June 2016

We are blessed…

Written Thursday, June 23rd @ 10:30pm

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

Crystal's Wedding Shower...

Crystal’s Wedding Shower…

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

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

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

Yummy food at the Shower...Coe College Clark Alumni House

Yummy food at the Shower…Coe College Clark Alumni House

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

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

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

Crystal getting ready for her guests to arrive...

Crystal getting ready for her guests to arrive…

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

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

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

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

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

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

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

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

Wedding Shower Time…

Written Saturday, June 11th @ 3:30pm

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

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

Our own Private Showing. We are blessed.

Our own Private Showing. We are blessed.

So here I go with answers to your questions…

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

Kennedy Grad. Cousins at their finest!

Kennedy Grad. Cousins at their finest!

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

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

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

Wedding Party Dress Fitting Time....

Wedding Party Dress Fitting Time….

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

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

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

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

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

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

May 2016

Crystal is 24!

Written Thursday, May 12th @ 11:00am

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

Crystal with her sisters on her 24th Birthday at dance practice!

Crystal with her sisters on her 24th Birthday at dance practice!

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

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

Didn't get a photo of everyone but here is a few family peeps!

Didn’t get a photo of everyone but here is a few family peeps!

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

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

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

Vegas 2013, Crystal turns 21. Thank you Harrah's for making Crystal feel special. This photo was 4 weeks after a major surgery! Removal of two tumors in her pancreas, her gall bladder, her spleen & many tumors in her liver...not including radiation...WoW looking back.

Vegas 2013, Crystal turns 21. Thank you Harrah’s for making Crystal feel special. This photo was 4 weeks after a major surgery! Removal of two tumors in her pancreas, her gall bladder, her spleen & many tumors in her liver…not including radiation…WoW looking back.

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

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

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

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

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

Live for today…

April 2016

Crystal won this battle!

Written Wednesday, April 27th @ 6:40pm

Crystal hugs her dad & sisters before her trip to Mayo...

Crystal hugs her dad & sisters before her trip to Mayo…

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

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

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

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

Dinner at Hard Rock & we get to see Prince's Coat...Very Touching...

Dinner at Hard Rock & we get to see Prince’s Coat…Very Touching…

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

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

Crystal ready to Fight at St. Mary's!

Crystal ready to Fight at St. Mary’s!

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

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

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

We are going to smile through this because smiles are contagious!

We are going to smile through this because smiles are contagious!

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

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

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

Happy Golden Birthday Gage!

Happy Golden Birthday Gage!

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

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

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

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

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

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

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

Change of Plans…

Written Wednesday, April 20th @ 6:00pm

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

Such a true picture...

Such a true picture…

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

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

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

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

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

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

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

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

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

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

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

Our next step…

Written Monday, April 18th @ 11:00am

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

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

Courtney's 21st Birthday. Crystal has come to the winery a few times with her friends but has never had a drink because she has always been on Chemo. Not this time!

Courtney’s 21st Birthday. Crystal has come to the winery a few times with her friends but has never had a drink because she has always been on Chemo. Not this time!

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

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

We sure do love SnapChat! Celebrating Sibling Day!

We sure do love SnapChat! Celebrating Sibling Day!

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

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

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

New Home Owners...Look at those smiles!

New Home Owners…Look at those smiles!

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

The CR Spirits Professional Dance Team...Something I love and have learned that Crystal loves it just as much.

The CR Spirits Professional Dance Team…Something I love and have learned that Crystal loves it just as much.

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

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

March 2016

Update…

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

As they sit in the doctors office. So quiet. My heart is racing...

As they sit in the doctors office. So quiet. My heart is racing…

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

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

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

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

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

What an emotional week...

What an emotional week…

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

Crystal & Cassidy share a hug...

Crystal & Cassidy share a hug…

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

 

 

Positive thoughts please…

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

Courtney stopped into the Studio tonight to eat dinner with Crystal since she can't go with her tomorrow.

Courtney stopped into the Studio tonight to eat dinner with Crystal since she can’t go with her tomorrow.

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

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

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

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

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

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

A family photo at the Memphis Zoo...

A family photo at the Memphis Zoo…

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

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

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

Next round of chemo has begun…

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

Crystal on World Cancer Day!

Crystal on World Cancer Day!

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

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

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

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

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

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

A few photos from the birthday!

A few photos from the birthday!

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

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

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

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

Until next time….

January 2016

Now we know why my mother works where she does…

Written on Saturday, January 30th @ 11:45am

A gift from grandma...Each figurine represents the girls.

A gift from grandma…Each figurine represents the girls.

I am sitting at my kitchen table with my computer, my cup of coffee and Calvin right beside me. I’ve been staring out the sliding glass door for the last 30 minutes. The sun is so bright it hurts my eyes when it reflects off the snow on the deck. And I am sure it doesn’t help that I have been crying, my eyes are red, my head hurts and that my blood pressure is high.

It all began on Thursday evening approximately 6:30pm. Crystal was a work and had just had a former Spirit Family stop in with roses for her and I, such a beautiful surprise. It was a happy chat & then Crystal received a phone call from CVS Specialty Pharmacy.

See on Monday, Crystal realized that she had not heard from CVS Pharmacy and was suppose to. So at 9:00am, Crystal and I starting in with the phone calls. Everything seemed to be just fine and her Chemo would be delivered Friday morning.

Remember it’s the new year so new insurance numbers.

Then Thursday night…nothing like waiting to the last minute, she receives a phone call from CVS and their is a problem with her Blue Cross Blue Shield number. Her Chemo will not be delivered. Crystal was switched to a few different people from CVS trying to figure the problem out. It was extremely upsetting. And keep in mind she has to start her next round by Monday morning. Crystal was the one who took the initiative to make sure everything was in order early now we have one day to figure it out and have it delivered.

Reminder in October we had a very similar issue with CVS but had nothing to do with insurance.

After making a phone call to BCBS we have learned that Crystal does need to have her Medicare as primary and her BCBS as a secondary. This Medicare is new to us and seems to be more work and headache than we would every thought. The problem is this takes time to get this switched. There is a process but again we have one day to do it all because in my eyes CVS should of said something by Tuesday NOT Thursday!

AS for medicare…So far it is a joke to me. We are told that it is good for her to have it along with BCBS. And not to get rid of it…Okay, but so far it looks like it is going to be costing us more financially and it has given me three days of hell.

Crystal with tears and all says, “Mom, I am not calling my doctors. If I can’t get the medicine than they can tell my doctors why. I will not call them. Like I told CVS mom, I need this Chemo, it is keeping me alive.”

It’s been four phone call with BCBS. I know they close at 5pm. It is 4:50pm, I am sitting and my leg will not stop shaking. The phone is in my hand. Do I call BCBS? If I don’t, I won’t be able to talk to them until Monday morning after 8am. I really need to know what is going on. Rod is saying call them. My heart is racing and then it rings…its BCBS. They have it all figured out. CVS will be calling Crystal and the Chemo will be delivered Saturday by 12pm. I immediately call my daughter, we are relieved.

Oh but it’s not over…

Crystal does get that phone call from CVS and Crystal needs to pay $3000.00 to get that Chemo by Saturday at 12pm.

Crystal calls me, she is trying to have a night out with her girlfriends but spent another 45 minutes on the phone with CVS at the restaurant, sick to her stomach, trying to figure it out because she doesn’t have $3000.00.

So mom gets the call from CVS Pharmacy. What 23 year old has $3000.00 to give at the last minute?  And has 45 minutes to figure it out or she doesn’t get it? UNBELIEVABLE!!!

Now after that 30 minute phone call, charge card later, her pills will be delivered by 12pm. I call Crystal and told her to enjoy her night. She made it very clear…I love you mom.

