Exhausted…

Written Tuesday, December 20th @ 11pm

A long couple of days, and then a long drive home. As I drove, I watched her sleep for a bit, I just kept thinking why? Why her? Why us? And as she woke up, she stared out the window, she was quiet. I could tell her mind was racing, she was tired and yet scared. And then the half smile as she looks over at me. I can see in her eyes she is saying, mom everything is going to be okay. Right?

Before this appointment Crystal and I practiced different scenarios depending on what they would tell her. We were ready and then she says, “Mom I mean I have cancer, that is not the surprise. I have it, it is staying ahead of it. I am scared on how they are going to do that”.

What did we learn?

Well her new treatment doesn’t seem to be working, and of course it is causing a little grief with her heart, so we will be stopping that. 

Next, we learned that the four tumors in her lungs, and the three tumors in her liver, have grown.

Third, we have a new tumor by her kidney.

In January we will be trying a new treatment. Crystal is lucky to have fought this cancer for almost 10 years and will get to try LUTATHERA, it is a radioactive targeted therapy. We will learn more about that in the coming weeks.

As for now, I am thankful for my time with Crystal and Gage the last few days. Gage is uplifting and positive, we always seem to have laugh here and there when we are together. I am looking forward to the holidays with my family, as you never know what tomorrow will bring.

I need to rest, so I am positive because right now I am emotional but that might be because our furnace broke and I am freezing. Merry Christmas to me as I am getting a furnace for Christmas.

Thank you for your kindness, remember to embrace this holiday as it could always be your last. Merry Christmas. 

Hoping for a Christmas Miracle

Written on Saturday, December 17th @ 10:30pm

Late on a cold Saturday night in Iowa, I am wrapped in an electric blanket and feeling anxious about this trip to Mayo. Yes, it is that time again. Yes, we sure would take those prayers. Those positive vibes you have been giving our family for almost 10 years. Kind of crazy to think it has been that long. 

Monday, Crystal will be doing a scan that she did years ago and swore she would never do it again. Well here she is, doing it again. The DOTATE PET/CT scan. One thing Crystal has said is, “at least I know what it will be like”.

We know this new treatment does cause Crystal to have some heart issues. Only 3% would have this be an issue, and yes our fighter is one of them. Crystal has even joked I think I have seen the cardiologist more than my oncologist. Crystal’s heart is strong and when she is dancing, it keeps her heart rate up, that is a good thing. It is when she is resting that seems to be the issue. This new treatment is an extremely painful injection once a month, it has not caused her any complications other than her heart. She has been doing this new treatment for 6 months, and now for the big scan to see if it is working.

How is Crystal? She looks great, she is positive, and takes one day at a time. But she will admit she is very nervous about this trip as well. She is so nervous she is doing everything she can to stay busy. Her worry is the process of this DOTATE PET/CT scan, on top of learning if her cancer has grown or spread. I don’t know how she does it. She is a courageous fighter. I admire her strength. Her story, her journey has helped me in mine. Funny how that works.

On Tuesday afternoon we will learn of Crystal’s next steps and as much as I do believe that God is good, that he gives us what we can handle, I must say it is hard to think about it without shedding a tear.

God sure likes to keep us on our toes…

Written on Friday, September 30th

I believe I had mentioned that Crystal Marie Barnett was having some heart issues since the start of her new treatment.Well Wednesday was a little scary for her, so we canceled dance, and she is now wearing a heart  monitor to learn more.Today, she is smiling with Hazel and she thought mom, “maybe we need some more prayers”. Oh goodness I’m on it🙏🏻

Love your strength Crystal…

Written on Tuesday, September 20th

We are on our way home, with the reminder it can always be worse.It has been a long day, we left at 2:30am…so we are exhausted. Crystal’s tumors in her liver have remained the same, however a spot that they didn’t see last time, or that they could not tell if it was a tumor, they now can say that it is because of growth. So not necessarily new. Crystals tumors in her lungs have grown 2-3mm. And a couple of previous spots they can now confirm that they are tumors as well. Sad but again it could be worse. So our plan is to continue this treatment until December at her next three month appointment. She will then do her normal checkups, bloodwork, MRI, Cat Scan and then another Dotatate Scan which is like a combination of an MRI & Pet-Scan. This type of scan is very hard to do especially if you claustrophobic. We will then learn the next step in her journey.

It is that time again…

Written on Tuesday, September 20th

I can’t sleep and yet I am so tired. I have not done an update but it is only because we have been so very busy. Keeping busy helps you forget that you have cancer, especially when it is a fun busy. Her younger sister Cassidy got married in July, and now the CR Spirits are getting ready for the Last Show, so it has been just a little crazy. However, having to do an update is a must, as it keeps our prayer warriors with us. We leave very very early in the morning, we sure would appreciate those positive thoughts, those sweet words of encouragement and prayers, lots of prayers. As Crystal says to me, I really wish we didn’t have to go. I just don’t want to know, I think to myself what a beautiful courageous fighter she is. Please God gives us good news. Three months went by fast. She has handle this new treatment well. She has had three painful injections, one a month with a little scare with her heart but so far so good. Now it is time to learn the news.  Thank you all for your kindness.  Crystal Marie Barnett I enjoyed my night with you. Hazel made us smile and the students were excited for photos. What a good night, now the rest is in Gods hands. Good Night.

