September 2017

Crystal wrote a little something for you on this day in September

Written on Friday, September 8th @ 2:35pm

Sitting in my bedroom, looking out the window, thinking I need to get this update done to get the prayer warriors starting up again.

Happy Father's Day... Crystal wearing purple with her daddy.

Happy Father’s Day… Crystal wearing purple with her daddy.

The weather had a chill in the air yesterday which I must admit gets me excited for wearing sweaters, watching football and then all of a sudden it’s Halloween. Yep, I sure do like fall.

Thinking of football, what a beautiful and thoughtful new tradition the Iowa Hawkeyes have at their games. Waving to all of those fighters in the Children’s Hospital. Makes you tear up when you see it.

Since the last update we only had one scare, Crystal had been feeling ill with a constant headache and had been having some back pain. She is a tough cookie but had enough and went to her family doctor. With her medical history they needed to rule out Cancer in the her bones. We were very shocked to even think of that, we thought it was just a flu bug that needed some medicine to help beat it. She was taken care of immediately by our wonderful family doctor. And then we got good news, no Cancer, it was probably a virus that lasted a little longer than she wanted. But what a day/week of emotions.

Alanna and her thoughtful gift to Crystal.

Alanna and her thoughtful gift to Crystal.

We also in the last few months have celebrated Father’s Day, Cassidy’s (Crystals little sister) purchased her 1st home all by herself, Fourth of July, Crystal and Gage’s 1 year Anniversary plus Rod and I celebrated our 27th year Anniversary. Of course their were birthday parties, concerts, parades and fairs, crazy to think how much life you have lived in just 3 months. It kind of makes you think should we be slowing down or is that living life? What have you done in the last three months, I bet you would be surprised and will forget some of the things you have done or have lived through just in that short period of time.

A thoughtful thing happened in June for Crystal. There was a girl I met years ago on my dance team. As she danced with me, I got to know her, I would even make her lunch during her breaks at college. We became good friends and chatted all the time. This girl, this friend of mine is named Amy and she has a daughter named Alanna. Alanna graduated from high school this last year and her graduation money she received, she graciously donated to Crystal. Such a kind thoughtful gift from a young woman just graduating. However, I think Crystal was even more excited when Alanna started following her on Instagram because see, Alanna is a Supermodel. Thank You again for helping Crystal. Thank you again for making her feel special.

So of course as a mom, I want her to feel special again as we get ready for the next set of scans. Tuesday, September 19th is the big day. Your prayers, kind words, stories are so very welcomed.

And when you send those prayers, those positive vibes please throw in some extra ones for everyone that has been affected by the natural disasters. Could you even imagine fighting Cancer and losing everything on top of it all. It breaks my heart.

A note from Crystal…

I usually don’t like to write in my caring bridge. I am very thankful that my mother has a natural talent in writing and can explain our life’s journey through her eyes. She helps us get the prayers that my family and I need.

My mom on her wedding day July 1990 & Me on my wedding day July 2016. No the photo was not planned.

My mom on her wedding day July 1990 & Me on my wedding day July 2016. No the photo was not planned.

A lot of you ask why don’t I write… And I say because it doesn’t come naturally to me and explaining my life while I am living it can be depressing. Especially when I am going through chemo and surgeries at the time.

I usually keep my thoughts to myself and when you see me I always have a smile on my face. Sometimes it is a real smile and other times it is fake. You can’t be happy all the time when you are fighting cancer.

A lot of you ask how I am doing? Am I nervous? What does your gut feeling tell you?

So far I have been feeling pretty good… just a few back problems. My life is always crazy busy… that’s how I like it! So it leaves very little time for me to worry about cancer and pain.

Am I nervous?

I am always nervous. You never know what the doctor is going to tell you. My cancer is so rare, different and confusing that you never know what they are going to say or what they are going to want you to do. The nice thing about my doctors at the Mayo Clinic is, I love them and I trust them with my life.

