A month into 2017…

Written on Tuesday, January 31st @ 8:25am

I am sitting on my couch, Calvin at my side and annoyed that their is a laptop on my lap and not him. My coffee is to hot to drink and I can hear the wind blowing outside, Oh I sure hope we all get to see the sun today. As I have been up thinking of everything I need to get done this week I thought I would take sometime to respond to some of your messages.

Christmas was wonderful. I kept thinking to myself, what a blessing that we are all together. I think I said that to myself over a dozen of times. It’s funny how you really don’t think about what a blessing that is. You kind of just take it for granted. I am so lucky to have my mom, my uncle and aunt, my brothers, my family all still here with me.

It was also nice to have Crystal and Gage, Courtney and Alec, Cassidy and Jonah all together. I love their kind hearts, their energy, and how they make the holiday complete.

I can’t believe we are in 2017! It is crazy how time flies. Again, I realize how lucky we are that just a few months ago, we celebrated a wedding with all of our family and friends. To have that time, to make that memory is truly more meaningful to me today.

So the last time I posted, we had gotten our news about Crystal. That they found something but then they didn’t find anything. So instead of 3 month check they would like to see her in 6 weeks. Well, that day is coming up, Thursday, February 16th.

Now how is Crystal doing? Well, she is extremely busy. This last week has been a little rough. It seems that when it is about 3 weeks to the next scan, the nerves and tears try to take over but she keeps pushing forward and I couldn’t ask for anything more.

I must say, this next scan will be difficult one for me. She will be going up and coming home all in one day. She will be getting her results immediately and for the first time I will be getting the results over the phone. Yikes!

I am sure you are wondering how I am handling that…Well…

It was Christmas Eve. Crystal came over in the morning to wrap just one more surprise gift for her hubby. She hurried up and wrapped it, knowing she needed to get home quickly because she would be coming back over for our Family Christmas at our house. Before she left, she was just standing by the front door.

She was like mom, I turned to her and was like what.
Well, I know when I am going back to Mayo already. I was shocked, really?
Yea, I just got it. And mom, all of my appointments will be done in one day.
I was even more shocked, okay.
And Mom, I am going to be turning 25. And. And. I would like to go to this appointment with just my husband.
Our eyes are staring into each others. She looked like my little girl asking for permission. It was crazy, I could feel from the top of my head to my toes this warm feeling. Gosh was I gonna cry, was I calm, was I shocked, was I angry but something came over me as I stared into her eyes.
I smiled and said, honey I sure do understand. You are a woman. A married woman. Crystal immediately says, well mom, if you really want to come, then you can but I would like to try it this time alone.
I immediately said, no worries Crystal. You’ve got this.
Crystal smiled, see you in a bit mom and turned and walked out the door.
What did I do? I went to my room. Cried a little bit. Chatted with God for a minute. And did my best to focus on the blessings of the holiday.

So Christmas went by. New Years Eve went by. And I am watching my life go by, thinking hmmmm so this is life. I sure did go through some emotions. You would do anything for your child. You would sacrifice everything for your child. You never stop being a parent and being a parent comes with no guidebook.

I am happy that God gave me strength to answer her with a smile which in return gave Crystal the confidence to know that it will be okay. Even though I knew as a mother I needed a little more time to take it in.

I think what helped me the most was knowing that Crystals immediate family, was now her husband, Gage and her cat, Storm. That’s it. And honestly that is really all that matters. I am a mother who will love her no matter what and that is my job. So, it’s gonna be okay. But hey, if any of you want to get coffee on February 16th, let me know 🙂

Tonight Crystal and I were talking about something else that has recently been brought to our attention. Crystal thought, when you write in my story mom, I think you should share this, I am sure I am not the only one that this has happened to.

You know it is human nature to gossip. When you are with friends and trust me, family. You discuss others that are not there. Goodness, I have ran a team of women for over 23 years. I get it. And usually it is really nothing. But when it is something very hurtful, that you can’t control, you have to learn to deal with it.

Learning that a friend has made remarks to others, that she is sick of hearing about the Cancer thing. That Crystal uses Cancer to get attention. That her mom talks about it, almost like she trying to promote her business with it. I must say not only angered me but crushed my heart because you would really say that out loud. That you would truly think that about her, about me. I would call you a troll but you know us.

It is funny how at first, I was the one furious, annoyed and Crystal, she stayed strong. She really didn’t care. She even asked me, is it strange that I don’t care? I of course told her I wish I had a little of that attitude. I would probably me a much happier person in life. Crystal smiled. As I did explain, like I did to my girls while they were in school. People that are overly friendly usually have an alternative motive. Smile & don’t hang around it.

So Yep, that has been said. Not the first time, we have heard that before and I am sure it will not the last time. So why tell you all about it. Because Cancer is a journey. If you recall, Crystal was accused at a bar for lying about her Cancer. Huge argument from a girl she didn’t know.

And as far as me promoting my business? Well honey, it happens to be my dance studio, a business that is a huge part of “all” three of my daughters lives. With that being said, this business is part of our journey that WE are on. If it bothers you, you don’t have to be apart of any of it.

When I think of the dance studio, CR Spirits, that I started in 1993 in a garage, with no dance background, no business education. I am proud to say, I took a dream and made it work. Keep in mind, not only was I 23 years old, I was married and starting a family. Yep, work. Lots of it. And in the end, all those people that have touched my life in that dance studio have prayed for my daughter and honey, that is a blessing that I am sure people are jealous of.

When I share her story, it was to help me tell all of the people that were close to me what was going on at one time. What I learned, is it emotionally helped me. That is probably why counselors tell you to journal. What I was shocked with, was everyone who was inspired with her story through my eyes.

I learned from Oprah in 7th or 8th grade. Tell your story, because when you talk about it, you own it. And Oh how she is right! I wish I could Thank Her for that Remark. That statement I have carried through my whole life. And knowing that sharing our life journey, helps Crystal own her story, receive many prayers on this difficult journey, raise awareness of Pancreatic Cancer, as a mother that is truly all that matters.

As I told Crystal, Courtney and Cassidy all kinds of people make the world go around. And to remember, “If they do it with you, they will do it to you”.

The day has come…

Written on Thursday, December 22nd
Started writing @ 2:15pm but finished it @ 4:45pm

I am trying to pass sometime as we wait for Crystal with the added procedure that needed to be done.

We drove up Tuesday evening since Crystal’s tests were going to begin early in the morning on Wednesday, Crystal’s Grandma Shari’s Birthday.

The drive up was nice. The roads were not too bad with the weather and there are many Christmas Lights to look at, which made the road trip to Mayo different. Gage drove, as Crystal joked with him in the front seat and Courtney, Cassidy and I were snuggled in the back seat and we seemed to dose off an on.

Rod stayed home. He is very busy at work and if he left he knew he would have to work the holidays. Also, we knew this was Courtney’s first trip to Mayo. She was always in school so it was hard for her to leave with class/tests. We looked forward to showing Courtney around. We looked forward to showing Courtney what a miracle this place is.

As we arrived at our hotel Gage had us all watch a movie, “It’s a wonderful life” it was nice to watch it together even though Cassidy fell asleep. Such a beautiful story behind that movie.

I didn’t sleep very well. I couldn’t get my mind to shut off so, for the first time in four years I didn’t go to the blood work or cat scan appointment. Crystal had her loving husband, Courtney and Cassidy with her. I took my time getting ready.

Once I met up with them, she was onto her MRI then we were off to the Mall of America. Of course we did our “Flight Over America” Ride & this time it took us to the North Pole. That ride always makes me tear up. After dinner, it was back to our hotel for another movie…”Elf” was the one picked.

This morning in the hotel room, I made a remark for everyone to pray. We all continued to get ready and then off to her doctors appointment.

Your mind and heart just automatically race. What if it’s back? What if it’s not? Will it ever be back? How will the family take this?

As we sit in the waiting room, Courtney asked, “Do we all go back when she goes in with the doctor?” I said yes, we are all in this together.

Her buzzer goes off and back to the room we go. We all follow Crystal like ducklings following their mother. Once in the room, one of her team doctors comes in. We’ve never met him before. He was nice looking, kind and had a fun personality. He immediately begins to ask her about any symptoms. Anything like how she has felt before when she was sick? My heart dropped. I had so much hope. So much faith and I knew it was going in a different direction than I thought his conversation was going to go.

They found a spot in her liver, near her ribs. They were hoping to get her back in for an ultrasound to see if there could be a chance to remove it but if they couldn’t she would have to begin Chemo again. Everyone was quiet including our fighter. There were no tears in the room. I don’t even want to say we were shocked, we were just hopeful that the news was going to be different. So they scheduled a ultrasound and another meeting with her team of doctors for the afternoon.