Tomorrow begins the new treatment…

Written Wednesday, June 29th

This last weekend was wonderful celebrating her little sisters Bachelorette Party, and on my TimeHop I see that 6 years ago we were doing the same thing only Crystal’s Bachelorette Party. Back then I would think I just want Crystal to experience at least one of her sisters getting married, and what a blessing that she will have been a part of both of them after next Friday. It’s a gift, but goodness don’t we always want more.A lot of you think Crystal has already started her treatment, she actually gets her first infusion tomorrow afternoon. She will do one infusion a month for three months, then it will be her appointment at Mayo to see if it is working.Crystal sure could use some prayers for strength. If we could fill her up with positivity and hopeful thoughts it sure would help with all the emotions.Crystal physically is doing well but mentally/emotionally she has struggled. As a mother trying to give her positive words, focus on a wedding and continuing to look for the good is exhausting. Life sure has its highs and lows. And as Crystal’s says to me, “Mom, thank you for always showing me to live, to plan, to trust. Because if you didn’t, I wouldn’t have the memories I have”.As they say, don’t wait for everything to be perfect to enjoy your life…We all know nothing is perfect.

We are home…

Written on Tuesday, June 14th @ 7pm

Not the news we wanted to hear but we have a plan.

Crystal at dinner last night said, I can’t even remember the last time I had an appointment and just got good news. I wonder what year that was. It’s been a long time.Since our last visit to Mayo two months ago, with the successful procedure that got the 4 tumors out of her liver, Crystal now appears to have 2 new little tumors back in her liver. And one of her lesions in her lungs has grown. We had to make a decision today about a treatment as we need to stay ahead of the cancer.Crystal, Dr. McWilliams and her team of doctors have decided to try hormone therapy. It is not as harsh as Chemotherapy, it is something she has never tried and they would like to see if it will work for her. She will be with Dr. Wilbur here in Cedar Rapids for this form of treatment. Dr. Wilbur has been her oncology doctor here at home when she has done chemo. The treatment will be either the Lanreotide or Sandostatin infusion. They will check her in three months and if it does not work, she maybe a candidate for Lutathera but we have to try this first.I will be honest, I am disappointed, exhausted and could scream but that helps no one. I was just saying to Crystal that after 9 years, I just feel like I am going through the motions when I am here. But the minute they call your name to come back you can’t help but feel your heart jumping out of your chest. Crystal says, me to mom. It is so exhausting just waiting, wondering, guessing and all the while keeping positive and remembering your faith. And then to think my beautiful daughter who is fighting to stay alive sure tears at the heart strings.I woke up this early morning at our hotel, thinking of a friend of mine whose young daughter suddenly passed away in a car accident. My heart hurt for them. I was thinking of life how beautiful and scary it is. The fear of not knowing, yet trusting. I thought God, this beautiful daughter has went home to be with you, yet their families life has changed drastically. They are good people, the parents are good people, they do good things, and their lives have stopped as everyone else’s continues to go on. I am sure they are just trying to catch their breath. My heart hurts for them. And then it was time for us to get ready to go to learn our news…And once we got the news of Crystal, I whispered to myself God give me strength, there is so much going on in my life right now, I don’t know how long I can keep a positive spin on things. And then immediately the thought of this family and their sudden loss of their daughter, made me realize, my daughter is still here. Stop complaining. We will learn more of Crystals next step in the next few days. So for now, we will continue to prepare for a beautiful wedding. One day at a time, just keep saying it to yourself.

Be still for a moment, the World can wait…

Written Sunday, June 12th @ 7pm

It has been a little crazy since the last time I updated you all. Crystal is doing well and we have been so busy that we have not even thought about this upcoming appointment. I think that is a good thing. 

Let’s see since the last time I updated, Crystal has recovered from her surgery, St. Patrick’s Day flew by, Hazel’s 1st Birthday happened, Easter was next, can’t forget Mother’s Day, and lots of birthday celebrations but the big one…Crystal turned 30!!! Yes our fighter turned 30, what a miracle. We have had many doctors tell us she may not see the age of 23 but here we are. And she celebrated in Las Vegas! With a performance to boot! As a neighbor said to me, “Celebrate Don’t Wait”. I must say that is so true and I have found that it is hard for many people to do. 

Right now we are blessed to help Cassidy and James plan their wedding day. July 8th, 2022 is almost here. With all of the planning, the wedding shower, parties you name it I reflect.

I remember in 2016 thanking God that our daughter Crystal had met someone who could make her heart feel complete. That she could experience that kind of love, have a wedding and feel the support that surrounded her. I felt so blessed that our family and friends could celebrate her during a very difficult but yet a happy time. But then as soon as that special day was over, I found myself asking God for another favor. Please keep her here for at least one of her sisters wedding so Crystal could feel the other side of it. Funny how we always want, want, want. 

I am reminded how precious time is, how blessed we are to have our own prayer warriors, and the 2016 prayers, well Crystal has gotten more than I had asked for. What a gift. What a gift for all of us. Now God, please make sure I don’t forget how lucky we are, you know we all do that sometimes down here.

As Crystal thought that she would not head to Mayo until after her sisters wedding, her doctors felt different. As sad as Crystal was about learning that there would have to be an appointment before the wedding, I immediately said to her, “Honey we know you have cancer, it is just learning the next step, it is okay to get the news. We will hear it, we will figure it out, we will embrace the moment, and we will enjoy a beautiful wedding in just a few weeks. One day at a time, just keep saying it”. With a smile, she says she is ready.

So tomorrow we head to Mayo for tests by Tuesday afternoon we will know if the cancer has spread, grown or remained the same. Please keep our family in your thoughts. We thank you in advance.