So all you cancer patients out there or even the ones that are struggling with health problems~ My advice that mom has always given me is to ALWAYS trust your gut… If you are questioning a doctor, get a second opinion because then when you get results you don’t want to hear, you will know that you are doing what your gut is telling you to do.

My gut feeling right now… I am not really worried about cancer at this second… I am just trying to get ready for CR Spirit Auditions on September 13… after those is when I will have time to worry about cancer.

When I go into my appointments I always get my mind ready for good news, but also bad news. It is Stage 4 Pancreatic Cancer with a high grade neuroendocrine tumor… so you can’t always prepare for the best.

For those who don’t know what a high grade neuroendocrine tumor is and honestly I didn’t really know what that meant, a high grade neuroendocrine tumor is a type of carcinoma. It is a fast growing and aggressive cancer. That is why we go to the Mayo every 2-3 months so we can stay on top of it.

With that being said I am very lucky to still be alive. Back in 2013 we didn’t know if I would even make it a few years. And look at me today. I am 25 years old. I have graduated college. Been on the CR Spirits Professional Dance Team for 8 years. Married to the love of my life. Bought a beautiful home. And I have learned so much in the past 4 years.. not just about myself.. but about life. I wish in my teenage years I would have known what I know now. But that is just life that is how we grow has people.

Getting ready for a new Season with the CR Spirits! It's gonna be the Spirits 25th Year Anniversary!

Getting ready for a new Season with the CR Spirits! It’s gonna be the Spirits 25th Year Anniversary!

Now lets get back to CR Spirit Auditions on September 13th! This is something I always look forward too. It’s like a fresh new start into something I love. Thank God for this dance team & studio. I don’t know who I would be today without it. Mom you truly have a talent. I wish every single kid in Cedar Rapids could be a part of this studio. It is amazing and I am so happy it has been a part of my life since I was born. I wouldn’t have it any other way.

So I am going to wrap this up. I would love some prayers on September 19th. I love hearing from everybody that week! And if I don’t get back to you it is because I am getting so much love at once and I can’t respond to everybody.

Also I love hearing other peoples stories and goals in life. That is one thing I have learned about myself this year. I love hearing other peoples journeys… not just about cancer but life. It makes me happy. And I love hearing peoples goals. I think that is why I love teaching the Junior Spirits ages 13-16.. they just have so many goals! It is the best part about my Tuesday Nights!
Thank you for reading! Have a great day!

-Crystal Marie

Another miracle…

Written on Wednesday, September 20th @ 11:10am

As I lay here, getting ready for bed, trying to not think about tomorrow, my heart races. I begin to think about last Wednesday at the Spirit auditions. As we were leaving the Studio after a great tryout Crystal says, "I'm so excited about this Season! It's going to be the best! 25 Years Mom! And mom, if my Cancer is back, well... it's gonna suck. It will not ruin this Season but it will suck." As I smiled at her I got into my car as she got into hers, a drive home with tears in my eyes as I begged God, please no. Please no more Cancer. #cancersucks #myhero #myfighter #mydaughter #mydancer #pancreaticcancer #spiritfamily #crspirits

FB Post Monday Night~  As I lay here, getting ready for bed, trying to not think about tomorrow, my heart races. I begin to think about last Wednesday at the Spirit auditions. As we were leaving the Studio after a great tryout Crystal says, “I’m so excited about this Season! It’s going to be the best! 25 Years Mom! And mom, if my Cancer is back, well… it’s gonna suck. It will not ruin this Season but it will suck.” As I smiled at her I got into my car as she got into hers, a drive home with tears in my eyes as I begged God, please no. Please no more Cancer. #cancersucks #myhero #myfighter #mydaughter #mydancer #pancreaticcancer #spiritfamily #crspirits

I slept so good last night. Woke up early this morning, returned some of your messages and fell back to sleep. It is crazy how exhausted one day at Mayo can be but like I said to Crystal, that worry/stress can sure knock you out, and you don’t even realize it.

The day started for me at 3:15am, what I didn’t expect was the terrible fog. As I drove over to pick the kids up from their home for the drive to Mayo, I realized how bad the drive was going to be. I began my praying, my begging for us getting to Mayo safely.

