It is finally Wednesday night, and I love Wednesday nights because it is the CR Spirits Professional Dance Team practice. This is one of my favorite nights of the week. I get to dance and have fun with some of the most amazing women is Cedar Rapids, IA. This Professional Dance Team has kept me going through some of my tough days.

About two weeks ago I was able to start dancing again and it felt sooo good! Coming back into the dance room makes me appreciate dance and the girls a lot more. I got to the point with my cancer where I was so sick I didn’t know what would happen next…”what if I could never dance again?” would run through my mind and I hated it. I told myself that someday I will get back
up and dance better than ever. I want people to know that with your mind you can do anything. After I had my major surgery I would sit in my hospital bed with no music or TV and I would just image me up and dancing strong again. And guess what…I am! I am stronger and better than ever. I have a whole new appreciation on life and I love it!

For now Chemotherapy is going well for me. I am a very strong and positive woman so I try not to let the tiredness and nausea get to me. Yes….I have my days where I just want to sit in my room and cry and yes….I have my days where I don’t understand why I got this nasty “C” word called cancer. But I know someday I will be done with this nasty cancer and I will get to say I beat it and now I am cancer free. I can’t wait for that day!

One thing the Chemotherapy has done to me is put tiny little sores on the bottom of my feet, which makes it hard to walk. So my mom and I went and got pedicures yesterday at City Looks….I think my mom is so worried about my sores on my feet that she started getting sores on her feet….no joke…she has sores all over her feet. No new shoes, nothing different…All I can say is…weird! Mom, quit worrying about me!

Now this weekend we have a special event we are going to. It’s the V Foundation for Cancer Research. I am so excited I get to be a part of this. 380 Companies is putting on this event in Riverside, IA. Dick Vitale will be here. My mom says he speaks so passionately. He believes in this research. Another cool part about this is my mom gets to speak! What an honor it is for her to be chosen to speak. She is so nervous, but I say she has nothing to worry about. You will do just fine mom! I love you!

Love, Crystal

Chemo Pills

1st Round Done!

Written June 14, 2013 10:39am

It’s Friday. “Oh how the week flies by” or should I say “Oh how life flies by”. Crystal has finished her 1st round of chemo last Sunday. How did she do? She did great! It probably helped spending a night at Penguins Comedy Club for the Crystal’s Benefit Night. Crystal said she laughed so hard she couldn’t even finish her pizza. I wished I could have gone that night but it was a weekend full of graduation parties. It was extremely kind on the comedy club to help raise money for Crystal. Thank You. Which reminds me…we have been working on sending out thank yous…If you have not gotten one, and would like one, please
let us know. We have probably sent out over 250, there are hundreds that we don’t of course know how to reach you, and we
still have lots to do.

In the last post, when I talked about the pill that she would be taking for only 5 days, and that it may get the best of her. Well, Crystal kept herself busy those 5 days and she told herself “I am not going to get sick”. Her attitude is amazing. We know it’s only the first round but hey, you have to keep that positive attitude, that hopeful feeling or then where would you be?

Taking these chemo pills I would say causes a little anxiety. You have to watch how you feel, making sure there is no fever, no heart palpitations and other signs that can occur during this time. So when your daughter says, “Mom, I am going to Chicago for the weekend. I can’t wait!” You immediately think, “You just started that pill for 5 days. We don’t know what your body is going to do with it. You will not be near the hospital here that knows what is going on with you. If all of sudden you were to get a fever or
something, where would you go. You are driving alone? You are tired and your body needs rests. Are you kidding me?”

It is my job to point these things out. I mean a parent’s job is look at the whole picture and shed some light on things your child may not see. But she did remind me the positive words that I tell my girls, “to live life, to travel, to enjoy” and with that she stated, “What do you want me to do? Sit on the couch and wait to get sick? To lay here all weekend and wait for something to happen?
Mom, you always say to live life that is what I am trying to do. I am not sitting here worrying about it. Besides I could die in a car accident!”

Now, as a mother I must say it is difficult to let her go, to let her live her life. I have always raised the girls with the attitude, to live, to dream and to go get what your heart desires. To live in the moment but before making a huge choice in their life, think of what that option could lead to in their future. I want them to not rush life, to live it, something I have struggled with.

I want them to surround themselves with positive people and to smile at the ones that bring them down, that is what I do. But now I have a daughter that has cancer, I would love to just lock her up in her room, here at home. I would be able to watch her every move and make sure she is not getting sick. I could protect her better. We know that is not going to happen. Even though I
want that, deep down inside I want her to live, to travel, to grow confidence and grow as a woman.

Crystal went to Chicago and had a wonderful time. She took her moments to sit when she needed. Did she feel ill? Did she feel tired? Yes and yes but she didn’t let that change her weekend. I am proud of her. Heck, I am even proud of me that I didn’t dwell on her leaving, I just let her live.

Now I must say when she came home, Sunday night. It was her last set of pills to be taken for this round and she was not feeling good. I knew it was bad when she wanted to stay here at home. Don’t we all getting a little more emotional when we see our parents or maybe a dear friend? I know I can stay pretty strong, but then there are those people in my life, I can hear their voice or see them, and the tears will fall. I am sure with a fun weekend she had it was nice to come home and be pampered. She didn’t have to be strong, she could relax. She could be Crystal.

Crystal has continued with as much normalcy as she can. She eats healthy. She drinks plenty of water. She listens to what the doctors tell her to do. Crystal surrounds herself with positive people. She continues to exercise. With that she has noticed she is getting sores on the bottom of her feet. It makes it difficult to walk, let alone dance. This is a side effect from the chemo she is taking. She can get sores on her feet, hands and in her mouth, which can be extremely painful. And with her just getting back on the dance floor, I don’t see her stopping anytime soon. Her goal is to perform this Saturday the 15th for the Crystal’s Benefit Ride. It starts at Double Inn at 9am, then ending at chrome Horse at 4pm, with a performance around 5pm. I sure hope her feet hold up because I know that her smile is.

On another fun note, Crystal and the CR Spirits Professional Dance Team just got done with their photo shoot at Read Photography. She didn’t have to be on her feet much for that, just smiles. A lot of things have changed this year in the Spirits that we had originally planned. We have moved our 20 Year Spirit Show to another date, lots of tears on this. Crystal would have to tell you how she felt on that choice that I needed to make. It was hard for me but I feel I made a smart decision. Plus our photo
shoot was cut in a half because we will wait for the full shoot for when we get ready for our 20 year calendar. You will
have to look for the posters this season. I am making a Cancer One, Cancer Awareness. Cancer does not discriminate; Cancer Sucks but it CAN’T Take Your SPIRIT AWAY!

Cassidy, Courtney & Crystal

Chemo has begun…

Written June 4, 2013 4:15pm

What can I say on this chilly rainy day in Iowa except we are trying to live a normal life.

It has been very busy here. Since my last post, my daughter Cassidy will now be a Junior in High School
next year. My daughter Courtney just graduated, she will be attending Kirkwood Community College, plus we just
learned that she got a $2000 Scholarship. Yeah Courtney! And Crystal has begun her chemo. All three girls are onto a new journey into their life story. I am very proud to be their mother.

When people say to me that I am so positive, I must say sometimes I think you just don’t know me that well. But then I think, things can always be so much worse. How great that my daughter Crystal got to see her sister graduate. That my three daughters could be a part of this graduation party and visit with our family and friends. That is a gift.

It’s so much work to get ready for a graduation party. I guess really any kind of party when you care. There is planning, cleaning, scrubbing, and organizing. I took a deep breath right before her party was to begin; I thought this a beautiful memory for my daughter, Courtney. I am such a perfectionist that I needed to tell myself, that I need to enjoy everyone here today too and not be stressed.

Getting ready for graduation you go back through so many photos of the girls growing up. Oh how those many photos I took, make you want to go back in time. Things that I thought were stressful back then would be a breeze today. Would I do things different? Yes, more family vacations. Yes, more professional family photos.

I have to say Crystal and I have had a couple of bad days. Let’s just say sometimes doctors can be so honest, brutally honest. One of those days took place at the dance studio. It was a Thursday night. We were trying so hard to get back to normal, that Crystal and I thought we could run everything just like we used to, but the tears began to flow. Replaying those doctors’ words in your head, your mind begins to wonder. And you begin to lose control. The parents in the studio were so kind and patient. Thank you…

To think of your child living until she is only 23 years old, breaks your Heart, your Spirit, your Hope. To hear your daughter at 21 years old wanting to freeze her eggs for possible children in her future and knowing at this time she needs to focus on her, makes you sad. Watching your daughters eyes as she is listening to the doctors tell her to focus on today, to live each day. Honestly, makes you lose your Strength. Then you have to take a moment, find yourself, and get control of the situation the best you can. Finding a game plan, talking to God, journal writing and finding something good in everyday is the best form of medicine out there. I am still a parent to three daughters and it’s my job to keep them going and to look at things in other ways.