Recovery time then summertime…

Written Thursday, March 10th @ 1:20pm

Another set of prayers have been answered. God does have a plan for her, for us, for all of you. 

That wonderful gifted surgeon got all 4 tumors in her liver. All of them that he could see. What an incredible feeling that is. I can only imagine how she feels as a fighter to hear that news.

Crystal had to be at the hospital at 6:30am today. It has taken awhile for her to wake up after this procedure, so we just now got to see her at 1pm. She is resting but yet in pain.

Yes, we do have recovery time, as it will be painful but knowing she can enjoy her summer for a bit without the worry and feeling sick is a gift. A gift that a lot of us forget we have.

Hoping that we will get to go home tomorrow but for now I thank you all for your gift of time. The time you took to say a prayer, send a message or think a positive thought of our daughter, of our family. We are blessed.

I saw this today and enjoyed it, it made me think.

“If your path is difficult it is because your purpose is bigger than you thought.”

*Photo taken from our balcony before we walked over to the hospital. And then a pic of the three of us before they took her away.

Update💜

Written Wednesday, March 9th @ 3:30pm

First off great news…Everything looks the same. No changes, we are relieved. Crystal said her stress level was an 8 & is now a 4, when the nurse asked what her level was.

Second, she will have surgery to get the 4 tumors in her liver tomorrow at 6:30am! It is her same doctors and they feel they can get them all.

Granted there is one near the colon in her liver which makes things tricky but he will do his best. If everything goes smooth, she won’t need to come back to Mayo until June possibly July after her sister Cassidy’s wedding💜

God is good. He is listening. And God thank you for letting her have a summer to enjoy.
Now it’s time to find something to eat!

STAYIN’ Alive…

Written on Wednesday, March 9th @ 8:15am

It’s a chilly morning in Rochester, as I sit on the 3rd floor of the Gonda building at Mayo and watch the flurries out the large windows. It is quiet, Crystal has gone back to do her MRI, and I thought this would be a perfect time to do a little update.

Gage drove Crystal and I to Rochester yesterday as Crystal had some tests that needed to be done. And today started very early for her with more tests, doctor visits both at Mayo and at the hospital. It is a busy day and keeping the anxiety away can be challenging.

The plan is to possibly have a surgery Thursday to remove some or all of the tumors in her liver. Granted we will not be getting the tumors that are in the lungs at this time but we do have a plan for the liver.

So your beautiful prayers, positive thoughts we sure would take them. We would take them so we can stick to our plan with the surgery Thursday. The reason there would be no surgery is if the tumors are in spots they can’t get, or that they have multiplied or have spread. And with not taking chemo for the last 3 months you question what is going on in her body, as the last 10 rounds of chemo kept the tumors at bay even though she was sick on chemo.

On a happy note, I can tell you though her body was healthy enough to do the Spirit Show this last Saturday and it filled our hearts full to see the support and love from our Spirit Fans. I must say doing something you love sure keeps you smiling.

We will know by this evening our next step. ((hugs)) to all on this journey we call life.

Here are some posts Crystal had made on social media….

2-23-22 from Crystal

Training for this Spirit Show is about to come to an end. We have less than two weeks till showtime! 

1 year ago I started chemotherapy. And since then I have completed 10 full rounds. While on chemo I somehow managed to live my life as normal as possible. One of the main things I worked on was this next Spirit Show… dedicated around me & Stayin Alive. Honestly looking back I really don’t know how I did it. Chemotherapy is not only physically draining but also mentally. But I guess that is what makes this show on March 5th so powerful. I hope when you watch me dance on stage in just a few days you feel inspired. At the end of the day I think my job is to make others feel that way. Life can be taken away from us so quickly. Don’t spend another minute not doing something you love.

I do have a cancer update for all of you… that Tuesday after the show I will be heading up to the Mayo Clinic for the rest of that week. We are doing all my normal scans & will be discussing new treatment options. I have lived long enough to try new things… very blessed. I will also be having a surgery to remove the 4 tumors from my liver. Currently we are not going to focus on my lung tumors. One day at a time 

If you still need tickets to the Spirit Show please reach out. I want as many people possible watching this show. I want you to feel the energy from not only me but all those performers on stage. Spirit Show 2022 we are ready 

3-3–22 from Crystal

One week from today I will be in a hospital room. I will be hooked IVs, I will be wearing a hospital gown and I will be rating my pain on a scale from 1-10. But before I do any of that… it’s showtime! Saturday I will be hooked to the music, I will be wearing my performance uniform and I will be rating my life on how grateful I really am… because sometimes I forget. Don’t we all? Thank you to everyone who is coming out to support 

 March 5, 2022 tickets will be at the door.

Merry Christmas Everyone

Written Wednesday, December 22nd @ 12:30pm

I can’t believe Christmas is almost here! It is crazy how fast time goes by. Like you wish for things to hurry up and get here because you are excited for them, or you want to know the next step in life, whatever it may be for you.

I remember once being at an amusement park and watching a family in front of me as we waited in line to get on a ride. Their kids were dying to go on another ride and wouldn’t let up because they were so excited about it. I could tell the parents were exhausted and I thought gosh I see both sides. The sad thing is the kids couldn’t get excited about the ride they were about to go on because they were so focused on another one. So I said something to my girls quietly.

It is like we forget the moments in between that, those moments are also important and very meaningful but we get so focused on that one thing or that next thing.

Heck then the next thing, we are another year older, that alone makes you go, I wish I could go back, I would have a different attitude or I would change things in my life. Wouldn’t we all do that? Are we ever happy? I think we all do that until something wakes us up and reminds us.