By the time we were out of the Waterloo area, Crystal and Gage were sound asleep. My knuckles were probably white from hanging on to the steering wheel. Looking for a possible car all of a sudden in front of me, to a deer running out in front of me. Oh trust me, I chatted with God the whole time. I even looked for the good. Let see, pouring rain or fog? Ice storm or fog? Snow storm or fog? Cancer back or fog? Yep, fog won each time. And finally the fog lifted for the last hour of the drive to Mayo.

Things were in a little different order when we got to Mayo. Nothing big, just we usually start with blood but this time we started with the MRI. Crystal, to be expected was a little on edge, quiet and took care of her appointments as Gage and I followed behind her. I even tried to tell her, honey smile because right now, you are still cancer free, enjoy this moment. Ummmm that went in one ear, out the other :)

I choreographed a bit. Music always takes you away.

I choreographed a bit. Music always takes you away.

Crystal back in the MRI waiting room made some friends, some other fighters and enjoyed telling Gage and I about them. Crystal loved their energy. They were positive. And even one of them, Mark has his own private plane but had to fly the airlines right now because he is in the process of getting a bigger plane. He was very happy with Mayo because his first diagnosis was not good. And the woman, she was from Chicago and was missed diagnosed so her Cancer is now all over her body. She now has moved to the Waterloo area so she can be closer to Mayo and will continue to be on top of her Cancer so she can keep fighting. Crystal I think enjoyed sharing her story too with others that fight, where Gage and I have no idea. I am sure she then doesn’t feel so alone.

After her tests, we had a quick snack, did some shopping or I should say looking, a late lunch and then it was time. Here we go.

Thank YouThere was really no waiting this time. Crystal checked in, they called us back. We got to the room and sat in the order we always do. We learn we will meet a new doctor to us but he is on her team. We meet Dr. Mahipal. He is kind. He is positive. He walks into the room with a smile. He introduces himself, we shake hands, he comes right out and says, the scans look great. And the three of us, sat with our mouths open. He said, it’s good news. We still sat with our mouths open, with a slight smile. I guess shock. lol

They still see the spots in her liver, no change and not sure what they are. Including the ones in her lungs and a spot on her spine. Now honestly none of us had heard of the lungs/spine ones. So I of course had some questions but he assured us that they have not changed. And they are not sure what they are. So this appointment is good news. So celebrate, he said in his accent, and we will see you in January. That is right, January! She will get to enjoy Halloween, Thanksgiving, Cassidy’s Birthday in Vegas, Christmas and New Year’s Eve with no worry, no tests, no chemo, no cancer.

Time to Celebrate!

Time to Celebrate!

As we leave, we walk down the hallway, we stop to catch our breath, my eyes begin to tear up. And Crystal says, I am so exhausted. She calls her dad. She calls her grandma. We video her sisters. And then a post to Facebook. Life is good. Now the drive home to celebrate. A hour into the drive, I look at Gage in the review mirror asleep. I look at Crystal in the passenger seat asleep. And I smile and think did that all just happen. Thank you God for whatever journey this is I am on.

Thank you for the messages, the positive words, the cards, the flowers, the love, the prayers. Thank you God for guiding me on this journey. Thank you to her team of doctors at Mayo, Dr. McWilliams, Dr. Pitot, Dr. Mahipal, Dr. Banck. Thank you to her team of doctors at Family Physicians.

We all live another 3 months!

We all live another 3 months!

June 2017

She beat it again!

Written on Thursday, June 8th @ 9:50am

Our hearts are filled with joy. She is a miracle. She has beaten the odds. And I can’t thank you all enough for your prayers and your positive thoughts. Your stories that you have shared, the cards you have sent and the gifts you have given…We are blessed.

One of the snap chats I got!  Look at these two...

