Saturday, November 8, 2008

Another long update...

I wrote the following on Thursday night and didnt get to post it until now...long post...beware!

Today was the first day that we could actually spend time in our house! I feel like I have been away for months! It was great to be able to stay home! Even though we've actually been home since Monday afternoon, we've been going back and forth to the hospital for continued tests with the doctors. So, it feels great to stay at home and feel as normal as we can for the time being.

In an effort to continue the updates, here goes...

The past few days have been a rush. I'm still somewhat lacking in the sleep department so hopefully this all makes sense. On Tuesday we took Bree back to the hospital to meet with her doctor, do blood work (measure where her white blood cells (WBC) are) and get some nuclear medicine (dye) injected into blood stream. Confused? Me too. Basically, what this dye does is stick to any cancer cells throughout her body. She is then put under a huge camera-like scanner that will basically make the cancer glow. This test is called an MIBG scan, in other words, a glorified organ & bone scan. We feel we are getting to know our way around the hospital pretty well now. :)

Wednesday we went back in for the MIBG. Bree wasnt allowed to nurse for 5 hours prior to the test...which made for a very unhappy baby. She was put to sleep with local anesthetic and the test lasted 2 hours. They took multiple images of her body and we should know the outcome sometime tomorrow, if not next week. The doctors dont anticipate the cancer being anywhere else in her body and this won't change the stage she is in (stage IV, intermediate), it will just basically establish a baseline for us to measure how much the cancer has shrunk after 3 more chemotherapy treatments.

As of now, she is scheduled to do another chemo treatment on November 21st. Please keep her in your prayers especially this day. There are several drugs given on one day and this will be very hard on her. The chemo drugs are scary with all the possible side effects.

It still is hard for me to fathom the fact we are going through this. Still, when I start telling someone about it, I have a hard time saying the words "cancer" and "my baby daughter" in the same sentence. We are still taking it one day at a time. I've already seen how strong and brave Bree is. She truly has a strong spirit and I know she'll get through this. We have great faith in our Heavenly Father and I know that He will carry her through this.

As for the boys, they are doing well. They've had lots of sickness this week but are doing well for the most part. We truly are so thankful to all those who have helped our little family...all the acts of kindness have truly touched our hearts and humbled us greatly. Thanks to you all for the constant prayers, meals dropped off, babysitting our boys, nice notes, flowers, and just checking in with us. Love you all!!

Here's a few pics from Halloween. We were able to get out of the hospital for a few hours to trick or treat with them. It was GREAT!
The boys had lots of fun getting tons of candy. Caleb was exhausted but it was so great just to be with them!

And the latest update...

Thursday night (Friday morning) Bree spiked a fever of 101.5. (This may not sound high, but for any cancer patient, it’s bad news). Anytime she gets a fever this high we are to immediately call the doctor and head to the hospital. So that’s what we did. Before we left, we said a prayer and asked that her fever would drop and that she would be all right. I arrived at the hospital by 2am and she was admitted right away. She started receiving antibiotics immediately in case there was a bacterial infection in her broviac IV line. The nurse then did a blood sample and did labs to see where her blood counts were. She also took her temp again and our prayers were answered. Her temp was totally normal. Even though it was normal, we still had to stay to make sure her labs were in check. So, we tried to settle in for the night but didn’t get much sleep.

The next morning we discovered that Bree was neutropenic. This basically means that her white blood cell level (absolute neutrophil count – ANC) dropped below 500. You and I normally have an ANC of 5000 or more. Hers was 42. The doctors suspected this would happen, just not so soon. Typically, patients receiving chemotherapy will drop 7-10 days after a treatment but she dropped earlier. Since her decline happened so soon, she was given a growth hormone stimulating factor (neucopene) to stimulate her white blood cells to grow new cells (neutrophils) that would bring her back up. It’s most likely we will be here a few more days. The docs want to be on the safe side and wait until her counts climb and she stays fever free.

On Friday the results from the MIBG scan came back. Unfortunately and to the surprise of the doctors they found that the cancer had spread into the long bones of her arms & legs, shoulder bones and pelvis. It didn’t show up in the bone scan but the MIBG scan is more sensitive and was able find it. This doesn’t change the treatment or the prognosis but nonetheless it wasn’t the news we wanted. The doctors tell us with the current chemo treatment, it should kill the cancer in the bones as well as kill the tumor in her abdomen.