Crystal started chemo on Memorial Day. Crystal takes her chemo by pill form. She takes it every morning with breakfast and every evening with dinner. For 5 days she will be taking another pill before bed. She will take chemo for the next 6 months, 2 weeks on and then 2 weeks off.

I must say when Crystal first took that pill, she was at her apartment and I was at home. It was in the morning, I was freaking out. I mean it is a pill that is going to possibly make her very sick. Ugh! I called her; I stayed calm and relaxed but kept asking her what it was like? She was like, “Mom it’s a pill. I took it and that is it”.

I guess I thought she was going to turn into something immediately. Or her personality was going to change or she would be sick right away. I have no idea what I was thinking. I just know I never wanted my girls to take any kind of medicine as they grew up and now my daughter is taking very very strong medicine.

If you were to see Crystal today, she looks wonderful, her Spirit is high. She has been on her chemo medicine for over a week. Crystal can sometimes get the metal taste in her mouth that you sometimes get with chemo and at times she is very tired. She has a very hard time waking up in the morning. Other than that, things are going rather good. Yes, she does have some big side
effects that may come up but for now we are hopeful she won’t have to deal with all of it. However, the next pill she takes may make her very very ill, she starts that Wednesday evening.

Last night at dance Crystal made the remark, I don’t want to take that other pill. You could see in her eyes that it bothered her but she was going to remain positive. As her mother, you smile; you look down and take a deep breath.

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:)

The night of prom Crystal, Rod and I went to the CR Fights. David Glover “The Nightmare” was one of the fighters. He was also helping Crystal raise money. I must say it was very hard for me to watch the fights. Then once I met David, he was so kind, polite and professional that I didn’t want him to fight. But when he did, we were all watching at the edge of our seats and he did awesome! A very good fighter. An exciting night. We only had one little incident, a gentleman that knew Crystal and knew that she had been sick but not to the extent of it, was so excited to see her, that he hugged her. A big bear hug, which lifted her off the ground with a little swing to it. YES, I had a heart attack and so did everyone else that knew of the situation. Crystal played it off well but was pretty sore after that. Remind you she has a pretty big cut on one side of her body to the other.

The next day, Sunday was a big day. Crystal was going to move back to her apartment. I was not thrilled about it. I got lots of advice from others that felt I shouldn’t let her go. However, Crystal wants things back to normal. She wants to take care of herself. She wants to feel independent again. And as a mother, I am proud that we have raised her to want those things. She loves her roommate. She has wonderful kind friends. They are all watching out for her and God is with her. I need to let her go. She is an adult and this will help with the healing process for all of us. Life goes on.

Monday was Crystal’s first day on her own. I would have to say it was her first set back from being home. She was in pain and felt very overwhelmed. It made me sad, I questioned myself on letting her go to her apartment to soon. The girl who couldn’t wait to get to the Spirits Studio for the day was not going to be able to make it.

I went over to her apartment for the day and helped her get settled back in. Having company seemed to cheer her up, her sister Courtney stopped by after school and took her for dinner. Crystal seemed in better Spirits when I left her that night. She even got to see her cousin Colby play soccer for a while. Which was nice to get her outside for some fresh air. She got to visit with her sisters and grandma too…a nice night.

On another note Thank You for the kind words in the guestbook on caringbridge, mail, email, and inboxes on the “Concerned Neighbor” letter. I don’t believe it is one of our neighbors:) But I must say it felt good writing that journal update with Crystal and we have enjoyed hearing from all of you.

Enjoy your day….

A Concerned Neighbor…

Written April 24, 2013 6:15pm

We have been home for a week. It has been wonderful and a roller coaster of emotions. The weekend was filled with catching up on sleep, laundry, work and getting ready for Courtney’s graduation. Crystal got to visit with some of her friends and share some laughs. Crystal’s Spirit is amazing. I actually got to visit with Paulette, one on one which was good for my Spirit. Plus Rod and I had dinner with Michelle and Jon which was a nice get away for both of us.

Monday was the day that Crystal and I were heading back into the CR Spirits Dance Studio. We were so very excited to get back to work. Just to get back to something normal and we were dying to see the staff, students and parents.

Crystal had to begin to get ready for work. And I must say that takes lots of energy. More energy than I think she thought it would take, but she was determined to go. Taking a shower, shaving her legs, blow drying her hair; getting dressed, styling her hair and putting on make-up was exhausting. At the same time, not doing that for over a week felt good to do. Crystal looked great. I can look back at photos from March and you can see a difference. You can see it in her eyes.

I really didn’t want Crystal to be at the studio when all of the students were coming into dance class. With Crystal not getting her vaccinations until May 1st, I felt it was important that she stay away from a lot of people but Crystal didn’t agree. Crystal was ready. And really, if I just put her in a chair and let no one touch her or come close to her, we should be good???

Here is a cute story. I go into the first Tiny Spirits Class ages 7 to 9. This is the class Crystal has been teaching for a few years. As I see the students are thrilled to see me, I state that Crystal is here. They are shocked! They are excited! I put the chair in the front of the room and I state when Crystal comes in here you cannot touch her or hug her, you will have to stay back. All you can do is look at her. As the one Tiny Spirit raises her hand and says, “Tiffany, will she wave at us?” Oh goodness I probably scared them to death. I was like, “Oh she can talk and wave and blow you a kiss I just can’t let any germs get around her”.

Well, Crystal was in heaven that night. She loved talking to her students. She did get to visit with a few parents but really stayed in my office so she could get the rest between classes. Crystal cannot dance until May 29th at this time but she still will be in and out of class and at the studio. Life goes on.

Crystal loved visiting with the staff/friends. She missed seeing them every day and every week. How lucky we are that the Spirit Staff works so wonderful together. That the studio was going stronger than ever before. We giggled that Amy. She is my niece, Crystal’s cousin and also teaches the Junior Spirits. Amy was filling in a lot for Crystal and had not had her baby yet. We had told Amy she had to wait until we came home to enjoy this experience with her. Amy said okay, and by the way, Olivia Marie was born last night. She really did wait.

Some of you have asked if Crystal has read the caringbridge journal. She has. Crystal has read everything. I asked her if it made her sad. She said sometimes but it is what I am going through. Crystal likes reading it. So I have asked Crystal to maybe put a little input in the journal with me now. She has agreed. It’s a healing process for both of us.

So what is the update? Crystal heals now. On May 14th & 15th Crystal goes back to Mayo. She will have more tests, scans and a MRI done. We will then learn what type of treatment Crystal will get. Has the cancer spread to another area, is the cancer back in the same area, is it more aggressive than they thought, radiation, chemo or will it be a miracle from all of your prayers? We sit and wait. It’s out of our hands. I hate cancer. I hate it.

Getting the mail has been fun. We get so many letters from all over. It is refreshing. I am big on sending a thank you and yet it is a little overwhelming to start at this time. To some of you, I don’t even know how to reach you but you have touched our hearts to say the least. Thank You.

The support is wonderful but we have had a couple bumps in the road:

One would be all of the people that our fund-raising for Crystal that we don’t know. We have heard from a lot of you on some companies, new businesses and events that are raising money for Crystal and Tiffany Kuehl with the CR Spirits. I cannot stress enough that if it is not our event or on our website (www.crystalsstory.com) it’s not us. I told Crystal that alone is frustrating. I feel bad for the people that recognize the name or the business and give. I can’t stop it. It’s out of my control. I will not go into some of the situations but you would be shocked. Heather my niece has done a fabulous job. I can’t express enough what a good feeling that gives my family that she is doing this for us. Love you Heather.

Another bump would be something that I have gone back and forth the last couple of days about. At first I wasn’t going to discuss it on here, I was going to save it for the book. Talking it over with family and most importantly Crystal, we decided it would be good thing to bring up. I am pretty sure we are not the first family in the world to have this happen to. It would be nice to know you are not alone. One thing about this journal is it helps you heal. All I do is write my feelings. I write Crystal’s journey through my eyes. If this helps me through this, just think if everyone kept a journal, it would help them too, through life.