So it’s been since August since you have heard from us and I know a few of you have been asking about our fighter lately. For almost 9 years I have been writing to you about our families journey, for almost 9 years this beautiful young 29 year old has been fighting and fighting hard. Thank you for taking the time to read the updates, send the messages, the prayers, the uplifting mail you have sent, and gifts, I can’t describe how much it has helped our journey. I am not sure where we would have been without the fundraisers. You have taught me the kindness of others is still out there. I don’t think I would have ever thought to do some of the things you have done for us. Thank You and I will pass it forward.

So in the last few months…Spirits has begun again, I will just add that has been difficult after taking a year and half off for every woman on that team. We have celebrated Halloween, and our little Hazel was a dinosaur. Cassidy got engaged! Yep, our last daughter will be getting married in 2022! Another wedding = More family memories. And Thanksgiving which was very meaningful to us as Crystal has been struggling with the last few rounds of chemo.

To correct a few rumors we have heard, more than likely just misunderstandings because you see a smile and a positive attitude from our family…

Crystal does have cancer. She is not in remission. Stage 4 cancer is usually NOT curable. She has 7 tumors that we can see. We hope for no more than those 7. We hope for no growth in those 7. We hope to take a break from Chemo so her body can rest. As Crystal says, “Mom, I am taking a break from Chemo no matter what. Because I don’t want to live this way anymore.” As hard as it is to hear that, to think about it, I also do believe in miracles, as we have received them. I do believe God listens, and I believe God has used Crystals journey to help others. I believe, I believe, I believe. And with that attitude it helps keep me positive.  I am also not saying I don’t have my days. I just don’t choose to stay in that frame of mind. And Crystals journey has helped me recognize my blessings, it has made me stronger as a woman/mother/coach, trust me, I have had to look for those blessings, to find that attitude.

Her next Mayo appointment is Tuesday, December 28th! We hope for a Christmas/New Years Miracle. And we would appreciated some beautiful prayers from our prayer warriors. 

Merry Christmas and I will chat with you all on the evening of the 28th.

Before bed tonight…

Written Sunday, August 22nd @ 9:00pm

It is a beautiful evening in Iowa, and as I get ready for bed, I wanted to take a moment and ask all of you for prayers for our Crystal. Prayers for good news tomorrow morning. Right before you go to sleep, when you shut your eyes, just ask God to take those tumors away. Please.

Yes, it is already time for another check up. Another time of worry, of wonder, of thinking what is next.

Crystal and Gage headed to Rochester early this morning. And yes, on a Sunday she began her tests. It is that way right now because of the pandemic, and Mayo getting caught up with all of their patients. The videos of Mayo being so dark and quiet was kind of scary/creepy I thought when she sent them to me but Crystal loved it. She said she got right in and out today. It was peaceful.

As for Crystal she is looking great, busy and happy. She spends a lot of time with her niece, Hazel. Plus the Spirits have started up again, getting ready for that Spirit Show, so that has taken her mind off of this appointment which has been wonderful. It was like for a brief moment she forgot her battle.

So tonight as a mom, my heart is racing and I ask God please hear me.

Crystal is ready for dance tonight!

Written Monday, August 23rd @ 10am

I wake up and I can hear rain, thunder, I think to myself how much we need it, we all need it. And then I immediately thought yep, I hear you God. You’ve got this.

Hazel brought smiles to my face this early morning and she kept Rod and I busy. I bet she was wondering what that stuff was falling from the sky today. And as she falls asleep, we receive the phone call we have been waiting for. I whisper, Hi Crystal and she says…

Mom, we got great news! The tumors in my lungs, two of them look like they have shrunk in size, and the ones in my liver, there is no change. So like nothing grew and nothing new! It is the best news we could hear except maybe that they are gone and I am cancer free, but I will take this news. All they said is they will talk more to my team on my next step and I will learn that at the end of the week. I just need to get my vaccine booster now since I am one that is more at risk.

This news will make their drive home more enjoyable, and she is ready for dance tonight.

I thank you all for the quick prayers, messages, texts and calls. I know it was last minute but it sure feels nice to hear from you. Thank you for taking the time.

And I appreciate you thinking we are so positive but I bet you are too, you just don’t think you are. You really have two options, negative or positive and I choose positive, especially if I have had sleep.

Here is a post from our fighter last week.

Mom, 9 years ago, we were at the Iowa State Fair performing our hearts out! I was on top of the world, I was doing what I love with a smile. This photo was taken before Stage 4 Cancer. Before the worries began, before the fight for my life. And to this day I am still doing that, fighting for my life. I thought I knew my life’s plan but God had other ideas.
This Spirit Show “STAYIN’ ALIVE” is exactly what you wanted to do in 2014 but the timing wasn’t right. And then the world is in a pandemic, and we are all trying to “Stay ALIVE”. It is the right time to showcase our hearts! Our Spirit Family! I’m ready mom, I’m ready to inspire. I thank God for this opportunity, and I thank you and dad for keeping this dream alive.
Here is a photo of me today, still smiling but doing my best to enjoy every moment in my life like it is my last. We should all live like that.
I did a video so people can hear me talk about the program! I hope you all enjoy it as hard as it is to make those things. And if you know someone who would like a free dance class, listen up. They start this week!
Monday 5:30-6pm ages 3-6
Monday 6:15-7:15pm ages 7-9
Tuesday 5:30-6:30pm ages 10-12
Tuesday 6:45-7:45pm ages 13-17
Courtney & Cassidy can’t wait to be on stage with you again❤️

Guess what tomorrow is?