Now it’s Saturday morning, I am going to make Courtney and I a cup of coffee. It’s 9am, I open the front door, just waiting for the meds, you know I don’t want to miss it because with Medicare…you have to sign for it. Thank God, I don’t work so I would be available to sign for it.

As I walk to the kitchen to start the coffee and then walk back through the living room again, I see a note on the door? No No, you’ve got to be kidding me, UPS has already been here! They will try again next week!!!!

The tears immediately began. I was in shock. All this work. I call the 1800 number, they tried to deliver it at 8:15am. I have a dog, I was up, Courtney was up, no doorbell, no knock? I get a hold of customer service…there is nothing they can do. So what do you do when you are crying your eyes out, loss for words, broke, in shock and don’t want to tell your daughter…I called my mom.

Mom, now we know why you work where you do. You have met some good people. Thank you mom. Moms are the best!

I just got her Chemo….Thank you God…

A little story…

Written on Thursday, January 21st @ 10:00pm

I am sure you thought, Wow an update already? But I thought it was important to share a quick story about what happened tonight.

Before work/dance I was running with my daughter Courtney to get her scrubs for her Dental Program. I found myself so happy for her. Proud that she has continued to find what she wants to do with her life. She has set her goals and seems to always stay on task.

However, yesterday was a different story, Courtney was stressed. Third day of her classes and she was worrying about school. Not just the financing but the professor had given the class a list of things that needed to be done by Spring Break and that put Courtney in a whirl spin. Courtney would never think to wait that long to get it done. She immediately started in on it. Worrying about things that hadn’t even begun, I listened & watched the stress take the joy out of the journey she was beginning.

Courtney in her Dental Scrubs!

Courtney in her Dental Scrubs!

As we worked through her dilemmas, I made sure to remind her not to worry about tomorrow focus on right now. With a little more chatting she figured out a plan and with a good nights sleep she felt much better today. I must admit I did think to myself, if Crystal never had Cancer could I have explained it or helped Courtney as good as I did?…I really don’t think so.

I made sure to snap a photo of Courtney trying on her scrubs which completely annoyed her and then I flew to work. Crystal and Cassidy were working away. We had so many new students that it put a smile on everyone’s face. But once dance classes were over, Cassidy began to clean as Crystal and I began inventory.

Crystal sat at the front desk, I in my office. I yelled the numbers, she typed them into the calculator. But what I found is that Crystal had to keep asking me to repeat the number. I thought to myself, goodness I am reading them so slow and loud? Can she not hear me? As I hear her say, “Mom, it’s hard.” I took a moment and I thought is she crying. My heart began to race just a little, I got right up went to my door and there is Crystal with tears running down her face. I ask her what is it? Can you not hear me? She said “No mom, I can’t remember the number the minute you say it. Mom, I am not like that, I always remember.” And she is right, this is not her. I could tell it scared her. Her sister Cassidy came over to us and I could tell by Cassidy’s eyes that she will be crying herself to sleep tonight.

I calmed Crystal down, gave her a big hug. Told her I could finish it or we could try to do it again. Of course she wanted to try…

We began the process again only I sat right next to her this time. That was the moment, I held back my tears. I watched her type in about 40 numbers like a child just learning. It was difficult for her, it was difficult for me to watch. I didn’t want her to see me cry, I watched her mind think, her hand would go back and fourth over the numbers each time thinking like she had never heard that number before.

I work with Crystal everyday. Even before she became ill with this horrible Cancer. I watch what this Chemo can do and I think to myself, how do others go to work that do Chemo? Because unless their boss has been touched with Cancer or their boss knows you personally, I don’t think really anybody knows what is happening expect the one going through it. It is crushing.

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

So today, I felt proud, happy, sad, concerned and I am exhausted. Just a little story to remind you of what someone doing Chemo goes through.

Bring on 2016!

Written on Wednesday, January 20th @ 2:45pm

Merry Christmas from our home to yours...

Merry Christmas from our home to yours…

Hopefully everyone enjoyed their holidays, brought in the New Year with a joyful heart and that you are keeping warm with this cold weather in Iowa.

Well a year ago today, Rod was having surgery on his ankle. What a long journey it was for him last year. And today Rod’s ankle is much better, Courtney is in the dental program at school, Cassidy is learning what makes her happy and Crystal has finished her first round of chemo this year.

I didn’t want to update Crystal’s Story until she finished her first round. There really is not much to say. Chemo is difficult. Chemo makes you sick. Chemo makes you tired. Chemo makes you depressed. Chemo can suck everything out of you but yet it helps you fight to stay alive. And yet you pray that Chemo does nothing else but kill the bad stuff.

I must admit a hard thing to hear from people this last time was…”How is Crystal?” As I respond with “She is in the process of Chemo but doing Great.” I then hear, “What, she is on Chemo? I thought everything was good at the last doctors appointment. I thought you got good news? Is it back? Why is she on Chemo?”

We did get good news. But the fact is she still has the Cancer. She will do Chemo for the rest of her life unless a miracle happens and those tumors go away. Or they can surgically remove them.

Happy New Year! Bring on 2016!

Happy New Year! Bring on 2016!

When I finish saying all of that in a round about way. I usually hear…How do you do it? How do you get up? How is Crystal?

How is Crystal? For a 23 year old, who has been fighting Stage 4 Pancreatic Cancer for 3 years…She is doing as good as she can be. She is a fighter, a hero, a kind soul and because of her, her journey she has blessed us with hearing from all of you.

How do we do it? I am not sure how her sisters do it? I don’t know how they feel. I am sure sometimes they feel sad for her, yet angry that everything seems to fall around Crystal’s journey and her cancer. I think deep down inside they know as a family we have done pretty good keeping it together and yet I am sure they have guilty feelings when they think how they truly feel at times. But I bet we all have that, we are human.

Rod, he works hard. Rod would do anything for his girls. Rod is quiet. I think we try to focus on normalcy, plan for the future and to speak for myself, I do everything in my power to not think about it. It makes me sad.

Hope...What get's us through the day...

Hope…What get’s us through the day…

So how am I not thinking about it? Right now I am working on the wedding! The future Mr. & Mrs. Gage Barnett. As my dearest friend Kevin put it…The wedding of the Century. We have sent out almost all of the “Save the Dates” just working on a few more addresses. I hope people understand we can’t invite everyone. But I know I will keep all of you updated and with photos through Crystal’s journey.

Save the Dates! Looking forward to a happy day with family & friends!

Save the Dates! Looking forward to a happy day with family & friends!

Now honestly how does everyone do it? Everyone has a story whether it contains Cancer or not. Life is a journey. Your family, your friends, your relationships, work, bills, higher insurance premiums, birthdays, happy events, sad events, gaining weight, losing weight…It really boils down to how we handle it. You may have a great year and then a bad year. But what I do know is if you have a thankful heart and you look for the blessing in each day it does bring you peace. Oh and sleep…yes sleep helps with that thankful heart. Sleep helps you find the blessings in each day.

December 2015

Can you believe Christmas is almost here?

Written on Monday, December 14th @ 2:55pm

We received our Christmas Gift, Crystal not having to do any Chemo until after the holidays!

A little fun to take our mind off of the wait.

A little fun to take our mind off of the wait.

Our drive to Rochester was an interesting one. First, Crystal decided to drive, her reasons were since we are paying for the hotel room, she could at least drive. Goodness, I didn’t realize that was her thoughts until we already started driving.…

Second, it was dark out when we started on our journey. We were happy that there was no snow or ice to deal with but knew we needed to keep our eye out for deer. As we are driving a long we see that a cop has pulled someone over on the other side of the interstate and then we see a car pulled over on our side. As we both look to see what he is doing outside of his car we realize immediately why he is pulled over. He had hit a deer which was laying the middle of the road, he obviously was looking at the damage to his car. And let’s say Crystal missed hitting it but not all of it, which about made her get sick in the car. Crystal was feeling pretty nauseous for awhile after that but thankfully we didn’t hit it. I can tell you our hearts were racing like we just got done dancing.