Needless to say, a very long morning. 5 adults with different feelings, different views and different ways to handle it.

Crystal makes a remark before we eat a light lunch. Mom, if they can’t get it, I wonder if they will let me do Chemo after the Spirit Show. Ugh…I thought to myself, I don’t know if I can do this again.

So this is where we are at. Crystal is in the Ultrasound Room. Courtney has decided to be positive and apply for dental jobs online and has already lined up a phone interview. Cassidy and Gage keep each other very busy. They’re so funny and truly are a brother and sister relationship. We really are blessed that we get along. That we do enjoy each others company. And me, how am I doing….Well, I don’t post anything on Facebook because what do you say? Plus Crystal wants to be quiet until we are confident in what we are doing. So needless to say, I made a call to Rod, my mom and sent out a few messages. And as I wrote in my journal, I had a few words with God. Like at first I was mad, then thankful, then mad, then okay what do you want? Like are you real? Why is this happening?

Hmmmmmm Crystal is out from her ultrasound….I will be back in a bit.

Now, I am in the car. The sun is going down and when I look out the window the snow makes the fields look like a pretty Christmas picture. Cassidy is out on my shoulder. Courtney is listening to music. Crystal is our driver and Gage is playing Christmas music.

So Crystal comes out of the room walks right over to Gage and sits on his lap. She is smiling. AND she says, they didn’t find anything. We all were like WHAT? She is smiling and says Yes, they really couldn’t find anything and what they did see they felt could be a birth mark? I immediately asked her if she was teasing us? If she was lying. She said no, we are going to meet with the doctors now and I already spoke with the ablation doctor. Well, everyone the mood changed. Everyone was laughing, picking on each other as we were heading back to the 10th floor.

I personally was thankful that they got the ultrasound in today and didn’t make us wait until after the holidays with the sick feeling that it was back. Plus I thought gosh did God really hear me? Did he listen to the ones I messaged? Oh gosh I don’t have time to figure that out we have one last appointment and I don’t want to be to confident.

So after speaking with the doctor. They would like to see her in 6 weeks to make sure this spot has not grown. Merry Christmas Crystal, it maybe a wonderful gift to you but it sure reaches many others. Amazing how a few hours can change everything.

Merry Christmas & Happy New Year from our family to yours! Trust me I will be reaching out to you all in 2017 for more prayers. For now, I just want to enjoy the car ride and count my blessings.

Merry Christmas…

Written on Tuesday, December 13th @ 2:15pm

It has been a month since I last wrote and did an update. Such a cold and sunny day in Iowa. Looking out the window from my cozy chair, it sure is pretty outside.

I did receive your messages from everyone wearing purple on November 17th. Thank you. I think we have done good on our end raising awareness for Pancreatic Cancer but you can always do more.

How was your Thanksgiving? Our Thanksgiving was wonderful. Rod does have a talent in building homes but I am telling you, I think he is an amazing cook. And honestly, I am not the only one that says that.

We really got to enjoy this Thanksgiving without any chemo…So it really was a blessing. Funny what we take for granted. Four years ago, I would of never thought of saying something like that. Things happen in our lives for a reason. I would have to say maybe it’s to wake you up and realize what is important.

I received a beautiful letter in the mail from a former CR Spirit Students mother from years ago. The letter was very kind and she had been following Crystal’s Story. She knew that she loved Beauty and the Beast, so she gave me tickets to take my daughters to the show. I had never been in the Theatre of Cedar Rapids. Oh I must say, the talent was incredible and the atmosphere was fun. Funny how I helped her daughter years ago and now she was helping mine. People really do come into your life for a reason.

Today is a good day. Crystal’s sister, Courtney has finally finished her last day of school. She has been going to school since she was three, lol. She now has her Liberal Arts and her Dental Assistant Degree. Plus she has worked throughout college to pay it off, so no college debt. Very proud of you Courtney. She is now looking for a Orthodontics Office. I think Ortho touches her heart because she sure was picked on in grade school because of her teeth. Kids can be so mean…Oh goodness, people can be so mean. But again, those experiences help determine who we become.

We have been hearing from a few of you, asking how Crystal is doing? Or how we are holding up as a family? I think we are doing pretty good. We are staying very busy. Crystal took a part time job at Coe College to keep her mind busy in the morning and then she is focusing on dance at night. With any free time she has, she is with her husband or her sisters. Not saying she doesn’t have her moments but she doesn’t have time to get too depressed.

Crystal’s next 3 month check at Mayo is next week already. Crystal had two options to choose from for her appointments. Her sister, Cassidy’s birthday which happens to be this Friday or her grandma, Shari’s birthday. Since we have had a few things happen around Cassidy’s events, Crystal chose to do it on her grandma’s birthday. December 21st the testing will begin with answers on December 22nd. It is going to be a long week before the holidays but I do know we will get through it. We will get through with the help of your prayers.

Hmmmm someone is at the door…

Crystal has just arrived at my house for a cup of tea, as she says with a smile. What a nice surprise. She loves this tea I make for her, it is from Teavana. I read the post that I am about to make to her. She then says, “It is hard not to think about it mom and I really want good news. I don’t want to go to Gage’s family Christmas and it be all about me and this Cancer. It’s not fair to everyone else”.

As I tell her I am going to write that in this post. She is quiet. I guess it is time for me make her some tea.

How is Ms. Kuehl? Excuse me, Mrs. Barnett doing?

Written on Monday, November 14th @ 7:00pm

I am at the Dance Studio tonight and just received another notification asking how Crystal is doing? I guess, I should do a quick update.

Since the news of “no signs of cancer” back on September 23rd, Crystal has been loving being Mrs. Barnett. She has enjoyed decorating her home and for the first time in four years, enjoying not being sick for more than 3 months.

Of course Crystal & Gage are adjusting to married life, with smiles and goals. Switching everything in their names, changing her last name and switching the Health Insurance has been learning experience for all of us.

We hope everyone had a safe Halloween. Crystal loved being at her home to pass out candy. I think she was hoping for more trick-or-treaters, maybe next year.

November is Pancreatic Cancer Awareness Month. I was asked to speak at the PanCan Purple Light in Cedar Falls. Crystal stood right up there with me. She listened to me talk, she smiled and not only did she inspire others, it was wonderful for me because I was inspired by listening to everyone else. Everyone has a story.

Thursday, November 10th was Carcinoid/Neuroendocrine Tumor Awareness Day which Zebra is the color to wear.

Thursday, November 17th is Pancreatic Cancer Awareness Day which Purple is the color to wear.

Last week was a rough week. Crystal has been fighting a terrible headache, she has a few enlarged lymph nodes on the same side as her headache. After about 5 days she couldn’t take it anymore so she went into see her family doctor. Of course with Crystal having Cancer they had to do a MRI to make sure nothing was detected in the brain.

We shed some tears in the doctors office and then immediately wiped those tears so we could get scheduled for the MRI and get the results hopefully before the weekend. I really was going to reach out but Crystal wanted everything quiet until we had answers. We got our news Friday afternoon. The MRI didn’t show anything, with that being said we shed tears again.

Now tonight at dance she still has a headache. It is a sharp pain and this week it seems to be moving around her head. We are in contact with her doctors and hopefully it will just go away.

I must admit if you look into her eyes you can tell she is not herself.

Through all of this worry I asked Crystal some fun questions to keep her mind focused on something else, I will share them with you.

I asked her…

“Let’s say you could never leave your home. You can be in contact with family and friends but never leave your home. What would you do?” She smiled, laughed, thought for a bit and then stated she would color, do board games actually mom I would get the old Spyro video game out.

“Let’s say you get a couple days out of your house and you can go somewhere, anywhere for just a couple of days. Where would you go?” She immediately said, the mountains. I asked her what would you do there? She smiled and said, just sit there mom and look at them, look around. Mountains are beautiful. So like Colorado, Crystal? Yep Mom. Yea as she was shaking her head, smiling.

“Let’s say you are back at home again and now you get to go somewhere for a few weeks. Anywhere. Where would you go?” With a big smile, no hesitation, GREECE! I was surprised. Greece hmmmm why? It looks beautiful, the culture, I think it would be incredible.

“Now let’s say you are back at home but now you can drive anything you want as a vehicle. Any car, truck, motorcycle, monster truck, even a boat, a plane heck even a roller coaster what would you be traveling around in?” She said I want a Range Rover but for now…I will ride around in a Jet Ski.

