May

In Vegas there were so many good, exciting, and embarrassing memories but one thing that we all were shocked with was the “Happy 21st Birthday Crystal Kuehl” on the Harrah’s Marquee Sign out on the Vegas Strip. There are no words to describe it, just tears of joy. Harrah’s Casino has never done something like that before. How did it happen? My wonderful mother (Shari Saari) had an idea to make her feel special. My mom has compassion like that. She wanted Crystal’s name in lights. There were phone calls, web site visits and emails. Thank You Harrah’s Casino! What a big heart you have!

Now getting back to Iowa late Monday night and heading to Rochester, MN made for a long day and night. Her appointment was at 6:00am on Tuesday. I had asked Crystal if she had been praying while she was in Sin City. She smiled and said I did last night. You know I found myself praying while I was there but really just thanking God for the weekend moments and letting her enjoy life. So I guess my prayers were more about being thankful then please make her all better. So I hope God knows I want both:)

Crystal had lots of tests. The three of us were very tired, only going on a few hours of sleep. Crystal thought it would be funny to take a photo after her CAT Scan when coming out to the waiting room and finding Rod and I sound asleep. Then she called us on my cell phone to wake us up. It put a smile on others in the waiting room. Glad we made people smile for the day. However, let’s not show the photo.

As we waited for our appointment with Dr. Que and her team, you find your heart racing. Wanting to hear good news and sitting at the edge of your seat listening for which footsteps will be the team of doctors to walk into the room. As they entered the room we were happy to see them and show them how great Crystal is doing. They were happy to see us too and showed us the new images of the CAT Scan and how they don’t see anything. That is right; they see no more tumors and nothing setting up somewhere else. It’s a miracle and we are elated with the news. Now on to more appointments for the day…

The next appointment was with the Genetics department. It is important to learn if Crystal has a gene that is called I-MEN. With the type of tumor Crystal had and if she does carry that gene they will have to watch her type of cancer closely for it to not carry to her brain and/or thyroid. We will not get the results back from that test for 6 to 8 weeks. We are praying that it is negative. Again, being patient is very hard.

We had another doctor’s appointment at 9am on Wednesday, with Dr. Rubin so after dinner I believe we were back at the hotel and in bed by 6pm.

It’s Wednesday morning, the weather is beautiful and we are ready to go home, first, Dr. Rubin. Our appointment was long, it was sad, it was reality. Crystal has a unique form of pancreatic cancer so there is no statistics with this type. If she had colon cancer or breast cancer they would have statistics for her but she does not have those types so there is nothing to go off of. She is a high risk that the cancer will come back. It can come back in 3 months, 6 moths or 2 years. Looking at the pathology report they have learned that her cells were aggressive and uncontrollable. The cells not only made two tumors in pancreas but they were trying to move throughout her body. They are shocked again with her age and not even sure if chemotherapy will work for her but if we do nothing they are certain it will be back faster. They are interested in the genetics test to help watch her through this journey.

Learning the reality, the truth, the painful words of not knowing if this will work is heart breaking. When they told us she would begin chemo as soon as she gets home the tears began. Crystal never thought she would have to go through Chemo. In her heart she thought she beat it. Matter of fact, in Vegas at the pool party on the red canopy bed by the water, Crystal said, “Thank you Mom and you know what? I think my cancer is all gone. I can feel it.” I looked at her and smiled. I said, “Your Dad and I would do anything for you and we love you very much. Enjoy your birthday one moment at a time.” I am so glad we took that trip. The fact that we listened to Crystal wanting to go to Vegas on a trip that we planned 6 months ago and not us as parents questioning if we were doing the right thing.

Watching your daughter cry is sad. Watching your husband who is in shock and trying to be strong is just as sad. Rod was the one positive after surgery where I was more realistic. So this time with tears running down my face I said, “We’ve got this! You can do this Crystal.” Her tears stopped. It was silent. I have no idea how Crystal feels. It’s her life, her journey, her feelings and as a mother it is sickening. For the next hour it was pretty quiet. But Crystal said, “Mom I am not going to cry about it. I am going to go get cleaned up and watch Courtney’s Senior Presentation tonight and eat dinner at Pizza Ranch with everyone as a family.”

Again, life goes on…. They don’t have any statistics on her. So no one knows what her outcome is. But I know that it’s my job to keep her Spirit Alive and Up….And I will do that for the rest of my life. She will be dancing again. It will be in Vegas with not just a sign but a show even if it’s only one time. Love You!

