January 2020

Happy New Year!

Written on Friday, January 3rd, 2020 @ 12:30pm

Merry Christmas Everyone!

2020 is going to be a great year! We are starting out with a positive attitude. That is always the best way to begin anything. We have been planning things for this big year since August of last year and we sure hope God agrees with our plans.

As for Crystal, she is still smiling. Thanksgiving was a blessing and by the photos Crystal looked great however, the pain was a little much and when she went off of her pain meds she also went through withdrawals, which is shocking because it wasn’t like she was on them long. The shakes and vomiting after a surgery does not make it easy but once she got through all of that, once she got back into her daily routine, seeing the kids in the studio, practicing with the Professional Dance Team as much as she could and then thinking of Christmas time with family and friends, those thoughts, that attitude are what helped her turn things around.

We hope everyone’s Christmas was meaningful to you and your family. We hope that if there was some sad times that you found peace. We hope that you smiled, you laughed, you reminisced and felt ready to bring in the New Year with New Hope.

Our Family. We have grown…We have Sons!

Crystal will be making her next appointment to Mayo in March. It will be a time that we will definitely be asking for prayers. At this point she has been able to stay off of Chemo, which is nice but scary at the same time.

My reason for writing today was last night I had the opportunity to watch Alex Trebek from Jeopardy. His attitude is inspiring. He is honest, realistic and passionate. I have seen him in a few interviews since his diagnoses of Stage 4 Pancreatic Cancer and find that his story inspires me so very much. As I am writing this update, I know Crystal is actually watching it since we recorded it, she will be calling me once she is done watching and I will beg her to write him. 

Also, watching the show last night there was a commercial for the 20/20 episode that airs this evening. It was about the three girls that had been kidnapped in Cleveland. I immediately thought of Crystal, I remember the night of her Dance-A-Thon. That Dance-A-Thon was a blessing to our family and I thank my niece Heather for helping run all of that. I remember having to speak in front of a large crowd of people, I was nervous, I felt strange but yet we needed the donations. I remember feeling taking back by the support, shocked, hurt, sad, I felt it all but kept my composure even during family issues. I remember stating to the gymnasium full of people, that as sad as Crystal Story is, at least she is still with us, she was taken from us suddenly. Or kidnapped and not knowing where she could be. I don’t think I could ever handle not knowing where my daughters were. So I will take this journey for our family then. The craziest thing was the very next day those girls were found…I bet I received over 30 messages from people that were in that gymnasium who immediately thought of Crystal and the words I spoke at the Dance-A-Thon the moment it hit the news that those girls were found. So I know what I will be watching this evening.

With all of that, I knew I needed to update all of our prayer warriors. 

Here is some posts that were done on Social Media since I know some of you do not have that.

Happy New Year…Thank You for showing me that the world still has kind people. Thank You for helping me find Peace.

Cheers to the New Year! As 2019 comes to an end, I would like to Thank You all for the prayers, positive vibes, kind remarks and stories you took the time to share with me this last year. Time is such a precious gift. Time, just think of that word. 2019 brought me travels, brought me even closer to my family & friends. It made me smile, it made me laugh, it made me cry, it made me angry. In 2019 I took a chance with my dance team, because of my daughter, and I found inspiration. Taking chances can be blessings. 2019 brought me even closer to God. I watched my oldest daughter have two major surgeries to fight for her life, with 8 rounds of chemo and still smile as she question her next steps. I watched my middle daughter live her life the way she has planned it. Her career and soon to be married has made 2019 a beautiful start to her new journey. I’ve watched my youngest daughter grow up and find herself through some tough choices she had to make, but yet she has learned probably more in the last year than she ever has. 2019 has confirmed to me that being parent never stops or I should say, being a good parent means that it never ends. I am thankful that I can call my mom everyday even to tell her nothing important and she always picks up. I am thankful that God has shown me that he has me where I am suppose to be in my life even when I have questioned him. I am thankful for the miracles he has given my family. I am thankful that 29 years of marriage, which takes so much work and sacrificing has shown me another side that can be beautiful if you can get through the storms. I have learned as you age, your body changes but so does your heart and so does your confidence. Cheers to 2020! Cheers to being lucky enough to still be here in this world to make someone else smile. Cheers to our plans in 2020 and that God has agreed to our plans we’ve made too.

Our Crystal…Our Fighter. Her words after New Years.

Happy New Year! 🎉

Last year at this time I was preparing for my Lung Ablation Surgery to remove my tumors. Last year I went thru 8 rounds of chemotherapy. And Last Year I had another surgery right before Thanksgiving. You can say I definitely had some hard times in 2019. But right now for the first day in 2020 I can say I have been off chemo for almost 4 months and I feel great!