So as we laughed, she smiled and we continued to eat our lunch. As a few minutes went by Crystal smiled and said it’s your turn mom. You answer them. I said no, it was just for you. She said no mom, I want to know your answers. Okay…

I must admit deep down inside I could feel my heart skip a beat that she really wanted to know my answers.

Okay…1.) I would work on my photo albums. I would scrapbook. I would make a book for everyone I love. Crystal said yep that sounds like you. 2.) I would go to the ocean. I would go to Huntington Beach Cali. Crystal smiled. 3.) I would love to go to Bora Bora. Crystal said good one Mom, that is a good one. 4.) I want a convertible. I’ve wanted that for many years.

Such a fun little way to learn more about each other.

And as Gage and I sat waiting for Crystal’s MRI to finish up. I chatted with Gage about the questions I had asked her, he smiled. And guess who got his old Spyro game out for Crystal this last weekend. Yes he sure did and yes, he is crazy about her.

We got our news…

Written on Friday, September 23rd @ 1:05pm

Well, we can feel your prayers, your positive energy and your love.

That was a long hour waiting in his office for the news.

My heart was racing, Crystal felt sick, Gage kept holding Crystals hand & Rod stayed quiet.

I couldn’t tell if the doctor was surprised or was just happy to say…they don’t see anything. No tumors. Nothing was detected.

I can’t tell you how happy we were in that moment. I started to cry, I even said I know I don’t look happy but they really are happy tears. I was shocked, thankful and excited all in one.

We immediately told her sisters, called grandma & made celebration plans for dinner when we get home.

Crystal did go Live at Mayo and we did post her beautiful wedding video a gift from our dear friend Kevin Railsback. The video kept all our minds busy thinking of that happy day.

Crystal next big appointment will be in December. I promise to stay in touch with you all, you are the blessings that God gave me.

Link to her wedding…

https://vimeo.com/183583526

 

And we try not to worry…

Written on Wednesday, September 21st @ 9:40am

Good morning. I woke up very early today, actually I am not even sure if I slept 3 hours. It’s been off and on like that for the last few weeks. I am very restless but I bet we all get like that from time to time. At least when I look at it that way I don’t feel alone. Yes, it has been a ride of worry the last couple of weeks.

Tomorrow we will be heading to Mayo bright and early. Oh the stress, the worry and the what ifs…it can drive you crazy.

How has Crystal been? She looks beautiful, she is very happy, she is loving her new adventure as a Mrs…

Now, how has she been feeling? Well, tired, has a nauseous feeling, sits down a lot, her joints ache, she tries not to worry, and then worries because she is worrying too much. Stress can make your body do crazy things. Has there been tears? Yes.

On another note, she loves that she can finally taste food again. She loves thinking of her summer, her wedding memories and she loves her sisters. She loves her husband, his family and planning for their future. What more could a mom ask for.

It’s been 5 months of no doctor visits, no blood work, no scans, no chemo, no surgeries, no pokes… Oh what we take for granted.

Someone asked me if she has gotten to go that long before? Well, before this crazy journey began, her last night out feeling great, before cancer was December 31st, 2012. She was with Libby, Paulette, Rod & I. In January of 2013 she began not feeling 100%. By February the blood work began. In the last 4 years, I do believe that one other time we went this long with good news.

This time it seems hard for me to emotionally prepare for this appointment. I mean if they see more tumors, can we beat it? Does she start chemo again? Will there be a surgery? How do you plan for the future when you are not sure what the next appointment brings? I guess the same questions I always have at every appointment.

But then you find yourself thinking if the appointment is good how happy you would be, then you immediately think what will her appointment be like before the holidays? I mean what if it’s back then? What will the holidays be like? Will she be sad? Will her sisters be okay? How can we plan that family vacation? She could be sick or on chemo which makes it hard to focus on the future.

Then I realize, that is her life, our life and we can’t quit planning even though sometimes I want to lay in bed and pout. And lately that has been more than normal. We don’t know our journey, keep planning, keep living, I keep telling myself.

Her husband will be her right hand person. When the doctors come to tell us news, her husband will be the one to hear first. It is a new journey for all of us, I am blessed that we are a close family, I am blessed that God gave me the knowledge to know it’s okay to let go. But you moms out there, this is a new feeling for me. It is scary and I am so glad I respect Gage as the person that he is. It sure does help during this time.

I walked with Crystal yesterday, I told her that if the cancer is back we fight. As Crystal says to me, “If it is back and I have to start chemo I will start on October 8th. That way I will feel good and can wear heels to a couple of weddings that Gage and I are invited to”. I realized then that she has mentally prepared and planned her next step to what she can control. Deep down inside I was proud but yet my heart hurt hearing her plan.

I just want everything normal. I want to hear good news because the selfish side of me wants my life back too. I’ve lost myself lately. Kind of embarrassing but it’s almost like I care and I don’t. I need to take care of myself. Moms we need to take care of ourselves.

I find myself, not talking to God as much these last few weeks. It is like I will say a prayer for someone, say a quick Thank You and move on. It is almost like I am ignoring talking to him so I don’t even have to acknowledge that there is cancer in our family. Crazy right? I wouldn’t give that advice to my daughters and here I am doing it.

I guess the blessing in all of this is… I am lucky because I am reminded daily to live life. God gave me three beautiful gifts, Crystal, Courtney and Cassidy. I learn more from them then they will ever know.

Thank you God for my strength and the gifts of my daughters that remind me daily how to love healthy.

On another note, on Facebook the CR Spirits went live. It was actually a little nerve racking but fun. Crystal would like to go live at Mayo…Not sure what her game plan is but she thought it would be neat to show you all where she is…If you have Facebook then make sure you look for the video.

We will not have results to her tests until Friday afternoon. Again, Thank You in advance for your positive words, prayers and thoughts.

Is it to good to be true…

Written on Thursday, August 18th @ 12:00pm

It has been a month for the Mr. & Mrs., can you believe it? As they get settled, write their Thank You’s life seems perfect.

This week has been a great week for Crystal. We just got done performing at the Iowa State Fair, the Spirits are getting ready for the their next Season and her attitude is in a good place compared to last week. Last week was a different story.

Last Monday, Crystal had opened up to me about how worried she was that the cancer was back. How scared she was about the next set of scans. She explained that she told Gage how she was feeling and that he was trying to motivate her.

It was sad to hear her say all of that but I also could relate. I myself was worrying about everything being good this summer, the wedding going smooth and dreaming of a bright new journey for all of us, that I questioned what was going to go wrong. It really can keep you up at night.

Then a family we knew had lost a loved one. It was important that we went to the wake, for this family has sent many cards to Crystal and I wanted this family to know that it was our turn to send the prayers.

After giving some hugs to the family, we headed quietly to our car, what I didn’t expect was the Crystal breaking down. She said, “Mom, I don’t want to die, I don’t want to die. I want to live. I am scared to die. I am happy right now. What if this Cancer is back? I am not suppose to be here.”

I was shocked, it made me tear up hearing her talk like that. That is one thing we have never really said out loud…I don’t want to die. But I gained that quiet strength and held her hand. Oh Crystal, I don’t want you to die either. But honey, you of all people know that we don’t know our journey. Look where we just were, he was healthy…it is a reminder to live life. It is a reminder to inspire others. It is a reminder to be kind. It is a reminder that we all have a story.

The wedding is done and prior to that when your mind would begin to wonder about your cancer you would get to think about the wedding, now you have to train your mind to think about the present. I am scared too but watching you at this moment I am not going to give cancer the satisfaction this next month.

Crystal this might be a good time to write an update. They would love to hear from you and I promise you will feel better.

So here is a little update from your hero. But keep in mind, she wrote it last week but didn’t want me to post it until she reread it after the worry and anger were gone. Yes, she did change a little of it because she said, “I don’t want people to see me like that”. What is funny, I am the same way….

I have been Mrs. Barnett for a little over a month now! 🙂 And what a wonderful wedding Gage and I had. It was literally one of the best days of my life. Everything turned out perfect and I got to marry my best friend. A lot of you ask me what is our relationship like?? Well we do everything together…. like I said he is my best friend. He understands me and we get along. Of course we have our fights…we are not perfect! Just a couple of months ago we bought a new home, so lately we have been decorating that and making it our ideal picture perfect home we have always dreamed of. We do have a cat that is a little over a year named Storm….she is my life!

Another questions I get asked is what is Gage like? Well… Gage is very good at getting me through those rough days. He is the sweetest, most kind person I have ever met. He has goals in life…which is very important ladies!!!! And he is adorable and thoughtful 🙂 If I had to pick one word that would best describe him it would be the simple word…kind! He is a great listener and always has the best advice ever. I can’t think of any other guy that would be as patient with this crazy journey we are living. Our life is completely different then any others. Now that we are married we have those talks about the future like…what if it is back….then what. Or financially getting ready to take over the medical bills that right now my parents take care of. And all of this can cause stress which can make you very tired and emotional. Thank God we have each other!

