

    ReplyDelete
  59. For the first time--last night--I could literally feel the utter exhaustion you are experiencing. I read the blog every day, sometimes several times a day, and go up and down with you. Last night I was weary and can imagine the depths of your highs and lows that occur in a regular pattern.

    ReplyDelete
  60. I've never commented before, but I have been reading your story and I am amazed at you, your strength, and of course, amazed at your sweet Lucy. Continued thoughts and prayers for you and your family - what a brave family.

    ReplyDelete
  61. I donate every month to St Jude's and at the beginning of the year I almost switched to send my donation somewhere else. I'm so glad I didn't and it's stories like yours that people need to read and realize what great work St. Jude does. I, like so many others, am praying for you and Lucy and I also pray that people send donations to St. Jude so they can continue the work they do for Lucy and so many other children.

    ReplyDelete
  62. Lots of prayers here.Put all in Gods hands He knows best.

    ReplyDelete
  63. You're right Kate. We don't know what the future holds, but we do know who holds the future. God is in control. Praying for sweet Lucy, for you and your family, for the doctors and surgeons. I am so thankful that you are at home in your own beds, and I pray that God gives you peace and rest there to strengthen you for the journey before you. Much love and prayers! Go, Lucy, Go!!

    ReplyDelete
  64. Praying praying praying!

    ReplyDelete
  65. Praying for you all! What a terrifying rollercoaster you are riding...

    ReplyDelete
  66. Sending many prayers your way. Enjoy your time at home all together.

    ReplyDelete
  67. Kate, I have just stumped across your blog and wanted to say that you, Lucy and your whole family are in my prayers. I can not image what you guys are going through. I will send all of my prayers to Lucy and I am hoping for the best.
    Go Lucy Go!

    XOXO,
    Ren
    Lots of Love and Prayers from Pennsylvania

    ReplyDelete
  68. Praying for your daughter, Atlanta is a great hospital. Tons of children I read about with cancer are treated there. Dr Claire is known worldwide with brain tumor treatment. Wishing you all all the best

    ReplyDelete
  69. Oh Kate, I am so so sorry for you all. Poor Lucy, what an awful thing to have to face again. I am so happy for you all to be home togetherr again. every day and night you have at home together is one they can never take away. I do not even have to tell you to cherish it because following your blog has made me cherish my family even more and I never thought that was possible. Give Lucy hugs from us all and enjoy every second with them all. We are all still here for you through these awful up and down emotions that you are all going through. Tammie

    ReplyDelete
  70. Kate& Eric,
    Charlie and I have been praying for Lucy and your family since Lucy was diagnosed. We have had our own issues but I am here to tell you that God works miracles and I am married to one. I know you will continue to count everyday as a blessing, that is the only way to get through this disease and it is literally one day at a time as you and Eric already know. We just wanted you to know that prayers have been coming constantly from our home and will continue. Just when things get so bad that you don't think your body or brain can function one more day, I know you well enough that you will find the strength to get up and do it again. We cannot tell you that we know what you are going through, we have no children, but I can tell you what I went through and I know what a private hell is when it comes to not knowing and the sitting and waiting on very educated specialists are literally in control of your life, as well as our merciful heavenly Father. Do not ever give up and I know that the strength that comes from the support from you family and so many friends will continue to hold you and Eric strong as you have to make these decisions that will affect Lucy and your family's lives, but know that you are not alone. Prayers do work miracles and you are holding a miracle in Lucy just as I lay my head to sleep next to Charlie every night. Please know that your family and Lucy are so loved and God will take care of you.

    Love in Christ,
    Becky & Charlie Moss

    ReplyDelete
  71. I've been reading your blog for about 3 weeks now. A sweet friend shared your story with me when Lucy was diagnosed with meningitis. I have prayed everyday for you all. For God's strength through this journey and endurance to the very end. That you will continue to give God the honor and glory for every road you travel knowing that He is right there with you. Seven years ago, we lost our precious 14 year old daughter to meningococcal meningitis. Once diagnosed, Jesus took her home within 24 hours. She was loved by all who knew her and still has an impact in the lives of others as we, her family, share her story with others. Through this God has given us a platform to share with others His love and strength. One day we will be reunited with our Sarah Beth, but until then we will do and go wherever He leads and calls us. May you all be refreshed and rested these days you have together at home and know that God's people are praying for you and your precious family. To Him be the glory!

    ReplyDelete
  72. Praying for you all. That's the best every one can do I'm sure. Mary adair

    ReplyDelete
  73. Thank goodness for your precious family all together under one roof in their own beds. Enjoy your time --- prayers coming from Oregon for Little Lucy, her doctors and a couple amazingly strong parents!

    ReplyDelete
  74. Praying earnestly for you all and for the medical staff.

    ReplyDelete
  75. Oh, I'm so sorry. My heart literally breaks at the news of a possible relapse. I feel as if anything I could say is so inadequate, but I do know that God has a plan. His ways are not our ways and His plans are not our plans. That seems so trite, but it's true! God loves our babies even more than we do, and that is almost impossible to fathom. Thinking so much about your precious family and praying so hard for a complete recovery.

    ReplyDelete
  76. I can't begin to imagine what you are going through with your family. I can't begin to understand the tole that being separate can be. But what I can say is that God is there, and my continual prayer is for strength and peace and hope for all of you and for mighty miracles for Lucy. I will keep praying and praying and praying!!!

    ReplyDelete
  77. Your family is in my constant thoughts and prayers.

    ReplyDelete
  78. always praying, always trusting that God has you all in the Palm of His Hand!!! b.gobble, col.3:17

    ReplyDelete
  79. Dear Sweet Kate, Rest tonight as your faithful army of prayer warriors lift you and your precious family up to our Lord in prayer. Yes everyday is a gift, a wonderful gift from God.

    ReplyDelete
  80. I will NEVER stop praying for Luci's healing. You are never far away from my thoughts and thus I remember to pray. I can't imagine your journey, but your family and your heart as a mom have stolen my heart. I know the God we serve and I know that he is weaving an amazing plan here. I will NEVER stop interceding for you and your family.

    ReplyDelete
  81. Praying for Lucy's miracle. Hope you can enjoy this time at home and she's stays healthy enough to be at home until the surgery! Ella is BEAUTIFUL and Jack is oh so cute. Praying, Praying, Praying!

    ReplyDelete
  82. What an emotional couple of days! Our thoughts and prayers are with you all. Enjoy these days before it all starts again.

    ReplyDelete
  83. I feel like 'we' have the easy part. We pray. We believe our prayers will be answered. We pray again. I want so much to be able to do more. I know prayer is a big thing and believing is even bigger. I can do it in my car, at my desk at work, at home on the sofa. Yes, 'we' have the easier job. But 'WE' are whole heartedly behind Lucy and the entire family. 'We' belive in you too. You are the best Mom we could ever pray for. God bless you!

    ReplyDelete