Now we have arrived at Mayo, as we walk into the clinic that early beautiful morning in Rochester we see not one but two beautiful shiny black limos…at the same time we say…hmmm someone important is here today. We giggle and begin to look around to see if we see someone. I started thinking to myself, goodness kings & queens come here, we’ve never seen this before as many times as we come here. And then out of the blue Crystal says…”Mom, that’s how I want to arrive”. As I say, “ummm let’s just get through these tests & your wedding”! (By the way I did put this cute story on Facebook, and thank you to everyone that reached out to me that wanted to make that happen for her, I guess we can always dream. There is good in the world.)

We got some purple hair!  Raising awareness in fashion a friend says:)

We got some purple hair! Raising awareness in fashion a friend says:)

Crystal got the hiccups that morning in the car on the way there. I stated you know you are going to get them again, she was like I know. And she did, and you know where…in the MRI Machine. The machine you have to lay still and hold your breath at certain times for…she said I used the microphone and apologized to them. lol Plus Crystal had a few new tests they wanted her to do, which we had a few funny things happen on those new tests too that made us laugh.

I did meet a mother and daughter who made the time go by fast as we visited with each other. Her daughter is a little older than me but she is fighting breast cancer. It was a blessing to chat with them. There were tears but it was nice to know that the feelings you have are all the same even tho the journey and cancer is different.

The tests got done sooner than we thought. So we decided to head to the Mall of America for a little dinner & some shopping. It was a nice break from the emotions at Mayo.

Well, the morning has arrived. The day we find out the next step. I must admit, it was very emotional one for me. As usual Rod was quiet, Gage is uplifting and looks at Crystal with such love, then there is Crystal who keeps on smiling.

As we arrive on the 10th Floor in the Gonda building we immediately recognize something new. A new smell…it was new carpet. That actually got us talking about something else instead of being quiet and keeping our thoughts to ourselves.

Before the news we look out the windows...And think...

Before the news we look out the windows…And think…

It is so hard to sit and wait…I keep thinking of her future, our future as a family. What is going to happen? And I can’t answer not one of those questions except we will take one day at a time.

What we have learned…

The prayers are working, the Chemo is working and Crystal’s attitude is working…We’ve learned that her tumors have shrunk and that they have not spread.

As much as we want her to do surgery to remove those cancer tumors the doctors feel it is best to keep doing what she is doing with her chemo treatments. And our gut says to trust our doctors, so that is the game plan.

Courtney and Cassidy struggled with the news when I told them. They just want her off of chemo but as I explained to them, chemo may suck but it is a blessing and is keeping those tumors at bay.

At her next Mayo appointment, if her scans look like it does at this time. She might just get to take a break from Chemo for the summer which would be perfect for her bridal showers/parties and of course the big wedding day!

As we drove home thinking of how things could of been worse I begin to think about the next day…Crystal’s day with her bridesmaids. See life goes on…

Crystal's Bridesmaids!

Crystal’s Bridesmaids!

Merry Christmas to you all. You are a blessing to my family. Crystal will begin her next round of Chemo on Monday, January 4th.

Give the worry to God…Repeat…

Written on Wednesday, December 9th @ 4:00pm

What a beautiful day this Wednesday in Iowa is for the month of December. Oh Iowa weather, you never know what it’s going to be like. I guess it keeps us on our toes, it reminds us we are not in charge…

Happy Thanksgiving from our Family to Yours...

Happy Thanksgiving from our Family to Yours…

I hope everyone had a good Thanksgiving and if you had some struggles, I sure hope you found some good in your day. Rod, Crystal’s father is an amazing cook…we are definitely thankful.

Did you all see Crystal’s interview on KWWL? WoW, 5 minutes talking about Pancreatic Cancer. What a good thing. So many of you that have been following Crystals Story were even surprised about how silent this cancer is. I am thankful that we raised awareness.

Crystal and Gage have their engagement photos back. They will be getting the “Save the Dates” done in the next month. That puts a smile on my face.

Crystal has finished up her 2nd round of Chemo at this time and is getting ready for her huge doctor appointments at Mayo starting early tomorrow morning.  Thursday, December 10th.

This week, I was enjoying a cup of coffee with Crystal. When she says to me, “Mom, I feel so good right now. You know I think the last time I felt this good was in May. Remember, I went to my appointment feeling good and then received the bad news on my birthday. I had to start Chemo and then had to have Surgery which then I had complications and then it was back to Chemo.” I was shocked. I didn’t realize how long it had been. It is crazy to think that my whole year I have been worried. And now…what will her future be? More chemo? Another surgery?

One of their Engagement Photos...

One of their Engagement Photos…

A lot of you have asked how we are doing? Well, we keep smiling, we keep busy, we keep planning and hearing from all of you, keeps us going.

I must admit, I am sick to my stomach over it. Sometimes I imagine the news we could hear. Whether it is good or bad it almost makes me feel like I am going to be sick. My stomach turns, my heart begins to race, I feel like I am going to cry…I hate the feeling so much that I am getting pretty good at changing my thought process before anyone can catch on.

Another question asked…What do we hope for?

Well, we all of course hope for a miracle. Our family, our friends, our prayer warriors all hope for the doctors to find no cancer. But at this time, we know that there are two tumors in her liver.

So we pray that there is still only two tumors. That they haven’t changed. That they haven’t spread. That the doctors have the capability to surgical remove them. We hope for surgery.

Do I want her to go through a major surgery? No. But it would be the best thing for her, for her future.

So we wait…It is so hard to wait. It is so sad to think. But I keep planning for the future, I keep doing what I think I am suppose to be doing and I do everything I can to give the worry to God.

Writing this update is an emotional one for me. I need to go find something else to do, something else to think about it. But for now, thank you again for all of your prayers, messages and stories. You have touched my life. We will know more on Crystal’s Journey on Friday, December 11th after 5:00pm.

November 2015

Awareness Month…

Written Wednesday, November 18th @ 1:30pm

I am sitting in my kitchen, responding to emails, watching the wind blow and thinking this is a good time to do an update on our Crystal.

Stride for Stripes Walk in Des Moines.

Stride for Stripes Walk in Des Moines.

Crystal is in the middle of her 2nd round of chemo. Tonight she starts the pills that make her next week pretty rough. So prayers would be wonderful and the blessing is she will be off of chemo for Thanksgiving. YaY!

The zebra walk, Strides for Stripes in Des Moines went great! Thank you again for all of the support. It was so comforting and we felt loved. The walk this year raised $5609.54, which is more than last year! YaY!

As were driving home from this walk, the Spirit Van full of loved ones supporting Crystal, we came across a couple of accidents. As some of the walkers, were in a car ahead of us had sent a text, saying there was a bad accident ahead. We were trying to decide should we get off of 80 and go on the back roads to head home or do we stay on 80 and keep moving slowly. You were afraid you might get rear ended. You watched cars maneuver in out of the lanes just trying to get going faster. We chose to stay on 80. As the traffic began to move again, we drove past where the accident was. I thought to myself, someone’s life has changed tonight. Someone’s family is getting a call that will change their lives, will make them think and make them remember how precious life is. But in the cars/trucks around me, including myself everyone just starting driving like…Thank God we can get going faster and as simple is that…life goes on.

Our family Zebra Girl!

Our family Zebra Girl!