When you have cancer you go through crazy up and down emotions. Some days are amazing and you don’t even think about the cancer and other days you just can’t seem to get it out of your head. It is hard to get out of bed and put a smile on your face.…

Death is always a touchy subject with me. Since I do have cancer I do think about death….how could I not. In my situation it is normal. I am a very positive person and just because I think about death doesn’t make me less positive or less strong…it’s life and it’s good to be open about it. So please don’t be that annoying person that says don’t think like that. Gage and I have had that talk… obviously it is a hard talk but it’s always good for a cancer patient to get things off their chest.

My next scans are in September! Pray for the best!
Thanks for reading!

-Crystal Marie

By the way her next scans are September 22nd & 23rd.

Honeymoon time…

Written on Thursday, July 21st @ 2:00pm

It is extremely hot outside. As I stare out the window, looking at the beautiful flowers on Crystal and Gage’s deck, I am feeling thankful for air conditioning. I am watching “Storm” their beautiful cat and I can tell she wants her mom to come home.

“Storm” just stares at me, then cuddles with me, then is angry with me, then meows, then repeats…

Just think, a week ago we were getting ready for a big wedding weekend. We really were just starting to finally enjoy the thought of the big day, because we were so worried about not having a church for them to get married in, since the crazy ceiling had collapsed in the one they were suppose to get married in. But it all worked out, thank goodness.

Rehearsal dinner went by fast. I couldn’t believe it was actually happening. It made my heart flutter. We were thankful to have a church and I thought Crystal handled herself beautifully as things were going to run very different than the way she thought they were going to go because of the differences of the church.

For an example, like how many entrances there were to the church, the isle being off centered as she were to come down. The fact that the church was smaller was concerning how everyone was going to fit. And where were the old cars going to be after the ceremony?

Crystal’s biggest thing that she wanted, was no one was to see her or the bridal party until the wedding march down the isle. That was one thing that was very hard to control because the room in this church to get ready in was right upstairs by everyone who was attending. However, we did out best. I just don’t think Crystal or I thought any one would be there an hour before the ceremony. Crazy.

It was a gorgeous day. The weather could have not been any more perfect. And the bridesmaids began their day very early. Everyone was smiling, everyone looked happy, everyone looked beautiful and Pastor Jonathan gave a sermon that was very heart felt. You could feel the love, you could feel the energy in that church.

As a mother, watching her walk down the isle with her dad made my heart skip a beat. Rod smiled so big, he was so proud, he was so happy. They both were beaming. Watching her sisters, her bridesmaids be so full of joy that there were tears in their eyes. Watching Gage smile at her. Seeing my mom, cry happy tears. Made me realize even more how lucky we are to enjoy this new journey together.

The reception was a blast. Everything stayed on schedule. The music throughout the night was uplifting then turned into some crazy fun. It was all decorated like Beauty and the Beast, Crystal’s favorite disney movie as a child. But instead of yellow roses they were pink.

The food was incredible. The cake, I wish I had some right now. And our bartender, had a smile the whole time.

So, Crystal Kuehl is now Crystal Barnett. And we have gained a son who has a wonderful family that comes with him.

Thank You all for the prayers, the support, the kind words, the messages, over the last few years. It truly is because of all of you that helps this mother get through it. And because of all of you my daughter is confident she will beat it. Thank you.

Her next scans will be in September. She has one more month to live free, well the best she can because we all know in the back of your mind you wonder.

 

We are reminded that we are not in control.

Written on Friday, July 15th @ 8:30am

Today is the start of the big wedding weekend. How exciting for everyone. Such a happy time. A new beginning. I am so excited to see my daughters dressed up with smiles on their faces. My heart is full of joy that my daughters get this moment together. Everyone there will be looking their best. They will all have a happy heart. It will be a weekend full of beautiful memories.

I am sitting in my kitchen this morning, it smells of popcorn from CornFusion. So many bags for the big wedding this weekend. It is really hard not to open a bag and eat some. Lately all I do is eat. But tomorrow will be here before I know it and I will have some then, with family and friends.

The weather looks like it is going to be perfect. You know, I found myself praying to God in the weeks coming to this big weekend. Please make the weather perfect. Please make this day extra special, the weather would help with this. However, the minute I would start to ask God for that wish I immediately felt guilty because I already had begged him to let Crystal not big sick on her day. And he granted that. So asking God for another favor made me feel like that wasn’t good enough. I was asking for something else. Something else for me. Such a selfish feeling that was…so that was it, I haven’t asked for anything except to Thank him for this day, and to guide me through this time. Crazy thing is, I have been really calm through some crazy circumstances. Which brings me to this…

I have been torn to write an update in Crystal’s Journey about this day but when my mother received a message about the wedding I thought, maybe I should do a little update.

Anyone who has been involved with a wedding knows the craziest week before the big day. The nerves, the thoughts, the phone calls, the worry. We all know that when the day arrives, you just let it go. What happens, happens BUT we also know you don’t get that attitude until you get everything organized up to that date.

On Tuesday, Crystal had some errands to run and one of them was to drop off the marriage license at the church. It seemed to be taking Crystal a lot longer than I thought it would so I began to go another direction with some of the “wedding to do list” things to check off when suddenly I receive a phone call from a hysterical Crystal.

“Mom, I have to tell you something.” As she is crying and trying to talk. “It is not good. It is bad.” As my heart dropped I took a deep breath and started thinking what could it be? My mind was racing. As she was catching her breath she explains, “As I walked into the church, I saw people crying. And then they told me that in the Sanctuary ceiling had collapsed. “Mom, I can’t get married there! What are we going to do?”

I was shocked, she went into more detail of what had just happen approximately 30 minutes before she had arrived at the church. All of sudden, as Crystal was talking this calm feeling came over me. It was the strangest thing, I calmly said, “Crystal, thank goodness it didn’t happen the day of your ceremony. Could you imagine saying your vows and that happening? Your beautiful day would be ruined with a memory of people getting hurt and someone possibly being killed. That would be horrible. We will figure something out. We have a few days to get things organized.”

I could hear in her voice she was so surprised how calm I was. It calmed her down. She said she had been praying for the last couple of hours with everyone at the church. Plus they were all trying to look for a back up plan. The church was absolutely wonderful and gracious with Crystal. And when I asked Crystal what did Gage say? She said, “Mom, he said I am going to marry you and I don’t care where.” Which actually made her cry harder. True love is so beautiful.

As we hung up the phone, I can’t lie to you my heart was racing. How in the world are we going to tell everyone in this short notice…Hmmm we do have the emails from the RSVP’s. On another note, we have a 48 hour waiting period for the possibility of using the church right across the street. If that is the case, we really won’t need to say anything because people will be outside guiding everyone. So the wait begins…

The meeting was Thursday night at 5:30pm when we would be learning if Crystal & Gage would get use that church. We did have a second plan but boy that was going to be work. So we crossed our fingers.

Crystal and I were at dance working away, she said “Mom I just keep praying. You know I know this is not cancer, but when I sit in the doctors office and wait for the doctor to come in to tell me if the cancer is back or if it is worse or can they do anything about it. I feel that exact same way right now, as I am sitting here waiting for my phone to ring to find out if I get this church.” I actually felt the same way but this is over a church and I would take that over this cancer any day. But around 6:15pm, we get the call. We Got It! There was her smile that I haven’t seen the last couple of days. I was elated. I was thankful.

Now we talk, we have decided not to say anything. It might be confusing. So we know that when guests arrive there will be church members directing everyone across the street. It will be perfect. Besides they share parking lots.

Until my mother received a message last night from a dear friend of hers that is a guest at the wedding. She had heard from someone that is not invited to the wedding, that the church ceiling collapsed and everything at the church is canceled, including the wedding. So she was just asking my mom if she heard that? Well everything at the church is canceled but the wedding is still going on. That is how rumors get started. So that is why we felt I should write and update. Such a crazy journey life is.

Now, I know a lot of you might be thinking she could of used our church. Trust me she did look around. But with Mass and other weddings going on it was a lot harder to do. Plus keep in mind, Crystal wanted to get married in Cedar Rapids. She wanted everything in downtown Cedar Rapids. She wanted it easy for everyone to get around but seriously with all of the road construction there is no easy getting around downtown and that is out of our control.

On another note we have learned Crystal will be going to Mayo sometime in September. I am reminding myself to live in the moment and worry about September on Monday 🙂 Enjoy this beautiful weekend, I know I will.