I guess I need to state that I am a pretty open person. I kind of lay it all out there. I actually learned that from Oprah Winfrey. I went through a lot as a kid, it was a warm day, the windows were open and I was making my parents bed and this show was on. Oprah talked that how good it felt once you let things out. The more you talk about it, the more you can own it and take control of it. I didn’t do that right away but as I’ve grown up I have and she was right. It has taken a lot of my pain away and really I have helped others because of it. That is a gift.

I am not a huge religious person but I do believe there is a God. I believe that we are all sinners. I believe that we are not alone and that he is with us at all times. I believe in miracles and angels. I believe that my family and I are finding God through this difficult time and its okay. I am not perfect and lately have been pretty angry. Well at least I can feel it and God is with me. Hearing from all of you, reading all of your stories has helped us more than you can imagine.

God does not want us to judge others. We are all a little guilty of that at one time or another. Some people are terrible at it. And once they confess their sins they do it again, that is evil.

Crystal and I were excited to leave for work Monday. We got the mail and began opening all of the letters before we left. As I opened one and began to read it my head dropped, my heart sank and Crystal said what is it? I first wasn’t going to say anything to her I didn’t want to bring her down but then I thought I have nothing to hide. I am an open book so, I let her read it. She looked at me and said, “That is sick. Sick mom. Just sick. I can’t believe people. Don’t you throw away that letter you let everyone read it. This person is judging you and does not know you! They can’t even sign it.”

Crystal was right. This person has not walked in my shoes; they have not lived my life, my battles, and my abuse. They know none of it. They only know what someone has told them and we all know there are two sides to every story.

As we drove to the studio I kept going back through the letter in my head. I was in shock but I did want to reflect on it. Throughout my life and this current situation I feel I can stand by all my actions from infant to 43. I am not perfect but I could defend myself. Crystal noticed. Crystal noticed I was quiet, the strong girl going through cancer. The energy should be focused on Crystal not this letter. But Crystal again spoke, “Mom get that letter out of your head. Look at all of the good in your life. You choose family. Family does not judge. It’s stupid and I am not going to think about that letter or let it take our energy.”

Crystal felt it was very important to have her dad and her sisters read the letter. Everything has been up front so far so why stop now. Rod was shocked and furious. His words were, “If God is getting us back with Crystal’s cancer because of our past actions than I never want to go to church. I never want to open a bible.” Courtney was sick and angry. She stayed quiet with a few slide remarks. Cassidy wanted to scream it on face book. Crystal and I stayed strong and focused. We said to them this person perceives the bible differently. God is good. Hurt people, hurt people. Gossip is evil.

We have decided to post a copy of the letter. Crystal has said, “That is it. I don’t want us to respond to any more letters like this. And even though it was sent to you mom, we are a family, we have been upfront with each other and that is all matters. Not what others are thinking, not the people that have not been in our lives and now are out claiming how close we are.” Crystal is correct.

Copy of Letter:

Dear Tiffany,

I have been following your posts and am sorry for what your daughter has to experience. Since you’ve been spending so much time talking to God and going to the chapel I thought you might want to take out your Bible and read Galatians 6:7-8. “Do not be deceived: god cannot be mocked. A man reaps what he sows. Whoever sows to please their flesh, from the flesh will reap destruction; whoever sows to please the Spirit, for the spirits will reap eternal life.”

It is ironic that you have alienated and hurt those in your family and now you are going through a living hell. Perhaps it is karma or a sign from God. What goes around comes around so please think about how your actions in the past helped create the circumstances you are now facing. Before you begin preaching kindness and how you found God maybe you should seek forgiveness and reconciliation. Only God knows what’s truly in your heart but your actions speak volumes to those who know you.

A concerned neighbor

Crystal’s Benefit with the CR Spirits as guest bartenders!

We are home!

Written April 19, 2013 11:33am

We made it home! Crystal was so excited to be coming home but was a little nervous about the car ride, which went just fine. Yes, the bumpy road caused a little pain but hearing the rain hit the windows put her to sleep.

All she had talked about was going to the Professional Dance Team’s Practice that night. She just wanted to see everyone. She wanted to laugh and smile. She wanted me to tell the stories to the team. In truth, I wanted to go just as bad. I needed a hug from the girls. Support from the Spirit Family. Being in that dance room gives you such a positive feeling. Seeing their smiles, feeling their energy, looking into the eyes of each girl you can feel their love. That team is special. It makes you strong. Crystal and I needed that.

We came home Wednesday afternoon to flowers and pizza from Bret and Michele. It was nice. You could see Crystal was struggling with eating and her pain was settling in. As the day went on the more tired we became. I haven’t been home for a week and there is so much to do. We are not going to make dance.

However, Crystal’s roommate (Teal) called and asked her to go to dinner around 7pm. Crystal didn’t think I would let her go. You know sometimes you just need that dear friend to help you laugh, giggle and help you forget everything. A good friend helps you look towards a positive future and maybe get you to eat a little. I thought it was a wonderful idea. Crystal had the best time.

You would think being home, back in your own bed you could sleep? Nope, Crystal was up. Lot’s of pain. Lot’s of gas pain. We were up from 2am-8am. Very long night. By the way, we tried an idea off of google. Swallow two tablespoons of mustard with warm water…Rod and I watched Crystal like she was a guinea pig. It really did work in 15 minutes. The Internet idea worked! We were all laughing. Crystal is doing wonderful now.

That night was hard because Crystal was in the mood to chat and some of things she talked about surprised me on how she feels. She talked about death and how she will haunt me if I don’t take the Spirits to another level. If I give up on myself. If I don’t write the book that she has wanted me to write for 3 years. She stated that sometimes she thinks she might not make it through this. That she asks God why me? I am good. I have not done anything. I am not mean to anyone. But then she thinks there is nothing she can do to change it, so I just need to get over it. It is very hard to hear Crystal talk like that. It is so honest. It is so heartbreaking.

Now last night was a benefit for Crystal. A lot of people asked why it was in Alburnett. First of all, that is where Rod and I went to school. It was our old stomping grounds. The Spirits have performed pretty much the last 20 years there at the Alburnett Fun Days. Plus, Rod’s whole family is from Alburnett.

Crystal was very depressed that we would not let her go. We knew that Mike’s would be crowded. She really would not be able to hug everyone. And to top it off, without a spleen and not having her vaccinations she could get sick really fast. And next month we need her strong so she can fight. Rod and I debated on going but with no sleep the night before, the stress of work and not wanting to leave Crystal, we chose to stay home.

We did get many photos of the night. We even got a few stories. We don’t know how to thank everyone and really I’m at a loss for words. Thank You. Thank You. I heard from many of you. Just in tips you raised for my family $8358.00. I can’t tell you how wonderful it feels and yet how guilty you feel. Rod and I are struggling with asking for help. It’s almost like you are embarrassed but yet you need it.

www.crystalsstory.com is the website where you can donate, get involved or see when the next fundraiser is. Crystal should be able to attend the one on May 4th. That is our goal.

The world has so many bad things that happen in it but yet the world has so many good people in it. The good will always out weigh the bad.

Written April 16, 2013 7:16pm

Crystal is coming home Wednesday! But guess what, she was doing so good, that as long as she would stay at the hotel here in Rochester with me tonight, she could leave the hospital this afternoon. Then if everything goes good at the hotel she could be on the road to go home tomorrow. Can you believe that?

So today, she got cleaned up, put on her “Repaired in Rochester, Home of the Mayo Clinic” T-shirt that Rod and I got her, did some paperwork, got her
medicine, said good-bye to everyone and went to lunch. Came back to the hotel and took a nap, not sure if Crystal is taking a nap or sleeping until tomorrow she is still out. I am just happy she is here.

Look how fast things change. Life changes in a minute. God does little things for you that you don’t even know are a gift until you are looking back over everything.

The weather here has been terrible, cold, snowy and ice. Today the sun was out. It was warm. Do you know why that is a gift for me? Because I had to take three trips of personal items and gifts back to our hotel before I could get Crystal out. I have no car here so I had to carry it all. Then I worried how I was going to walk Crystal that far. She had not walked that far yet and I wanted her to take the cross walk which would add a few more steps for her…It was a beautiful day to enjoy. Thank you God. The weather was another gift today for us.

I was also happy for Rod, Courtney and Cassidy they learned of Crystal getting to leave and they were thrilled. Rod hated that he left that night but with work and two daughters having school he had to go. If he knew how bad everything was going to get he would of never left. I bet he felt even more helpless than me and even worse he probably felt guilty for leaving. I called him every minute to let him know what was going on so he could feel connected.