Uncle Bret gave Crystal his jeep for the day!

Things could be so much worse…

Written May 8, 2013 10:05am

As I sit in my kitchen to update my journal, the windows are open, the sun is shinning, the birds are chirping and I can hear the tv on in my bedroom, speaking of the updated news of finding the three women alive. I keep thinking about Saturday night at Crystal’s Dance-A- Thon, when I spoke and said at least I know where my daughter is. Things could be so much worse.

On Monday when they found those women, I prayed to God that I would never have to deal with that. I can’t even imagine that sick feeling of not knowing where your child is. Your child at any age. A loved one at any age. We all know that God is the only one that knows the plan. So I think what I am learning is to live life to it’s fullest. Each day like it was your last. Be thankful for what you have, it could be so much worse. And really we all need to be reminded of it daily.

As far as the Dance-A-Thon went…what a success. We didn’t get to talk to everyone but you could feel the love and support from all. There were approximately 700 people that attened. What a blessing. Thank You for the prayers, the support, the gifts, the donations and for the love.

I was just sick having to speak in front of everyone, the more I stared at the crowd the more I got nervous. I saw my gym teacher from high school in the crowd, Mr. Carver. I wanted to go talk to him so bad but had to speak first. Sad thing is I never did get to speak to him. As the crowd grew I knew it was time to speak. Crystal said, “Mom don’t cry, stick to the basics.” But as I was finishing up speaking, I looked over at my youngest daughter Cassidy, who is the jokester in the family, and saw the tears running down her freckled cheeks, I knew I was about to cry. So I turned and gave the mike to Crystal which then listening to her speak, stating that she is not dying, then looking back over at Cassidy, yes, I began to loose it.

The Spirits performed through out the night. Crystal and I dearly enjoyed that. The kids in the studio are full of life and smiles. It builds you up and you don’t even realize it.

One thing that shocked us was the Professional Dance Team. They gave us a gift. They performed in purple jersey’s. It was touching. Crystal and I love that team of women. They are our strength and our future. Thank You girls for being YOU!

The Dance-A-Thon raised over $15,000. It truly is a blessing and a humbling experience. Thank you…

Something fun to tell you. My uncle Bret has been a huge part of my daughters life. My uncle and aunt don’t have children so any free time they have had, they gave to my family. So, Bret keeps asking Crystal what she needs. Groceries, money, anything…So Crystal said, “I need your jeep!” And yesterday she got it. Crystal wants a jeep so bad. And a bright green one but Bret’s red one will have to do. I think she felt like a RockStar in it and even took it through a mud puddle. Yes, she is living life!

Crystal loves the Jeep! Wishes it was the color Green!

With living life, she has a big day coming up. May 11th she turns 21! The dance team and I, six-months ago booked a trip to Vegas for her. We have been planning that trip since October 2012. What we were going to be doing, wearing, who would be going, you name it, we discussed it. But on March 27th everything was on hold.

A week after surgery, we let Crystal decide on the Vegas trip. We knew the trip would be different but yet if she was wanting to go, than we live life to the fullest and enjoy the trip in a new way! We are going!

It will be relaxing. We will be with dear dear friends. She will live life to the fullest and appreciate the experience even more. But the kicker is we get back Monday night and we have to be at Mayo at 5:45am on Tuesday. So even though you are living life, you can’t help but have something in the back of your mind that about kills you.

I have asked Crystal how she is doing. I ask her so much she hates it. She looks great. Her Spirit is good. She said, “Mom I touch my stomach every day and say I am in perfect health. And when I do break down, I write in my journal.”

God is good.

A scare with Crystal

A Scare…

Written May 4, 2013 3:41pm

What a day we had yesterday….

I picked Crystal up around 12:30pm. We had some errands to run and then off to the studio for a little work. When I picked her up she looked tired and weak but when I asked her how she was feeling she said fine. I could tell by the answer not to bring it up again.

As we were working in the studio I could see she was having a hard time breathing. We were not doing much activity, mostly paperwork so I asked her why she is breathing so heavy. She said, “Mom remember when you had melanoma? And then after your surgery for a few years you could tell it was going to rain before it ever did rain?” I said, “Yes”. That was always a joke on the dance team. I would have made the perfect weather girl. Crystal then stated, “I think that is what I have. I think the weather is making it hard for me to breathe.” Well, I had to agree with her, I really wasn’t sure but I did get to state one thing to
her. You had a Spinal Headache, which was very painful. So, please Crystal don’t be tough this time, if something doesn’t feel right we need to figure it out. She wanted to continue with her day.