Weddings, they are new beginnings. New beginnings for everyone. 8 days away…

Written Thursday, July 8th @ 9:40am

Hope your 4th of July holiday was a good one.

What a beautiful morning in Iowa. However, to wake up to hear about the sad news in Dallas is heartbreaking. My middle daughter Courtney can’t even look at the news, it makes her sick, it makes me sick. As we drink our coffee, I can hear her voice quiver as she talks about her feelings on this sad event. I can feel her worry about our world today. So many questions she has and I can’t answer them.

I think to myself, I have a daughter fighting to grow old with her soon to be husband, fighting for her life daily & here people are just throwing lives away.

Over the years the saying I have told my daughters still stands true today and is so simple. “Treat others the way you would like to be treated”.

On a refreshing note, Crystal’s Sky Zone Fundraiser was wonderful. It was nice to see all of the support and the CR Spirits Dance Studio did a great job performing and smiling away. Thank you. Thank you from Crystal. Thank you from our family.

Also, Sky Zone was so fun and it was so clean that we will be having a Spirit Party there in October. Such a great workout 🙂

Then a surprise came our way. A girl on the Professional Dance Team bought her first new home. Congrats Jes! She used a realtor who also happens to be on the team, Alissa! Alissa with U Realty. U Realty has the neatest concept. Every time they sell a home they donate 10% of their commission to your charity of choice. I bet it is a rewarding feeling for everyone involved. I sure know how we felt to get the Commission of Hope check. Thank You. Thank You.

Gotta love #closingday. We are so excited for you Jes for your new home. As a thank you for your business we donated 10% of our commission earned to the Crystal Marie Kuehl medical bill fund through our giving program Commission Of Hope. Enjoy the new house!!! Alissa

With the amount raised from these two events, I can say we have 5 nights in a hotel in Rochester paid for! YaY!

As for Crystal’s Bachelorette Party, what a fun night in Cedar Rapids. It was perfect. Kaitlin took the reins for this event, Paulette was right by her side and the night could not have been more exciting. Every location was decorated and every one looked beautiful. Pretty much it was Family, about 20 High School Girls and about 20 CR Spirit Dancer Girls. A night to remember. Kirby, Thank You for making us feel like RockStars.

The day is almost here, I sure have learned a lot about planning a wedding. I have learned that RSVP is really important. I have learned that you do forget some when you are inviting but you have to draw the line somewhere. I have learned that you can’t forget the cake plates and forks. And I have learned to keep the concept I preach, trust your gut.

I know I have helped plan this wedding with Crystal and I could have never done it without my own mother. And honestly, I am not sure if it would of went this smooth if Crystal was still on Chemo. We are so blessed that she got to take this break. We are so blessed that they did a procedure in late April to remove the tumors. Oh please stay away cancer.

You ask how Crystal is doing. Crystal is doing well. She is really happy. She has butterflies. She is excited. She is really busy and she is tired of making decisions about the wedding, which is typical for any bride this close to the date.

You have asked where they are going on their honeymoon. They are going to the Florida Keys. They even booked 4 exciting things they will be doing while they are there. Hawaii was the first choice but we all know how expensive that place is, so that will be a future vacation for them. She also was told that it was best for her to vacation in the States with her medical history at this time.

Crystal and I went for a long walk last night. We talked about how food taste so good to her. She just recently began tasting it again so she said I am really enjoying that right now. We talked about if she worries about her August scans. She said, I am so busy I don’t have time to think about it.

So as I asked her, when the wedding is done, the honeymoon is over, the doctor visit has passed, what is your focus? Getting those Thank You’s done? She laughed and said Yes. But mom, it is the Spirits. It is the Spirits Dance Studio. I want more kids. I want them to perform at the Spirit Show. I want them to have that feeling on stage. That feeling is what helps me forget my worries with this cancer. I can’t wait for auditions on the Professional Team. I wonder if we will get some new faces.

Which then got us talking, we have said nothing about auditions for the team this year. And for the first time in 23 years the auditions are going to be held in July NOT September. Wednesday, July 27th @ 6pm! Yikes…to much wedding stuff that we are forgetting something else that we love.

When I started this team, it was for me to get out of the house. It was something that took me away for a couple of hours a week. It was something that came natural to me. I just never dreamed that it would make an impact on so many others especially my daughter. God knows what he is doing. He gave me a gift and I use it for the good.

What is your gift? Everyone has one. Everyone is good at something. Everyone. And what is funny, when you ask yourself? What is my gift? What am I good at? It is actually to hard for some to answer. For some to say it out loud. Well, embrace it. I bet you will be happier for it.

We are blessed…

Written Thursday, June 23rd @ 10:30pm

What a gorgeous night in Iowa. As I am getting ready to call it an evening, I thought I would do a little update.

I am always posting on Facebook. So yes, if we are Facebook friends you see little updates on her. But when I get a message through her caring bridge, asking how did Crystal’s wedding shower go? I immediately remember not everybody has Facebook, I need to do an update and tell you how beautiful Crystal’s Wedding Shower was.

Early Sunday morning before the wedding shower it was Crystal’s “practice” make-up and hair style for her wedding day. She also had them practice on me, like a bridesmaid. It was a perfect time to do the “practice” because she would have a event that she would be looking beautiful for. Now keep in mind, the pictures you do see from the shower will not be the style on her wedding day…We have to keep you guessing. And by the way, I did cry watching her get all made up.

It was a sunny Sunday at the Coe College Alumni House. The food was delicious, the decorations were perfect. I need to do a shout out to Emily and Shirley. They helped Courtney and Cassidy with those beautiful decorations. And we cannot forget Katelynn for those stunning invitations. Everything went so smooth.

Courtney and Cassidy were very nervous but held it together perfectly. I did map out an itinerary for their day but honestly it was their choice to follow or not. I smiled as I watched them organize the party. I was proud. I was happy that the three of them had this day together. I felt blessed to be surrounded with such good friends willing to help.

And Crystal’s words, “It was the best day ever mom. I was so nervous. I could do a Spirit Show in front of a million people before I could do a shower.” I was very surprised by that remark because everyone in the room was family and friends.

I will tell you that day after her shower, I think I said it a million times to myself. Whether I was in the car alone or visiting with others. Thank you God. Thank you for giving her this day. Thank you for bringing all of her family and friends together. Thank you. I have watched my daughter battle this terrible disease for three years. I have watched what it has done to her, to her family, to her friends. I have cried many tears, have had sleepless nights, and seem to worry about everyone’s future to the point that I have a headache but there is good in this, I know for a fact, I appreciate this day, this moment more than if this Cancer never came into our lives.

Today, Crystal has been working on all of her shower thank you’s and has half of them done. YaY, because this weekend she will be getting ready for another party…Her Bachelorette Party!

On another note, in March Sky Zone in Cedar Rapids had reached out to us. They wanted to do a night for Crystal. The money raised would go to her medical expenses. At that time we had a lot going on, with Spring Break, then followed by her Mayo appointments, suppose to be following up with chemo but then jumped to a surgery, and then we had a Spirits trip.

As I finally got back to Sky Zone to thank them for the opportunity and to let them know that we appreciate the kind offer but the timing was really not working out. I explained that this last procedure they got the tumors. They were hoping that getting those tumors would give her a couple of years. With that being said, we are trying to plan her wedding. And if the tumors are gone right now. I feel funny having a fundraiser.

As Sky Zone said to me, don’t you have hotel expenses, gas, food besides the medical. Well, yes she does…every 2 to 3 months for the rest of her life. Sky Zone says let’s give her a night. So, I made a call to my niece Heather. Heather has ran every fundraiser for Crystal. Matter of fact, Heather and her husband Kevin, are the host and hostess at Crystal’s wedding.

So everyone, if you would love to come to Crystal’s Fundraiser at Sky Zone it is this coming Tuesday, June 28th 3:30pm-8pm!

The CR Spirits Dance Studio will be performing from 5:45pm-615pm. When you arrive you just have to say you are jumping for Crystal. A little exercise along with giggles = a fun night.

Jump at Sky Zone in Cedar Rapids on Tuesday June 28th between 3:30 pm- 8 pm and 30% of your Jump pass will be donated to help Crystal Kuehl who has beaten Stage 4 Pancreatic Cancer 3 times! The battle continues and so do the medical bills. On Tuesday, Just tell the cashier that you are there to support Crystal. Bring your SkySocks or $2 to purchase new ones to keep and use again. All jumpers must sign an online waiver and can be done in advance at http://www.skyzone.com/cedarrapids/Online-Waiver/WaiverType/NoPaper There will also be a donation box for those just wishing to donate.