This morning Bree woke up thinking it was still Halloween because she looks like a football player :-). The bruises under her eyes have grown bigger and look like they may turn into “raccoon eyes” which is how it looks on a bone scan (the bruising goes all around her eyes). The doctors don’t seem to be worried about it. It’s just part of the ups and downs. Despite all of this Bree has been very content. She is laughing and smiling more and doesn’t seem as nauseated. Her personality has been a breath of fresh air for us. Her sweet temperament brings a smile to our face as we deal with this disease.

So we had a few set backs this week. But we also realize that is part of the deal. If it were all easy then it wouldn’t be a trial of faith. If everything always went as planned then there wouldn’t be room for any miracles. Sorry if these posts seem rushed, we just don’t have a lot of time these days and want to people to know what’s going on. Thanks again for your continued thoughts and prayers for our Breezy. Love, Kari & Justin



42 comments:

Castle Family said...

Hooray I get to be the first to comment :) I had heard you were back in the hospital this week, but didn't hear why, so thanks for blogging and keeping us in the "know". I'm sorry to hear about the unexpected results of her tests. That must be hard, but it sounds like you're trucking forward. I am still amazed at your strength. Thank you for your example of faith. Love you!

Steph said...

She is such a beautiful girl. We are still praying for her and for you all--my boys pray for her too in our family prayers. We'll be fasting for her again tomorrow. I know this must be so hard. I just hurt for you and wish I could make it better. But I think that somehow, Heavenly Father will make up for greater suffering with greater joy and blessings, someday. We love you all.

Emily Lauren said...

Thanks for the update. We are fasting for bree and your family tomorrow too.
She is so beautiful and it breaks my heart to see her with those black eyes- especially smiling and so happy. What a sweet, strong little baby girl you have :)

Kathryn said...

Thanks so much for the update - we've been checking daily! We too are praying for you both and Bree. Modern technology is amazing, but the hand of the Lord can do more. This is a trial of faith like none you've ever had, but we know you will survive and grow stronger. (We have to don't we?)
Hang in there!!

The Reed Family said...

Kares, I love you so much. I so enjoyed spending time with you and Breezy today. She truly has the sweetest spirit and most easy-going temperament. "Angel Baby Bree" and "Breezy" are the perfect names for her!! Yet, she is also incredibly strong and resilient. Her "shiners" are a testament of her toughness!! What a little trooper. She's learned from the best...her mommy! Your strength, courage and faith never ceases to amaze me. I know you've heard this over and over, but if there is ANYTHING you need at ANY TIME, please call me! I love you and your sweet family dearly. We continue to pray and fast, and know that with God all things are possible!!! Love you, Love you!!!

The Greenest Goddess, drinking 2 green drinks a day and other stuff that is healthy. said...

Kari, I had no idea you and your family were going through this. I am praying for your sweet daughter, for you, Justin and your family.
Love you, jodi goodman

Kelly said...

Kari & Justin,
Wow what a week! Bree is so STRONG!! I only wish I could be that strong! And you two are such examples to us! It's sad that sometimes we learn through other's trials, But I have learned a lot from you guys!And I am greatfull for that! I pray everyday for you guys to be strong, and have the spirit with you to lead and guide you! And I know he is!I pray that I can be as stong as you in my trials that I will be faced with! Love you lots! Kelly

Frankie and Krista said...

You guys are so strong. What a great example to all of us. Our family prays for you guys everyday. Our kids never forget Bree in their own prayers at night. Stay strong. We love you guys!

{jennifer} said...

Kari I think about and pray for your adorable family daily. May you all feel the sweet peace and comfort of our Savior during this time. Your unwavering faith and courage amazes and inspires me.

Tina said...

Thank you for taking some of what precious little time you have to update your blog... Anne had said she was back in the hospital and asked that our prayers for her increase... what a privilege to do this for her. Thank you for your courage and sweet spirit...
The McKinnons,
previously from Lehi 1st Ward

Aunt Bow said...

Dear Kari and Justin,

I am so very sorry to hear about what Baby Bree is going through. She is just such a precious little girl, and she has been in my thoughts and prayers since I heard about her cancer diagnosis.

God is a God of miracles, and I pray for the miracle of complete healing for Baby Bree. I also pray that you are blessed with the peace of God: a peace which comforts the soul despite the difficulty of outward circumstances.

I wish I lived in Arizona so I could babysit the boys, or help out in some tangible way. Please know I am praying for all of you, and I have asked other family members and friends to pray as well. My 13 year old son Carter (your cousin) sends his love and wants you to know he'll be praying for Bree too.

Love,
Aunt Bow

brownymama said...