That Monday after the walk was an emotional day for Crystal. I think the day of the walk you are excited to get the word out. You are helping others. It is a good feeling but then the next day you go back to reality. You are living a chronic illness. So I remind my daughter of the love that she not only received from everyone at that walk but the inspiration she is to everyone. So you can lay in bed or get up and take a look at the sun and be thankful that you are not on chemo today. She listened to me, but I think coffee really is what helped.

November 10th was NET Cancer Awareness Day. We promoted the best we could on our end. Zebra all the way…

Did you know that a NET diagnoses can take an average of 3 to 7 years. By that time it has usually spread.

November 13th was Pancreatic Cancer Awareness Day. Again, we did our best to bring attention to that too! Purple all the way…

Did you know that Pancreatic Cancer has the lowest survival rate of all major cancers. Just 2-10% of those diagnosed survive 5 years. Myth: Pancreatic Cancer doesn’t affect many people. Fact: It is the 4th leading cause of cancer death in the US.

Our Supports for the Day!

Our Supports for the Day!

On another note…We will be bringing more awareness to Pancreatic Cancer on Monday, November 23rd. KWWL at 10pm is doing a story on this type of Cancer. I am excited to see how it is put together.

The girl that interviewed Crystal was so delightful and Crystal made a connection with her right away. You know when you do things like this, you worry on what to say, what you look like, but I did tell Crystal…none of that matters. We just need one person to see it, one person to feel it, one person to begin to talk about it. I think that is what we are suppose to do.

Crystal during her interview with KWWL.

Crystal during her interview with KWWL.

Enjoy your Wednesday. Find something good in your day, I bet it will make you smile.

 

October 2015

Happy Halloween!

Written Wednesday, October 28th @ 11:30am

It was a good day!

It was a good day!

I am proud to say, Crystal has finished her first round of chemo. She was a trooper. Crystal walked everyday, she smiled everyday, she pushed through everyday. Crystal danced, she found her wedding dress and when she felt like she couldn’t make it through a day, Crystal took a nap. She took time for herself. She is strong. She is my hero.

Before starting the chemo, we had stress on getting her meds mailed to her on time. These specialty pharmacies mail your meds, usually because of insurance. They mail your meds to your home which sounds simple and easy. I am sure it can be wonderful but it can be a nightmare at the same time.

See even though they state they will be mailed to you, the person on the phone who really knows not a dang thing about you is not worried when you get your medicine. And it really is not their problem.

Even Crystal’s doctors were at their wits end. You could hear it in their voice, someone was lying and the doctors knew it was not Crystal or them. The doctors themselves made three phone calls and got no where! Crystal made four phone calls and got no where.

Watching Crystal cry about not getting her medicine on time. Being upset because it will screw up her schedule of when she starts her chemo. And then being worried that they may have to redo all her blood work because she won’t get to start when they thought. Watching, listening to all of this made me furious.

As I told Crystal I am going to call the pharmacy. Crystal begs, “Please mom don’t. I don’t want them to do something to my chemo. I don’t want them to give me the wrong stuff. There is nothing we can do, even the doctors have tried.” I said, “Crystal it is not a fast food restaurant they are not going to do something to your medicine. This is wrong. Even the doctors are shocked.” But I told Crystal I won’t call the pharmacy. I didn’t want to upset her anymore than she was.

So I called my insurance company…BCBS! They were absolutely wonderful. The woman on the phone could hear/feel my plea.

All I wanted to know is who gets the letter from my lawyer if my daughter does not get to start her chemo on the day her doctor wants her to start it? My daughter has Stage 4 Pancreatic Cancer and is in tears not because of her having Cancer but because of not getting her medicine on time. Which in return frightens her and her family that this is hurting her health. So do I send it to CVS Specialty Pharmacy or to my insurance company…As I also explain to this caller at BCBS, the doctors I know are on my side. And I know that I pay a pretty penny to have this insurance since my husband and I own our businesses. Plus our deductible has been met by the first month of the new year for the last two years. As this kind woman then puts me on hold…

I wait patiently and keep reminded myself that none of these people that answer the phone know our story. Some probably are making minimum wage and just doing the simple guide lines. They probably have older people who don’t understand why everything is over the phone/internet/mail and get frustrated. At that moment she comes back to the phone and it explains to me that she herself called the pharmacy. I must admit, I was shocked, I was happy that someone listened to me.

She also found their story confusing and honestly didn’t make any sense. The order was placed by the doctor on Friday, October 2nd, today is the 9th and they were not promising anything until the 12th. It should not take that long at all. But this kind BCBS woman explains to me that she is personally going to stay on it. And that the pharmacy has informed her that Crystal will be receiving her meds by 6:00am Saturday morning, remind you this is late Friday afternoon and we were told there would be no deliveries.

Now the best part of this story, is as I am on the phone with BCBS, Crystal is calling my cell phone. I tell the lady at BCBS, please hold it is my daughter calling me. Crystal says in a loud voice, “Mom you are not going to believe this but CVS just called and they are delivering my meds tomorrow in the morning! Can you believe it?” I said yes. I called the insurance company and they called the pharmacy, I am still on the phone with the insurance company so I will call you back. Crystal goes…”So you called the insurance company?” Yes, because you told me not to call the pharmacy and I knew I was calling someone. “Thank you mom”…is a wonderful thing to hear.

Thank you to the woman on the phone who was polite, listened and solved it. The pharmacy delivered those meds because of you. Thank you for taking the time. For having a heart and hearing me out.

The start of her Chemo...

The start of her Chemo…

So needless to say our darling Crystal did get to start her chemo on time. During this round of chemo, Crystal had some big things coming up. One was her engagement photos and another being one of her wedding dress shopping days. I must admit, I really wanted it all to be canceled until she was done with this round but Crystal made it clear she has been waiting to feel good since her procedure in August and she was ready to do this. I sure did pray to God. I just kept whispering to myself, okay God this is in your hands.

First up, her engagement photos. I have not seen them yet but I did get to see the couple that night. As one of the Junior Spirits said to her that night…”Crystal you look like you are glowing”…Jade, I can hear you saying that to this day. It puts a smile on my face.

Crystal's Day...Let it Begin!

Crystal’s Day…Let it Begin!

Next was the dress. Never did we dream we would find the dress at the first place. It was dress #4 that she tried on. And let me tell you it is hard to not show anyone the photos & videos. You will all have to wait for the big day to see it. There were tears. Yes, happy tears. I wanted to reach out to Gage & thank him for making my daughter so happy but then I thought, he is just as happy.

 

Here is what I posted on Facebook.

Wedding Dress Shopping!

Wedding Dress Shopping!

What a beautiful & emotional afternoon. There were smiles, laughter & tears. Thank you God for this day. Thank you for the sun, the relaxing car ride & to be able to have my own mother here with me for this moment. Thank you for having my daughter, who has been on a week of chemo pills, feel good enough to look for her wedding dress.
Oh how we have waited for this day, a long wait for Crystal Marie Kuehl​ to feel good enough to begin looking for her dress since her surgery in August.
Gage Barnett​, your mother Nikki…is wonderful. I feel so happy this evening, I feel lucky.
No one is allowed to see her dress until the day she walks down the isle. Maid of Honors Courtney Rae Kuehl​ & Cassidy Kuehl​ & her bridesmaids Kaitlin Johnston Boyse, Amy Thomas​ & Bridgett Barnett Schluter​ you will be the lucky ones to see it before.
Mom, Shari Saari​ thank you for the gift…I know it was for Crystal but in the end it was for me too. We are blessed. There is a melody in my heart…❤️

Now this round is done. Crystal will get to enjoy Halloween this weekend. Plus we are doing the Strides for Stripes Walk in Des Moines on Sunday. It is a Zebra Walk and the proceeds go to Carcinoid and Neuroendocrine Tumors. Thank you for the dear friends that are walking this for my daughter. Thank you for the support. It warms our hearts. A small walk and Crystal’s Team is bringing almost 40 walkers!

