Saturday, August 9, 2008

DIAGNOSIS


Rogan began to limp....which, in a few days, progressed to her not wanting to walk at all.  When nothing showed on the X-Rays we went to Primary Children's Hospital on Saturday 8/2, for answers. She showed no other symptoms of illness. Blood work came back and her counts were off...indicating the possibility of some form of Cancer. Rogan has never been ill or been to the hospital for any reason...needless to say, the environment, staff and administered procedures during our first 24 hours, were NOT well received. That first night an IV was placed in her foot, her vitals were monitored every 4 hours and blood was drawn from her arms 3 different times. I'd like to commend the nurse who was on that night...he had the magical ability to strike the vein on the first try, each time despite her chubby arms and her resistance [she is strong]. Unfortunately, the nurse who was on the following day did not have the same magic touch and I was forced to make an executive decision and "re-staff". Sunday AM was spent recovering and that afternoon Rogan was forced to go NPO [fasting...not well received either] in hopes that she would go into surgery. They could not get her in, so she was able to eat that night and Monday AM was spent NPO again. She went in for surgery at 12:30 PM...and they were able to get the work done in 1 hour & 30 min:
  
1.) Bone Marrow Aspiration & Biopsy: a special Biopsy needle inserted in her hip, though the bone and into the marrow [a sample of marrow is pulled and analyzed to measure the Leukemic "blast" cells and achieve a "base-line" for the disease. The "blast" cells have "crowded-out" her marrow, prohibiting the production of the "good" blood cells and causing bone pain...which is why she is not walking.] 

2.) Central Nervous System [CNS] Prophylaxis: basically a "spinal tap" or we prefer "back poke". Test spinal fluid for Cancer cells [it was clear]....and also treat the spinal fluid with a Chemo injection.

3.) Indwelling Catheter [Broviac]: a special tubing inserted into a large vein in the upper chest. The catheter is tunneled under the skin of the chest to keep it firmly in place. The external end of the catheter can be used to administer medications, fluids or blood products or to withdraw blood samples.  The catheter must be flushed and filled each day [to prevent clotting]...and the dressing must be changed once a week to prevent infection. The dressing is an airtight adhesive and is painful & traumatic on both Rogan & Dad to remove and clean. No swimming : (

Rogan came out of surgery and was fine....within 2 hours she was relatively happy, eating ice [new obsession] and watching Elmo in Grouchland [another new obsession].
For the next 4 days we stayed in her hospital room and did the following in order of frequency:
1.) cared for her and became educated on her illness
2.) watched Elmo in Grouchland

Big thank you to all of our family and friends for the love and support. I am not a "blogger", Oncologist or Hematologist....but I am becoming proficient at all 3....so stand by and please send us positive vibrations.  

55 comments:

Rachel said...

oh my word. i am so sorry. please expect lots of love and good energy on the wind soon. this sounds so trite, but if there is anything i can do to help, please don't hesitate to ask.

xoxo,
rachel (clark)

Anonymous said...

Hey buddy. Hospitals with kids are not fun. We've definitely spent much time at Primary Children's with Tyler. Please let me know if you guys need anything at all. Our thoughts and prayers are with you, Casey, and Rogan. Ben

Rachael Rose said...

My thoughts and prayers have been with little r... May god bless the bella r with all of the healing and happiness that world can give her. I am here if I can do anything for you all.
Love,
Rachael (rocky)

Kathy said...

We are so sorry to hear this. Rogan is in our thoughts and prayers. We love you guys. We are here for anything you need.
-Tyson and Kathy

Lisa said...

I'll lay off the kisses for a while, but I need to see you soon!

Love,
Rawson

Leslie said...

biggest hugs and loves from me and my family...so so sorry to hear about what little rogan is having to deal with. my thoughts are with you all and my best wishes and prayers are yours!

Jared said...

So sorry to hear about sweet Rogan. You will be in our prayers. Let us know if there anything we can do.

Jared and Becca

rebecca said...

You've been on our mind and in our hearts since we heard. We're cheering you on. Becca & Jared Archibald crew

Anonymous said...

PRAYING _ PRAYING _ PRAYING!
Love to all,
Marty

Astle family said...

good luck guys we hope all goes great, and I hope Rogan is filling as good as possible we love you all and our thoughts are constantly with you.

Anonymous said...

Casey, You are in my prayers! Johnny sends his love also!
Aunti Wiss

Margaret Archibald said...

I hope it helps to know that we are thinking of you constantly. We will be very anxious for updates. We love you all and are so sorry you have this challenging trial.

Love,
Margaret Archibald

Anonymous said...

Thank you for letting us share in this unbelievable time in your life. Your family just jumped to the top of my prayers. I'm glad you got another phlebotomist. I used to be one and my mom was a medical technologist and believe me there is a difference in technique. In the hospital you have to fight for the best patient care possible. We're all behind you.
Joyce Woolf (Brittany's mom)

Katherine Foulger said...

We LOVE you guys and are definitely praying for you. I hope everything goes okay today at Primary's. Rogan is so blessed to have the parents that she does. I have been fighting a cold and so I have tried to stay far away (even from Camie) but I hope you know that I would do anything to help. She's going to make it!