Written on Monday, May 10th @ 4:40pm

Well first off I hope you all had a wonderful Mother’s Day. I hope you mothers felt loved. I hope your expectations of the day were meant. And to the mothers who are new, to the great grandmothers who can’t believe how fast life has gone by, the fathers who play the roll of a mother and the mothers that are smiling down at their children from heaven…You are appreciated, you are thought of. As challenging as it is to be a mother, a good mother, it is also extremely exhausting. ((Hugs)) 

So tomorrow there is a beautiful fighter who turns 29. Yes, 29. And they all said she wouldn’t be here at 23. What a blessing it is, what a miracle she is. Thank You God for answering our prayers. Happy 29th Birthday Crystal and I can’t wait to celebrate YOU tomorrow night, no matter what.

And so also tomorrow, Crystal is at Mayo. Yes, her 3 month check up is already here, and it is on her birthday. She will have a day of tests, a day of scans, a visit from her team of doctors and she will then learn the news of her next step.

Crystal has done three rounds of chemo, you ask how she is? Well again, she looks great, her attitude is so up lifting. When she feels ill, she listens to her body and fakes it. She believes in positivity, she believes in goals, she believes that no one can have it all and she believes that Hazel is here to change our lives.

I would love for another miracle. I would love that the 7 tumors would just be gone. I would love that Crystal could hear the words “cancer free”. I would give anything to let her just enjoy life with no worries, just one more time. But realistically I know what we are up against too. So for now, please let there be no change. Just 7 tumors that have remained the same, or even shrunk a little bit. If we could hear those words tomorrow, I would again feel like our prayers are being answered. God, I am so tired, I am so tired please hear our prayers.

I can’t believe it has been three months since I last updated you. And in three months we sure have lived. One month ago today, I lost my father and 5 days after that, I became a grandma. Needless to say my emotions are all over the place. I maybe lost right now but I know God will see me through it and will put the right people in my life to help me.

To the woman that I bumped into recently that asked about our family. You spoke such kind words of our families strength, the inspiration you get from our family from this journal and how you can feel what I am saying, that sometimes you think I am speaking to you through my writing. Thank You for taking the time to say that, isn’t it funny how God works. I am no writer but I do write truthfully on how I feel. I am sure you were surprised to see me begin to cry. I think God knew I needed to hear that even if it was from a stranger but yet maybe you needed to see that we are just a family that works on being a family every day. It doesn’t just happen, you have to work on it and it is exhausting and rewarding at the same time. I thank you for having the courage to approach me and I hope you could feel how much I needed it too.

As for tomorrow…We sure will take those birthday prayers! We sure will take those positive vibes. We sure will take those beautiful messages, kind words and energy to help our family through yet another exhausting journey.

Happy Birthday Crystal!

Writing on Tuesday, May 11th @ 4:30pm

It is a beautiful day in Iowa, and Crystal stated it was a beautiful day in Minnesota too. Now for the news…

I am sitting in my bedroom, the sun is shining brightly into my window, I keep looking at the clock. My heart seems like it has been racing all day. I know it is busy today at Mayo so the appointment could be running behind. I am trying to talk to God, but then yet I get distracted and think, thank goodness for our prayer warriors. They’ve got my back, right?

And then my phone rings, actually sooner than I thought it should have. It is Gage’s phone number? Why is it from his phone? Oh my gosh, it is FaceTime to boot. Is there something wrong? Do I need to hear or see something? My heart races faster, and I answer it.

And there they are. Crystal and Gage, showing me the beautiful tulips, Crystals favorite flower. I stated the appointment seemed to go fast…And with a smile on her face, she says it did. And mom, nothing has changed. The chemo seems to be working. And mom, one of my tumors in my lungs got a little smaller. So for my next step I will do another three months of chemo.

Needless to say the three of are smiling. We are thankful. Blessed. And God, thank you for answering the prayers but now I sure hope you hear the thankful prayers too.

Crystal was off to call her dad, her sisters, and her grandmother. And tonight, we will celebrate. 

On another note, Gage was so sweet. As she went into her MRI that seemed to take longer than usual, Gage got one of her gifts ready for her to open for when she came back out of the room. It was a thoughtful surprise. I could tell when she called me earlier today, that no matter the news, she is making the most of her day, and that Gage is making her feel so special. As a mother, that thoughtful surprise makes me cry happy tears. 

Words from our fighter…

Written on Wednesday, February 17th @ 3:45pm

My courageous fighter, my inspiration, my daughter…I am ready to dance and fight this with you!

Crystal wrote: I have taken this last week to really process the information I just received at the Mayo Clinic. For those of you that don’t know… my cancer has grown and I now have 4 tumors in my liver & 3 tumors in my lungs. I will be starting chemotherapy again in the next week or two. I have read every single message & I am so blessed that I have all of you in my life. So THANK YOU for all your uplifting messages. Every morning I write what I am grateful for… and every morning I always put my family, friends, my prayer warriors and my healthy body… as well as many other things. My body might be struggling with cancer currently but it doesn’t mean it is not healthy. I am still able to do all the things I want and need to do in life. And for that I am grateful… and always will be. So for my next exciting adventure I think it is time to start putting together this next Spirit Show… to not only inspire me, but to also inspire those watching! Everyone has a journey & it’s our job as humans to spread positivity & be kind to everyone around you. Please remember that… Again thank you & let’s do this thing! 💜💪🏼

Never give up, Never give in.