Before leaving the hospital Crystal had to hear some news she really had heard before but probably understood it more today. I am so glad I already had my breakdown episode on this and my mother was there to talk some common sense into me. Remind me that I already knew this information and that is why Cancer is ugly. It can come back. Crystal has learned that now she will still have to watch her blood sugar level because while the cells begin to set up again a tumor may form. That the cells are settling while she is healing and they are not sure where they will go. Next appointment will be next month. Crystal was learning the information and looked at me to see my reaction, I was strong and said that is why this is the beginning of your fight, our fight. Now I know why my breakdown was on Tuesday the 9th.

I am so very gratful for all of my friends. I have heard from grade school friends besides my high school and college friends. And what would I do without my dear friends today. What would I do without these nurse friends! Every message and post I have read has brought something to my life. I have read some of these messages over and over. Thank You. Thank You God for letting me see that those things are gifts. I always knew that my studio was a gift. That the women and students I get to meet over the years has made me the woman I am today. It is just wonderful to be able to share this all with you.

Thursday is Crystal’s first fundraiser benefit. I think I get my t-shirt tomorrow…YaY! www.crystalsstory.com is a website you can go to see how you can get involved. Thank You Kevin for that. I have the best friends anyone can have. My whole life they all have helped me see the light which helps me help others to see the light in their lives too. It’s a circle, a circle of life:)

Crystal hoping to get better fast. So much pain…

There is light…

Written April 16, 2013 9:48am

After my last journal things got horribly worse. It was the worst night we have had.

As I thought she was asleep and prayed everything was going to be okay, Crystal woke up in pain again. Crystal had 3 terrible head/neck attacks which caused her to vomit 3 different times. The pain was so much for her, it was like she was passing out. She was scared and I was scared.

Around 1am in the morning I had enough. I was beginning to lose it. So, was Crystal. I remember getting the nurse and saying what do we do? Is this it? We just take the pain? Crystal is rating her pain a 9 1/2 and there is nothing we can do? She is out of her mind. She is twitching. She is acting different. As that nurse looked at me like I was crazy. Like I needed to lay down….

Hmmmm Let’s see nurse, you have not been in here all night. You came in once and told her to calm down. You asked me if I have tried heat? Ummmmm Yes, How about ice? Yes. It’s just a muscle spasm. Is it? Because like I said before if it is something medical I am going to be upset.

What was my feeling? I started analyzing the meds. She never takes meds. She does not like putting things in her body so I thought it has to be the narcotics. I then started analyzing the last four days but I kept going back to the epidural. That epidural coiled inside so I felt it had something to do with it. I am also smart enough to know that if I act like I know what it is, it will get me nowhere but I could become more of a advocate.

I went to the nurse who I have only seen twice that night. And stated get me the doctor or take her to the emergency room. Call him now. But the nurse looked at me like I was a bitch, went to my daughter who is rolling all over the bed and moaning and said, “Crystal, Crystal is the pain so intolerable that you want me to call the doctor?” As I thought to myself are you shitting me? I am her Medical Power of Attorney; she is out of her mind. It is almost 2am and we have been doing this since 5pm. Crystal screamed, YES! A muscle relaxer drug was given to her which knocked her out.

The sad thing is whatever that nurse tells the doctor, that is all that doctor has to go on. So if your nurse has no common sense has no passion, no character and has forgotten how people feel because she is numb to the job…then good luck!

I called my girlfriend in the early hours, Michelle who is a oncology nurse. I asked her about Muscle Spasm, told her about Crystal’s behavior…she said yes muscle spasm are common, but have they thought about the epidural, that could be causing this headache. I said that is exactly what I think.

As the doctor came in and talked with Crystal he said he felt it was a muscle spasm and he was going to go over something’s with the team of doctors. Soon they would all be coming in.

As I snuggled next to Crystal in her bed and I rubbed her neck, she was finally relaxing. .Dr. Que and the team, who I love, walked in, looked at Crystal, said the pain she was in was caused from her Epidural; we are going to get rid of that headache. That was
it. When they left, Crystal and I shared a smile and she said mom you were right. We even giggled a bit. She asked me to snuggle back in bed with her and rub her neck, she was sound asleep.

I called my other girlfriend, Rachel who is a nurse. I asked her what to do until the next team of doctors comes in to fix this. Rachel said to keep her flat. Don’t let her get up. You know, no one told me any of that here. I realized Crystal has been relaxed, the muscle relaxer helped but she was lying completely on her back with no pillow, the bed was flat as well and I was snuggling with her which kept her not moving. That is why she could relax. WoW! If I would of know that sooner.

I sat next to Crystal for the next 3 hours and never let her move, if she opened her eyes I told her to lay still and flat and go back to sleep. I then found myself not letting anyone come in the room. No cleaning, no sponge bath, no looking at her scar, no vitals. I was her guard so she could relax. I got to meet the next shift nurse…I don’t even want to go there. Let’s just say this, if you know
what she has, why would you want her to get up out of bed? Crystal has not had any good sleep and now that I know what to do and what it is, no one is waking her up until this is taking care of. Let’s just say God gave me strength, he gave me the power to speak up and say no. And that is difficult when professionals in this field think you are just a crazy mother.

Crystal getting a bear for the ride…such a smile with so much pain.

Crystal had to be transferred by ambulance back to the Mayo Clinic to have this procedure done. I told Crystal it’s common and a lot of women have to go through this and let’s just pray that it fixes it. You found yourself praying and being thankful to be able to fix a headache and forgetting all about the cancer.

Crystal in the ambulance

It worked! The headache is gone, her pain is controllable. She is eating, walking and laughing. She is
tired but enjoyed visiting with her dear friends the Pond’s. My uncle Bret and my mother were also here today to watch her become Crystal again. I would never wish any of this on anyone. It was nice to see some faces after that night alone.

The doctor felt we both needed rest and I should go back to the hotel and sleep. I made it clear I will see who the nurses are that are working and I will discuss it with Crystal. I loved the nurse! Crystal and I both agreed with the doctor. It was our first night without each other. First I told Crystal I will leave at 7pm, okay? Then she said what about 8pm? It ends up being 8:30pm.

I have yet to see her this morning but she did text and has been sleeping. I can’t wait to see her. It has to be better than it has been.

Even though Crystal is 20 years old, watching her go through all of this, learning to get up out ofbed and walk, watching her go through the pain that was worse than her surgery, it reminds me when she was little. Her little toddler face with her big eyes
looking at me for comfort. The smile she gives when she is trying to be tough. Last night she hugged me tight, she wanted to
hold my hand, she wanted me in her bed, and she snuggled with this turtle stuff animal that my mother had gotten her. It really does make you wish you were back in time.

Is this the beginning?

Written April 14, 2013 6:31pm

After the night we had I was not sure how the day was going to go. The nurse in the morning asked Crystal if she could eat anything she wanted what would it be? Crystal responded Bruegger’s Bagels, so that is what she got. And Crystal, Courtney and Cassidy sat eating bagels and watching a disney movie, “Tarzan”. The first time I have seen Crystal not only eating but watching tv. It was nice to see. Disney Movies let you be a kid again.

The doctor had come in and we went over Crystal’s game plan. We are hoping to see her go home on Tuesday. She will have a doctors appointment next month. She needs to heal before her next set of tests and treatment, which we still do not know what that is.

Her form of pancreatic cancer was called a Insulinoma. It is a slow growing tumor. There were two in her pancreas, which they took out. I believe they took three tumors out of her liver and burned the ones they could not get to. They also were in her lymph-nodes which they took. The spleen and gall bladder were removed too.

Once she heals from this form of treatment, we go back for tests. This gives Crystal time to heal but also time for her cells to get back in order. During this time they will be able to determine if more tumors have spread through the body. This is when we will learn what our next game plan is. So yes, I am learning patience and I am not very good at it. I hate cancer.

With all that being said and trying to stay positive, we decided to go for a walk to the chapel. It was of course beautiful but Crystal was starting that same spiral downfall as she did last night. So back to her room we went.

Rod and the two girls were getting ready to head back home as I got back to Crystal’s room she was up pacing…

I was surprised she was up and by herself. As I smiled at her and said, “Oh goodness Tuesday is coming here fast”. She started to cry. “Mom, I am in so much pain. Why? Why me? I am scared Why is it in my head?” My heart began to race, what does she mean in her head? You mean all over? I was in shock. I pulled myself together and thought don’t lose it Tiff, she needs you more now than ever before.