Thank You Grandma!

Thank You Grandma!

We also know next month when Crystal does her second round of chemo, she will be off during Thanksgiving! YaY…Life is Good.

Some of you have asked about the Spirits in California. Well, we have decided not to go. Yes, a fun opportunity but I believe their will be more to come in our future. Crystal would have been there in the middle of her chemo round which can get bad. Blood counts, fevers I just wanted her to be close to home during that time.

Crystal did cry because she felt she was holding back the team. It was a Tuesday night when I knew we were not going. A mother in my dance studio had come up to me and asked how things were going…I stated the latest let down. She then told me a story when she was fighting Cancer. She found herself getting sad about things she could not do. And what kept her going was a saying…”It’s not no, it’s not now.” Oh how I needed to hear that saying. Thank you God for putting her in my path that night. I have used this saying so many times in the last couple of weeks. It makes me cry typing this….

I sure have met some incredible people on this journey. And I have learned even more about her cancer with the help of these new friends/patients/doctors. Crystal’s Stage 4 Pancreatic Cancer is rare at her age. Her type of Tumor is an Insulinoma which again is rare and what is even more rare is Insulinomas are usually benign. Plus an Insulinoma is a Neuroendocrine Tumor. So purple zebra ribbons for her! But as a doctor has recently told me, it is Pancreatic Cancer anyway you look at it, just a different form.

I must admit lately I have struggled with talking about Crystal’s Story. I get so sad when I think about it. When I talk about certain things that I can recall so vividly. I will never forget hearing those words when she was diagnosed. I will never forget the feeling I got when I could feel all of your prayers. It seems I am more worried about this next appointment coming up in December. December 10th & 11th. Why? Is God preparing me for something or is it because we have a fun exciting year coming up and I don’t want it to be ruined with heartache.

You ask me how I get through this. I always say, I try not to think about it. The minute it comes into my thoughts I focus on something else. I will plan things for the future which helps keep me positive, it gives me a purpose, a goal to reach for. For a moment I feel like we are not living it but lately it has been harder for me to do.

What have I learned these last few years…

Life goes on even with heartache.
People come into your life for a reason.
Always try to look for the good because in the end you will find happiness.
Believe in yourself, embrace the word HOPE.
There are more good people out there than you think.
Surround yourself with people that lift you up.
Stay away from drama, that is the devil in disguise. As they say,
“I would rather live my life as if there is a God and die to find out there isn’t, than live my life as if there isn’t and die to find out there is”.

September 2015

We have an appointment scheduled.

Written on Tuesday, September 1st @ 5:30pm

I am sitting in my office and excited to say Crystal is here at the Studio! She is trying her hardest to finish out the day but Crystal is here! The Junior Spirits are lucky they will get to see Crystal in person.

Crystal has heard from Mayo. On Wednesday, September 9th starting at 6:45am she will begin her day of tests. She will also be meeting with the surgeon and her oncologist team.

At this time the doctors do not feel that this is any kind of infection and it is not the pancreas leaking. They do feel it is fluid. Sometimes after surgery your cells become unbalanced and fluid gets in there and Crystal has a couple of fluid pockets. Honestly, I really don’t know the doctors terms but this is how I take it.

We have put our trust in Mayo and so far they have not let us down, so we are again going to put our trust in Mayo. Prayers are welcomed.

Crystal is taking it day by day. As far as her upcoming vacation I guess that is safe to say she will determine that day by day as well.

Last night and this morning were difficult for me but hearing from a lot of you makes things better. Sometimes it is just a word someone says or a story they share and I can tell you it helps. Thank you.

All of this worry with Crystal and life still goes on. We still have two other daughters who are growing up and need us. Just because they are now consider adults doesn’t mean you are done being a parent. Then there is the daily events of life. There are bills, medical bills, medical appointments, family events. Not including Rod and I own our businesses so making sure those are still running, that money is still coming in can be exhausting in itself. How do people do it? How can you truly not become bitter? Ignore a typical doctors appointment for $6000 every two months and that is if everything is going good. You still have gas, hotel and time off of work. Even though you may own your business, you still have to make sure it is running smoothly and someone is not robbing you blind. So again, how do people do it?

I guess a good nights sleep and having hope. Hope that life is better. Always trying to look for the good in every day and stay away from the negativity. Stay away from drama…I guess that is how I have made to the ripe ol age of 45 with a smile.

I started thinking back to a story Crystal shared with Amy and I. She talked how at Mayo or at the St. Mary’s Hospital before any kind of surgery or procedure there is always one person in the room holding or tickling your hand.

She explained that when she was going into the CT Scan on her tummy, she had to be very still as they were putting a needle next to her spine to do the biopsy and tears were rolling down her face. Actually Crystal said, “Snot was running out of my nose which made it hard because I was not allowed to move and was given oxygen at the same time and trying not to cry. I was so scared.” Anyway the point is, she said there was one person/nurse holding her hand and when she would roll into the machine the person/nurse would let go but then minute she would roll back out, before her complete body was out of that machine a nurse would have already grabbed her hand. She said it was comforting.

It made me cry to hear Crystal tell that story. To hear her be that scared. To know that there is a nurse comforting patients like that makes you smile happy tears.

And then I begin thinking of my daughters. How when they were just babies, I wanted to always have something they would remember me by as they grew older. I always think of my grandma who did this to me. It was soothing, it was comforting, it made me feel secure…my grandma always tickled my back, my arms and my face. And to this day my daughters have no problem asking me to tickle them…which I never dreamed my daughter would need from a nurse.

Those stories…I guess is what keeps you going.

Procedure tomorrow will hopefully get rid of Crystal’s pain…

Written on Wednesday, September 9th @ 10:00pm

It’s late, I am very tired but I have heard from so many of you today that I couldn’t go to sleep without updating Crystal’s Story. Thank you for your concern, we feel blessed.

To update you from the last journal, Crystal did go on her mini-vacation.

The Bears Pre Season Game!

The Bears Pre Season Game!

What started off as a chat in the car on the ride to Rochester a few months back. Rod and I learned that Gage’s friend was getting married in Atlanta, GA and they were going to go. They found cheap flights out of Chicago and decided to make a mini-vacation out of it. Bears PreGame and even a Cubs Game was part of the trip, Gage and Crystal asked Rod and I to go with them.

How wonderful that Crystal and her fiancee would want to spend their little get away with us, so that was the game plan. Then Crystal’s surgery was thrown in there. But Crystal figured she would have a few weeks to be back to normal for this trip but then she developed some complications after surgery.

So, here we are today. Our flight was delayed in Atlanta, we actually sat on the runway for about an hour before they had us all get off the flight, to only get back on it about 30 minutes later. So getting home very late Tuesday night made for the 3am road trip to Rochester exhausting today.

Cubs Game!  Awesome!

Cubs Game! Awesome!

But here is what we know. Crystal has some fluid by her pancreas. And when we say “some”…we mean a TENNIS BALL SIZE. It is located next to the pancreas which is putting pressure on her back and of course her side. The fluid can be just what you sometimes will get after a surgery. OR it is her pancreas leaking. So tomorrow morning they have a 4 hour procedure scheduled to drain it. They will then do some testing on what the fluid is. We will then get the results and go from there.

