Monday, May 18, 2009

Heartbreak

I'm not going to beat around the bush. Today we received the news that Bree still has cancer in her bone marrow. This was very upsetting news. There were 2 different tests conducted in her bone marrow. One test concluded that there was no cancer to be found. The other test (the MRD...the one we were waiting on which came in early) had positive results, meaning that there were still tumor cells found her in bone marrow. What is so hard to understand about all of this is that her other tests (MRI, urine, blood, bone marrow) came back with negative (no cancer) results. With this one test, it is determined that Bree still has cancer in her body.

The doctor was really puzzled at these results. Looking at the tests above they gave us hope that the MRD test would come back negative. He was very confident that everything would be fine because all the signs were pointing in that direction. As we were there, the MRD results came over by fax and when they came back positive, he kept saying, "it shouldnt' say this." They weren't sure what the next step would be because this was so rare.

Her MIBG scan showed that her tumor inside could be active (cancerous) or it could be a mature (benign) tumor or scar/dead tissue. The only way to know what it is exactly is to take it out and biopsy the tumor. So what's next? At this point, the surgeons will be reviewing her case as to whether it is medically safe to remove the tumor. It is located in her abdomen next to her aorta and inferior vena cava (major arteries). They told us today that if they can, they will get her in to have her tumor removed by the end of this week or possibly next week.

If the tumor biopsy comes back as scar tissue or mature tumor then this could mean that the cells inside her bone marrow could be not active. They could be mature cells as well. To be sure, Bree would be monitored every 3 months with an MRI and bone marrow test to make sure there are no new neuroblasts growing. They tell us that this is a very fast growing cancer and that if it grows, it should show up in her tests.

If her tumor comes back with active tumor cells, there's talk about doing radiation to her abdomen to kill off the tumor cells and it could also mean a bone marrow transplant in her future. Which means more intense chemotherapy and scarier things I dont even want to mention at this point.

Tonight as I sat rocking Bree to sleep, I finally let the tears come. I have felt all day like I need to be strong. I need to have faith that Heavenly Father has a plan for Bree. That she is special to Him and that He has great things in store for her. But, as I let my mind wander and worry about what could possibly be in store for her future, my heart began to break. When you have a baby you never think that they will be dealing with cancer or chemo, multiple surgeries, blood transfusions, bone marrow biopsies, etc. She's been battling this cancer half of her life.

I feel crushed in a way because when she was diagnosed they gave us this plan...8 rounds of chemo and she should be done with this cancer. Yes, her tumor has shrunk, yes, its out of her bones, but she's not totally clean. We are not talking about remission yet. At this point we are still confused, bewildered by these results. Justin and I are mentally drained. It's been a hard day. We had much different ideas about today. It was supposed to be a day of celebration and excitement. I was supposed to be planning a cancer-free party. Instead, we have to dig in our heels and move forward, walking blindly by faith and continuing to live, being grateful for the miracles we've seen, and truly enjoying more of the little moments. 



51 comments:

Alisa Larson said...

This must have been a hard post to write Kari. Know that I love you and will do anything for you to help you through this. Now...go eat a brownie and drown some of that sorrow away in chocolate! :-) Love ya!

EmileeandJonny said...

I'm SO SORRY to hear that! We will continue to keep your family especially Bree in our prayers!

Debbie said...

I check your blog regularly, even though I don't post often, and I have continued to pray for Bree. I thought too that surely there would be no continued signs of cancer. As with other trials in our lives, shed your tears...get them out. I find it makes be stronger to continue on with the struggle. We will continue to pray for Bree. We will continue to pray for your family. Lean on us and others around you. Bless Bree.

mbunker said...

I am sorry to hear this news. Know that you are in our thoughts and prayers. I so admire your faith and your strength that you have shown and have continued to show throughout this process.

Supermom said...

You are in my thoughts and prayers.

Michelle @ http://www.theadventuresofsupermom.com

Jessica said...

I am so sorry to hear this. I was really optimistic about these results like you guys. I still do believe that it will be OK though. I will be thinking about you & your family, especially sweet Bree.

Travis and Marie said...

my love to you all...still praying, still hoping.

Grandma and Grandpa cook said...

