We are 4 hours into our 8-9 hour adventure home. It's been a wonderful vacation and we witnessed some amazing things out of Lucy. It's hard to believe that there's a possibility cancer has returned to her body. She's been strong this week; stronger than she's been since diagnosis. Not only is her body stronger, but her brain is sharper too. I think even today shes stronger than yesterday.
We have wrestled with our emotions and hearts over the decision to go through with surgery on Monday. Since June 3rd, we've been to hell and back on an emotional roller coaster. We have been told on three different occasions that cancer has retuned. The problem is, this is Lucy. Nothing is ever easy with this girl. So, for the three times we've been told she has relapsed, someone has had to come back and tell us that there is reason to doubt.
No one is to blame for this. The problem is that Lucy has had so much trauma in her brain over the past 18 months that there is never a clear picture when examining her MRIs. Between two bouts of meningitis, resection surgery, over shunting, and the thiamine deficiency...Geez! No wonder the radiologists cant agree.
After much prayer and some rather sleepless nights, Erik and I have agreed to go forward with an open biopsy on Monday morning. Dr. B will perform the surgery, and there is not a man in medicine I trust more. He has always believed in Lucy and her ability to fight. We have to trust that this time is no different. Without a firm yes or no on relapse we can hardly move forward with our lives. We were given the option to just watch the area with scans, but hoping to roll a 7 with my daughters life is not a gamble I'm willing to take.
I dread having the conversation with my children tonight about what's to come. Once again their lives are being turned upside down. Once again Ella and Jack will be away from me and Erik for an unknown period of time.
And the other issue weighing heavily on us is having to start in a deficit trying to play catch up with PT and OT. This week was amazing and it's hard to know that we are going make a choice to knock her back down. But honestly, we don't have a choice do we?
We are making this decision knowing that God will bring us through. All of us, especially Lucy, just as He always has. We aren't in control of our lives. We've come to know that all too well.
And just for some light comic relief after such a heavy post...as we are traveling home we just had to pull the truck over on the interstate to clean up a huge vomit mess! Apparently Jack gets car sick and we are just learning this. Luckily we were in a traffic jam outside of Montgomery and everyone and their mother got to see the spectacle. It was awesome!
Just because you have one really sick child doesn't mean you are immune to the craziness of life. We are learning more everyday how to roll with the punches. I think that saying "what doesn't kill you makes you stronger" is becoming our family motto!
You are being covered in prayer as you move forward - and you are moving forward! That's always a good thing.
ReplyDeleteHi Kate,
ReplyDeleteThank you for the update! I love the picture of the kids in the BIG Chair!!! I am so very happy you alll had such an amazing time on your vacation!! You all deserve it. I can imagine how difficult of a decision you and Erik had to make re: her surgery. It seems to me you have also gone with your Mama instincts and they have ALWAYS worked so, I think it's great you guys have stopped to listen to your hearts and minds and prayers. It's working. I hope your ride home is a safe one and you all get some much needed rest!!
Take Care,
With Continued Prayers....
Jenn xo
Adding my prayers!
ReplyDeletePraying!
ReplyDeleteMany more continued prayers!
ReplyDeleteAmy
Continuing to pray for sweet Lucy and her family. Drive safe home...lots of prayers for you telling your kids tonight and for this coming week. Hugs too.
ReplyDeleteAlways praying. Glad you had such a wonderful time.
ReplyDeleteSo glad you were able to spend this time as a family. Continuous prayers and positive thoughts for the Krull family. Also praying that the biopsy will confirm that Lucy has not had a relapse. Go Lucy Go!
ReplyDeleteWhat a wonderful, uplifting vacation! You all so needed and deserved the good time. Best of luck with the surgery. Prayers are with you.
ReplyDeleteI have not stopped thinking of you and your family. I know that nobody can really know how you fell unless they walk in your shoes, but I do believe that I would be makeing the exact same decision of having the surgery. Sometimes, without answers.. Your mind will go crazy. Knowledge is power. From one mama to another... I am praying for you . Lucy, is always in my prayers.
ReplyDeleteSo glad you all got to enjoy some real family time at the beach! Continuing to pray for Lucy, and hoping that you will receive all good reports after surgery. May God grant you all serenity and strength!
ReplyDeletePraying so hard surgery goes well and Lucy stays strong
ReplyDeleteBless you all! I love how you love life & never give up. Your family is a joy!
ReplyDeletePrayers & love,
Loreen
Continuing to pray for a healing! Believing that the good changes in Lucy are just evidences of God's mighty Hand of healing in her life! Miracles Happen! Rest in your decision and let the sweetness of the Holy Spirit manifest in your hearts. Sitting back and looking forward to seeing God doing this thing big!