I also had some awesome times in 2019. One big thing would be planning/deciding to do another Spirit Show in 2020 (if you still need tickets… let me know). My sister got engaged! And my hubby and I had a lot of fun adventures… like our trip to Alaska 🥰

I hope 2020 brings more exciting adventures and my body stays healthy.

November 2019

Coming home…

Written Saturday, November 23rd @ 2:20pm

Game time!

A thankful Thanksgiving next week! Now let’s hit the road and get home!

I can’t say enough about the power of prayers, the power of believing and the strength it takes to trust the path.

 

 

Going for a walk!

Time to go!

Today is a new day….

Written Saturday, November 23rd @ 6:55am

Good morning. Today is a new day. I am happy to report that they removed 4 tumors from Crystals liver.

Early yesterday morning it was dark, chilly and peaceful as we walked across the street to the St. Mary’s Hospital from our hotel. It was crazy how quiet it was and yet busy. And at that time of morning so many people are coming into work to start their day of helping others. We arrived at 6:25am. I was happy to know that the doctor doing her ablation was the one who has worked on her before. I must say it gives comfort.

The photo sent to Courtney & Cassidy

The procedure should take about 2 hours. We thought there was 2 possible 3 tumors. We learned there was now 3 possible 4 tumors. And our talented doctor was going for all of them, if he could.

As they prepped Crystal for surgery, we had a little issue with the IV, she seemed a little dehydrated so it was difficult to put it in. Not a great start but everyone was confident they will take care of that in the operating room. Hugs, kisses and she is off down the hallway to begin.

Gage, Rod and I go get a little breakfast. Every time there is an update done on Crystal, which is in the form of a text sent to Gage, he immediately let’s us know, such a good man. I am so proud to say he is our son in law.

4 hours later she is finally out of surgery. The doctor comes and chats with us. He explains that he did get the 4 tumors and that she will be in pain. We are happy with the news. We are relived it’s over. Our doctor is kind, a determined doctor and truly cares for my daughter. You can feel it. I quickly and quietly thank God.

We are excited to see her but she is still in recovery. We see that she will be sharing a room, so for now we find a waiting room, the size of a closet, with three chairs and a tv. As we watch tv, it seems like it’s taking forever so I go check to see maybe how much longer. And then I spot them taking her into her room. I walk a little faster to tell her we are here and I will get the boys. And that’s when she looks at me and I know it’s not good. I don’t move. I stare, I watch the two nurses help her, I take a deep breath and ask God for strength and guidance.

As they are switching her from bed to bed, I can see her face, glistening, her eyes are fixed on me and she has no strength. I also notice this shared room seems small and whomever is on the other side has no respect.

As the nurse gets her situated and begins to ask her questions, Crystals wants my hand. That small little hand with an IV in it. She whispers, “Mom, I’m nauseous, I don’t feel right, they’ve already changed my clothes because I’m sweating so bad”. I can see sweat on her forehead and they are questioning a fever. She is dry, she is struggling to talk, she needs water. Her ears are always sensitive after surgery, and the nurse is trying to ask questions but the people on the other side are talking loud, the tv is loud, the banging around is loud, eating food that they brought in brings a smell that this hot room didn’t need from just getting out of surgery. As a mom, you are being polite, asking for a fan, a washcloth you can wet for her forehead and a private room, like now! I knew Crystal was not doing well, when she just wanted mom. No one else just mom. As beautiful as it is to hear her say that, it breaks your heart terribly. And then you see the tears she says, “Mom, I’m done doing this. I don’t want to do this anymore. I just can’t do it”. I immediately told her, “I don’t understand Gods path for you honey and I’m sorry. And you don’t have to do this again because right now they got the 4 tumors so let’s not put anything negative out there let’s just focus on right now”. And that quiet little voice says, “okay”. It was so hard not to cry, it was so hard not to be angry.

I went and told the boys what was going on and Gage began the process of needing this private room. I went back to my very ill daughter. I tried my best to hold her hand and ask for prayers to the people that were texting. The doctor on the floor stayed with her, along with the nurse and myself as we tried to get her comfortable. It is hard to ask question and hear her response with the commotion going on from her roommate. I explain again that her husband will be staying with her tonight and I know that you can’t do that in a shared room so how is finding her a room coming? I could tell her nurse wanted her out if that room too but it was out of her hands.