Written on Wednesday, February 10th @ 6:45pm

Thank you all for your prayers, your messages and positive vibes. It has taken me over two hours to come up with the words of wisdom for this post. I guess the words I choose will be, “It can always be worse”.

Crystal & Gage arrived at Mayo early this morning. When I received my text that they had arrived and that the roads were good, I thought, well one prayer has already been answered.

She met with her team of doctors today at 3:05pm to go over her tests…My heart began to race about 3:45pm, knowing my call would be coming soon. Then my phone rang at 4:18pm. I could hear it in her calm voice. Well mom, it is not the news we wanted to hear.

The positives, her lungs look good. Where they operated on in October looks great. Even her blood work is looking good. But her liver. The few spots in her liver that they have been watching have decided to grow. 4 tumors to be exact. Chemo will begin immediately. They want to try to keep the cancer at bay and not to continue to have them spread and grow. These 4 tumors are in spots of the liver that they could reach surgically as time comes but first we have to slow it down, not let them spread. They are still waiting for one more scan to come back but for now we have a plan.

Cancer is a Courageous Battle. A constant fight emotionally and physically.

As I ask her, have you been crying, you sound muffled? She said, it is my mask mom. And mom, there is NO “Weak Bitch Moments” and we laugh. This is a quote from Monday’s The Bachelor Show. I must say as much as the show has been hard for me to watch (I am not a fan), that did make us laugh.

She will be meeting with her oncology doctor here in Cedar Rapids already tomorrow. So I guess now we begin the next step.

But for now, she wants to drive home, take it all in and call me again when she gets home so she asks mom, will you call the family? Of course.

Scratch That…Scratch That!!!!

At 6:10pm…About to post the update, Crystal & Gage call. Her doctor called to let her know that the last scan did finally come back as they are driving home. And she learns that we again, have spots in her lungs. They maybe small but they can see that it is the cancer. Chemo is her option. We need to get ahead of it.

Crystal is sad, looking for guidance and positivity. Covid Sucks! Telling the news over the phone, Sucks! Trying to find God when you are scared and mad, Sucks! Mom, I will call dad and my sisters later after I get home. For now, I’m trying to be positive.

I must say I am pretty quiet.

So for now….Let us just take a moment as a family and take in this news that is extremely exhausting. Crystal Marie Barnett, Courtney Kiburz, Cassidy Kuehl, Gage Barnett, Alec Kiburz, Rod and I thank you for this time.

Today is World Cancer Day!

Written on Thursday, February 4th 2021 @ 5:00pm

What a perfect day for an update, on World Cancer Day. It is a cold, snowy, windy, actually an extremely windy day here in Iowa. Sitting in the kitchen, drinking some tea, trying to look out the window but the windows are covered with snow, and I think to myself, I really don’t want to shovel again.

I have enjoyed listening to some music from the past, Neil Diamond & Eddie Money are my choices for today. Music is a beautiful thing, it literally can take you back to a time in your life, and just for a moment take you away from the present. Not saying all memories are wonderful but it reminds you what you have lived through as well. Now let’s see, where to begin?

Can you believe that Halloween, Thanksgiving, Christmas & New Years have flown by since my last update. Crazy to think how time just keeps moving forward and as I get older, it seems to be going faster. I hope your holidays were wonderful. I’m sure they were different with the pandemic but I hope you found a way to make them memorable, and found the good in them being a little different. I know we did. Matter of fact, I have never heard Crystal laugh, giggle and enjoy Christmas as much as she did this year. A memory I know our family will never forget.

How is Crystal, our fighter doing? I think she is emotionally and physically doing really well. Crystal also has been doing a lot of her own reading on the vaccine. She has her doctor here, her team of doctors in Rochester, her family, her friends and takes everyones thoughts into consideration and then does her own investigating. I am proud of her. I trust her. I trust our path. Will she get the shot? She will learn more next week on that, when she is in Rochester. However, Crystal plans to get the shot when she can and if they say she can.

Crystal’s next appointment is Wednesday, February 10th. Is she scared? Well, sure she wants to hear good news but is fearful that she will not. She also knows, whatever the news she will have to accept and move forward. Please send positive vibes and prayers that day…We live by them. Thank You in advance.

Is Crystal dancing? Well, no. We are doing are best to stay safe and we are hoping that in April we are back to dancing. I can tell you that this is the longest I have ever gone since 1993 without dancing and I even had two children in that time frame. It is amazing what you take for granted. You think that you are not going to take things for granted anymore since you have a daughter fighting Stage 4 Cancer but you do. I guess just like when you pray to God and say you will never ask for anything else if you can just have this, and funny, it is like I am always asking for just one more thing with him.

I can tell you Crystal has been very excited about becoming and auntie. Her free time is about planning a drive-by baby shower, meeting Hazel Marie in April, and taking one day at a time. However, she is a little obsessed with Animal Crossing.  

As some of you have struggled this year with all of the changes in our world, the worry of what is next and the fear of being judged on something you think or say, you are not alone. And honestly all we can do is keep our faith and trust our path. And that doesn’t come easy, it is a daily morning task that Crystal & I do. Our morning chats help us remember what is important.

Home.

Written on Friday, October 17th @ 3:40pm

It was a very windy windy drive home but we made it. My reason for making another update was to let our prayer warriors know that Justin has passed. We do thank you for all of the prayers for him and his family.

You know, Thursday night when we went back to our hotel rooms to do our 9:00pm Prayers for Justin, I then began to work on the update for Crystal, and at that moment Crystal had let me know that Justin had gone into Hospice.

In January 2020 Justin, Tasia, Gage & Crystal went to a Hockey Game, something Justin was excited to do.