Kari, once again you amaze me. I've always felt that way about you, but you just continue to amaze me more and more. I love you so much. Couldn't ask for a better sister! I'll forever be grateful to Justin! Bree is just like her Mommy. Sweet and amazingly strong. I need to hold her again. And those toe headed little nephews of mine too. See you manana!

dustin and amy said...

Thank you so much for your updates. I am always thinking of your sweet family. I feel so blessed to know you and to feel of your spirit. Lots of Love! Amy

Suzanne said...

Kari, I just wanted to know that I'm praying for your sweet little girl and your family. You are all incredibly strong and it is amazing to see your baby still smiling. She is a cutie! I'm so sorry that all of you have to go though this. I will be checking your blog often for updates.
love,
Suzanne (Banker)

Karis said...

I am glad that you got to enjoy a day at home! Bree looks great in those pictures! That makes me happy that she still has her spirits up despite all that she is going through. That is another blessing that you are receiving from Heavenly Father. I keep thinking of you. Thanks for the info and keeping us updated. We will keep up the prayers.

Clay's gal said...

What a beakon of light Bree is! Bless her little heart! My boys ask me daily how she is doing and they never forget her in thier prayers! We think of you many times through out the day and call Kristin and Tim for updates! Kristin tells us how amazingly strong you are. That is just what Bree needs! I truley admire you Kari! You will get through this and so will Sweet Baby Bree and she will be a constant reminder to all of faith, hope and prayer! Love you guys!

Suzanne and Davey Maughan said...

Today, as me and my husband were sitting in fast and testimony meeting in my parent's ward (my home ward for my entire life), my best friend's mom got up to bear her testimony and much to my surprise, she started talking about Bree! I was planning on asking her after the meeting if she knew you because of Caleb's connection (that sounds weird but it's Gina Johnson and she is the founder of Sharing Down Syndrome AZ), and obviously I got my answer when she bore her testimony not of a down syndrome baby in need (she is so sweet and always asks us to pray for the sweet children she meets) but of a 7 month old baby who had been diagnosed with cancer. I knew it was about Bree and was so thankful to know that even in places where Bree may not be known by name or face, people are now praying for her.
You're attitude inspires me to be a better wife and mother. There are times when my daughter was colicky and all I wanted to do was hand her off but I truly realize how precious our children are to us.
I hope things continue to progress.

kemra said...

I saw a link to your blog through one of my friends, and I just wanted you to know that our thoughts and prayers are with you, your beautiful baby, and your sweet family. I feel like I can "see" her sweet spirit!

May the Lord bless and strengthen you all during this difficult time.

Joe and Amy said...

Our prayers will continue to come!

We will put your family's names in the Boise temple here in Idaho. I will specifically pray that you will feel rest without the sleep. This can also be part of the miracles.

When the Savior had finished teaching large crouds of people...he was EXHAUSTED. He went to spend time alone to rest when he found out that his cousin and truest friend, John the baptist, had been killed. Through his devestation he went to be by himself and mourn. When the people found out where he was though, they rushed to see him for more inspiration and council. His apostles, knowing he had no sleep and no time to ponder and pray through such a devestating time, tried to send the people away. The sweet Savior lovingly let his apostles know he would welcome them instead of sleep. Even when he had every right to request his own time...He was serving the people and putting their needs above his own. HE KNOWS that you are putting Bree before yourselves. He is the true understander of all things- even sleep deprivation and sorrow. As you ask him to offer you more of his strength...he will surely give. He can carry you forward and give you rest in ways you may have never felt before.

We'll ask for you as well.

Amy Dillon Napier

Jason and Shay Johnson said...

I am sorry that you had a few set backs this week, but we will continure to pray for you. I can't imagine how hard this rollercoaster must be, but your faith is amazing. She sure makes a beautiful football player! And your boys looked so cute for halloween.

Aften said...

Hi there,I just want you to know that I am thinking about you and your family and praying for your peace and comfort during this very difficult time. Love to you and your family. Aften Wright

JakenDebbie said...

I know I have said it before, but I am so amazed at how tough Bree is!! She must get that from her tough mama! Thank you for the updates...it's good to hear how things are going and to be able to pray for specific things. You have an amazing little family, Kari! Love you!

The Scotts said...

What a sweet baby girl! She just looks so happy. You guys are amazing and we are continuing to keep you in our prayers!

Nuestra Familia said...

Love You Kari, Justin, Caleb, Gunner and Sweet Bree. Our prayers are more often and longer thanks to Bree. Hopefully you will be home soon. Thanks for the update, she is a strong little beauty. I love to see pictures of her, brings a smile to my face.
I'm glad you were able to go trick or treating with your handsome boys, LOVE, Rays

Melissa Bosen said...