As time passed, Crystal asked me to take a pic and send it to her sisters. To get Gage and her dad. Which I was ready to do so I could call my mom.

Trust me, I understand that we all can’t have private rooms. I understand that manners and respect are different for everyone that’s what makes the world go round. Trust me I asked God to help me forgive the thoughts that were going through my head on her roommate. To help me be more compassionate. And in about 5 hours we were blessed with a private room and my daughter finally could rest, in quiet.

Arriving in this private room, Crystal still was not doing good but you could also feel the relief from all of us including our fighter.

Finally by 6:45pm, Crystal was getting the pain under control, she asked about her sisters. She asked for her phone so we went to eat dinner and told her we would be back.

Dinner was good but coming back to the hospital and seeing my daughter looking rested was even better. And that is when I learned that when I went to get the boys, she stated to the nurse. I will not stay here tonight, I’m going back to my hotel if I can’t get a private room. Hearing her tell us that story made me smile, I thought, I have raised a strong fighter.

I hope when I get to the hospital this morning I see a rested Gage and a fighter ready to go home sometime today.


Pancreatic Cancer Awareness Day and Appointments at Mayo

Written on Thursday, November 21st @ 8:30am

This is what your fighter looks like. 7 Surgeries and over 20 rounds of chemo!

It is a rainy morning here in Iowa. I am sitting in my kitchen, no lights on, drinking some cold water but wanting Starbucks. Looking out the sliding glass door, I can see the trees blowing, pine needles are falling from our trees and I’m thinking, it seems so dark out. Well ironically today is Pancreatic Cancer Awareness Day, so it is a perfect day for you to wear purple. And Crystal and Gage have already left this morning for Rochester, MN. That is right, they have left and tomorrow is her surgery. Time just flew by since October 9th. I can’t believe it is already here.

Today, Crystal will be getting all of her tests done before her early surgery tomorrow. Rod and I will be heading up later today. With that being said, we would love those prayers to begin. I know we got the news to have this procedure done and it was a miracle but now I just hope that they can get all the tumors in her liver, that she can recover well, that we get home safely and that we can enjoy Thanksgiving next week with our family. Goodness writing all of that out I feel so demanding. I want, I want, I want… Let me just say, we are thankful for all of you, we are thankful for our miracle to get these out of her liver and I am doing my best to trust his path.

Some people have said, “I am so happy for your news, once they get these tumors, she will finally be cancer free”. Well, that is not true, she does have her tumors in her lungs, they just have not changed. Once I explain that to them they say, “I am sorry, you just seem so happy with the results from the last appointment. I assumed they were getting them all”. Cancer is a tricky thing. That is why when people are fighting it, they say it is a courageous battle.

“Courage doesn’t mean you don’t get afraid. Courage means you don’t let fear stop you” ~Bethany Hamilton

I have to admit at the last appointment, that early morning in the hotel room before we were to go to the appointment to get our news, I was brushing my teeth. I was looking in the mirror. I was thinking I don’t even know how much more I could pray, I had nothing left to say. I felt like a broken record. I felt anxiety because I prayed so confidently for this miracle that hadn’t even happened yet. I was afraid of not hearing what I believed I was going to hear. Like did I just set myself up for devastation? And then does that mean there is no God? It was a weird feeling, it made me nervous and then you know what. They told us our great news, yes we were happy but I could tell deep down I was in shock! I was like God you really heard me? Like there really is a God? Like did that just happen? I mean those prayers, they worked? It was the craziest feeling and just like that, we got our wonderful news and everyday life began again. Everyday hustle and bustle.

Life is a journey.

On another note we have been very busy. Very busy but in a positive way. Crystal’s sister Courtney is engaged and will be getting married in May of 2020. So lots of wedding planning going on which means lots of special moments coming up.

And then remember this journey of another Spirit Show in 2020. Crystal, had stated that her cancer was going no where and that she needed to dance. That she wanted to do another Spirit Show. She said, “Please Mom”. I guess that is what a mother will do, it’s a mother’s love. I must admit I wasn’t sure where I was going to get the strength or even find the passion again but for her, for my daughters, I will try anything. Well, God knows what he is doing because I am more inspired today than I ever thought. Crystal’s journey has brought new life not just to me but to 23 dancers in that room. And after dance last night, Crystal and I drove home together as we both said how blessed we felt, that God was with us, that everything seemed so good right now at this moment. Even though deep down Crystal is scared, Crystal wants it just to be over. But instead of talking about how scared she is or how worried I am, we changed the topic too…We sold 202 tickets in four hours last night to our 2020 Spirit Show. Which is shocking!!!! Seriously, we surprised ourselves. On that note, if you are interested in this Spirit Show, please message us, we will give you details. 