We're glad you let the tears flow. It's definately okay to feel down when you are required to have a little more patience. There will be good news around the corner because she is in the Lord's hands and he loves her too and has entrusted you and Justin with her care. You have done all you possibly can and the Lord will take care of the rest. We are grateful that this MRD test was developed only 2 years ago just in time to help find any of Bree's last remaining microscopic cells that might come back later.
Today is a new day to fight back and we are with you all the way.
We love you all and will continue in our faith and prayers for the "cancer-free party" that's still just around the corner.
Love,
Mom and Dad Cook

Jason and Kate said...

I'm so sorry to hear this news. We are still praying for you guys and Bree. It's okay to cry because I know I sure did reading this. We love you!

Gooches said...

Oh Kari. I am so sorry. Just know that you will have all the support you will need through this next round. After talking to you on Sunday and seeing how strong willed Bree is, you have to know that she can beat this. You will be in our prayers.

the bates motel said...

ahhh i'm so sorry i don't really know what to say, but it sucks and hopefully they can get to the bottom of all of this. and one day (soon) you can have your cancer free party. bree really is a special little girl and we love her and know that she's still in our prayers. we are so sorry for this bummer news, but hope good news will follow.

Heather said...

I know I don't know you, nor do I really have any idea what you are going through, but I do have four of my own babies, so I know the way a mother can love. I wish so badly for you that all the people standing behind you, both loved ones and strangers, could make Bree well RIGHT NOW! I hope that all the prayers and thoughts and tears that have been offered in your behalf can give you some strength when you have none left of your own. Although I am a stranger, I care for you and your family and you are very much in my thoughts and prayers as well. FYI - I heard your story through Summer Driggs design blog.

Morris Mama said...

Oh I'm so sorry! Hugs for you all! I was so looking forward to reading a happy post. We will continue to pray for Bree to heal and for you and Justin to stay strong. Give Bree a kiss for me!

Megan and Eric Barnhurst said...

My husband just finished his 12th round of chemo yesterday and will have his PET scan and bone marrow biopsy the first week of June. Our biggest fear is that his cancer is still in his marrow too. I know how badly you wanted good news and my heart breaks for you. It is so hard to understand Heavenly Father's will sometimes, but I can see that you are an amazingly faithful woman who trusts in her Savior. I've learned a lot from the story in Mark of the man who sought Jesus' help to heal his son. Jesus asked him if he believed in him and the man answered, "Lord I believe, help thou my unbelief." It is okay to doubt, it is okay to cry, it is okay if your faith is not perfect. The Lord can make up for what you lack and help your "unbelief." I am praying for you every day!

Jill said...

You can do it Kari!! It's always so hard at first to hear news you don't want to hear, but I know you. You are amazing and Heavenly Father knows that too. You can do it and you have an army of support behind you. PLEASE call me at any moment and let me know what I can do. I will continue to pray and fast for Bree and your family. We love you and we are all so very proud of you. You are such a great example of strength.

The Burnhams said...

Kari, I love you and Bree. I will keep praying and having faith. Thankyou for keeping us posted even though I'm sure it's so hard. I still have a cute little pink ballerina build a bear to give Bree...should I wait a few weeks to bring it?
Love, Karlie Burnham

Anonymous said...

You don't know me but I stumbled on your site some weeks ago and have been following your story ever since - just needed to say that me and my family are praying for you. I'm so sorry. Stay strong. - Dawn (uk)

Rachel said...

I'm sorry it wasn't the news everyone was hoping for. We'll continue to pray for Bree and send lots of love to your family!

JakenDebbie said...

Heartbreak sums it up pretty well. My heart dropped when I read the title. My heart is breaking for you and your family. BUT, we will keep praying and hoping. I wish I could be there to give you a hug. I love you!

Anderson Family said...

This is a Heartbreak, But Heavenly Fathers does have a plan for both your family and Bree. Keep having faith and it will all work out. Your such an amazing person, always bringing out the positive in what lies ahead! You can get through this little bump in the road. I fast and pray for your family monthly. I hope all goes well and they will be able to do Bree's surgery soon, and everything will come back with good news!
Sincerly Mom of 4, from Utah

Katie J. Layton said...

It is alright to cry, I had tears just reading the news. I can't imagine the heartache you are feeling at this time. I still have so much hope for your little Bree. She sure has been a fighter. I have been keeping up with her story and have not forgotten her in my prayers. I will continue to pray and have hope. I know it is in the Lord's hands now. She must have great blessings in store for her. What a special spirit!