She rolled on the bed like she wasn’t even cut open. Breathing like she was in labor. Her head was killing her and so was her neck. I called the nurse immediately. I stated she has never ever acted like this before. She has never had a migraine! She didn’t even have a headache in ICU. So if there is something with that epidural or something wrong and this headache is the sign that she has had for two days, they better not be missing it. To many medications? No food? Muscle spasm or not. Watching your child scream in pain, and not be the pain you think she should be screaming about. It is a helpless sick feeling. I would not wish that feeling on one person.

I looked at Crystal, made her grab my hands and talk to me. I told her to moan, scream…the one nurse was calm which kept me stable. They gave her some medicine. Crystal and I watched the clock, in 5 minutes she calmed down…was it working?

She laid down, I talked with God and asked are we ready for this? We really can handle this? Is this just the beginning? Then I heard Crystal say, “mom bowl” and she was throwing up. So if she is not feeling the pain from her surgery because of her head/neck well in a few hours you will be feeling your incision. It’s one thing when you go through it, it is another when it is your child.

Needless to say I have her in bed, she is asleep. Crystal has moved once and opened her eyes to see if I am still here. What do people do without someone they love deeply sitting next to them?

Is this journey we are on for all of us to make the world a little more kinder? To remember that we are not in control? To live the life we have to it’s fullest and with passion? To teach a few of us that believing in God is a good feeling? Still no answers…I am not in control. I need to keep working on patience.

Needing more strength…

Written April 14, 2013 9:44am

The last couple of days have been rough for Crystal. Lot’s of pain, feeling nausea, backache and a terrible headache. She wants to walk but when she is up, she is very dizzy and with her other symptoms, she really just can’t do it. She sleeps but not a good sound sleep. And has only ate a few soda crackers so far.

Crystal has begun to tear up. Frustrated and sad is how she feels. You can see it in her eyes. There is nothing I can do. And I think to myself, as she tries to not throw up and wants everything back to normal, we still have a road ahead of us. I find myself realizing how much stronger I am when she is strong. I guess we are all a team like that.

She took a shower early early this morning. All her little bruises all over her body from her shots made me sad. I told her you are so strong Crystal, so much braver than I ever could be.

Today are goal is to maybe get her out of the room and visit the chapel. Try a little food. And visit with her sisters. My uncle Bret brought them back to Rochester yesterday so we could all visit but there was no visiting. Her sisters didn’t like seeing her that sick and sad last night. With all this going on I have not really gotten to talk to her sisters like I usually do. I know they have been bothered by somethings but have tried to hold it in so no one else is bothered. They need sometime with just Crystal too.

Saturday afternoon all at different times, Crystal got to see Paulette, Michelle, Jon, Heather, Kevin and the boys. Crystal was not feeling the best and was given some medicine that made her sleep but I must say I enjoyed visiting with them.

A nap helps…

Written April 12, 2013 5:48pm

Crystal and I took a nap today, that sure helped. A little bit of sleep does wonders. Also, speaking up in a polite way, on issues that bother you or concern you makes you feel good. It may never change, common sense may never be there, but if you hold it in and don’t say anything, you won’t be able to let it go. I guess that is life in general.

I brushed Crystal’s hair, I am sure she would of liked her sister doing it instead. Got her teeth brushed and a little lip gloss on. She has a few skype calls tonight….YaY!

Talked with Dr. Vatsaas (Cory) today. He is one of the doctors on Dr. Que’s team. We see him usually twice a day. We had talked with him the night she was out of surgery. He was good at explaining everything. He took the time to make sure we were okay. And came with us to see Crystal. A good doctor. He is funny, kind and Crystal seems to pick on him the most, wait he picks on her too. Whatever he tells her to do, how many times to walk or cough, she really listens and does it. He wants her out of the hospital and back to dancing too. He did tell her it would be awhile for dance but that she is doing great so far. Maybe if things keep going good she will get to go home early next week:)

Also, I saw her scar, it looks great but it can’t see the sun this summer. Crystal has no desire in seeing it but really I think it looks wonderful. What a fighting story it tells. I believe that story is when we all found God. So that story needs to be told.

Another thing about the chapel. When I brought it up in this journal on an earlier post, I said it was beautiful and peaceful. I was also going to state, I wonder how many people that work here at Saint Mary’s have never seen it? Well, I thought that was silly thing to say but I found myself intrigued to find out. I thought if I were to ask, lets say three people, who has seen it, I wonder what they would say. Well, with a cute smile one said I have not seen it in years not sure if I know where it would be at, but did say the marble is beautiful in there. Then I asked two of the student nurses who have been working here for over a year, they have never seen it? After I explained my story and what the chapel looked like, they were going to visit it after their shift. YaY!

Rough Day…

Written April 12, 2013 10:25am

As I sit here in Crystal’s room on the cot they have given us so we can stay here with her, I begin to think of this busy morning. Crystal right now is asleep.

I would say Crystal’s rough night has went on into a rough morning. It is day 3 so the pain she can really feel. Yesterday she was so good, positive and probably over doing it. Today she feels it. And with no sleep comes tears and emotions. Trust me…

She feels like she can get sick and wants to sleep but the machines keep going off. People keep coming into her room, Crystal is polite but I can tell she is just about at her end. Which makes me grumpy. Yes, mom mode sets in. I went to the nurse, said she is not walking until she sleeps, she can’t sleep because the machine keeps going off because of her oxygen? Fix it. Door needs to be shut. Now this is really our first day out of ICU and yes, it’s been good but the nurses in

the ICU were so passionate with Crystal not that the nurse here today is not…but the nurse and student nurse are young, so a little different personalities. I am all about learning and with age comes confidence. However, it’s my daughter so I am a little fussy. And we all know there is no class for common sense but I think there is a manner’s class? We take the fluid, making sure her pancreas is not leaking and we forget to label it? Hmmm that would be a big deal but to find the good in this situation…She was kind and said the truth, I didn’t label it. So I need to get more. Okay:) And then the student comes in 30 minutes later after I said she needs sleep, she has not slept and wants to give her a bath??? Get the freak out! Yeah, I am not leaving this room today.

Rod has been wonderful with Crystal. He is always wanting to get her to drink fluids. Rubs her feet. He is so concerned that no one is pushing that pain button when she sleeps. When he is in here and she is sleeping he will push it for her, when it shows it’s ready. I know it bothers him when everyone leaves to grab something to eat and we know she is going to rest, he wants to know who is going to push it for her. He’s even told the nurse to stop in and push that button. To walk, cough, sit up and take deep deep breaths she will do for you, if she is not in so much pain. Stopping with the pain meds for a bit, makes a difference.

By the way, the Chapel here in Saint Mary’s Hospital is beautiful and peaceful. Never would I have dreamed that this was in a hospital. I am hoping to wheel Crystal down the hall this weekend to see it. Walking might be to far for her at this time.

Crystal’s 1st Benefit!

Room 1-107

Written April 11, 2013 8:16pm

YaY!

Today has been a big day for Crystal. Lots of things she has to work on. Watching her cough, you can see how painful it is in her eyes but the fluid has to get out of her lungs. To get the fluid out you have to cough and cough. Plus get moving, which means walk and walk. She has had little set backs but has moved forward. She keeps talking about Vegas and her birthday. I think all of the nurses and doctors know of this 21st birthday.

She got to talk to her roommate, Teal today very briefly and I know she did a few snapchats. I thought that was wonderful to see her look at her phone again.

Some exciting news today. We learned that there is a fundraiser happening for Crystal and our family. I even saw the t-shirt. CUTE! We hope you can attend. Not sure about Crystal making it but she sure will be there in Spirit.

It is at Mike’s in Alburnett. Alburnett High School is where Rod and I went. The Professional Team will be guest bartenders on April 18th from 6 to 9pm. I must say Crystal believes she is going. Whatever makes her happy. As her mom, it’s so kind that people are helping or even wanting to put something like this together. You feel surprised, loved and then almost like guilty…I am not even sure if that is the right word maybe more like anxious. Thank You in advance. I don’t know how we could ever repay you.

Some more big news today she got into her new room! No more ICU however, it was difficult saying good bye to her nurses (Diann & Jess). Her new private room 1-107 is cozy. She was excited about this move but with all the things she worked on today, plus the big move she was extremely tired. When I look at her tonight. I see a very tired girl who needs to sleep and I hope she can get more tonight than she has had.