ReplyDeleteWhat a hard decision to make, but I know God is guiding you on this incredible path you are on. Rooting for a full recovery for amazing Lucy!
ReplyDeleteWhile you may dread discussing what's to come, I know this: your family is about trust and love. You all love Lucy and everyone trusts you are doing what needs to be done for the best future filled with love and each other. No one may like being separated, but your children all know how much love exists in your family. They are strong and selfless. They will come through like champs. Hold on to that while you are apart . . . and be ready to feel the waves of prayers going out from all over on this one! Trust God, trust the doctors, and trust yourself!
ReplyDeleteI wll be praying for you all this coming week. Also, my boys suffered car sickness for a short period of time and out grew it - I know you will laugh, but we put a bandaid on their belly button and they didn't throw up again. I know, I know - seriously?? I had always heard that has an old wives tale but . .who knows. It is either true or it was a fluke but it is a cheap thing to try and so worth it if it works!!!
ReplyDeleteMy thoughts and prayers will continue to be with you, your family and the physicians and nurses taking care of Lucy! I continue to be in awe of your strength1
ReplyDeleteSo glad you had a wonderful vacation!!!! I'm not a doctor but I feel like Lucy's strength is an amazing sign!!! Praying that she continues to improve!
ReplyDeleteSuch tough decisions to make but with God leading and guiding you, you just have to know that this decision is the one He wants you to follow. I will be praying and praying for Lucy and your whole family and the team of doctor's and nurses that will be caring for Lucy.
ReplyDeleteI don't ever get use to vomit. :s Yuck!! I hope you can get the smell out of your car.
Praying and praying,
<><
So glad you had a nice vacation! I hope that you got some much needed rest. I will continue to pray for your family. I never forget Ella and Jack. God is building a hedge around them. You're so fortunate to have a strong family support system! Hang in there!
ReplyDeleteSo glad to see your post, happy your vacation was everything is should be. Tough decisions ahead, but you & Erik can handle this, God is watching over all of you. Praying everyday for the very best outcome for Lucy and her great family.
ReplyDeleteI've been following your story for awhile now and never commented. Sometimes the best prayers are the unspoken ones. However my sweet baby girl was diagnosed with epilepsy a few months back and we are now on the 7th floor at LeBonheur that you have spoken so highly of. We are looking at a possible surgery on Monday as well. Just out of curiosity will Lucy's surgery be at St Jude or Lebonheur?? You are in my prayers and I know God's healing hand is with your family. Also glad you had a great trip!!
ReplyDeleteSo glad to hear from you. I pray for Lucy every day, but I will be praying especially hard next week for her to come through the surgery well and for the biopsy to show great results! Much love to you all!
ReplyDeleteMy thoughts are with you at this horrific time when you have to go from an amazing vacation to pure Hell again. GO LUCY GO. My daughter and 13 month old grandson walked in a walk called the Prouty today which is an amazing fundraiser for cancer which raised over 2 million and she had her grandparents whom she has lost but also said she had Lucy on her list to walk for which I was so happy that she included her. We will be here in blog world for your family Kate.
ReplyDeleteWe will pray you through this. Lucy is a trooper, she has done more, than most adults. Ella will understand, I know she wants the best for her sister. Little Jack, looks like he will just go with the flow. God bless you and your family.
ReplyDeleteSo happy God has given you all this wonderful rest in the midst of the storm. Know that we will all continue praying for your whole family...
ReplyDeleteOh Kate, I cannot imagine. I am so thankful you had such a wonderful time on vacation with your family. I am praying for Lucy, for strength and rest for her. That God's peace would surround her. I and praying for you, your husband and children during this time. That He will hold you close and reassure you that He holds Lucy in the palm of His hands. Asking that God give the doctors and nursers His wisdom and revelation.
ReplyDeleteSo very happy to hear you had a wonderful vacation! Continuing to pray for Lucy and your family.
ReplyDeleteLucy and her family is on the First Baptist Church in Steele, Mo. prayer list. God is in control.
ReplyDeleteKate,
ReplyDeleteWe are so thrilled that you guys got this special vaca. We will continue to pray for all of you, including Lucy's doctors.
God be with you on Monday and all of the days to come.
Saying prayers for all of you.0
ReplyDeletePraying!
ReplyDeleteI'm glad that your family had a great vacation and that Lucy is doing so well these days. I pray for her battle and the upcoming surgery. I hope your drive home was better than ours was from Destin to the Nashville area. We hit traffic jam after traffic jam and then drove from Birmingham to home in pouring rain. We had a blast in Destin, but are glad to be home!