My first thought was God is answering the prayers and going to give him peace and rest. But then I immediately thought, gosh maybe that is not right. Like, we want him to stay here. I don’t understand but instead I just stayed quiet, as Crystal states it is not fair, I just need him to be here when I get out of surgery. 2020 sucks. Cancer Sucks.

At that moment I called my mom, and the first thing she says to me is, the prayers are working, he is finding rest. He is not afraid anymore. Tiffany, everyone is praying and at that moment he is not afraid. It is God. And hearing that from my mom, gave me peace of mind. It is so hard to trust.

So I finish my update, I talk to God. I sleep in this beautiful hotel and think what do I have to complain about.

Now after her surgery, knowing she is doing surprisingly well, the first thing I mentioned to Crystal when I got to FaceTime her was, my experience of feeling her tell me she was okay. I told her that it was scary and neat at the same time but I also immediately was so taken back that I put my books away and did my best to think of something else. I told her I actually felt guilty afterwards because maybe I shouldn’t of been afraid. Maybe I would have learned more about myself, or this journey if I would have let it play out.

She says I don’t know mom, I was thinking of you but I didn’t feel anything. I actually had Justin on my mind a lot. And mom, there is something I want to tell you, but I don’t want you to be sad. The minute I could ask Gage how Justin was doing, Gage said he had passed. And as sad as it is mom, I think he was with me. I have never felt this good after a surgery. Never. I really think he was with me…I believe it.

Well, I didn’t want to share any of this until his update became public. And once it did I received a few messages asking if this is the Justin we were praying for. So I then knew, I needed to update Crystal’s Story again…

I always say, We all have a story. I always say, Life is a Journey. But even more importantly, life can be so scary unless you have faith. And even that takes work.

Thank you all…For being kind. Thank you for making a difference in my life, our lives. 

Right after surgery! Look at that smile!

Written on Saturday, October 17th @ 9:45am

My fighter! This is her right after surgery. Holding her new lung pillow! Gage Barnett it is a beautiful photo, you captured such a thankful smile. Crystal Marie Barnett is doing well and will be going home soon. Our prayers have been answered. I feel so blessed and ready to start a new chapter. It truly is remarkable how well she is doing. #godislistening #prayers #lungablation #pancreaticcancer #neuroendocrinecancer #7yearsurvivor

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I got my text!

Written on Friday, October 16th @ 4:30pm

A pic before surgery!

Gage said she is in her room! I’m so relieved💜 So far so good! Thank you for the beautiful support today for Crystal Marie Barnett & our family💜 We will be staying another night before heading home💜 Courtney, Cassidy & Alec we can breathe….The photo of Gage & Crystal was before surgery & then the text I got from Gage💜

Waiting for this text!

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I feel her…

Written on Friday, October 16th @ 1:45pm

Gage what a beautiful photo you took, thank you.

Gage is at the hospital and has been sending cute photos of them before surgery this morning. Surgery was delayed. It was to be at 9am and was switched to 11am.

Surgery tomorrow…

Written on Thursday, October 15th @ 9:30pm

FaceTime with her Dad…

Crystal “didn’t have surgery” but yet she did, just nothing got accomplished. She was tired, her body was sore, her neck ached, she was coughing up blood, she couldn’t talk, and it took over a week to get back to normal.

She has got this but then…

Written on Thursday, October 1st, 2020 @ 12:30pm

Cold and dark in Rochester as Crystal & Gage run across the street from their hotel to the hospital this early morning.

Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true~ L Frank Baum
Crystal says the night before surgery, “Mom, we saw two rainbows today!” I am thinking it must be a good sign, thank you Gage for capturing her with it.

She can feel the prayers, she is ready. Crystal is prepped, IV in and ready to go to sleep. As the procedure begins they realize that her trachea is way too small. They tried three different tubes, which then bleeding began and then they had to stop surgery. It will be reschedule in two weeks.

She is awake, her throat is very sore, she will be checked over and then they will head home.

This means more hotel stays, another uncomfortable Covid Test, another prep, another set of worries emotionally and physically. It is frustrating but there is a reason. There is a reason it didn’t happen the way it was planned.

A positive note, she will see her family again without having to recover from a surgery first.

Thank You for your prayers, your support and your uplifting messages. They help. 

The plan remains.

Written on Wednesday, September 30th, 2020 @ 1:00pm

Such a windy day, so windy I wish it would blow that cancer away. We hoped it would be a different plan with no surgery but ultimately we know that she has tumors in her lungs. We know that Crystal has Stage 4 Cancer. We’ve been lucky the last 7 years with all of the prayers we’ve received, to always stay ahead of it, and so that is what we do again. She fights to stay ahead of it.

A snapchat pic from our fighter!

Crystal will be having surgery/lung ablation bright an early tomorrow morning. There is a tumor in her right lung that has grown, so it is best to get it out of there and not wait. There are a couple of more tumors in her lungs but they are too small to get at this time.

Some good news, her blood work looked great, there was no tumors in her liver, and nothing new popped up and it looks like only one has grown! We will take that news.

The next positive thing is, Crystal will be one of the first patients to use the new state of the art Lung Ablation Suite and Floor. And everyone gets a private room after surgery. That sure makes you feel good when you can’t have any visitors but one.

Crystal is not alone in Rochester, she is with her husband. Gage, is very good and respectful at keeping me informed. Crystal misses her team that is always with her but she knows we are with her in Spirit.