One of the snap chats I got! Look at these two…

My morning started out beautifully, the weather is just perfect, the sun is beaming and I am receiving snap chat’s from Crystal. She is really not a morning person so I am thinking she is liking the late afternoon appointments the last two days. She is smiling, she is scared but she has a plan in her mind for good news and bad news.

The ride to Mayo is nice and with the weather being gorgeous, it makes the ride even better. To top it off, I thought I was going alone but Rod found way to break away.

My mom had sent me a text earlier that morning wishing safe travels, saying her prayers, she also reminded me that her mother has been gone for 38 long years ago today. When we learned about Crystal’s appointments and the dates. Knowing she was getting her news on this day, we felt it was a sign. We felt my grandmother was going to be our angel for the day and for all of us. I miss her too mom.

I was 9 years old when my grandmother passed. I kept reliving that day, that night as I drove to Mayo. I tried listening to the music and choreographing like usual but that wasn’t working. Then I would start thinking about Crystal and the news, good or bad. How we will handle it, which thinking about it made me sick so then I thought maybe I should chat with God and do some thanking. Ask for prayers for not only Crystal and my family but others that I know need them. But I found my mind wondering back to my grandmother again.

Our day....

Our day….

Now that I am older, I look at that day so different. I remember her putting on a black coat and never thought anything about it until now I think, wow it was June, was she cold? Wait she had her pajamas on, maybe that is why, just to cover up her pj’s. It was my brother and me home with her until my aunt came home from a softball game. I can still hear my aunt screaming when my grandmother collapsed in front of us. It took me years to get over her not being here anymore but there is one thing I do know. If I could visit with anyone today, it would be her. I know she is the reason I dance today. I know she is the one that has guided me.

As we arrive to Rochester, Crystal and Gage are full of smiles, they have found a place to eat. Which was amazing! And Courtney would love the decor! It was a Mexican restaurant “hefe rojo”. After that we walked to the Mayo building. I could already feel my heart racing but Gage is so funny, which really does help things go by. Gage is our entertainment. Rod, he is so quiet. Crystal and I, we keep smiling.

Sitting on that floor, I was wishing I had not eaten lunch. My tummy was starting to hurt, my heart was racing and I just wanted to know the news now.

Time to enjoy the evening...

Time to enjoy the evening…

Going back to the room and waiting again for her doctor is a long wait. We walked right into this little room just like always. Crystal sits, Gage then sits, I sit and then Rod. I was even thinking the last time I was not here and it was hard to wait but I had two friends pampering me as I waited which was nice. Hmmmmm I guess both ways is hard. Then you hear those footsteps and the door handle begins to move…it’s time.

This tall skinny doctor with his glasses on walks in the room. Smiling, happy to see Crystal, asking about her vacations, asking her about dancing and as I stared at him, I was thinking gosh could I tell if it was back or not in his eyes. He is one of her teams doctors and I have met him before. He is personable, nice looking and is just a surprised about her news as we are.

There are two spots in her liver that have not changed. They feel they are scars basically but they continue to watch them. Other than that they found no evidence of cancer.

I can’t even describe how I feel. It is such a relief. And then I hear Crystal’s words. “Mom, I really thought it was back. I guess I just thought things were so good and I know the odds are against me”. I hugged her so tight! She will be going back in September. Crystal gets to enjoy her summer being a Stage 4 Pancreatic Cancer Survivor!

Now let’s video your sisters since they are working to tell them the news. By the way, we did post the short clip but it is on Facebook even though it was only suppose to be for her sisters. And just so you know, I did not care for that video of me. My daughter loved it and said, “Mom, get some confidence, you look fine and I look cute! I just beat cancer, post it so everyone knows the news.” Gotta love the younger generation they keep you on your toes.

I thought I would post some facts about Pancreatic Cancer so you can see how crazy it is that she is beating the odds.