Again, Thank You for your love, support, prayers and positive feedback. I will stay in touch…

October 2019

He listened…

Written on Wednesday, October 9th @ 10:15am

I have thank God in advance for the Miracle he was going to give our family in October. Well, he has been listening & honestly I am at a loss for words. We are so happy!!!! Well everything is stable, the same!!!!! We are not going to worry about the lungs at this time, they have not changed for over a year. However, we are going after the tumors in the liver with an ablation procedure in November!!!! Which means if everything goes well there will be a check up in March 2020!!!! This also means no chemo!!!! God is good. 💜 This photo was taken right before we went into our appointment in the Gonda Building on the 10th floor. #godisgood #ourfighter #miraclesdohappen

September 2019

Next Step Mayo, October 8th-9th…

Written on Tuesday, September 24th @ 1:00pm

Good afternoon our beautiful prayer warriors. Thank you for your kind thoughts, positive energy and little messages the last few months. What a beautiful day in Iowa today. The sun is out, I can hear a breeze, I can hear lawn mowers and then I see my neighbor mowing away and I think goodness, his oldest is off to college and they only have one at home. It puts a smile to my face to see how life continues and how blessed I am that they are my neighbor. And now I wait for Crystal to get here and go on our afternoon walk.

Crystal did it! She got through her last round of chemo before her next visit to Mayo. Has it been easy? Well, she is extremely good at making it look easy. Since I have last updated you Crystal has done three more rounds of chemo, a total of 8 rounds of chemo just this year. It is getting tiring.

A family picture at the Celebration of Life for Bill. (Rod’s older Brother)

Crystal has learned with her last visit to Mayo that she is not a candidate for immunotherapy but we try to stay focused in the moment and not worry about what we can’t control. Just push forward with what we are doing.

Before starting this last round of chemo, Crystal had her typical Hall Perrine Visit with her doctor to make sure her blood levels were good before starting. I met Crystal there and arrived with a Starbucks Coffee for her, she had already finished her blood work by the time I had arrived. With a smile I hand her the coffee and sit right next to her in the waiting room. I am positive and full of energy, Crystal smiles and looks at me and whispers, “Mom, I don’t want to do this anymore”. My smile immediately went away, I was surprised by the remark, she has never said that. I looked at her and saw a tired little girl, and then they called “Crystal” it was time to go back to the room. I followed behind her as we walked, I stared at her feet and held back the tears as my stomach turned. What was I going to say to her that she hasn’t already heard?

We get into the room, we wait for the doctor, it is quiet, we sip our coffee and I quietly say, “You know honey, you are here today because you keep fighting. You have to keep fighting. We don’t have a choice.” Crystal says, “I know mom. I know. But I have done this for 6 years and I am tired.” I must admit, it sure is hard staying positive all the time.

Courtney is Getting Married! Congrats Courtney & Alec!

As our beautiful doctor enters the room with that contagious positive energy she has, it lifts you again. And again, you feel hopeful. And then Crystal asks question, a question that deep down we already know and think about but to hear the words come out of her mouth is hard. Crystal begins, “When I go back to Mayo in October, and lets say that new spot they found last time I was there, they now can see is a tumor? Or maybe they found another new spot? Or maybe the tumors I have, are now growing? Does that mean my chemo no longer works?” As I sit in the chair and watch the doctor listen to Crystal, my heart begins to hurt. And when the doctor answers her and explains that yes, it would mean it is no longer working. And then explains to Crystal we can try other types of chemo. As soon as the doctor is done and they finish up the conversation, the doctor turns to leave the room and I watch Crystals head drop down. I can’t seem to get that vision out of my head. And she looks at me and says, “Mom, I am tired”.

With all of that being said, Crystal began her round of chemo.

What keeps us positive, is living. Living life to the fullest. Embracing the moments you have together. Being thankful for what you have and how life can be so much worse. With that being said, we have had some exciting things happen the last couple of months. We took a family trip to Chicago at the end of August, in the beginning of September, Courtney got engaged in Colorado!!! And yes, like Gage, he asked for our blessing before he proposed. I am very excited for another beautiful blessing that will be happening in May of 2020. And of course, the CR Spirits started their training for the Spirit Show in February 2020. You know, I said yes to another Spirit Show for Crystal and deep down I wondered if I could find that desire again in me to pull it off. The creativity, choreography, organization and strength can be challenging on normal day and then to throw in a Show. But I truly believe that God has his hand in this. I have my quiet time with him every morning and I have put my journey in his hands. I have asked him consistently if I am doing the right thing and to give me a sign. Well, to have 23 women volunteering on this dance team, to make up Team #27 is definitely something higher than me. And crazy, I have found me again. I have found new energy, new love and peace that I never thought I would have. And that is because of Crystal’s Journey.