Please pray that everything goes good. The doctors hands are steady as they put that needle into her little body to drain it. Pray that it is just fluid…She has no desire on a drainage tube if it is her pancreas leaking…

As for the spots in her liver that they were watching, we have learned today that those two spots have grown, just a little, but they now can confirm that they are Cancer. At this time we are not sure of the game plan for that. They talked of waiting 3 months to see if more show up, to possibly removing them in time, to possibly doing chemo. But for now we focus on the fluid that is causing her pain.

I would say as I drove back home, exhausted, my phone going off with so many thoughtful angels out there leaving me messages…I found myself looking at the homes I would drive by and wonder what their stories were. What devastation do they have? As I look at Crystal sound a sleep, knowing how bad she just wanted to see “Storm” (Cat), she looked so little, so innocent, so peaceful. I see Gage in the review mirror. And think here he is, so young…Oh their journey. Love can conquer so many things and then I began to cry. I can’t see the road and then I think goodness, pull yourself together Tiffany. God gives us what we can handle, snap out of this sadness and think of what God has given you. I love music and can choreograph to anything when I drive, so turn up the music, and use the gift God gave you…so I did.

Good Night…

We are home…

Written on Thursday, September 10th @ 9:15pm

Our way to the Mayo Clinic in Rochester, MN

Our way to the Mayo Clinic in Rochester, MN

We arrived early this morning at Mayo. We drove through a storm on our way to Rochester and we also saw two rainbows, which we felt was for good luck. It made the drive to Rochester, MN a little different, which was nice.

Before her 1st appointment we had time to stop in the Mayo Gift Shop. We usually do that to kill sometime and see what is new. And today, Crystal found something she really liked. A Mayo Coat with a scarf. She smiled and said mom, “Isn’t this cute. I think I should get something from here, since I am here so much.” In my head I had to agree, so yep…she got it. And it felt good giving it to her. She was so thankful and all I kept thinking was I wish she didn’t have to go through this.

Well…Crystal, was a trooper today as usual. She calmly sat waiting for her name to be called back for the CT Procedure. When her name was called out, I immediately was frazzled. Gage stood right up and gave her a kiss, then I stood up gave her a quick kiss and then thought wait…I am not ready. Off she walked, I sat back down in this large waiting room and looked at Gage and said my heart is racing. He said, “She is going to be good. And she is going to feel better.” I smiled and thought, I am glad you are here.

Gage kept pretty busy. Next thing you know a few hours went by and we were getting to go see her.

As we walked back into the recovery room. There she was laying down in her bed, two empty chairs were sitting right there at her head waiting for us to sit in. She smiled at both of us as we entered her curtain area, which is exactly where she was when they did the biopsy to see if this tumor/lymph node was cancer. I won’t forget that day, because they came out to get me because she was crying so hard for her mom during the procedure. It broke my heart. But today…Today she looks confident.

The other cute thing is the Mayo/CT Area sees many new faces daily but they remembered her from the last time…They remembered all she wanted was Oreo cookies, her favorite. They were very curious why she was back….So sweet.

Crystal after her procedure!

Crystal after her procedure!

We learned from Crystal, that she cried a little when they were numbing her up. Crystal also told us that they asked her if she wanted medicine to help her relax, kind of knock her out. She then said…”Do I need it? Because I really just want to go home and if that makes me have to stay I don’t want it.” They informed her just the numbing medicine is needed…so that is all they did besides give her pain meds.

Crystal had to lay very still because again, they had to go through her back near her spine to get to the spot. We also learned that this fluid was the size of a tennis ball, it was not only near her pancreas and spine but next to her kidney as well. So that would explain the pain.

A funny thing…Crystal was laying in her bed as she told us what she had gone through. We listened so closely and then all of a sudden she sat straight up to show us where the needle went in through her back. Gage and I about lost it. We were like~ Oh my gosh lay back down…We were so shocked to see her just sit up. Then we all laughed. It was funny that we felt the same way but here she was still numb and could move pretty good.

We had to sit at least two hours before she could either go to the hotel or possible go home. Crystal watched tv and chatted a little bit.

The nurses were wonderful. They were gentle and kind. You could hear them talk to other patients so softly. They would try to comfort them as best as they could. Try to reassure them they were going to be fine.

It is kind of sad when you think about it. Such a hard job. A nurse sees all different types of personalities in her career and has to make the best out of each circumstance. A nurse sees someone so vulnerable and scared, they are the caretakers that can make a difference in that one’s life. Oh trust me, I have seen some pretty bad nurses…but isn’t that life? There is always bad in whatever you do, in every career. But looking for the positive, looking for the good and acknowledging it, is rewarding to all.

After our two hours…We were told Crystal could go home. YaY, not a hotel, her own little home where she can snuggle with “Storm”.

Thank you for all of the messages, positive vibes, prayers, and honestly for showing you care. Thank you.

A lot of you asked if Rod was there today. Rod had to work. Yes, he owns his company but with taking a few vacation days prior to this, it made it even more difficult than normal for him to get away. Her sisters want to be there too but with school back up and jobs to pay for schooling…they can’t get away either.

We are all smiles...

We are all smiles…

Which brings me to this point…Crystal is blessed to have a fiancee that knows how difficult it is for Crystal to work when she is this sick even when she hears her future statistics. But Gage is understanding, I am sure there will be struggles but as a couple we all know that is life. Crystal is also fortunate to do what she loves, what she is passionate about. I have been very blessed to be able to stay home with my daughters since birth. Now when my youngest graduated from high school I honestly thought my life would be different. Opening another studio in a new state but as you can see…God has chose another path for me…but my point is…

Think of the Cancer patients who don’t have that. Who struggle to work when they are doing chemo, paying bills, making dinner, grocery shopping, cleaning their home, raising a family or maybe wanting to not be single forever and trying to stay positive through the process. The medical bills, the hotel stays, the gas, the meals, the time off of work, the worry…And sometimes people can say things and don’t think of the whole picture, they think of what is in front of them. What they would do but honestly until they are in that situation they have no idea. They judge. They are human but we can learn from each other. Take a moment and think of the many people you may know that is touched by Cancer, again Crystal is not the first and she will not be the last but if she could open one person eyes to this journey of life and make a difference then that is the story I want for her.

At this time we do not know what the fluid is. Hopefully we will know soon and praying for no drainage tube. As for the two tumors in her liver, we have yet to learn what they will be wanting us to do with that as well. But we do know one thing…life goes on and you have to continue to live, dream and laugh.

We got some news…finally.

Written Wednesday, September 23rd @ 6:45pm

What a beautiful sunny day in Iowa. Crystal and I worked on her wedding itinerary, we actually got it all finished up. The next 10 months will be busy, exciting and something positive to think about.

Family Time at a Outside Family Wedding!

Family Time at a Outside Family Wedding!

Since this procedure has been done, Crystal has been doing wonderful. Her spirit has been lifted because finally she is beginning to feel like normal. Hmmmm like normal, what really does that mean? Well, she said she felt better seriously by the next day after removing that tennis ball of fluid. Thank goodness.

Now don’t think I wasn’t pressuring Crystal to call Mayo to find out what was taking so long. I would tell Crystal just ask this… I mean is the fluid bad? Am I doing Chemo? Do you want more tests? Do I need a drainage tube?

But bringing it up to Crystal can make Crystal grumpy. She makes it clear, when they know they will call. Like you say mom, “No news is good news”. And I am like, “Whatever”! As Crystal then says to me this last weekend, “You know mom, I kind of like not knowing what is going on, what is next. I don’t want the bad news.” Needless to say, I didn’t bring it up again.

Crystal has loved getting back into the studio, seeing the parents and students have also helped with her mind set. However, she is definitely ready for the Professional Team to get back into gear. Auditions are coming up next Wednesday! Crystal has been ready for that day.

A little Iowa Tailgating!