Kari & Justin,
Thank you for taking the time to update all of us on how Bree is doing. I know it's not easy to sit down and do that.
Most of our comments are directed towards Kari because she is the Mommy, but Justin, I'm so glad that Kari has such an amazing partner in all of this. You are so courageous and have the ability to give blessing of comfort when they are needed. Hang in there!!

I appreciate Amy's comments about the Savior pushing through his own grief and exhaustion to help others. It is so important for you to take care of yourselves and get that sleep, but I will also be praying for the Lord to bless your bodies and minds with REST.
Love you guys!

Alisa Larson said...

A girl with black eyes could never be more darling than little Breezy! It was great to hold her the other night. Oh, I picked up that Lullaby CD, so I'll drop it off tomorrow! Love you guys!

Travis and Marie said...

OH my word! I haven't checked your site for a while. I am sitting here sobbing at your posts. I am sorry to hear what you and your family are going through...what a great example you guys are of faith and perserverance. I will keep you in my prayers. Love,Marie.

Tom & Lindsey said...

Your sweet family are in our constant thoughts and prayers. Many years ago my sister and her baby girl went through this very same thing. Your faith and strength are amazing and just what little Bree needs. My heart is full of thoughts and love for your whole family.

Brad, Briene and Brayden said...

Hey Kari
I just heard about your story and wanted to let you know that your sweet little Bree and your family is in our thoughts and prayers. She is such a beautiful little girl. I hope you are be able to head back home again soon.
Love
Briene Wagner(Walters)
Phillips old neighbors

Jessica said...

Thank you for sharing Bree's story with us. I found your blog through Summer Driggs' and your story has been so inspiring. I'll be praying for you and your family during these tough times...keep your spirits up.

Whitny said...

I am so glad that you are keeping up on this blog. I was wondering why she was back in the hospital. But now she is out again. We love you and are praying for you always.

Tim and Shay said...

You are in our prayers. Bree is so lucky to have such a wonderful family. I grew up with Justin. I was in his ward in Lehi. Harvey and Ann look just like I remember them. They are such a neat family. A freind of mine from High School (Sarah) sent me your blog. I'm so glad she did. Shayleen (Jones) Palmer

Kym said...

We fasted for Bree on Sunday and continue to pray for her and your family. Miracles can happen! Take care and thanks for the update.

Melody B. said...

Um, your sweet baby girl...is amazing. What a trooper! A smile to accompany her trial, seriously...amazing. You and Justin are pretty amazing too. I can't begin to imagine the stress and toll this has been on you both. So glad people are helping you. If there is ANYTHING we can do to help, you name it!:) We will continue to pray for you all. Love you!

Crystal & Craig said...

I'm SO glad Bree was able to go home! I admire your strength and Faith. Heavenly father will help you through this. If you need anything, please don't hesitate to ask! We will continue to keep Bree and the family in our prayers.

Love,
Crystal

Shawnie said...

We are here and praying for you. If you want for anything--a break, food, a listening ear, soft tissue (I know the hospital has awful tissue), really anything we can do we would love to help. You are so smart to look at things as the big picture and not get thrown off by the millions of ups and downs. Everyone has said it and I agree, you are amazing!

Aimee's Family Journal said...

Just thinking about the day I'll be having another baby of my own soon. It is amazing how the Lord works. How we have no idea what experinces life can bring. Who knows what this new baby will bring to our family. I am so grateful that you have been able to love her, and take care of her, and support her through this! I think of the blessing that it is, that she is so young and innocent. That her life revolves around her family, and nursing! As long as you are there for her, she has the world, in her eyes. I'll pray for you to keep up your strength, and your faith!

kkmitchell said...

And yet she smiles through it all! Thank you, you have truly taught me what strength and faith is really about! Always in my prayers!
XXOO

britty said...

we continue to keep Bree in our prayers. and our door is always open for the boys, or whatever you may need.

Beth Loomis said...

I found your site when looking at a fellow teachers site and your story touches my heart. My first child,a son, was born three days after your Bree and I can't help but cry when I read your story. It touches my heat. I am praying for you daily and even though I don't know you, I think of you and your family all the time. You are a strong woman with a wonderful heart. I only hope that I can be as strong as you some day.

Herbert Family said...

We are so humbled by this trial your family is going through. You are such amazing people. We pray for you daily, and thankyou for the example you both are to us. You have such an amazing family, and we know that all of you are being cared for very closely by our Heavenly Father. Thankyou for the updates, and we are always here for you.

Love,
Mike and Nicole

Anonymous said...

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