You know I met a beautiful woman in Ulta Beauty a couple of weeks ago, I firmly believe God wanted us to meet. Rod had recently lost his brother suddenly, and the worry of the last doctors appointment with Crystal had been bothering me. After talking briefly, I could feel a connection, as she says, we need to thank him daily and I jump right in and say I do. She says no, we need to thank him in advance for the miracle he is gong to give your daughter next month. That is how we are going to pray. And you know what, that is exactly how I have been praying. I am thanking him in advance. Please join me.

To the woman who has recently messaged me and asked how I found God and how come I believe. Oh honey, my mom has raised me to believe. She always would say, when you feel you have no one, when you feel alone, GOD is always there. That there will be a time in your life that you will need to know that, otherwise you will go the other way.  But honestly, with so much bad stuff in my life growing up, I didn’t believe it. I always felt it was my grandmother guiding me, watching over me. But when Crystal became ill, you feel so alone, lost, mad and scared. Then you start seeing strange things happen. Like something higher than you. Realizing that “believing” fills you with hope. You feel better, you feel like you make a difference, you feel at peace. And you understand that everything you have gone through has brought you where you are suppose to be. Everything. 

Stop. Sit still. Listen. Trust. And remember when it is quiet, that is also a gift from God.

July 2019

Feeling good.

Written on Tuesday, July 2nd @ 6:15pm

I am in the backseat of the car, as Gage is driving us home. We are smiling and laughing about our day.

A perfect time for me to do an update.

We started off early and got our results before heading home, all in one day. Are we exhausted? Yes, our emotions are all over the place, even though you do try to stay focused in the moment without worry. We want to say Thank You for all of the messages and prayers today.

Here is our news…

Nothing has grown. The lungs look the same, still two spots. The liver has something new but too small to decide what it is, so three spots. We are happy. She will continue with chemo for the next three months. The next scans will determine if she will be doing an ablation or something different. Before leaving Mayo we had to do more blood work for genetic testing, that will help determine if she would be a possible candidate for immunotherapy, if we end up not doing the ablation.

That is the blessing, Crystal has been able to stay ahead of her cancer for the new technology that is coming around. So very important to help with research. Research is important, it is a must.

As for the USA Women’s Soccer Team, Congratulations! We loved watching you today, it kept our minds busy.

I can also tell you before Crystals first early morning appointment, right after checking in at the desk, she came right over to me and began talking about the Spirit Show in 2020. Another reminder that this is what I’m suppose to be doing. It fills her mind full of ideas and thoughts vs thinking of her journey with cancer. Thank you God for the reminder to continue to apply the gift you gave me.

Crystal will begin chemo again on July 8th, so she gets to enjoy her 4th of July Holiday Weekend. YaY. Courtney & Cassidy, a time to embrace.

On another note the CR Spirits will be performing at the Great Jones County Fair in the Beer Tent around 6pm. Crystal will be on the 6th round of chemo at that time and actually during the difficult part of that round, she would love to hear you cheering her on while she is doing what she loves.

Happy 4th of July to Everyone.

June 2019

Almost three months later.

Written on Wednesday, June 19th at 9:00pm

It is a damp, cloudy night as I sit on my couch with the sliding class door open. I can hear the birds chirping and “Christopurr” is enjoying staring out the screen door wishing he could catch a bird or at least play with one. With a blanket and my laptop I begin to think about what we have done the last few months. I told myself I was going to wait with an update until we were closer to her next appointment. I almost caved in though last month when things were getting bumpy on chemo. However, her prayers were quickly answered and things turned around for her.

Crystal’s Birthday she is Beating the odds!

Tiffany Wrote on FB May 13th:

Prayers for this angel, please.

I hope you all had a beautiful Mother’s Day. Crystal just celebrated her 27th birthday on Saturday, such a blessing.

I’m reaching out today for some prayers for this warrior. She is struggling with this 4th round of chemo. And she comes over this afternoon for some mom comfort and sunshine with a possible walk…she says “Mom, I think I need some prayers”. We have a doctors appointment scheduled for tomorrow. She is suppose to be done with this round Wednesday.

She is determined to dance this evening…Such a fighter.