Crystal at St. Luke’s

When we were done with work we did a little dress shopping, something she has been so anxiously waiting to do. She tried on many many dresses which is hard to do when you have recently had surgery. Good News is she found a few dresses and they were on sale. But by the time we finished up and she needed to sit and then she said, “Mom call the doctor, I don’t feel right.”

Contacting the doctor I learned that she needed to go to the ER immediately to make sure there was no blood clot. Just thinking about it made me sick. I never thought of something like that. Crystal’s eyes grew big and she said she was not going to the ER. So…I made a phone call to my nurse friend, Michelle Lee. I put her on speaker phone which then convinced Crystal we needed to go.

Sitting at St. Luke’s I could tell I was going to start crying. It was stressful and scary. Crystal and I were both learning that this fight is for the rest of her life. And it sure can bring you down very quickly, if you let it.

As we sat there I reminded Crystal of the girl that had just told us a story about her situation. She said all of the medicine in the world won’t help you beat cancer if your mind, spirit and soul are not right there along with the medicine. You sure do hang onto those stories.

As the doctor was asking Crystal questions, I watched her answer them so kindly. So honest. So brave. Then the doctor turns to me and I begin to answer his question and then I lost. Crystal’s head turned immediately at me. I said, “I am so sorry Crystal, I really am trying.” Crystal said, “It’s okay mom”, then she lost it. The doctor and nurse were very kind and patient with us as we pulled ourselves together.

As we sat there in the room waiting on tests we laughed, took photos and talked about her future. She enjoyed the boys at the
hospital. One even recognized us as the CR Spirits and had seen us perform at Adventureland a few years ago. He said we are incredible dancers. That made Crystal’s night.

Great news our tests were good. She got to leave. But as a mom the worry is still there. I wanted to leave and was so happy but then found myself still not happy.

Today is a new day…we are looking forward to tonight. See you at 6pm at the Dance-A-Thon for Crystal:) Thank You again for everything…

Fundraiser for Crystal

Crystal Talks….

Written May 2, 2013 3:43pm

Well what can I say…we are living each day to the fullest! Last night was the Professional Dance Team’s practice. I had made a remark yesterday to Crystal that I was not going to practice and really didn’t feel like dancing. Yep, let’s just say Crystal flipped. She basically said I am dying to dance again, and you can, and your not? She was disgusted.

Honestly, I didn’t feel like dancing or making up any dance routines and if you know me, that would not be my character at all. I always am choreographing to some kind of music. Some songs I choreograph by just listening to it a few times. The funny thing is, I have no dance background. It was a gift from the man above.

So did I dance? Yes! And Crystal was right. It felt great. It brought me back to life. It brought the team back together. It put a smile on Crystal’s face.

You know one thing I have learned through all of this is how Crystal gives me so much strength. She is so confident. So proud. All of the years of teaching her wisdom, reading her quotes and talking about life I find myself intrigued with listening to her. She is my rock, and I am the mom. I am suppose to be her rock but I think we are each others. What a blessing. What a blessing that we can see that.

Here is a little note from Crystal:

“Well what can I say; it has been a crazy month that has gone by slowly. There is so much I have learned from this journey. And I can’t thank everyone enough for all the support, gifts, donations, and prayers. My family and I love hearing all the positive things you have to say. It helps keep me positive and right now that is all I can do.”

“Cancer is for sure something I never expected to get at the age of 20. It was quite a shocker and still is. I pictured myself graduating from Kirkwood this May and going to Mt. Mercy University in the fall, I saw myself this summer having no worry in the world and just being a normal 21 year old girl, but all that changed in a blink of an eye. It really makes you realize that life is short and you need to live every day to the fullest. Don’t just spend your day on autopilot. Every day you need to realize what you are grateful for and what you have learned in that day because you learn something new every day! Enjoy the little things in life.”

“Through this situation I have learned that I am so grateful. I have an amazing support system. Cancer isn’t the greatest thing to
get, but at least I can still walk, talk, and do the things I love. I still have two eyes, two legs, and two arms. And I am not dying I just have this terrible thing in my body called cancer and I will without a doubt make it through this!!”

On another note…We have a fundraiser this Saturday! Saturday, May 4th at 6pm! It is at Prairie High School. Where Crystal graduated from. There is raffle’s, a silent auction, food and a great DJ. The CR Spirits will be performing! It does cost $5 to get in but we sure would love the support. So if your not doing anything come out and dance or visit:)