A little Iowa Tailgating!

A fun little fact…The Spirits maybe off to the Dick Clark’s NYE Bash again this year. We did it back in 2006/2007. And this year getting that opportunity again, has made Crystal not even care about what is next with her Cancer. Now I on the other hand, have put it on hold but I was told by Crystal today, “Book it…I am going no matter what, chemo or not. I may never get to do this again”.

So as I was sitting at my kitchen table late this afternoon working on schedules and paperwork, I sent a message out to my contact in Cali. It wasn’t even 30 minutes later and Dr. McWilliams, her oncology doctor at Mayo, called.

My heart was racing. Finally. Finally, we will learn the next step. Right? Or is this a sign that we don’t go to Cali. I mean I just messaged my contact to get things in order and now we are learning of this…What if? Oh what are they saying to her, what is Crystal thinking, what is going to happen….Yep, all of that was running through my mind.

And then my calm daughter finishes up her conversation and proceeds to fill me in on what is next….

Well, the fluid is not the pancreas leaking, it shows no sign of cancer either. It is just fluid from the procedure that was done. They were very happy about that.

Next, after McWilliams and her team of doctors spoke they felt that Crystal needed to be back on Chemo rather sooner than later. They see that the two months Crystal has been off of Chemo to prepare for this last procedure, it shows the growth of the two tumors in her liver just in that time. Honestly, that scares me but I guess it all does.

Iowa~ Go-Fight-Win Crystal~ Go-Fight-Win

Iowa~ Go-Fight-Win
Crystal~ Go-Fight-Win

The fact that their really is not enough statistics on this type of Cancer to help the doctors with the next step, they asked for Crystal’s feedback. When Crystal told me that…I must admit I was nervous. I could just hear her saying, well I don’t think we should do chemo until we go back for scans…ugh BUT Crystal didn’t say that. She said, “I trust you, you are my doctor so I really don’t want to give you my feedback. You tell me what to do and if my gut doesn’t trust the answer, than I will say something.” As Crystal is telling me this, I could feel me smiling inside. She said, “Right mom? That is how we do everything”. She is right. God gives us this gift. This feeling. This gut feeling. This intuition. It is just sometimes we ignore, we don’t trust it, we challenge it. Oh how I love being her mom.

We knew Chemo was a possibility. And even tho I hate what Chemo does to her, emotionally and physically, what it does to her family that watch her go through it. I know it is a blessing because without it her life could be shorter.

Chemo will start in the next week.

The next set of scans will hopefully only show those two tumors in her liver and nothing new. Nothing outside of her liver. Oh please I beg, I plead let my daughter enjoy her new journey in 2016 with no cancer. Let her sisters be sisters with no worry. Let them focus on their lives, their futures. Please. Please.

We are not sure of the dates of those scans but they are also thinking December to see what the next step for Crystal is.

Thank you for your listening ear. Your prayers and positive words. Thank you for helping me through this journey. Helping me find what the positive part of all of this is, and I hope it has helped you with your life’s choices too.

Happy 1st Day of Fall…

August 2015

Crystal is home.  Where to begin…

Written on Sunday, August 16th @ 12:11pm

Eating a little lunch!

Eating a little lunch!

We left early Thursday morning, Crystal had a appointment that afternoon with Dr. Kendrick, her surgeon. It was a beautiful drive to Rochester that day. The weather was perfect. And my mother, Crystal’s grandma, came with us.

I was looking forward to us three being together. Three generations with three different attitudes. Three women ready to battle this together with questions and gut feelings. What was even more fun was the drive there. I didn’t expect all the stories.

Soldiers Field...

Soldiers Field…

One story I learned was when I was about a year and half, which made my brother about 3 months, our parents had taken us on vacation. We had family in St. Paul so they seemed to go there a lot. Anyway, we go through a little town called Lime Springs and I learned that My dad and mom’s vehicle caught fire from a cigarette someone had thrown out the window of their car. My dad & mom had scurried to get us little ones out of the car on a very cold day. My mother sat in the ditch with my brother and I while my dad was trying to put the fire out and also trying to get things out of the vehicle. She said they lost everything, even the new stroller. My mom then said…I now think back and wonder what our parents were thinking because we were so young ourselves, it seemed to always be something with us.

A little swing time...

A little swing time…

I had also learned a story from Crystal. As we drove through another little town, like always there is this A&W that we pass and Crystal pipes up and says, “Mom, That place reminds me of your dad, my grandpa. He always took me there, it was fun.” I was shocked to hear her say that, then my mom piped up and said he loved that place. Which then made me smile. The funny thing is when I was little he always took me there too. Usually before I went back home to my moms. The A&W by Ellis…Oh the memories.

Needless to say we arrived in Rochester, MN. As we waited patiently for Dr. Kendrick to enter the room, we were full of questions but it’s funny how when the team of doctors walk in, you become kind of quiet. But the feeling we got was comforting. It made us feel positive. I had explained how we have lost all her doctors to retiring and have a new team not only in oncology but also as her surgeons so it is a scary feeling as a mother with change when everything before has been perfect. He could not of been more kind and confident. He was upfront about what their concerns were but felt confident it would go good. And with a smile he said I’m not going anywhere for about 25 years. Thank goodness I thought.

He then does proceeds to say, I know you know this and then looks to Crystal and says I know you want to hear you are cured. But the reality is you have a chronic disease that you will fight for the rest of your life. So wether it is 1 month or 6 months or 6 years you will always fight. So the goal or the idea is to stay on top of it and hopefully be able to take steps to control it. I thought to myself, it is hard to hear this I just want her to wake up after surgery for now.

For a girl who has never had surgery she sure is getting it down the last few years...

For a girl who has never had surgery she sure is getting it down the last few years…

We enjoyed our afternoon lunch at the amazing, “Victoria’s” and did a little shopping at their 1st on Thursday event and went for a walk in Soldiers Field…a full day.

Rod & Gage arrived late that night…Surgery was scheduled with the arrival time of 7:00am at St. Mary’s Hospital. So a little ice cream and pizza, in that order, then off to bed and can’t forget those prayers too.

Courtney, Cassidy, Bret & Michele arrived by 7:00am…Here is my update I posted to Face Book~

Friday, August 14th @ 8:05am

Crystal gets a Selfie in!

Crystal gets a Selfie in!

We’ve been here for an hour…Crystal Marie Kuehl​ is nervous but ready. Ready to get through this. Courtney Rae Kuehl​ & Cassidy Kuehl​ we’re excited to see her this morning & take a “Selfie” with her. Gage Barnett​ he is positive & loving. My mom, Shari Saari​ & my uncle & aunt are ready emotionally for all of us. Rod is quiet & me…my heart is racing…Together we are Stronger! Thank You all for the Prayers.

Friday, August 14th @ 1:32pm

Thank you for the support today. Crystal Marie Kuehl​ is in her room. We are hopefully waiting to hear from the doctor soon…

Face Book Updates: Friday, August 15th @ 6:16pm

Crystal's Family...

Crystal’s Family…

Well our prayers are working. Crystal gets to come stay with us at our hotel tonight. She looks good. She is up & kind of walking. She really is at this moment just extremely tired. We are blessed & honestly I think we are all wiped. Even tho you act confident in the back of your mind you worry…
Thank you for the messages, kind words and support, I’ve read each one. You truly are a gift to our family.
As for Crystal they did remove the lymph node/tumor that was next to the aorta. They were concerned with the blood line attached to it with possible internal bleeding but our Surgeon worked his magic & so far so good. As he informed us…there is no cure, this is a chronic disease that she will battle for the rest of her life. And our goal is to stay on top of it.