Love, Kath

Laura said...

I can't believe it. I'm so sorry for all you are having to deal with. Your family is constantly in my prayers and please let me know if I can do ANYTHING. Lots of love, Laura

Anonymous said...

Csaey,
Just wanted to let you know that we all are thinking of your family and wish you the best!

Store 38
Adam D

Anonymous said...

The Halperns are thinking of you guys and sending some positive vibrations. We love you guys, stay strong!
xoxox
Nicole, Derek & Piper

Nicole said...

The Halperns are thinking about you guys and sending you positive vibrations. Stay Strong, we love you guys!!!
xoxox
Nicole, Derek & Piper

Gary Kessler said...

Casey and Corey,

I just got the news from Dewey. Please know that my love and thoughts are with you all!!!
I know it's hard, but please try to keep up with the occasional blog. It's a good release for your thoughts.

Love and Aloha,

Gary Kessler

WC said...

Casey, Corey and Rogan,

I wasn't kidding about my offers to help in any way. Let us know what we can do. I am SO close and have time! I am thinking about you guys constantly and of course wish you the best which you deserve and will get. See you soon.

Love,
Weston

Megan said...

Sending precious Rogan and your sweet family all of our love, hope, and comfort in this time of need.

-Lance & Megan

Anonymous said...

Just wanted to say that little Rogan and her parents will be in my prayers! I am very sorry to hear that she is having to go through this at such a young age.

Best Wishes for a Full & Speedy Recovery,

Dennis Earley

Anonymous said...

Casey and Corey, my love and prayers go out to you and little Rogan. Stay well and let us know as she gets better and better.

Go Rogan!!!

Warm Regards, Dale

Tanner said...

I can't stop thinking about you guys, I wish I was closer so I could help. You are in my thoughts every day. Stay strong. Love your cousin Kim and family

Anonymous said...

Casey and Corey,
I am so sorry and sad to hear the news but you are all fighters and I know little Rogan will pull through! My whole family is praying for you...keep us updated if you can find the time...XOXO
Love
Kelley

Anonymous said...

I talked to Dewey today and he told me. I am sorry to hear about this and want you to know you are in our thoughts and prayers. If there is anything we can do, please let us know.

Jerod and Jenah

Ryan said...

Sending you guys some Hawaiian Love and prayers. I will be sure to wrangle all my prayer warriors for you. Rogan is so fortunate to have two incredibly strong and wonderful parents. Stay strong together. You got your world of friends and family with you!!
Aloha,
Ryan and Christina Souza

Brinkerhoffs from Michigan said...

No wonder Darcy loves your family so much. You are wonderful loving caring parents. Hospital time is hard work.

We are thinking positive thoughts and sending prayers for Rogan.

love from,
Stevie and Rob Brinkerhoff

Darin said...

A nice poem I found:

I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.

She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.

When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.

Be strong guys

Anonymous said...

Though I have never met Rogan befor I see she has your beautiful,strong, blue eyes. As a mother I know this will be the most scariest thing to ever go through, but your STRONG! Thinking of you and your family.
Tana, Dan, Drew,& Maysen

sweetb said...

Wow, our hearts are all going out to you and I sure wish we could help in some way.. even if it means watching Elmo in Grouchland with the little dear while you guys prepare for your next big arrival. So many emotions, I'm sure. But know we are praying for Rogan and you guys, we think the world of you.
Liz(Benz), Justin and the Heit family

Anonymous said...

Rogan! This is your Auntie Kristin telling you to keep up the good work and be a brave little girl. Your mommy and daddy are going to take the best care of you and you are going to beat this thing so you can go swimming! Sydney wants you to know that even though parents hate him, Barney is really fun if you get tired of Elmo in Gouchland. I love you.
The Gunnells, Curtis,Cooper,Sydney and I are asking the universe for your healing.

Anonymous said...

Thinking of all of you and sending our love.
Brad and JoyLyn

Anonymous said...

Cutie pie Rogan is in our thoughts and prayers. As are you guys! Stay strong and know that everyone here is thinking about you.

-Cindy and Jamey

Anonymous said...

Words cannot begin to express how sorry I am to hear what all of you are going through. Rogan will remain in my thoughts and prayers until she makes a full recovery. If she is anything like her parents she will come through all of this with a BIG smile on her face.

Lots of Love,
Kari

Anonymous said...

My prayers are with little Rogan and your family. Please know that there are so many people thinking about you guys. Go rogan. Love Kenna Bertell Florie

Mark said...

We are so sorry you have to go through such a difficult trial. Please never hesitate to let us know if you need anything at all. We are praying for you.

Much love, Mark and Jessica Davis

Mooney said...

Cute little turkey. "This" child is built with the tenacity and ability to overcome anything. She is blessed to have parents who are strong and loving. You guys are lucky to have each other. Much Love,

SUZAN said...

You have all been in my thoughts since the moment I heard the news. Rogan will overcome this! She is so lucky to have such strong and loving parents, family and friends. You know that I am here for you, for anything at all. Please know that. I am only a phone call, email or even a quick text away. I love you all and will constantly be sending "positive vibrations" your way.
xoxo

Dianne Young Erwin said...