Tiffany Wrote on FB May 13th in the Evening:

Thank you for the prayers, the positive vibes. Crystal Marie Barnett came to dance. She has a blue Spirit Shirt on, it lights up her eyes. I ask her, “How are we feeling?” Crystal’s response, “Well I would say the prayers are working. I am not a 100% but I feel better and I feel I can keep going”. This morning that was not the case.

I know her chemo round is not done until Wednesday night. We meet with her doctors tomorrow afternoon and we will be able to check her blood work to make sure she is doing well in that area.

As for now, she is dancing.

Crystal at Uncommon James

Crystal Wrote on FB May 14th:

Thank you everyone for all the prayers yesterday!  It was a tough one… I haven’t been that sick in a long time. The prayers must have worked because today I am feeling much better. Thank you!  Also I had a wonderful birthday on Saturday. Thank you for everyone that reached out!

Well, Crystal has now done 5 rounds of chemo this year. Crystal looks great. However, I am sure you can imagine the feeling you get when you don’t feel well. She does go through that every month, somedays it is very hard to put a smile on and go forward. On those days she rests a little more. Last week was very difficult for her to walk. Her type of chemo can be pretty hard on her hands and feet. Again, on those days she tries hard to stay positive and she does her best to take it easy.

Again, Crystal does the same form of chemo she has always done. It is a pill form, she is lucky to be able to take it at home, it is 14 days on and 14 days off. It usually takes about 3 to 4 days after chemo before she begins to feel normal.

It is funny how many people that do follow her story and are shocked she is doing chemo. As they usually say, “I thought you got good news”, “I thought you guys were happy with the results and things are good”, “I didn’t realize she still has cancer?” I always feel so bad when you see their face, their embarrassment of not understanding. But honestly, I don’t know if you could understand it until you live it. Until you breathe it. Until you live every three months waiting for news that will could change your life. I mean somedays I don’t even get it. As a mother, somedays I am so tired and I eat everything in site. I can’t imagine what goes through Crystals mind and heart. We all handle it differently but together we are so much stronger. Together when one is weak, unsure, scared the other is ready to fight. I love that, I think that is what keeps us going.

Lately I have listen to a few stories of others fighting cancer or other medical issues including losing loved ones unexpectedly. It is heartbreaking, I am blessed that you reach out to me but I really don’t even know what to say. I hope you can feel me listening though. I think sharing your story is a start. I always say, if you share your story, you own your story. It is easier to embrace the journey you are on. I learned that from Oprah at a very young age. Trust your gut. Listen to your inner voice. Get those second opinions if you are not happy. And the most important thing, do something you love, Live Life.

Time to make some memories!

We have gotten so many messages over the years on trying this, smoking this, eating this, drinking this, reading this…And of course, all of it cures cancer. So trust me, you read it all, you actually get anxiety of thinking maybe I am doing it wrong, maybe we should be doing more. Why are the doctors not talking about this. Is it a government thing that they are keeping from us and then you feel depressed. It really makes you sad. But see long ago, I began to let that young 21 year old begin reading with me through all of the literature that others gave us. I let Crystal make the choices for her body, I taught her to listen to her gut, I explained to her, that is her power. And then as a mother I would not have guilt of not making her try everything that was being given to me, it took the pressure off of me. I am thankful that my daughter was old enough, I can’t imagine her being so young that the pressure would be completely on mom and dad. And as time went by I learned, we learned, that she has already beaten the odds and maybe, just maybe it is because she is doing exactly what she should be doing. She has stayed true to who she is, she continues to do what she loves and what she is passionate about. She continues to pray and listen to others. And we thank God everyday for what we have. As I said to Crystal that morning after watching Good Morning America, listening to Alex Trebek with Jeopardy, his interview was beautiful and reminded me of you Crystal. He is living life like you. And if he could bottle that up, maybe he would say, try Jeopardy…Like you could say, try Dance…What it boils down to is that you both are doing what you love. Maybe that is the key and with that key you inspire others.

Since April we have celebrated Courtney’s Birthday, Easter, Gage’s Birthday, a concert in Des Moines (CardiB which was horrible) but we made memories so I guess a win, the Tulip Festival in Pella which was crazy busy on that beautiful day, Crystal’s Birthday, Mother’s Day and…. Crystal, Gage, Rod and I went to Seattle. Why did we go to Seattle? To watch Crystal and Gage leave for an Alaskan Cruise. A very thoughtful gift that they received. Memories that they will cherish. And when that week was over, listening to their stories was like when the girls were little getting off that bus and hearing it all. Something I dearly enjoyed.

Happy Fathers Day Rodney.