Crystal & Grandma

Crystal & Grandma

As we drove home Saturday afternoon I was in a good mood. I was happy that the surgery was over. I was thrilled to be going home and knowing Crystal was so happy to be with her fiancee.

Crystal looks great but is very tired and very sore. She has four laparoscopic areas that they used for the procedure. She is resting and no dance for 2 to 4 weeks.

Crystal with Uncle Bret & Aunt Michele!

Crystal with Uncle Bret & Aunt Michele!

When we were eating breakfast before our drive home, I stated to Gage & Crystal, you know a year from now you will be married. I have to admit I am excited for you both yet nervous with all of the change that comes with it. See Crystal as a mom, it’s my job to raise you & know when it is time to let go. I will always be your mom, we will always be a family but now, Crystal you will have your family. Your immediate family at this time will be Gage and “Storm”. Gage will be the one that looks over medical. As your husband he will be one that cares and takes care of it, and of you. Don’t get me wrong, we are very lucky and feel blessed that Gage has come into your life. He is not only a good person but a person with a huge heart. He has brought so much joy to you which in return has brought us much joy as well. Some people Crystal never get that feeling. You are lucky. But it is still very hard to let go…When some people get married, medical and health are usually not a concern. I love you so much and I have gained a son. Remember what I have said to you girls? When you find a boyfriend, ask yourself if you would be proud of him as a person if he was your son? I can answer it as a mother, his mother and father raised a good man. I would be proud.

Crystal & the love of her life...Gage.

Crystal & the love of her life…Gage.

As for Courtney and Cassidy they are thrilled that you chose to have two Maid of Honors in your wedding…What a beautiful day, Saturday, July 16, 2016 will be.

Maid of Honor times 2!

Maid of Honor times 2!

The CR Spirits did perform on Saturday, August 15th at the Iowa State Fair and I loved hearing from all of you in the crowd, how well the Studio/Professional Team danced for us. It was hard to miss it but there is always next year. And how grateful I am that we can bring awareness to the platform I have created over the years, a true gift.

The messages, the prayers, the support we receive is truly amazing and makes us feel so very special. Thank You.

The CR Spirits Dancing their Heart Out for Crystal!

The CR Spirits Dancing their Heart Out for Crystal!

Crystal’s follow up appointment will be Thursday, September 17th.

 

 

 

 And her journey continues…

Monday, August 31st @ 1:00pm

The last couple of weeks have been crazy. Crystal has been recovering from surgery but it has been a difficult slow recovery.

The first week home she did get plenty of rest. She did get one exciting thing done during that week, she asked all of her bridesmaids to stand up for her. Maid of Honor are her sisters, Courtney & Cassidy…And then onto her bridesmaids, Kaitlin, Bridgette and Amy. There were tears and how did Crystal pick these girls…Well, a dear friend Brittany on the CR Spirits made a remark to Crystal something like, see Crystal you will always have many friends, but friends change through out your life but family…family is always family. Those photos are with you forever, just like family. Those words stuck with Crystal. She asked them each in a very cute way…A photo will be released on her wedding day on how she asked them.

Amy & Shane's Wedding...(Standing Left to Right) Rachel, Crystal, Carla, Amy, Tiffany, Luci, Libby

Amy & Shane’s Wedding…(Standing Left to Right)
Rachel, Crystal, Carla, Amy, Tiffany, Luci, Libby

Also during that week, Crystal and I were in Amy & Shane’s Wedding. We were so excited to be a part of that wedding day. Crystal even made a remark to the doctor that she was so excited to wear her dress and heels that he needed to make sure she would be good to go down the isle, 7 days. What a goal!

But I could tell by day 6 that things were moving slowly. Yes, Crystal still smiled but was not doing very good. Besides being sore from surgery, she seemed very tired, nauseas, headaches, a pain in her belly and back. But she continued on with a smile.

The day of the wedding, I had arrived to the location to get our make-up. When I got there, I knew immediately she was not good. The pain, the nauseas feeling was taking over. There were tears. My stomach dropped. What do you do? Amy is getting married, it is a beautiful day. Crystal looks at me, her make-up is on, she is beautiful but I only see little girl, wanting help. I stare at her lips, they are a light pink and she says, “Do not say anything to Amy, I will smile and get through it. It is her day mom.”

We were blessed to have Rod there ready to take us to the next location for hair. With him being there he could be strong for Crystal. The two of them sat in the truck, smiled and talked while it was my turn for make-up. Needless to say, I cried. So much worry…

We are now ready for the wedding to begin…We get the bride off to her spot. And the rest of us bridesmaids jump into Luci’s new vehicle. One thing great about Amy’s wedding is her bridesmaids were all Spirits. So a pretty close friendship with all of us. So even though we kept Amy in the dark, the rest of the girls knew what was going on with Crystal.

As we were driving to the wedding, Crystal who has been very quiet all morning says, “Ummmm I think I need to pull over, I think I am going to get sick”. Here we are all dressed up, ready for photos, we are now pulled over, out of the car Libby is holding Crystal’s hair up. And I stare out car door and try to make light of the situation…So Luci, I thought maybe we could break in your new Vehicle. She said, “Tiff anyone else absolutely not but Crystal she can break it in anytime”. The moment she said that it was hard not to cry…I stared at Rachel who was in the passenger seat, my heart was broken, Crystal & Libby get back in the car, I wipe my tears and think I have the best friends ever.

Amy looked beautiful. I was proud to be standing there by her side. I was happy Crystal made it through it. It’s funny when you look at the photos, no one really knows the story. Everything is beautiful, everyone looks happy, that is why you should never judge. You really have no idea what people are going through a smile can hide a lot.

So now it has been two weeks since surgery. It is Saturday, Rod’s birthday and Crystal is getting worse not better. She is nauseous and can barley walk with the pain in her back. She is frustrated and tired. As they check her in at St. Luke’s which seems to take forever, Crystal is becoming short tempered. I stare at my little girl answering her questions and then I could feel she was getting close to the end of her patients. Crystal states in a firm voice, “I have Cancer, I had surgery two weeks ago at the Mayo, I am in Pain…I need to know why”? And then the tears began. I must admit as a mother it kills you. The worry is exhausting. Finding strength and hope is even more exhausting. You even question why you keep planning for the future because honestly it all seems to change.

From the cat-scan we have learned there are two spots of fluid near the pancreas. They are not sure what they are. Is the pancreas leaking, is it infection, is it just fluid, is it??? We have no idea so what do we do…WAIT. That is what we do…WAIT.

Something to get us through the day...

Something to get us through the day…

I hate Cancer. I hate what this has done to my daughters life. I hate what this has done to my family. No answers just wait. And then I have to find strength to look at my daughter, my family and say give the worry to God. We can’t do anything and what we are making up in our head is not going to help…so give the worry to God.

Today is Monday…and we are still waiting. We are waiting to hear from Mayo. They want to see her and run more tests but it is down to scheduling. Problem is Crystal is to be going on vacation this Thursday, airplane and all…now what? We wait…

As I talk with Crystal this morning, I state all the right things. I state how I would love to make the calls to the doctor because a mother has different questions, has a different attitude than the one that is living it. But I can’t, she is the adult.

I explain that it sucks, that you have to worry about this Crystal, worry about taking medical records on vacation with you, worry about planning your future, worry about this cancer taking over. But I explain, it is your life and you are not alone. There are many cancer patients doing the same thing. You are not the first or the last. You are a beautiful strong woman, who is not going to let it win. So call Mayo again…be your own advocate. If I have taught you anything it is to keep planning for your future, to have a voice even if it shakes. Be mad at God, be sad but move past it. Give it a few hours and don’t let that anger that sadness have your whole day. Because then it won.

Now, I need to listen to myself, my own advice.