We hope to see you there…Crystal and I will be sitting at the table.

Wedding Shower Time…

Written Saturday, June 11th @ 3:30pm

I love how you all keep me on my toes. I have not forgotten any of you, it is just really busy with wedding plans.

I thought this post I would write a little different and answer the questions I have received through your messages from the last few weeks. Maybe you will see your question and then it should make you smile because you will see I do read your messages.

So here I go with answers to your questions…

What has Crystal been up to?
Since we last talked, Crystal had a wonderful time in Vegas with the CR Spirits. Thank you to the beautiful woman at Louis Vuitton, I know you are reading this. We felt like movie stars. It was breath taking to watch the Bellagio Water Show from the Louis Vuitton patio. The photos you took of the team were perfect for our memory book. The desserts were so delicious but almost to pretty to eat. We will never forget that night. The tears, the kind words we shared as a team we embraced. Thank You.
We went from feeling like a movie star to being a rock star. Thank you my dear friend from Mon Ami Gabi…dinner was unbelievable. You sure know how to make us feel important. See you in March at the Spirit Show! Yes, you are coming to Iowa!
Crystal also has been up to decorating her new home with Gage and of course the big one, planning her wedding.

How is Crystal doing?
Crystal is doing great. Her summer is busy and exciting. No time for Cancer. Crystal said to me, “Mom, I haven’t had a summer without something wrong with my health since 2012”. So I guess we can say there is no complaining here.
Now Crystal did have a week of being under the weather which of course alarmed her mother but Crystal felt it was just a bug.
We did take a long walk, like usual which was difficult for Crystal that week. As she said, “Mom, my body is not the same. It is so hard.” As she sat down to catch her breath. I could see it was very difficult for her to breathe, walk and stay positive. I smiled and told her, “It is a different body, you are missing somethings in there”. Crystal immediately says, “Mom my brain is not the same either. I don’t know what I would do without you helping plan my big day. I can’t stay focused, everything seems blurry. I don’t like it.” I must admit it broke my heart. As I was trying to figure out what to say and if I should find someone to pick us up. Crystal stood up and said let’s walk back. We hugged each other and I can say, we did it. We made it back home.
Crystal is pretty good at faking it but I give her the space she needs and just quietly pray to myself.

Has Crystal been back to the doctors?
Well, I think you should know me by now. If there was a doctors appointment, I would have been asking for prayers. It is like my ritual and I don’t think I could ever change it even if I wanted to. I think my heart would be heavy that I wouldn’t be getting the prayers that we would need and that could change everything for her, for us. So I am thankful for the opportunity to update her posts & Facebook for awareness but I will admit, sometimes it is exhausting thinking that way.

When does Crystal go back to the doctors?
They wanted to see her in June, however Crystal has decided to wait until August. Whatever news she would get, it would not change her wedding plans. If it was good news great but if it was bad news, there was nothing she was going to do until after the wedding. August will be the month for strength, positive vibes and prayers. But not forgetting to have a thankful heart for the beautiful summer we will have had with family and friends.

I am so happy for Crystal and Gage, we were hoping for a invite. Who did she all invite to their wedding, just curious? Is Crystal and Gage having a big wedding?
Oh how hard that guest list is for any wedding. You even get done and think goodness, we didn’t invite them or should we have invited them? It is crazy. You don’t want to leave anyone out. I am not offended by your remark, I was a little shocked though 🙂
Well, I guess I can say yes. As many of you know planning a wedding is fun and exciting but yet the guest list can be difficult. Rod and I have been married 26 years. We went to a small town high school and still have remained friends with many there. We both own our own businesses so we have made some wonderful friendships there. Besides the friends you make over the years, raising three daughters and becoming friends with their peers, we still have many family members. Then to top it off, you have a child fighting a terrible disease. You become very close to some of those prayer warriors but you know you can’t invite them all.
So that is where you say to the bride. Large wedding? Or a small intimate wedding? Do you want to invite only the people that you both personally know? And she says, “Mom, I want to feel like a princess. I want everyone to see I am happy. That I am normal. I am not sick. That I am thankful that they have prayed for me. And that I am getting married and they didn’t think I would be here at 23. Really mom, it’s whatever dad and you think. But I would love for a big party”. As Rod and I talk, it is their wedding day and we are so blessed she gets this day…Let the party begin! And we got a son!!

How is mom doing?
Mom, is doing good. I have only had a few little moments of tears, nerves, sleepless nights but there is so much to be thankful for. No complaining. And those moments that I have broken down, I happen to have been with some very close friends.

How is Rod and Crystal’s sisters, you have not wrote about them lately?
Rod is working harder than ever. Remember a year ago he had a pic line in with staph infection. Today, his ankle still aches at times, it does swell during the day because he is on his feet all day but he never complains. Rod is not on Facebook and is not really into social media. Crystal has asked him to speak at the wedding and he has said, your mom can do that. But I do tell him when people are asking about him and if he would like me to say anything…I think he hears me 🙂
As for Courtney, she is still at home and will be finishing up her dental program this December. She did get to travel with the team in May to Vegas and never dreamed she would of had as much fun as she did. As Courtney said to me, “Mom, I had a great time in Vegas. I guess I thought you weren’t exaggerating when you went. Thank you mom, for telling me I needed to go”.
As for Cassidy, she is loving her new job. Love Loves her new job. She has a cute little apartment. Cassidy works very hard and loves to help others. Life is good.

Do you and Rod ever fight? You write and not that I wish I had a daughter with Cancer but your family is so inspiring, I wish I had that.
Thank you. However, that is the most funniest question ever. We all have fights. We all are not perfect, not even that hero of ours. But we look for good. We don’t give up. We live full of hope. As a family, it takes work. Nothing is handed to you. And somedays I could scream but over all the troubles I have had in my life, they have made me who I am today. It has taking me 46 years to say that.
I love hearing from you all. Your prayers, your positive remarks, your stories, your thoughts. It is nice to not feel alone. But goodness I choose not to share negative stories. Negative thoughts breed negative people. The only people that would want to hear a story like that are usually the ones that love misery. I try to stay away from it. But if I ever write a book I am sure I will share a story or two.

Well, those were all of the questions I believe I received from the last month. I hope you got your answers and I hope you are enjoying your weekend. Tomorrow is a big day, it is Crystal’s Wedding Shower. Her first big wedding event. All of her family and friends coming together to embrace Gage and Crystal’s new journey. It is a happy time.

~Every love story is beautiful. But ours is my favorite.

Crystal is 24!

Written Thursday, May 12th @ 11:00am

The sun is out this morning and it is crazy how the sun can make you happy. Happy Thursday! Wedding planning is going good. Shower invites are in the mail…Check!

Crystal is doing great after surgery. Yes, her antibiotics made her not feel the greatest, she was very tired and extremely sore. There was a lot of bruising but hey they got the cancer. It was such a blessing to have an option. It was such a blessing to get both tumors. Crystal did take her 10 days to get back on her feet before she went back to her daily routine.

And yesterday, May 11th was Crystal’s Birthday. She just wanted a few family members to come watch her at dance practice. Crystal was so excited to see the team. She was anxious to get back into the dance room. Seeing her be that happy with the Professional Team makes me even more confident that we should all continue with our passion whatever that may be. I always joke that it keeps you young at heart to still be dancing at my age but really it keeps your happiness in check.

Of course being a Facebook Fan, it is always fun to me to look back to “On this Day”, which is a page for some of you that don’t know, that shows you what you have posted in the past years. Sometimes it makes me cry looking back but more often than that I find myself surprised that I have lived through some of it. It actually makes me appreciate what I have done, where I have been and who has touched my life. Whoever thought that little page could do so much.

In this case, a year ago, on her birthday we learned that the Cancer was back. And at that time we were told they were not sure what they could do for her besides starting chemo. It is amazing what a year can bring. It is amazing what prayers can do.

So last night we danced in the room with some family watching. Crystal giggled, the team giggled, we danced our hearts out, we talked, we ate pizza, we enjoyed the moment.

And as we prepared for our Spirit Vegas trip, Crystal began to cry. She talked about her day, how Gage made her a big birthday breakfast, they drank coffee together and as he left for work…she said she found herself getting sad. She thought to herself am I doing all I am suppose to be doing at age 24? Am I living life to the fullest? Am I not doing what I thought I would be doing? And as I said, honey you have beat cancer that is a pretty big thing to do not once but three times. And Crystal they said they were not sure you would be here at age 23…you are 24. She said I know mom, and the tears were harder. The team was quiet.

But like I said to Crystal, see honey this is just another sign that no one knows their time. Only God has that plan figured out. And to myself…I was thinking honey I am 46 and you don’t think I ask that to myself daily.