ReplyDeletePraise God for your awesome trip! I am so glad that you had a great time. I will be thinking and praying for you extra hard tomorrow. May God guide the doctors hands.
ReplyDeleteGod is in control!! Will be praying and thinking of you, as always.
ReplyDeletepraying for you all to have a sweet day together today. and will definitely be praying for Lucy's surgery tomorrow.
ReplyDeleteSo glad everyone had a good time, especially Miss Lucy! Praying that everything goes well tomorrow.
ReplyDeleteSo glad to hear that you had a great time during your vacation - except maybe during the time Jack threw up! :) Prayers are coming your way for Lucy's surgery!
ReplyDeletePraying for each of you to journey forward with peace and the love of God. Like so many others, I will be checking the blog for updates. I love Lucy--we all do, and God loves her best!!!!!
ReplyDeleteSo glad you had an amazing vacation. I would have made the same choice you all are making, just can't gamble when it comes to your child. Lucy is going to do GREAT I can feel it. Sending alot of prayers your way (as always)!!
ReplyDeletep.s. our daughter used to get carsick every time we would drive longer than 2 hours. Finally this weekend was the first time we made it up north and she didn't puke or even feel sick (she's 7.5). I totally feel your pain LOL!!
You are guided by God's wisdom and protected by his sufficient grace, and Dr. B. is steering the ship. Full speed ahead. Praying hard for God's blessings to be upon Lucy. May the biopsy reveal good news and may Lucy continue to grow stronger and stronger. God will give you the strength to run with endurance the difficult race he has set before you. He brought you to it; He will bring you through it.
ReplyDeletePraying for all of you and for a good report from the biopsy!
ReplyDeleteKate, still praying for Lucy and your family! I LOVE the picture of the cousins...PRECIOUS!! My love to all! Renee
ReplyDeleteThinking of you and praying for tomorrow's surgery. My prayer is for peace for everyone, steady hands for the doctors, and an outcome that will once again be amazing for Lucy. Our God is in control, and He loves Lucy even more that any of us. Rest well tonight, and please keep us posted as you can. Love to all, Pat Williams, a grandmother from Tuscaloosa
ReplyDeleteI begin each day with my prayers and Lucy and your family are in them. Tomorrow will be no different. I will pray fervently that all will be well with her and the surgery. God Bless You all!
ReplyDeletePraying for Lucy today and always!
ReplyDeleteCathy
Arnold, Missouri
I'm so glad to hear that you all had a great vacation. I will be thinking of you tomorrow and hope that all goes well, and that there is no evidence of further disease.
ReplyDeletePraying for a safe surgery, wisdom for the doctor and nurses, great results, peace for you and Erik and strength for Lucy free from fear. GO LUCY GO! Keep fighting. I'll keep praying. I will never stop.
ReplyDeleteMy small grandchildren asked about Lucy every day.We are praying ever so hard for strength and miracles for our dear little Lucy....
ReplyDeletewhat dont kill ya makes u stronger,..praying for sweet Lucy & all the family.. Vicky A
ReplyDeletePrayers for Him to guide the hands of the surgeon. Prayers for Him to give you strength while waiting. Prayers for Him to provide peace in your hearts. Prayers for Him to heal your beautiful daughter Lucy, who you do unselfishly share with all of us. Prayers for Him to give comfort to all. May all of your children know that not only are these prayers going up for Lucy, but for them as well. Peace be with you.
ReplyDeletePraying for you every day and asking God's presence to be especially near today as you wait through another surgery. Praying for a miracle and knowing that God can answer if it is His will.
ReplyDeleteTracy
Virginia
I have been praying all morning.
ReplyDeleteSandy
Kate, I thought you might want to listen to “What Faith Can do” By Kutless. Here are the Lyrics-I hope this helps you find some peace today as you prepare for this week. God Bless-Lucy is in my prayers.
ReplyDeleteEverybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Praying for Lucy, you, Erik, the kids, and the doctors today! Praying that this coming week brings health and healing when they are most needed. GO LUCY!!!!
ReplyDeleteWe will be praying for Lucy today that the report from the surgery will come out much better than expected!
ReplyDeleteIn Christ,
Carmen Pfeifer
Lucy you are a little fighter, glad you have lots of support from your family. I think that is the greatest gift you can have, just as you are the greatest gift to them.
ReplyDeleteIf your Dr B is the same Dr B that did my surgery, I know your in good hands! God is good & you are all covered with tons of prayer!
ReplyDelete