Dance Mama said...

My heart just aches for you. I love you guys and think of you and pray for you all the time. Please let me know what I can do to help your family.

Kellie said...

Kari, I cry with you. I am so sorry for the challenge this brings to your family. Tears bring healing and friends can bring dinner. Please let us know what we can do to help.

dustin and amy said...

I'm so sorry! I think about you and your sweet family daily! We will keep you in our prayers. Know that our Heavenly Father loves you, I know you do. I would love to help in anyway I can.

Kelli said...

I am so sorry for all you endure. You are amazingly strong! Bree picked such wonderful parents to help her through all of this! "Blind Faith" is what moves us sometimes. I pray so hard for recovery and solid answers from the tests and Dr.
You are all constantly in my thoughts and prayers!

The Scotts said...

I am so sorry. I can't even imagine. We will continue to pray for sweet little "Baby Bree" as Abby calls her. We love you guys.

Nuestra Familia said...

Love you guys, Bree and the rest of the family are strong and amazing. Thank you for your strength, faith and example. Lot's of prayers and fasting for Breezy.

The Driggs said...

Kari, I am so sorry to hear this news. I cannot imagine what you are feeling. Please know we are all here to support you. We WANT to help and are HAPPY to pray. I hope you don't feel obligated to keep updating the blog. But I also understand that it can be therapeutic to write about it. Obviously we all want to know, but it's most important that you do what you need to do just to get through each day and each moment. You are such an amazing woman and I look up to you so much. Heavenly Father does have a plan. I know you know that, and I know you have complete faith and understanding in Him. I love you Kari.

Steph said...

I'm so sorry. I know it must be so hard to get this news--when you're living for good news, any setback is just devastating. You've endured so much for so long. . . It takes a lot of physical and emotional energy to keep going through it all, and I'm sure you're pretty drained by now. I wish you didn't have to keep at this fight. But we will keep praying for Bree to be cancer-free soon, and for you and Justin to have the strength you need to keep going. I know that when you have nothing left to keep you going on your own, Heavenly Father will lift you up and carry you through. I KNOW this--He will help you, and you'll be able to do it. I so wish you didn't have to, and that Bree didn't have to, but I know Heavenly Father will help you. He loves you, and you are right--He does have a plan for Bree, and He will give her every blessing she needs. But sometimes this life is just hard. I love you guys so much. My heart just hurts for you. Hang in there. We'll keep praying.

Justin and Ashley Reeves said...

I came across your blog randomly, but I just want you to know after reading this and seeing this blog I am really inspired, what obstacles you have ahead and I will keep your family in my prayers. You are a great mother, I can tell. Best of luck.

britty said...

Kari, we'll keep the prayers coming. for what it's worth, we admire you and Justin so much for your strong courage and faith.

Amanda said...

Thinking and praying for you today, you are so strong and an amazing women and mother.

Anna said...

My heart is aching for you guys.

The Johnson Family said...

Kari, I am so very sorry that this is not over for your family and especially Bree. I can't imagine how you must be feeling. Your strength is amazing. Please know that you are in our thoughts and prayers.

Darin and Joanna said...

I found your blog last Fall when a friend of mine posted a pray for Bree post on her blog. I have followed ever since. Our families are very similar. Same age kids, same gender. My little girl and Bree are only a couple of weeks apart. My heart just aches for you. Your strength and courage have been inspiring to me. My heart broke when I read that Bree's cancer was not gone. I know Heavenly Father has a plan for each of us and I know he loves you and your family especially little Bree very much. Hang in there. More people are praying for your family than you know. I hope good news will come your way soon!
Joanna C.

Anonymous said...

I am so sad as I read the news...I am so sorry for the heartbreak that you feel today and so sorry for Bree that there is still so much ahead of her! I know it must be hard to hear the words, "Stay Strong", but Bree needs you so much...I can tell that you have been amazingly wonderful parents during all of this and can only pray that things will turn around for Bree.

nosynurse@blogspot.com said...

Our thoughts and prayers are with you....We have been through cancer in our home, and know the emotional toll it has. Priesthood blessings are so helpful. You will find strength and learn so much from our Heavenly Father if you listen..
Vicki and Steve Sowards

bethloomis said...