However, I couldn’t imagine having that in the back of my mind for the last 3 years and I am sure that thought is going nowhere no matter how positive you are. Which brings me to my thoughts. What if we all lived like that. The thought that we may not be here in the next year. If we thought we knew when our time would be. Would we live more in the moment? Would we be nicer people? Would we judge more or become bitter? Would we be happier? Or would sadness take over? Actually, you might find God. You might find your spirit. You might find yourself not having time for drama. You might find yourself and like yourself more.

Today it is a little chilly in Iowa but the sun is out and the Spirits leave for Vegas. Yes, living life with a surgery 16 days ago. Always looking forward.

On another note. I hope all of the beautiful mommies had a wonderful Mother’s Day. Wether you are expecting, a new mommy, a single mom, a step mom or a man that has fallen into that position, I hope you enjoyed your day. Because being a good mom you know you have made lots of sacrifices.

Live for today…

Crystal won this battle!

Written Wednesday, April 27th @ 6:40pm

It was a cold, rainy and windy drive home but thinking of the last few days at Mayo, the good news we received, made for a fast drive back.

Crystal, my mom and I left Monday morning for her test that needed to be done before her procedure. The appointment lasted a couple of hours. During the consultation the doctors stated they felt one of the tumors they could get to however, the other tumor was going to be difficult.

The doctor did say it would be nice to get them both and that would hopefully give her a couple of years of no detection.

All three of us had a good feeling. My mom and I were positive they were going to try their hardest and even if they couldn’t get it, they were going to give it their all. Crystal…Crystal knew they were going to get it. Crystal said, “I am not worried, they are going to get both of them”. She was very confident and even if she was questioning if they could get them, she never said it out loud.

With that being said off to the Mall of America for dinner and to go on the “Flight” ride. Such a breathtaking ride. As I said to my mom, it is a ride that takes you away. It is like you are on the outside of a plane feeling all of the beautiful things God has created. It is better than looking at photo of a mountain, it is like you can feel it. There are so many beautiful things in this world. Things we don’t even think about because we take it for granted especially if we don’t travel much. And what I can tell you is my mom absolutely loved it. I think I saw a tear.

It was an early night and Crystal lit up when Gage arrived that evening. Rod, Crystal’s father, could not make the trip this time. Getting ready for the wedding, Rod has taking on a lot of side jobs. Thank goodness for iPhones. Rod, Courtney and Cassidy were just a phone call away, it was nice to know they had each other back at home.

We arrived at St. Mary’s Hospital at 5:30am on Tuesday. Crystal was is good spirits. Gage is personable, polite and seemed to make us laugh a lot. You didn’t even have time to think about what was going on because Gage would say something funny. He is very witty. They took Crystal back around 8:20am.

On the main floor of the hospital there was construction going on all around us. So things were a little different this time. We were in a small waiting room. Gage was on his computer, he had work to do. I played on my phone for a bit, chatted with my mom and people watched.

When you sit in a waiting room for hours you can’t help but feel for others that are in the waiting room with you. Here is just one observation:

My mom and I watched a mother with her daughter that was 2 maybe 3 years old. They were in the waiting room before we even arrived. And I know they were there for at least 3 hours with us. It was just the two of them. She was Islamic, we thought maybe from Africa. They brought in a interpreter to help her understand that her daughter needed an MRI. You could tell everything was new to them. My mom and I helped her as her daughter was not feeling the best. Her daughter was so fragile, they both were so quiet.
As it was finally time for the MRI, the mother got up and smiled at us. You could tell it meant a lot that we tried to help her. But what broke our hearts was when her mother returned to the waiting room without her daughter. We knew how the MRI worked, we knew she wouldn’t be able to go back with her. You could feel her pain, her sadness. You could tell she wanted to cry out loud. My mom and I looked right at her and said it is going to be okay, and even though she could not speak much english she said, I guess it is the right thing to do. It broke my heart. At that moment I felt blessed. I was blessed to have Gage and my mom with me. It is such a lonely frightening feeling and this woman was alone. I wonder where she is today?

I was starting to get a little restless after about three hours in that room. After asking how things were going to the lady at the desk, the nurse came out of the surgery room to state that Crystal was doing well. They got one of the tumors and now they were going to begin the next one.

I was happy with that news but we still had to continue to wait and pray.

I would close my eyes and talk with God. I would Thank him. Thank him for the options that Crystal received this time around. I thanked him for No Chemo. The good that has come out of this journey. I told him how many of you think I have such wonderful faith and yet I feel guilty because I don’t even know if I do, I am just trying to figure things out. I thanked him for filling me with HOPE. That is one thing God gave me a lot of.

I know it sounds funny but I would try to picture God in my head and Crystal. I would try to see if I could feel anything and then that would spook me out so I would immediately say Thank You and open up my eyes.

Anyway, we sat in this small waiting room for 5 1/2 hours. My mom on my left and Gage on my right. It was busy in the waiting room when the doctor came out to give us the news. He is a very tall doctor, blonde hair and I couldn’t stop staring into his eyes. He said he got both of them. I could tell he was proud to say it. He worked so hard. I couldn’t believe I was hearing him say it. I couldn’t help the emotions. I cried. I tried to stop crying so I could listen but then I cried again. I remember looking at Gage trying to be strong but I was so happy I was crying.

We did go to a late lunch and then we finally got to see her. Out of all of her surgeries, this one she looked the best. She is always smiling but this time she had color. And I said to Crystal as I touched her forehead, “Honey they got both tumors” she said, “They did? I knew they would”.

Gage stayed by her side all night. And I must say the four of us slept very good. Sound asleep. It is crazy how tired you are when you didn’t even know you were. Stress can do that to you. So can tears.

What is our next step? At this time, we know there will be a follow up doctors appointment but not sure when. Will she do Chemo? Well, not for the summer 🙂

As for Crystal, since 2013 we can now say, she has beat cancer ~ 3 Times!!! This last battle just took a little longer to win.

Change of Plans…

Written Wednesday, April 20th @ 6:00pm

As I am sitting in my office at work it is quiet and dark. I have not turned the studio lights on yet, I am just staring at my computer and trying to prep for dance tonight but my thoughts keep reflecting on my day.

Today was suppose to be a fun day. Crystal and I were off to Read Photography, not to talk about the Spirits Photo Shoot but Crystal’s Wedding Day. What a fun day it will be. Getting things organized for her special day puts a smile on your face. But then she received a phone call from her doctors at Mayo.

Everything was good. Everything was exactly how it should be. Chemo for two months, break for two months, possible surgery in August. But then, the surgeon spoke and thought…hmmmm I think I can get those tumors.

Crystal’s team of doctors feel they have a good chance to get them with the Liver Ablation. Remember she did that two years ago. With that being said, ironically they have an opening next week. Is that a sign?

Here it is, my daughter calls me to tell me what the doctors have said. Her voice sounded excited, yet concerned because she had a plan and it was changing. She has her own thoughts but yet she is not sure.

Gage was her first call, he is supportive, encouraging and yet Gage reminds her that it is her choice. She then calls me. What to do? Ultimately it is her decision. But I can tell she really wants someone to make the choice for her. But again I remind her, it is her decision.

As we talk out her thoughts. We listen to our gut feeling.

Monday at dance, Crystal was explaining to Kaitlin how the Chemo is really taking a toll on her. She explained to Kaitlin that somedays she worries that she will get another form of Cancer because of the Chemo killing all of the good cells. As Kaitlin was surprised to hear Crystals concern, I must admit so was I, we don’t talk like that. So today I said to Crystal, do you feel you need a longer break from Chemo? As she answered Yes…then I said there is your answer. With this procedure there would be a longer break from Chemo.

We talked about the complications that could happen, however there can be complications with the next two rounds of Chemo. The fact that they feel they can remove these tumors or get to them is a blessing, so we go for it before the tumors have time to think and take over her body.  I can hear Crystal crying through the phone.

I told Crystal lets get off the phone, you go read some devotionals, listen to your thoughts. And ask God for help? I am going to call my mom and I will call you back.
As I was on the phone with my mom, Crystal was already texting in…What did grandma say? I immediately told my mom, Crystal is beeping in mom, I need to go.

As I told Crystal her grandma’s thoughts I also told her to call our family doctor, call Dr. Geodken. Ask for his opinion. But no, she wanted mom too. So I did. Crystal now had her opinion along with Gages, Moms, Grandmas, Dr. Geodkens, Dr. Hollis not including her team of doctors from Mayo…So she has decided. Liver Ablation on Tuesday morning.

As I told Crystal…I think God chuckles when he sees that we have made plans because only he knows what truly is going to happen.