Pancreatic Cancer Facts
• In 2017 an estimated 53,670 Americans will be diagnosed with pancreatic cancer in the U.S., and over 43,090 will die from pancreatic cancer.
• Pancreatic cancer is the 3rd leading cause of cancer-related death in the United States surpassing breast cancer. It is expected to become the 2nd leading cause of cancer-related death in the US by the year 2020, surpassing colorectal cancer.
• Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years.
• Pancreatic cancer has the highest mortality rate of all major cancers. 91% of pancreatic cancer patients will die within five years of diagnosis – only 9% will survive more than five years. 74% of patients die within the first year of diagnosis.
• Few risk factors for developing pancreatic cancer are defined. The risk for cigarette smokers is nearly twice that for those who have never smoked. Family history of pancreatic cancer, chronic pancreatitis, alcohol use, obesity and diabetes are risk factors. Individuals with Lynch syndrome and certain other genetic syndromes, as well as BRCA1 and BRCA2 mutation carriers, are also at increased risk.
• Pancreatic cancer may cause only vague symptoms that could indicate many different conditions within the abdomen or gastrointestinal tract. Symptoms include pain (usually abdominal or back pain), weight loss, jaundice (yellowing of the skin and eyes), loss of appetite, nausea, changes in stool, and diabetes.
• Treatment options for pancreatic cancer: Surgery, radiation therapy and chemotherapy are treatment options that extend survival or relieve symptoms, but seldom produce a cure. Surgical removal of the tumor is possible in less than 20% of patients diagnosed with pancreatic cancer because detection is often in late stages and has spread beyond the pancreas. Adjuvant treatment with chemotherapy (and sometimes radiation) may lower the risk of recurrence. For advanced disease, chemotherapy (sometimes along with a targeted therapy drug) may lengthen survival. Clinical trials are testing several new agents for their ability to improve survival.
• Pancreatic cancer is a leading cause of cancer death largely because there are no detection tools to diagnose the disease in its early stages when surgical removal of the tumor is still possible.
*Source for statistics: American Cancer Society: Cancer Facts & Figures 2017

Looking for some prayers and positive thoughts…

Written on Tuesday, June 6th @ 11:30am

The weather is absolutely beautiful here in Iowa. As I sip my coffee and have Calvin laying on my lap, I prepare mentally for the next two days.

Vegas! And my dear friend Joe surprised Crystal for her birthday & me Mother's Day with a Meet & Greet with Britney Spears!

Vegas! And my dear friend Joe surprised Crystal for her birthday & me for Mother’s Day with a Meet & Greet with Britney Spears!

Crystal and Gage are off to Mayo. She begins her tests this late afternoon. We will know her results by late afternoon tomorrow, the 7th.

The biggest question I have had lately is, are you going this time? So funny, I have not asked and she knows I will go at the drop of a hat. Crystal had me over to her home for lunch last Friday. She asked if I would come to the doctor’s meeting when she gets the results. I think my eyes were huge, I smiled and said Yes. Yes. So, I will be driving to Rochester tomorrow for lunch and her appointment with the doctor’s, Crystal and Gage.

Crystal has had a busy May. She turned 25, she traveled to Vegas, she traveled to California. She looks beautiful, relaxed and of course smiling. Now does she worry about the cancer coming back? Yes. Is it in the back of her mind? Yes, at all times. I believe it is in the back of everyone’s minds, we just don’t say it.

Crystal & Gage with their good friends getting ready for the two week adventure!

Crystal & Gage with their good friends getting ready for the two week adventure!

At lunch we talked about many things. We talked about all of her blessings. We talked about her vacations. How lucky to be surrounded by a confident team of women in Vegas and then turn around and see God’s creations in Yosemite. I was telling Crystal that I needed to write an update and if there was anything she would like to say or write. She thought for a second and said, “Well, everyone is saying I look good. Lot’s of people are asking me how I am feeling. And as I tell them, Thank You and I am really feeling great. I think to myself. I always feel great. Except for the first time. And of course when I am on chemo or have had a surgery. But every time it has come back, I have always felt great. I believe that is why it is called the Silent Killer.”

It made me sad to hear her say that. I guess the truth sometimes hurts.