I miss her sisters tonight. Courtney and Cassidy went home, they have school and activities that I don’t want them to get behind in. It is amazing how life goes on. Everything around you just keeps moving forward and just for a little bit you want it to stop.

Crystal in ICU walking

Fluid in the lungs…

Written April 11, 2013 11:39am

Today has been a good day. We all got some good rest last night. Crystal was up and walking today. We are still in the ICU. The doctor ordered a chest x-ray yesterday and we have learned that there is fluid building up in her lungs…So we are now working on that. Because of the problem with her epidural, she sure can feel the pain even more. But she is so quite and polite.

When I was pregnant with Crystal, being my first baby, a dancer and knowing that my mother’s pregnancies were easy, I really felt when she was ready to come into this world, it was going to be easy…NOT! She had no desire in coming out. After going into labor at 3:30am, pushing for almost 3 hours, emergency c- section…Crystal finally came into this world at 10:37pm. The nurses at St. Luke’s said, we have never seen a more quiet and polite patient…I think really it’s your scared to death:)

I asked Crystal first thing this morning, did you pray last night? She said she did and she prayed for whomever is next door. She is still thinking of others. I am so proud.

While we were walking around the nurse’s station, a nurse was saying how they have never heard of a 20 year old having this type of cancer. That her story in this hospital has moved a lot of doctors and nurses.

Crystal is up

I’ve learned that Mayo is where the Kings and Queens come if they have a health issue:) Actually, one of our doctors stated people come from all over. He told a story that one of his patients flew on his private plane and went to Rochester, NY. When he called the doctor and asked, “Where is the Mayo Clinic?” The doctor said are you in NY by chance? The doctor said you think they would of googled that first. No one thinks that the #1 hospital is located in MN. What a blessing it is to have that hospital only 3 hours away from us. Which when you never knew you would of needed it, you really just take it for granted.

She feels God has been with her…

Written April 10, 2013 5:14pm

Sitting here in the ICU it is so quiet. I stare at Crystal and watch her doze off and on. You find yourself asking her if there is anything she needs? Over and over. She has no desire to look at her phone, get out her Ipad or even listen to music. I asked her if she would like to watch tv? She answers, “No”.

One of the first things Crystal said to Rod and I this morning was where are my sisters? Well, they were coming but we were trying to let them sleep. My mother (Shari), Bob, Bret and Michele have been up here with us the whole time. Taking turns visiting with Crystal and helping entertain her sisters. Lots of puzzels and card games. Plus my uncle Bret is celebrating his birthday today. He had prayed to God that the surgery was not on his birthday. God granted it.

After taking sometime to read some of your messages I must say I began to feel better. Your thoughts and words were inspiring to me. I was thankful that I had those things to read during this time, so I could find myself again.

I started thinking of what I tell my daughters, friends and spirit students. Always find good, even when it is bad. I started thinking of the little babies and toddlers with cancer, I thought at least Crystal is 20. I thought of people who die in a car accident, I thought I am so glad I can hold her today. I thought I am so fortunate that I know where my daughter is at this moment. She has not been abducted. I am not here crying because we don’t where she is. Is she alive or dead, being abused or locked up. Things could be so much worse. I found good today.

Crystal with her smle

Crystal at this moment has sat in a chair three times, has removed two IV’s (one in her neck and another is her wrist). She still has two more though. The tube in her nose and throat was also removed. She had to get the epidural out because it had coiled in her so it was removed the minute they learned of it. Lot’s of pain, still in ICU, still lots of tubes but we get to hold her hand.

I asked Crystal a little bit ago. When it is this quiet in this room and no one is in here, what are you thinking? She said “I think I am going to live through this and I pray to God” I said, “You pray?
Do you feel him? Do you feel like he has been with you?” She said, “I do mom, I do”.

I believe that their is something higher than all of us. It wasn’t until I was much older that I truly believed it. But listening to my kind hearted daughter who has been trustworthy and upfront all her life…I feel he is more with us than I have ever felt. Thank you for giving me the gift to believe.

Crystal is awake…

Written April 10, 2013 10:44am

Crystal is awake and looks wonderful!

It was a very long night. One of Dr. Que’s team doctors came and spoke with us around 7:15pm…I believe we got to see Crystal last night around 7:30pm. Over 12 hours of not seeing her…It was killing me, it was killing everybody.

The doctor stated she looks good and was emotional before surgery but usually that is caused by nerves before the procedure.

Seeing Crystal hooked up to all of the machines and tubes running all over her body was scary but she was there fighting away. That gave us relief. We got to see her, touch her and let her hear our voice. We even got a few smiles from her. But she was tired and wanting to rest. The team of doctors still wanted to see her try to sit up and walk sometime that night.

It was hard to leave her in the ICU but what makes things easier is knowing how nice and supportive everyone is here. It is very comforting. It is nice to see others passionate about their jobs.

Yesterday was a rough day emotionally but today is a new day…Crystal is still in ICU, hooked up to a lot of equipment. Lots of tubes. She is sleepy and in pain but she is taking a lot of meds to take care of that. We are starting with apple juice here soon and hoping to get her out of ICU:)

ICU

Written April 9, 2013 5:14pm

Things sure change fast. I was feeling pretty good. We got her room decorated with the things everyone has given her, got her personal items all in her room. BOOM! 2:45pm came and the nurse tells us she will be going to ICU. Your first reaction is why? They say, it’s just a precaution.

We have to get her things out of the room, load up everything and go to ICU 7th floor. I must say as we are grabbing the stuff animals, balloons, photos and her personal items, your mind begins to run. Everyone is being polite, it’s so quite. It is like a dream. During the ride up the elevator the nurse says maybe you should go to the chapel. And then you wonder, does she know something? Is something happening that I don’t know about.?

Getting into her new room, putting her things away, my phone goes off and it is the surgical nurse asking us to come to 1st floor to meet with the doctor. I can tell you, it is the most sick feeling I have ever felt. My heart is beating so fast, so very fast. I was thinking more like 5pm and now everything is so rushed. I left everything in that room, just left it sit. Rod and I leave thinking the same thing, is this good? Or is this bad?

Sitting paitently in this small room with no windows felt like it took hours waiting for the doctor, when really it only took 10 minutes. I could feel my heart beating out of my chest, I felt like I could faint, my leg wouldn’t quit shaking, I could feel my eyes filling up with water and I knew nothing. So why was I freaking out. Rod was just as nervous he kept looking out the door thinking he would see something, he kept taking deep breaths and said, “I just don’t know”. That was probably the worst part of all of this.

Our surgeon came into the room and explained Crystal looks good and was doing good. My eyeswere full of tears of relief. We learn that there was more disease than they thought. There were two tumors in her pancreas. Plus her lymph-nodes had the disease as well. But our surgeon believes she got it all. She got it all! With that being said they are not sure what her treatment will be after surgery. In most of her cases you can’t get all of the disease so we are in a good spot that our surgeon feels that she did.

Her scar is above her belly button it is like an upside down smile. No, I have not seen her yet.

Now the reality comes in, she is only 20. You can’t cure cancer. It is a very high percentage she is going to get this again. This type of pancreatic cancer that Crystal has is slow growing. The other type is aggressive and grows extremely fast. So, she got the better one plus they feel there is a good chance Crystal has had this for maybe 5 years. Not that this is new information to any of us but with no sleep, trying to be strong and realizing that Crystal will have fight this fight over and over is depressing. Any of my strength was gone…

I cried like I just learned she had cancer. I couldn’t find one positive thing. I couldn’t even be happy that our surgeon believed she got it all. I was thinking how long 2years, 10 years, 20 years? How long does she have until it comes back. What are her sisters thinking? What happens if we lose her? That positive Tiffany you think I am, she must of left.

It’s now after 6:00pm, I’ve cried, I’ve been lectured too, I’ve gotten mad and now I am writing to you to hopefully get this all out of my head so when I finally get to see my daughter, even if she can’t see it and she is out of it, she can feel that I am smiling and thinking she really is going to live life to the fullest…

Tim McGraw song says it best…Live Like You Were Dying. Yep…great song.

Gosh…I can’t wait to see her…I talked with the doctor around 3:15pm it is now 6:20pm…Give me strength, Give my other daughters more strength…

6 Hours….

Written April 9, 2013 11:22am

We have moved to Crystal’s room. Her private room. Get this, it’s Room 1-121…They must know she is going to celebrate her 21st:)

It sounds like her surgery is going to last 6 hours, starting at 9:17am plus she will have an hour recovery time…So maybe before 5pm we will see her…

They have gotten the tumor out of the pancreas as of right now.