GO Rogan - you will be swimming in no time. Your Mom and Dad are very strong and they love you with all they are! You are in good hands and love is all around you. We are praying for you all and know you will get over this mountain. All our love and prayers every day until we hear it is gone. Blessings Dianne, Conner & Van

barbchuck said...

Dear Casey and Corey, Susan just sent us your blog about your adorable little Rogan. We are so, so sorry that you are all having to go through this sad and worrisome time. Please know that our love and positive thoughts are coming your way. We will continue to send them until we hear that Rogan is recovering. Much love, Barb and Chuck

Miss Molly said...

Hi Casey,

I am friends with Katie Quinn and Leslie and Rachel. I have seen photos of you, heard stories, and Monday Katie told me about your sweet Rogan. I am here in Park City and would love to meet you sometime. (But know you are on lock down). Please, please let me know what I can do. I'd love to bring you dinner sometime. I am praying for you.

robin said...

We are so sad to hear what your family is going through! All I know is that if your beautiful Rogan is anything like her mother, she is one tough cookie! We will be sending all our love and good thoughts your way. Stay strong!
xxoo
Robin

Paul said...

She has the most beautiful light, shining around her. It broke my heart and the rest of our family to hear this news from Grandma Bonnie, I am getting constant updates from her and your dad. Please know that we are praying for you all .... and don't wait to ask until you are to burned out for help. I can be there whenever you need and would be thrilled to just give you and Corey any respite. We can hardly wait for the news of the new little one and I believe that beautiful Rogan will be absolutely fine in just a matter of time.
Love and our blessing to you all,
Barbara and Paul Johnson

Anonymous said...

Hi Buddies,
We are all sending our positive vibrations to each of you and especially Rogan. She's a tough cookie. GO ROGAN!
Love Brian and Jess and our moms too!

Anonymous said...

Casey, Corey, and baby Rogan -
WOW, we are so very sorry and want you to know all three of you have been in our prayers. Roger told us yesterday about the correction of her bad cells. Great for one week. What a fight this sweet angel has ahead of her. We hope and pray for your continued strength to deal with the days to come. If there is anything we can do, please give us a call. All of the gang here in Hatch has offered to help with anything if possible.
Casey - stay positive as you will soon give birth to another angel.
Positive thinking is extremely powerful. We love you all and will keep you in our prayers.
Aunt Trudy and Uncle Neil
(Hatch)

Anonymous said...

That is great news!

Our thoughts and prayers for healing are with Rogan & your whole family.

Much love,
Steve & Bitsy

Anonymous said...

Heartbreaking.
I'm crying reading your story.
I can't imagine... Stay strong.
Wonderful news two weeks out... keep it up.
We will think of you all the time with love.
Cheryl & Dave (Rosenberger)

Steve & Laura said...

Our thoughts and prayers are with you! Stay strong! Laura and Steve Atkins ( 1101 Norfolk)

Anonymous said...

Corey and Casey,

My thoughts and prayers are with you. I am so sorry to hear this, but am so glad to know that she is in such good hands. You guys are such a great team and can get through anything together.

Love,
Colleen Cassidy

Silvia said...

Corey, Casey, Rogan and sweet Coco, Our prayers go out to you nightly as we pray with our little girls...I think of you often and praise your strength as you work thru this impossibly hard time...Rogan looks like a fighter and is so beautiful. And congratulations on your newest arrival, Coco is a beauty too. God bless you guys.
Silvia (Samarzich) and Mike

jennyolson said...

Hey Corey, Casey, Rogan and Coco!
Jesa told me about all your ups and downs, if you need anything, let me know! My thoughts and prayers are with you all!
xoxo
Jen Gibbons

Anonymous said...

Although I have never met either of you or your beautiful daughter Rogan, I am touched by your story and Rogan is in my prayers. I am a friend of Kelley Williams' and she forwarded me the link to your blog after I asked about your daughter. Your family is strong and you will get through this! Go Rogan!!

-Gina Watson

Terrie said...

Casey and Corey,
I am not sure why hard things come to good people, but I know that it makes us strong, and the experiences we have we could have no other way. You are both such good people, the Lord knew that you could help this special child. Rogan is lucky to have you as her parents. It sounds like she is progressing very well. I know it is because of your special care you both give to her. This is hard, but you can do hard things! I know this to be true though the help of the Lord. It sounds like you are being prayed for from friends and family members that love you. I hope that you can feel the love, the comfort and support that you receive from this blessing. I pray for you and your family members’ everyday, and all those that attend the temple pray for you also. Things will get better, one thing you can count on and that is change.

Aunt Terrie

Anonymous said...

Hi Casey & Family,
It's Lolita (Lauren Fine). I was just recently told about the blog site and just spent the last 30 minutes completely amazed as I scrolled through the stories and photos. Rogan is absolutely gorgeous! I will be sending out as much positive energy that I can possibly produce towards her full recovery. You were such a positive role model to me in my life, so I know that your children are very blessed.
Much Love,
Lauren