As for me, I have prayed, I have been thankful, I have asked for guidance. And I have begged to let us have a summer with our kids grown, no schooling, no activities, no wedding planning, just us living life. No cancer, no chemo, no procedures just us living life. But when I say, I realize that is what we are doing, living life. And living life is not always blissful and worry free, it is how we personally look at our own life stories.

As for Crystal’s sisters. Courtney is loving where she works. She is a darling dental assistant. She has moved into a townhouse with her boyfriend and his brother. Three’s Company. When we were in Vegas with the dance team and ready to come home, Courtney said, “I am ready to come home because I love my life in Iowa”. I can’t tell you how happy it was to hear that, it made me smile and think about myself. So, the sad thing is when I am on vacation… I never want to come home so what the heck does that mean? Oh wait, yea I have bills, three children, one fighting cancer, and marriage… yea that is work. So reality sometimes doesn’t look so much fun to come back to. lol

As for her little sister Cassidy, she has bought her 1st home on her own. It is amazing. That was something she really wanted to do, so she did it. She is very fortunate that she loves her job. Plus she has been working and saving since her senior year in high school. She never enjoyed school, she even tried Kirkwood but it was not for her. It is amazing how people can judge, even your own peers when you are not doing what society thinks you should be doing but like I tell her…just wait and see how their lives turn out when they are 50 years old.

National Cancer Survivor Day was Sunday, June 4th! We did celebrate, we will continue to fight and raise awareness. We will remember that life is a gift and we need to continue to live it.

Thank you for the love you give my family…

April 2017

1 Year Ago…

Written on Wednesday, April 26th @ 11:00am

Crystal our Fighter!

Crystal our Fighter!

I could hear the rain this early morning, my bedroom window was slightly opened. I could feel the damp cold air. I got up, made some coffee and reflected what I was doing a year ago. I knew that today was going to be the day to do an update on Crystal.

1 year ago a miracle happened. The team of doctors at Mayo used their gifted hands and removed two tumors from her liver. Something that on May 11th, 2015 said would not happen. If you recall, that was Crystal’s Birthday when we learned that the tumors were back. They said that their was nothing they could do except to begin Chemo again.

And today, a year later, there has been no chemo, no major surgeries, no procedures…It is a miracle. For the first time since 2013, she has gotten to go a year with none of that. We are so blessed. We are so thankful. I don’t even know how to say it with words.

I have to admit, the worry is always there. Even Crystal said to me last week, “Mom when they felt they got those tumors, they did say it should give me a year with no detection. At least that was what they were hoping for. So now that it has been a year, do you think it is back? It is so hard to not think about it.” And of course as a mom, I feel bad that she has to think about it, she looks at life very different that many of us. It is a blessing and a curse.

We learned last week that Crystal’s next appointment is June 6th & 7th which means she gets to enjoy the month of May with no worries if it is back or not. That works perfect for the busy month of May that she has planned.

Spirit Show 2017

Spirit Show 2017

As a mom, I am very happy that there is no appointment in May. I didn’t want to worry about the news when she has so much happy stuff planned. So, thank you God for helping make that happen without us doing anything.

A lot of you have asked me, are you going with her to the next appointment at Mayo? Funny, I don’t know. That is her choice. All that matters is that she knows I am there when she is ready for me to go. Some of you have been very vocal that I should go anyway. I think that is great if it works like that in your family. But I personally would never invade her life. I learned that in marriage counseling years ago. Who ever dreamed I would use those tools with my daughter. She is a soon to be 25 year old beautiful woman. With her own family. I respect her. I trust her. We’ve raised her to know what we like and don’t. And I know that her husband loves her just as much as me. Plus, she is not alone…God is always with her. And all of you pray for her. She can feel those prayers. Her mom can feel it too.

This year was very difficult for me. Lots of tears from March 27th-till about last week. It was the first time that it really hit hard. I think it was because it was the first time, we weren’t doing something like surgery, chemo, doctor visits…So I would just relive that 2013 year. It was shocking, it was horrible, it was sad, it was hurtful. I did good writing to you all but there is so much I never wrote. Life can be so hard, emotionally, physically and financially. People can be so mean, so judge mental and when it comes from family it hurts. It takes all of the positive people in your life to rise above it. Sometimes you ask if there is a God? Why would he allow this? As my mom recently said to me, “Honey, that is not God, it is life. God is there to help you through it”.