We have raised a very considerate daughter. Crystal worries about her husband and her mom with the choice of only being able to have one person with her. She worries about our feelings, our thoughts, our opinions, and then worries about her choices, her future, her cancer. With that being said, the three of us spoke on the phone and decided that I would stay back in Iowa and wait. My plan was to go, stay at the hotel, not really see her but through a window and just knowing that I was across the street would make her feel better. But after speaking with them, I feel this will help Crystal put herself first. It will help her just worry about her, not unconsciously worry about me being across the street not being able to see her. Thank God for technology, we will just FaceTime.

Am I sad? Yes. I hate Cancer, I hate Covid! Please help me continue to have Faith.

On another note, something that made me tear up & smile. Crystal calls me with her news and then it is my turn to make the calls to the family. I always start with her father, then her sisters and then my mom!

As Crystal says, “Hey mom, when you call my sisters will tell them all the good stuff. Like let them know I am okay. I don’t want Cassidy worrying. I want her to take care of herself. We need that little baby in the family. So don’t let her worry”. 

God has a plan.

112 Days Later…

Written on Monday, September 28th, 2020 @ 2:30pm

Happy Father’s Day!

A chilly day in Iowa, I am loving my sweatshirt with a pair of shorts, my hair in a pony and the fireplace. Even the trees are changing, I guess it shows life keeps moving on.

112 days since I last updated you on our fighter. 112 days of life that we won’t get back. 112 days of our world that is continuing to change as we struggle to find the good in each day, to find peace and to learn to have faith. So much has happened in the last 112 days. Did you make the most of it? I did.

Year End Party for the Spirit Family…Until next time.

Yes, this virus has stopped the world but that doesn’t mean you stop living. That also doesn’t mean you judge others on their choices in life. A very simple rule of thumb, “if you have nothing nice to say, then say nothing”. And remember, there is always someone that doesn’t like you…the crazy thing is, a lot of times it is simply because of what someone has said about you. With that being said, that is why it is so important that you do you. That you believe in you.

4th of July Hike!

Crystal is doing well. Yes, she has the fight of her life. Yes, she worries about the “what if’s”. Yes, she has the same issues as others, with life, being a woman, being married. And then the Derecho hits Iowa, a hurricane and now she worries about her roof, water in her home, the insurance and let us not forget the worry of her sisters home, her families and the guilt of wanting to help everyone.

2020 has been pretty rough for so many people, that you feel guilty asking for prayers, positive vibes, or help. People have changed because of Covid, with losing loved ones, jobs, their security in life, well what they know of it. Then throw on a Storm, a hurricane and the fear of money, insurance, the clean up after a disaster, the loss of personal things. Even having electricity, or having phone access makes you realize what you take for granted.

Courtney’s Wedding Shower!

As Crystal recently said to me, “Mom, I have struggled the last four months. When I see people that I follow fighting cancer and not making it as far as I have. The people that don’t have the love and support that I have. The fact that the Storm could have been so much worse for my home or for our family. I look at the frustrations that this virus has caused in my relationship, but I would rather have someone that takes it seriously than not. I find myself feeling guilty that I am struggling mentally when I know it could be so much worse. I guess I have Survivors Guilt”.

And as I respond, “That it is a normal feeling, so even if you were not fighting cancer, you would still have those feelings. It is okay, too not be okay and the fact that you see it is a positive thing. It will pass Crystal as long as you make your own choices, with your own beliefs. As long as you listen to that inner voice, it will pass in time”.

Bachelorette Party!

So here we are, tomorrow, Tuesday morning Crystal will be heading out very early for Rochester. She will have tests all day, including a Covid test. At this time she is scheduled to meet with the surgeons on Wednesday morning and then with surgery to follow on Thursday. At this time, I am not going because of Covid. As a mother, a caretaker it is heartbreaking and shocking but it is in Gods hands. One thing I have learned through these last 7 years is that having an advocate at the hospital with a loved one is extremely important. Yes, there are wonderful nurses and Yes, there are some that are not so wonderful. Having an advocate at your side, takes less work away from the nurse and makes others accountable and let’s not forget what it does emotionally for the one trying to get better. A healthy positive attitude surrounded by a loved one makes a world of difference.

1990 vs 2020

But the one thing I can say is in the last 112 days Crystal, you did live life. You did what you needed to do. And you did it without judging, with being safe, having a positive attitude and more importantly with having faith.

Crystal you celebrated, you embraced the:

*News you got 112 days ago!

*Father’s Day.

*Spirits Professional Dance Teams Year End Party & decided to do another Spirit Show!

*4th of July.

*Your sister, Courtney’s Wedding Shower.

*Your sisters Bachelorette Party.

*Your parents 30th Wedding Anniversary.

*Courtney & Alec’s Wedding.

*A Storm!

*Your dad’s 50th Birthday.

*And sending your dad off on a positive note with his new Job.

Courtney’s Wedding Day!

And then you were blessed to learn the news of becoming an Auntie in April of 2021! Yes, a new life for our family, a new outlook. God has a plan. And Crystal you are here to change the world, to make a difference.

Yes, I am going to be a grandma! Rod and I are excited, shocked, but very excited. Our youngest daughter Cassidy and her significant other, James are expecting. Needless to say, Crystal is over the moon & Courtney well, let’s just say we went shopping and looked at children’s clothes for the longest time. We are all ready to embrace a positive journey with this new little arrival coming in 2021.

Happy 50th Dad!

Thank you again for your love and support. I am sorry I have not been the best in updating more frequently but it has been a challenging year for all of us. I hope this update makes you smile, I hope it inspires what you needed to hear today.