And we hope everyone had a nice Father’s Day. Rod enjoyed his day. He got to enjoy it with his family of women. Lucky him. And now we get ready to celebrate the 4th of July hopefully with good news as well.

So with all of that you realize that life goes on, time just keeps moving, and Crystal says, “Mom, my cancer is not going anywhere, I need to do another Spirit Show! It helps keep me positive.” Here we go, God please guide us, the planning begins! The Spirit Show coming in February 2020! Cancer please stay at bay.

Crystal’s next appointment is July 2nd. I sure would love to see another miracle but if that is greedy, then could we please have no growth, no multiplying of the tumors and no spreading to other organs. Please. Amen.

As for our family, Courtney is very busy with her new home with Alec and she enjoys her job. She is still passionate about working out and loves her sisters so very much. Cassidy is also a very dedicated employee and loves her job, she at the moment has her summer off because of working in the school system but she is working lots of side jobs which keeps her busy. Cassidy would also do anything for her family. Actually she would help anyone, sometimes to a fault. The one thing I have learned is you can raise your children the same, love them the same, sacrifice everything for them and preach to them about life daily. You can have your expectations, you can dream what you want for them but ultimately it is their life. Someday God will want them back. You were lucky to raise them, to have them be a part of your journey but you as parent will also have to learn that your child/children, will all learn different, they will all make their own choices, their own mistakes and you have to love them through it even if we have to sit back and watch…Again, Life is a Journey. Always look for the good, it can always be worse.

April 2019

Keep swimming 6 years later.

Written on April 1st @ 3pm

We have arrived and it is snowing…

On our way home. Thank you for the prayers. We did get news that we can handle. Nothing has changed. Nothing has multiplied. Nothing has grown. So chemo seems to be doing its job. She will remain on chemo until the next appointment in July.

I must admit the three of us have not been feeling well since last night after arriving in Rochester. Just a nauseous feeling and we were questioning what it was and how the three of us had it at the same time. The minute her doctors appointment was over we were all strangely feeling better at the same time.

I guess stressed spelled backwards is desserts…So we will be having that tonight when we get home.

March 2019

6 years ago today…

Written on Wednesday, March 27th at 11:30am

6 years ago today, around this time in the morning, I was heading to my uncle Bret and aunt Michele’s home to tell the news that we just had just received. I knew that they would help me find a way to tell my mom. Rod, Crystal and I remember sitting at that kitchen table with Bret sitting across from us. I could barley talk. Rod and Crystal were silent.

2013 Florida vs 2019 Nashville

This week has been extremely hard for me. I think it has been 3 years since I have truly broken down. Sunday, we were on our way home from our Spring Break Vacation to Nashville and what do you do for 9 hours in the car, besides talking, listening to music and looking at the beautiful country side, I guess you also play on your phone, look through your photos and smile. On my TimeHop App it shows memories from this day in the past, I go take a peek and see that 6 years ago we were coming home from Florida on this day.

Gosh do I remember that trip, I remember how sick Crystal was, how we had no idea what was going on. I remember we didn’t do much on that trip because she had no energy. As I begin to start thinking of the last 6 years I realize that everything is coming down to the exact time and day of events.

Instead of coming home Sunday from Florida we were coming home from Nashville.

6 years ago on Monday Crystal was teaching dance in the 5:30-6:30pm time slot when she had an attack at the dance studio, it was scary. I remember standing behind a door in the dance studio calling our family doctor that night. I then start to think my goodness Crystal will be teaching dance again in the 5:30-6:30pm time slot and she will even have a few of the same students in the class. Then my mind races to think of what those students would remember from that night.

I realize quickly that Tuesday, was a scheduled MRI Scan 6 years ago and that this coming Tuesday was going to be a Doctors Appointment at Hall Perrine, blood work and a check up from her last round of chemo.

And then that Wednesday morning walking into our family doctors office, it was quiet and I was ready for answers, I will never forget it. Never.

Which now brings me to Mayo we were immediately going to be seen the following week at Mayo in Rochester, Monday April 1st, 2013 and crazy to think that 6 years later we will be going back to Mayo, Monday April 1st, 2019. The scare, the worry, will never be like the first time but it also never gets easier.

Alec thank you for planning a wonderful trip to Nashville with your family & our family.