Her brilliant surgeon is Dr. Florencia Que. She is working the talent God gave her hard today, I can feel it.

Surgery Just Started!

Written April 9, 2013 9:22am

I hit post on the last journal update and then they called, they started surgery at 9:17am…

The waiting begins…

Written April 9, 2013 8:08am

We had to be at Saint Mary’s Hospital by 5:30am. At 7:52am Crystal was on her way to the OR. Now, the waiting begins…

We had a wonderful sunny weekend. Crystal got to celebrate her sister’s birthday with her. She got to spend her time with many friends and had lot’s of company that dropped off wonderful cards, gifts, food and their blessings. You could not ask for a better weekend before the crazy week were to begin.

As a parent it has been hard seeing everyone. Seeing my high school friends and hearing them talk, brought tears to my eyes. That was the first time outloud I complained and asked why me…Why do I have to live this? Why do I have to go through this with my family? Why do I have to be strong for something else again? The cards that I was dealt in life, I always prevailed, made the most of it and at times that was very difficult for me, now this…my daughter. Why?

As I cried, I immediately felt guilty because it’s not me going through it. It is my beautiful, bright, talented daughter. Who is positive and gives me strength. This is her life that is going to change.

How dare me be so selfish…I must say Thank God for friends, they build you up, they let you know it’s okay to complain and be angry.

We have heard from so many of you, I thought I would share.

In our neighborhood, Rod and I have a few close friends. However, life is so busy and really we keep to ourselves so we don’t talk to much but maybe a wave. But we started hearing from our neighbors and they were stopping by to check on us…It was heart wrenching. I was so happy they cared, yet crying so hard. Why do we have to have the sad story…I like positive things. I don’t like sad or negative things. It was difficult to see them, I made Rod talk with them. I couldn’t keep it together. I stayed in the house each time.

A cute note, we have a student in the Tiny Spirits, who I guess is having a hard time. She wanted to help, this was her idea, she did it herself, she went to each of her neighbors and raised $147 dollars. We learned about that kind gesture last night on our drive here. This morning when we were in the line for registration, we could hear them asking patients private room? Insurance does not cover, it’s $70 a night. Crystal mentioned, mom I don’t need the private room, when they ask you…save your money. We got up to the desk and when they asked, “private room?” I said, “Yes, Private Room!” I looked at Crystal and said your Tiny Spirit bought you two nights:) Crystal smiled so big.

Getting prepped for surgery, we pretty much have learned that she is the healthiest cancer patient there is. She has lots of support here with her, besides her dad, sisters, grandmas, grandpas, uncle and aunt, she has all of you with her in Spirit. Thank You.

How long is surgery…not sure, they said a minimum of 4 hours and I know they have not even started as of 9:18am.

To Crystal’s dearest friends that are involved in her life. I have your photos, the stuff animals and will set them up in her room:) The video you made for her made her cry…she had a very hard time sleeping last night so that kept her busy. Thank you for taking the time to let her know how special she is to you.

Crystal’s Benefit and Benefit Items!

Written April 6, 2013 10:03am

Since I wrote the last journal entry about an hour ago, I have received three emails on Crystal’s Benefit. And that is just this morning.

I thought maybe I should put a little information in this journal to help some of you with your questions.

When we were first told of Crystal’s condition, in less than 2 days, we were being asked by people how they could help. How lucky we are! So very very fortunate.

However, because of what I do for a living it’s been overwhelming. It must be those videos, Kevin (my dearest friend) has put out there. They sure make us all look good:-)

Anyway, besides our Family, Close Friends, the Spirits Studio, Kuehl Construction and the Community, we have people from all over the world wanting to help. That is truly a blessing. But the problem is, I don’t know a lot of the people asking. We never dreamed it would be like
this. So I asked my niece Heather to step in. Heather and some of my dearest friends on the Professional Dance Team are working together on this.

There will be a benefit. There will be one t-shirt. There will be fund-raising items. And they will come from Crystal’s Team. Heather set up a quick email so I could just focus on Crystal. If you want to help, donate or be apart of it…Thank You. The email is cmkspirit@gmail.com

Some have asked about the Caring Bridge Tributes…That is for the Caring Bridge Website, not for Crystal.

I am truly Thankful and at a loss for words. I have never asked for help. I feel I can do it myself. But this time is different. It makes me feel anxious. It makes me sad. And then I get angry. Your prayers will give me strength and I must say if I could sleep that would help.

We received our fist medical bill this morning…one word WOW! Next, how do people make it in todays world?

“We the Kings” with Cassidy, Courtney & Crystal

First day back home…

Written April 6, 2013 9:11am

Isn’t it funny how you can ask God for something and once you get it you think you will be happy. Then you find yourself asking for something else almost immediately.

I feel that is my story right now. I am not happy even though I pretty much have begged for things. I
wanted a test to prove that the cancer had not spread any more in her body, begged and pleaded with the man up above. Well, the test shows that its only in that area but until they open her up, we really don’t know. So, now I am saying, begging and pleading, when you open her up please let them find no more. It’s always something…Honestly, I’ve not talked to God as much as I am right now. If anything I used to always say Thank You for what I have and now it’s like that is not good enough.

Seeing Courtney and Cassidy (Crystals sisters) was wonderful. My uncle Bret and aunt Michele did a wonderful job taking care of our home and girls. Having that kind of help takes away some worry. I got to hug the girls tight, Rod and I got to explain things a little more in detail.

Courtney is always so tough. We joke does she have a heart in there but really she probably has the biggest but hides it so she doesn’t get hurt. Cassidy seems to get so angry. Which I have tried to tell her being angry is okay but if you don’t let it go it will consume your life…

As tired as I was I could tell Courtney wanted to chat. Slowly she was opening up more and more. Her eyes filled with water and she finally says, “I feel like I am not suppose to be happy about my birthday. I feel like I am not suppose to celebrate it.” It broke my heart as I explained to her that Crystal wanted so bad to be back for her birthday. That I felt God answered Crystal’s prayers because they wanted to do surgery immediately but there was no openings so we could come home. Life is such a journey and your always learning even though your a mom and suppose to know everything.

On another note we are blessed to hear from so many of you. I can’t even begin to tell you how thankful and lucky we are. You have touched my life and my families. All I can say to you is, Thank You. I will be printing off a lot of your emails and keeping them in a book to look back through them when it’s rough.

Some days you wake up sad but I believe you need to look for good so you can carry on and smile. I find myself saying it over and over so I believe it.

Yesterday, we cleaned Crystal’s apartment, got her laundry caught up and then I received a wonderful phone call from Nancy White. She was a neighbor from way back when Crystal was very tiny. We became friends instantly. She knew Courtney was having a birthday and she thought Crystal was still up at Mayo. She thought to take Courtney’s mind off of things she wanted to give her some tickets to a concert, “We the Kings”. After I explained that we were all home, she got us more tickets.

The concert was wonderful and the band was amazing. After the show we got to go meet them. Not only were they talented but they were funny, kind and said some inspiring words. Yes, I teared up but then enjoyed the moment. That is what life is about. Right?

We have a plan…

Written April 4, 2013 3:49pm

On our drive back home, I sit in the passenger seat and think about our day. We have a plan…

With a restless night of sleep and very early doctor appointments, I found myself asking for strength and peace for the day. Your prayers are working, because the doctors have given us a plan of attack.

We have surgery scheduled for Tuesday, April 9th, not sure on the time but we have a date. Our surgeon is a confident and brilliant woman who is ready to tackle these malignant tumors. The team of doctors will be removing a large piece of her pancreas. Plus the liver, right and left lobes will have big portions removed. There were a lot more of those tumors in her liver…I believe we counted 12. Their goal is to go in, take out as many as they can and burn the ones they can’t. They will be completely removing her spleen and her gall bladder from her little body. They are not sure on anymore until they actually open Crystal up and begin the process. There is also something by the pancreas, she believes it’s a lymph-node which she is also going to try and take.

At first Crystal began to cry which of course made me tear up. She is scared. It’s a big surgery and once she let the tears out, she wiped them, looked at the doctor and said I am gonna be fine, I am ready. Which made everyone in the room smile. They have a fighter and the team of doctors can see it.