Since my last update, I celebrated a birthday, there was the Spirit Show, St. Patrick’s Day, Crystal’s “new” birthday, her sister’s (Courtney’s birthday), Easter and learning the news of her next appointment. When you type it, wow…that is a lot.

At the Spirit Show we did a tribute to the ones fighting cancer. I must admit it was emotional but I felt it was important to take the platform that I have built for 24 years and use it for good. It’s funny that I say that. I have gotten grief from some people about that. I have heard friends/family make remarks that I use it to promote my business. When I first heard that, it stung. I would never do that. But Crystal brought it to my attention. Do what mom? Talk about your daughter? And you just happen to own your business which happens to be in the public a lot. Help others see how horrible cancer is? Show others the we can fight it together? Look who is saying it. And Crystal is right. She sure is my rock. Jon Read, with Read Photography said to me years ago at a photo shoot. You have no idea of all of the contacts you are making with the CR Spirits, they may not help you at the moment but they may help one of your children in their future. Remember that Tiffany, that is what I have learned at my age. Now keep in my mind, he was not referring to one of my children being sick, Jon was thinking more business and if my daughters were to ever take over. But those words he said, he is so right. A lot prayers and support came from those contacts business/performances/studio. It is kind of like the people that complain about Facebook. Why wouldn’t you want all of the prayers you can get? If you had a way to reach lots of people and ask for help, why wouldn’t you? I believe in raising awareness, I believe in sharing our journey, I believe in miracles. I am positive person. And if you can’t find the good in it, or a positive side in it then those are your problems, your character, not mine. I choose to rise above. To all of you fighting cancer, here is a video to show the support behind you. Never give up Hope. Hope is stronger than Fear.


February 2017

I believe in miracles.

Written on Friday, February 17th @ 2:35pm

Mother and daughter

Mother and daughter

It is a beautiful warm sunny day in Iowa. That alone makes you smile. I get a phone call early this morning from Crystal. “Hey mom, what are you doing?” Me, “I am about to leave for the Studio.” Crystal, “Hmmm I was thinking about coming over for coffee.” I was so excited, I scrambled to hurry up and make a cup. We’ve not been able to do that in awhile.

So yesterday was a big day! I was up at 5:00am hoping to receive a phone call from Crystal saying she changed her mind and would like me to come to Rochester with them. Even typing this right now, it makes me smile because I knew deep down inside that was not going to happen but I sure was hopeful.

I did receive many beautiful messages from you all. Thank you from the bottom of my heart. And I did receive a fun surprise, at 9:45am, I had two very dear friends take me to get a pedicure and make lunch for me and my other two daughters. Such a blessing. There were only a few tears. How wonderful to be in such good company that it helps take your mind else where while you are waiting to hear the news.

Friends/Family the Best Medicine...

Friends/Family the Best Medicine…

Throughout the day, every time I looked to see what time it was, I thought about where we would be at or what we would be doing at that time if I would have been with them. Oh we would be driving, Oh we would be watching the sunrise in the car, Oh we would be talking about whatever popped up on Facebook, Oh we would be looking for a parking spot, Oh she would be checking in for her blood work…so on and so on.

Gage did text the minute they got checked into her first appointment. It was nice to hear from him. And then around lunch time, my phone began to ring. I saw it was Crystal and my heart dropped. Hello, Hello Crystal? You okay? Everything good? As Crystal says, probably rolling her eyes, “Yes, mom I just wanted to tell you we are getting lunch. I finished my tests, they even did a new one on me. It is really cold here but the sun is out and we are getting Subway.” I was relieved. I was so happy she called. After hanging up I immediately began wondering will she call with he news right away? Will the doctors be late? I mean I should get a phone call by 2pm? Right? Well, unless the doctors are late. But they are never late…

Crystal and Gage spreading the Great News.