I can't even begin to imagine how hard this is for you, but you will continue to be in our prayers. I just keep thinking that soon I will see the word "remission" on your blog. You are the strongest person I've never met.

Jamie said...

i was so sad to read this tonight. i really just can't imagine how you feel. i check your blog often and am always so impressed with how you handle all this. i will continue to keep you and bree and your whole family in my prayers. god bless you.

Amy Lemmermann said...

I am so sorry to hear that. You guys have been through so much it is heartbreaking. we will continue to pray for you guys.

Melody B. said...

Your feelings are TOTALLY understandable. Even when you have faith in God's plan you can still be sad. Because there are tears and frustration doesn't mean you are weakening, it means you are HUMAN! :) Even Christ said, "If it be thy will, remove this cup from me, nevertheless, thy will be done." Having faith doesn't mean having to LIKE what is happening, it means exactly what you are doing (digging your heels in and moving forward EVEN THOUGH you don't want to, even though it hurts so much). :I You are wonderful and are doing an amazing job handling all of this. I don't know how you have trudged through every day this past few months. You are AMAZING Kari, really you ARE. Heavenly Father loves you SO much and is SO proud of the job you are doing.

Jaimee said...

Kari, I am so sorry! All you have been through and now to know it isn't done yet... I can not imagine the pain. We pray for your family daily and hope you find the strength to keep going. You will. It's okay to break down every now and then, and then pick ourselves back up and keep on going. You are an amazing Mom, Kari. God is watching over your family. Good luck in the coming days.

Dave and Tricia Folsom Family Fun said...

I am so sorry this cancer fight isn't over yet! We will keep praying and you guys keep hugging that little girl knowing our Heavenly Father loves you all!

Rach said...

Ugh--heartbreaking!! I am SO sorry to hear the fight is not over. BUT I do know that you have one strong little girl on your hands and she can handle whatever the good Lord has in store.....and so can YOU!!! I will keep praying for sweet Breezy, you and Justin and your whole family!

Dawny P said...

From one mamma to another, ohh your news is so sad Kari - I can't pretend to know how you must be feeling. But you just keep on going girl, cos you are doing great, and let those tears out whenever you want. All of us mothers are crying with you sweetie, bless your heart xxxx

Brooke said...

We don't know each other but I know Krista Brown. Our husbands were in school together in Denver. Just wanted you to know that I'm praying for you. My heart is aching reading your blog and I share my tears. You are an amazing family and I know the Lord has a plan. Best wishes.

Melissa said...

Kari- you don't know me either, but I heard of Bree's situation through S.Driggs and have followed her journey through your blog. Even my kids love her and our hearts were saddened by your news. There is still hope with so many people praying for her and you!!! Bree is so darling and such a strong spirit- it is obvious! Hold to the faith! We are praying with you!

PS>- Sorry if I sound like a crazy health-nut because I'm really not, but I have heard that Extra Virgin Coconut Oil has lots of healing antibodies in it and is effective with cancer patients. My mom was very sick with a condition and this helped her tremendously! you can research it if you like. So sorry if you get tons of advice and are sick of it, but I thought I would share just in case it might help!

Charlie, Jacie, and Avington Wright said...

I am so so sorry to hear the news. I am a mommy of a 1 year old from Ohio and I happened to stumble across your blog several months ago. I often read and tears just stream down my face. I am so glad your have our Lord and Savior to turn to, He loves you so much. He has the words you need to hear, the shoulder you need to cry on, and the hands to hold you up when you feel like falling. Please know my family and I are praying for you

Melissa Bosen said...

Kari,
I wish I knew what to do for you. I feel so helpless. It's awful to see a dear friend suffer so greatly and for so long...and not be able to do anything but offer support and prayers. I wish I knew how to ease your burden a little. You have to know I'd do it in a heartbeat. I'm still determined to figure it out. In the mean time, I'm sending my love and get well wishes.

Sarah said...

I am so sorry to hear your news. We will continue praying for you and Bree. You are so strong and such an amazing mother. You will all get through this!

Christine said...

I just hurt for you, but I know with all my heart that Bree and your family is in Heavenly Fathers hands and he will not burden us with what we cannot bear. Let yourself cry and then fight again. You are such special saints. You have such a special role here on earth with such amazing spirit children. You all are such an inspiration. We continue to pray you will get your party.