On the brighter side….Crystal has learned she can’t wear make-up during surgery but she thinks going in with her hair done might be a good idea. Crystal discovered there are many young and handsome aspiring interns. One of her doctors told her brilliant, young, aspiring interns. So we gave that doctor her business card to show everyone what she does. That made her smile.

Again, I have to say every doctor, nurse, medical assistant we have met with has been kind and forward with Crystal’s situation. They are professional and really listen to the patient. We are so blessed with our team. Crystal is the best hands.

With surgery if everything goes well Crystal will be out of the hospital in 5 to 7 days, that is if the pancreas does not leak.

At this time we don’t know what the aggressive options will be for treatment after surgery.

I am looking forward to this weekend and celebrating Crystal’s sister, Courtney’s 18th Birthday. Crystal has a weekend before her big week…We’ve got this:) as Amy Kuehl would say…

More tests….

Written April 3, 2013 10:26pm

As I lay here in bed, not being able to sleep again, my mind is just running. I know if I don’t sleep, I will not be as strong and the tears will come easier. I’ll make a quick post and try to get some sleep.

Today was really about more tests. We got to see the MRI up close and see what the tumors actually look like. It’s amazing to see it in 3D.

It’s funny how your heart just races as you hear the door open and the doctor comes into the room. As you sit there, you look over at your daughter, who is listening carefully and staring at the doctor. You find yourself almost out of your body watching everything going on. You find yourself looking at every doctor in the room watching the other one talking to see their reaction…I guess looking for hope?

Today we were done early. Crystal really wanted to eat at HuHot, so off to the mall we went. Must say it sure was delicious. We even got a few birthday presents for Courtney who turns 18 on Saturday.

These two tests we are waiting for are actually nerve racking. Makes you anxious thinking about it. We want the test to show that it has not spread to any other area in the body. We know of the pancreas and liver. The other test we want it to show that it’s the tumor they think it is. If those tests come back in our favor, we have a good fight ahead of us but we will be ready. It’s actually difficult even trying to type this….

Crystal has a big 2 hour scan tomorrow at 7:30am. What is hard about this day of testing is she will go the longest without eating or drinking anything. That is difficult when you have very low blood sugar. Plus she has her liver biopsy at 12:15pm….so after all that she will be able to eat.

How is Crystal? She is strong and wants to feel better so very bad. She has gotten to stay in our hotel room which has been wonderful. She has skyped with her sisters and her friends. Lots of giggles and no talk about what she is going through.

Has Crystal cried? Yes she has. Did she think it was this bad? No she didn’t. Has she asked her dad and I do you think I could die? Yes she has asked. Has she asked will the cancer come back? Yes she has asked.

Now, I asked Crystal this; Crystal have you asked yourself yet, why me? She said No. And that is because we believe her story and how she handles herself is going to make a difference in someone else’s life. You have to find the good in every situation….it will make you happier if you find it.

How are her sisters Courtney and Cassidy? Probably in shock and they are not with us which is difficult for me. How is Crystals dad? Quiet. Wants answers yesterday. How am I? Heartbroken.

Waiting for a test….

Written April 3, 2013 1:28pm

Sitting here at Mayo, we still have an hour to wait. Crystal is curled in a ball sound asleep in a chair. It takes me back to when she was little. I want to cry but at the same-time it makes me smile.
How I wanted my daughters to grow up and do and try new things and how at this moment, I wish they were all little again. It felt like life was easier back then or was it….

The doctors….

Written April 2, 2013 11:30pm

A cute story I thought I would add.

When we were getting ready to leave the hospital, we learned that we missed the shuttle because Crystal tests were taking a little longer. No worries, we called a cab.

In the meantime, one of Crystal’s doctors ran into us as he was leaving for the day too. Now remind you, this hospital is huge and there are so many patients. Anyway, he asked how she was feeling and what we were doing next. We stated we missed the shuttle so we were waiting for our cab.

Now this will shock you, he said I will go get my car and if your all still here, I will take you back to your hotel. How very kind! Well, when he came back, the cab pulled up too so, we split up. My mom went with him and met us at the hotel. We are blessed with so much. I feel that shows this doctors character and we all know how I feel about character. We have to remember there is good even when we feel there is none in this situation.

I need to sleep as difficult as it is. With sleep will come strength and my daughter needs to see that and feel it, not just from me but from all of us.

What we have learned…

Written April 2, 2013 10:24pm

Here we go…She has Neuroendocrine. It is a pancreatic cancer. They are 95% sure that is what it is. The next 3 to 6 months of her life will be about saving her life. Doctor Vege & LaRusso will be hand picking the best team for Crystal in the world. It is very serious. She had another MRI today. Then we will have a liver biopsy, more blood work, octreoscan injections plus two scans tomorrow. Meet with more doctors to determine the options of treatment. Prognosis will be better if this is the form of cancer that Crystal has. We will know more after the biopsy. We are sick.

If this is the cancer after the liver biopsy is done. Then it is what Steve Jobs had. They are 95% sure that it is.

We can’t cure cancer but we can beat it. Can the cancer come back? Yes. There can be small tumors that they may not find at this time. This is rare, why? Crystal is 20. She is healthy. It is rare by where the cancer is located on the pancreas which is in the tail and in the way back. Plus the spreading to the liver. On the right lobe of the liver she has about 5 tumors on the left lobe she has about 3 tumors that they can see, that is why a special team of doctors are coming into this. They will be the finest in the world for Crystal.

Heartbreaking…Crystal is in shock. And is realizing slowly how long this fight is going to be.

Crystal asked the doctor when will she just be better. She said she has so much to do. She is going to Vegas in May for her 21st birthday. She needs to get back to her students and to the studio. Plus she wants to perform. Crystal first was sad to think she will not be able
to finish Kirkwood Community College and go on to Mount Mercy in the fall. Plus she was also devastated to think that she might lose her hair. Now it’s the reality that it will be awhile before she actually begins to feel better and we will be attacking this cancer aggressively so not sure how she will be feeling.

As we went to her MRI and sat in the waiting room, my mother talked with a gentleman in there. Crystal and I were busy on our phones updating family and friends. As Crystal went into her appointment, my mom and I began to finally talk without her around. The man said the girl that was just out here is going through all of that? We said yes, it’s my daughter…he said she was so cheerful. We said she is a fighter.

It’s hard to be strong but we have to be, to win this battle. At dinner Crystal said…I am not dying. As Rod, Shari, Bob and I sat quietly thinking to ourselves your life is going to change. And so is everyone else with it.

1st Day at Mayo

Written April 1, 2013 8:00pm

Good evening everyone. A little update, 20 tubes of blood taken, a chest x-ray, cardiologist tests and a few doctor consultations and knowing we have a few more big tests to do over the next three days.

We want answers and we want to know how we are going to fix it, but seriously, I’m scared. The doctor is getting more doctors involved. I enjoyed the doctors we met with today and they are truly ready to help Crystal the best way, that is why all of the testing. I just have to remind myself of that.

I do feel she will have surgery. Rod and I feel that whatever she has, it is not good. But what is her options? We meet with two more doctors possibly three tomorrow. I also believe she will not be leaving anytime soon, just an impression I am getting.

I told Crystal this is her story. Her story to tell. One that will touch someone in a way that may remind them to live life a little more fuller. Take the vacation they haven’t yet, hug their kids a little tighter or maybe to help them remember what they were once passionate about. Life is always changing….

High School Friends have a get together!

Written March 30, 2013 7:00pm

We have cried for the last three days but we still have a smile on our face. Why? Because we are learning and hearing about all of the prayers and support we are getting. We are getting them from all over the world. It is such a wonderful feeling and it reminded us of how lucky we really are to get this kind of support.

Crystal has some very dear friends who got together to see her before her big trip to Mayo. Oh Crystal, what wonderful memories you have made for being only 20 years old.

Learning of the tumor

Written March 27, 2013 9:00am

After learning of the tumor in Crystal’s pancreas that spread to her liver. Her family doctor made phone calls to the Mayo Clinic and got us in right away. They were even shocked how fast they got her in. Monday, April 1st was going to be the start of our journey to the Mayo Clinic.

Dr. Geodken and his team, including his office staff were comforting and supportive. I feel they were taken back with Crystal’s prognosis. Dr. Geodken was very open and honest.

He was also going to be writing a letter to our insurance since we had learned that it did not cover Mayo.

We made phone calls and began contacting the people that we see on a regular basis. I must say that was extremely difficult. The fears of the unknown.

We also met with an attorney to get Crystal’s medical and finances in order. I never thought I would be doing something like that at this age.