Arriving home from Nashville we all had a wonderful time but for some reason Monday morning hit me hard and the tears would just not stop. I tried so hard to get it out of my system before seeing Crystal that evening at dance. I received a phone call from a friend of mine who could not get me out of her head. As I told Shannon, it has been a horrible day and don’t know why I keep thinking of her cancer. At that moment Crystal walks into the room and sees that I am a mess. She panicked, “Mom what is wrong?” I quickly get off the phone as I try to convince her that really it is nothing, I then thought to myself, tell her the truth. So I said, “Well honey, I seem to be struggling with your cancer today and I just don’t know why, I must be tired”. And she says, “Oh mom, my cancer? Here I thought someone just died. See mom no one died and I am good”. As I stared at her and smiled we both laughed. I told Crystal you are right. I need to embrace this moment. And then I ask Crystal, I know we have sad days but have you been like this where it is uncontrollable because I feel like I have not done that in so long. She explains mom, I am scared, I do worry, I do feel sick but I feel numb to it at the same time. And I told Crystal, yes numb to it, that is a perfect way to say it because that is how I normally feel.

So here we go again Monday, April 1st. I pray, I beg for another miracle for my daughter, for my family. I pray, I beg you all to join me in lifting my family up again at this difficult time.

And I try to remember…

So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.  Matthew 6:34 NLT

Happy “New” Birthday Crystal!

February 2019

1st Round Done…

Written on Thursday, February 21st @ 11:30am

The sun is out in Iowa. It is so bright it hurts your eyes but I wouldn’t change it for the world.

The last update I had told you how Crystal was excited that she would have dance and not another surgery but with this weather we have had, we really have not had dance. But I can tell you she has finished her 1st round of chemo.

How is Crystal doing? Well, she has had some rough days. She has been pretty nauseous but she is pushing though it. Her chemo is just like last time, 14 days on – 14 days off. So as of today, she has a break. She just needs a few more days and hopefully she will be feeling a little more like herself. We did meet with Dr. Wilbur at the Mercy Hall Perrine Cancer Center before she got started with chemo, it brought back memories of last time but Dr. Wilbur’s personality sure makes you smile.

Crystal tries her best to live life normal. She continues to workout, stay positive, and focus on upcoming events. She smiles through it all which makes everyone around her feel positive that she has this but somedays it is hard. Maybe you can say a little prayer for strength right now.

I can hear them laughing in this photo!

Since our last update we had a fundraiser for Crystal. Mr. B’s and my brother Casey, gave a night to Crystal. The money raised will be going to hotel expenses at our stays in Rochester. Here is a post that I had put on FB…

Thank you. Thank you. Thank you. What a fun night. Let’s see, I smiled, I laughed, I cried that makes for a full night.

I tried my hardest to chat with you all but it just seemed like more people kept coming in and I could never get ahead. I am sorry for all the people that drove there and couldn’t get in. I tried to go outside to see some of you and just know I appreciate you trying. 

As for bartending…Extremely hard job. And I know that no one would ever hire me to do that job again but I loved that I knew most of you around the bar which made it easier. And by the way my daughters did not help behind the bar😂 On another note, people please appreciate your bartenders💜
As for the fundraiser, we are Thankful, so very Thankful
💜 Originally we didn’t think Crystal would be able to attend but she didn’t have that surgery and chemo has not started so this was her second fundraiser that she could attend. And she said, “Mom, it’s so nice to see everyone. I can’t believe all the people”.

Valentine’s Gift from Dad & Mom…Another adventure coming soon!

I also got to witness a thankful huge smile on a couple of faces, their eyes said it all. Crystal and Gage received a beautiful thoughtful gift from her/our family doctor. I must say, it made me cry. Such a kind heart he has and a blessing to call him a dear friend. Thank you.

And of course, Valentine’s Day just happened. Gage sure loves to spoil his wife and I am so thankful that they have each other.

God has given my family many blessings but what is even more important is that he has helped me to see the blessings. I try so hard to focus on that everyday, which in return gives me Peace. It is not that this journey is easy for me, or for us. Somedays I want to cry and give up. Somedays I question God and the deck of cards he has handed me but that helps no one around me and it doesn’t make me feel better. So as they say, I try to be the person that I needed when I was younger.

A family photo before Amanda & Nathan say I do.

Crystal Kuehl Benefit #12

Come join us for a Drink!

Come see the “Guest” Bartenders!

Tiffany (Crystal’s Mom), Courtney (Crystal’s Sister), Cassidy (Crystal’s little Sister) & the one we are doing this all for…CRYSTAL!

When: Saturday, February 2nd, 2019

Time: 7:00pm

Where: Mr. B’s & Sam’s Pizza & Deli (629 2nd Avenue SW, Cedar Rapids)

DJ CJ will begin playing at 9:00pm! Side note, Crystal’s Uncle!