Our next step…

Written Monday, April 18th @ 11:00am

The windows are open, the breeze is nice, the birds are chirping and my coffee is tasting pretty good. What a beautiful morning in Iowa. Actually what a beautiful weekend in Iowa. Now time for an update.

We learned last Friday that Crystal will continue with her Chemo. Crystal will have two more rounds before she will get a break.

It is not a fun thing to think about. It is not a fun thing to go through. I can’t even imagine how she feels. You are fighting for your life all the while being so sick that it is hard to get out of bed. Being depressed thinking will I do this all my life? Struggling with memory and asking yourself why me? As a parent, it is hard to watch her go through it. You can see it in her eyes. Some days so tired, confused and sad but doing everything in her power to push forward. Crystal’s Spirit is a beautiful one, she let’s no one ever see that side of her because she does not want to be treated differently. She actually puts on a pretty good act so the ones that love her deeply don’t worry because ironically she ends up feeling bad for them.

Just think when you have the flu or a terrible cold. Do you feel like going to work, doing laundry, cleaning the house, getting groceries…taking care of your child who you unconditional love can be difficult when you are sick. Can you imagine that, all the while mentally knowing that you are fighting for your life. That you are hoping to beat this Cancer. This Cancer that the doctors said that you would not be here at age 23. The Cancer that they said is a Chronic Illness that you will fight for the rest of your life. A disease that can change in a matter of minute. Do miracles happen, they sure do. Crystal is still here and Crystal turns 24 on May 11th.

Yesterday, I spoke at the Health Expo in Cedar Rapids. I was trying to say to the crowd that there are some good things with this round of Chemo. We all know that Chemo is hard and we hate it but Chemo is what is keeping her alive, keeping the tumors from growing/spreading. And the bright side with these couple of rounds is the timing.

See Crystal will not start her next round until April 25th. So she got to enjoy St. Patrick’s Day, Memphis, Easter, her “New” Birthday, her Sister Courtney’s 21st Birthday, the Professional Dance Team’s Party, her Great Uncle’s Bret’s Birthday and the big one…She got to move into her new home with her fiancee, Gage. Yes, Crystal and Gage have moved into their new home to begin their new memories. We all know moving is stressful and what a blessing that she was not on Chemo during this time.

With your prayers Crystal will get through this 1st round of Chemo and then celebrate Mother’s Day, her 24th Birthday and a trip to Vegas with the Spirits. Just in time to start that 2nd round of Chemo and once she finishes that round…It will be her two month break and the wedding festivities begin.

I kept thinking to myself, what is everyone going to get out of what I am saying. This is the third year I have spoke…It’s the same story, I am Tiffany, the owner/choreographer of the CR Spirits Dance Studio for the last 23 years. I am a mother of three and one of my daughters has Stage 4 Pancreatic Cancer, it is a everyday battle. But when I asked myself and whispered to God what do I say…all that came to mind was the truth, like always. Share her story. Share what we are living. So when I spoke…It was not to state look at what she gets to do. It was stating that life goes on, you have to live it, you have to keep planning as difficult as it can be. Because in reality life continues to go on all around you. And somedays that a can make you sad when you think of it that way but on the same token, it can make you appreciate what you have.

Now as for surgery. We are waiting to hear from the surgical team…We are hoping that she will have an option for surgery in August. However, it will be after her scans and after taking a couple of months off of Chemo.

Your prayers are wonderful and up lifting. Thank You. Enjoy your week and always try to look for the good.

Update…

Written on Thursday, March 31st @ 11:25am

We are heading home, it is cold, raining with a mix of snow.

We are very happy to say that we got some good news! However, we are not sure what Crystal’s next step will be till late next week.

We learned that one of the tumors seemed to have disappeared, another tumor has shrunk and one tumor has remained the same.

With that being said, Crystal may have the option for surgery. Then the next question is surgery now or after her wedding/honeymoon in July? If the surgery is on hold then he wants her to do two more months/rounds of chemo then she can take a break for two months for the wedding.

So as Cassidy says, “Mom it’s good news but…well I guess it’s the best news for us”.

We made the most with this trip. Cassidy came with us however Courtney had to stay back because of school. We went to Mall of America last night to break things up. We rode a ride that is new and actually opens April 1st called ” Flight”. It was incredible. We smiled and laughed. It took us around the world. I loved it. I actually teared up but don’t tell them that.

Thank you for your prayers, your positive vibes and still supporting us 3 years later. I must admit this journey can be so tiring and it makes you so emotional.

 

 

Positive thoughts please…

Written on Tuesday, March 29th @ 11:45pm

I am sitting in bed, snuggling with “Calvin”. He always seems to know when I need some love.

We leave bright and early tomorrow for Mayo. Crystal will be doing all of her scans, tests and lab work. Her last meal was at 6pm tonight and she doesn’t get to eat until the late afternoon. So that can make for long day as well. We will then learn the results on Thursday…

A lot of you have asked how Crystal is doing? Well, this last round of Chemo was a rough one but she did it. She got up everyday and did her best to make the most of it.

We scheduled a family trip to Memphis after that round of Chemo. It was wonderful to get away for a few days. It was nice to have something fun to do which helped take her mind off of how she had been feeling.

Today we had a meeting to get the wedding shower organized. It was cute to watch her say what she wants or what she was thinking. Emily was a big help and I am so happy that she will help Courtney and Cassidy put it on. Love ya Em.

But when the meeting was done…Crystal said she felt anxious. I totally knew what she meant. It feels like there is so much to do but your mind will not stop racing, stop worrying. It is exhausting. So we both went home to take a moment before we headed into dance.

We got to the studio, we put on our best smile and we were ready for the night. We offered a new dance class for Special Needs. It sure is uplifting teaching those classes. I smiled the whole night. Goodness what we take for granted and what joy strangers can bring to you.

So here I am again asking for prayers. I have a ritual, we leave for Mayo but before we leave…I make a post. I ask for prayers. And again, I thank you.

A few of you have asked what do you hope you get out of this appointment. I would love a miracle. I believe in miracles. But I would take no change, that the tumors have not grown, not spread and that she can take a 3 month break from Chemo to enjoy her summer. That is what I hope to get.

Next round of chemo has begun…

Written on Wednesday, March 4th @ 11:45am

I am sorry I took the month of February off from writing. I did want to write and inform you of how she is doing but I just really needed to forget about things for awhile. Thank you for keeping her in your prayers while I kept quiet.

The last time I updated her story, I was so happy to finally get that chemo. And then…

See Crystal, has a pill box to keep all of her pills in order. She felt that the bottle seemed light but thought, “No way, they wouldn’t mess up my order, the pills look right”. So as she fills her pill box, she realizes they shorted her 14 pills for this round. Thank goodness she filled her pill box because she could take care of the problem before it became a problem in the middle of her treatment.

As she called the doctor then CVS, it took CVS a day to realize they made a mistake. Funny, they made a mistake, really? Cause I know we didn’t.

Then, two weeks later, I received a “2nd notice letter” from CVS that if Crystal didn’t sign the form for her insurance, she would have trouble getting her next round of Chemo. Well, it was my “first letter” that I received and that threat didn’t settle with me. Needless to say we got this round of Chemo early.

I hope your Valentine’s Day was full of love. Crystal was on Chemo and she was on the last part of her treatment which can be difficult but Gage makes her heart skip a beat so she had a wonderful weekend.

I turned 46 in February and Crystal was not on Chemo that day! YaY me! So we planned a casual day. A walk on the trail to Parlor City for a beer…Crystal surprised me with some of my favorite people there for lunch and gifts. Courtney & Cassidy you are such good liars, you made me smile. I thanked God throughout the day for surrounding me with people that made me feel special.

So, Crystal has begun this round of treatment. Her blood work was good but it is starting to get to her. The sickness, tiredness, forgetfulness, energy, her hands & feet. We talked and realized she did rounds in June, July, then surgery, then surgery complications, then chemo October, November, December, January, February, March and we sure are hoping April then a 3 month break…please, please!

I can’t believe Spring Break is almost here. And this year on Sunday, March 27th (which is Crystal’s 2nd Birthday) it happens to be Easter…What a special day that will be.

We sure do welcome prayers for Wednesday, March 30th & Thursday, March 31st. That is Crystal’s next Mayo appointment. I must admit, I worry about it. When I finally fall asleep at night, I wake up and I subconsciously am already worrying about her June appointment before the big wedding in July. It makes me exhausted to think about it all. The what ifs, the how can this be happening, the I never dreamed this would be my life….then I tell myself…let it go. It sounds easy but it sure is hard to do.

Until next time….