Crystal and Gage spreading the Great News.

Some of you have said to me, I can’t believe how fast she is getting the news this time. Well, really we do get the news pretty fast, in less than two days. One day for testing and the next day for results. But this time was the first time they could get everything done in one day.

I must admit, I was getting anxious. By 1:00pm I tried to chat with Paulette, Shannon, Courtney and Cassidy without missing a beat but I could feel my blood pressure rising. I could feel me begin to sweat, I could feel my heart racing even when I tried my best to act like I was fine.

Crystal’s appointment was at 1:45pm…I sent her and Gage a text message with a purple heart at that time. And then I waited.

At 2:50pm…I received a message from John with Jones County Fair that said, “Keep the Faith”.  Crazy timing because my phone immediately rang once I read that. It was Crystal.

“Mom, they didn’t find anything. They really didn’t.” She sounded like she had been crying, but maybe she is just trying to be quiet up in the waiting room. I know exactly where they are at. I put her on speaker so everyone at the table could hear her. We were all elated. It was truly a miracle.

Thank you. Thank you.

Thank you. Thank you.

Now she was going to call her grandma, her dad and then she would post a “Cancer Free” picture.

And tonight we were going to celebrate!

Her next appointment will be in May. And again, prayers will be welcomed. Oh goodness, if she gets good news in May it will be 1 year of being Cancer Free. That would be the first time since 2013…Oh I hope that is what happens but wait, there I go agin not enjoying the news we just got. Another reminder to live in the moment.

January 2017

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 2016

Christmas 2016

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”.

December 2016

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.

You weren't created to do life on your own. ~God

You weren’t created to do life on your own. ~God

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.

Crystal's Post from Last Night. I guess that is how she is feeling & I don't blame her!

Crystal’s Post from Last Night. I guess that is how she is feeling & I don’t blame her!

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.

Courtney's Last Day!

Courtney’s Last Day!

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.

I am so happy they are close. It truly is a blessing. Game night at the Barnett's missing one...Cassidy's boyfriend.

I am so happy they are close. It truly is a blessing. Game night at the Barnett’s missing one…Cassidy’s boyfriend.

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.

November 2016

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.

Age is just a number...Crystal, Courtney & Cassidy carving pumpkins with the ones they love...

Age is just a number…Crystal, Courtney & Cassidy carving pumpkins with the ones they love…

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.

PANCAN Purple Light in Cedar Falls

PANCAN Purple Light in Cedar Falls

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.

September 2016

We got our news…

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

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

The drive

The drive

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.

Our view...

Our view…

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…

 

And we try not to worry…

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

Crystal and Tiffany...Mini Me's.

Crystal and Tiffany…Mini Me’s.

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.

August 2016

Is it to good to be true…

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

Our Family....

Our Family….

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.

July 2016

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…

Mom giving some advice before the big moment.

Mom giving some advice before the big moment.

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.

Crystal's Smile Says it All...

Crystal’s Smile Says it All…

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.

Courtney helping Crystal. This photo was taken right before she sees Gage.

Courtney helping Crystal. This photo was taken right before she sees Gage.

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.

Dad and Mom so happy for our daughter.

Dad and Mom so happy for our daughter.

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.

26 years ago this was used at our wedding. Crystal & Gage will be using this at theirs. Plus she will be wearing my pearl necklace I wore on that day...

26 years ago this was used at our wedding. Crystal & Gage will be using this at theirs. Plus she will be wearing my pearl necklace I wore on that day…

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 was full of Fireworks.

Hope your 4th of July was full of Fireworks.

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.

Crystal at Sky Zone.

Crystal at Sky Zone.

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!

Crystal's Bachelorette Party!

Crystal’s Bachelorette Party!

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.

Just a few of the CR Spirits.

Just a few of the CR Spirits.

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.

Crystal & Gage make a wish on the 4th of July.

Crystal & Gage make a wish on the 4th of July.

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.