Can you believe Christmas is almost here?

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

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

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

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

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

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

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

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

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

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

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

What we have learned…

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

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

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

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

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

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

Give the worry to God…Repeat…

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

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

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

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

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

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

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

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

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

Another question asked…What do we hope for?

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

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

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

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

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

Awareness Month…

Written Wednesday, November 18th @ 1:30pm

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

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

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

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

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

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

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

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

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

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

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

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

 

Happy Halloween!

Written Wednesday, October 28th @ 11:30am

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Here is what I posted on Facebook.

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

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

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

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

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

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

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

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

What have I learned these last few years…

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

We have an appointment scheduled.

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

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

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

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

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

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

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

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

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

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

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

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

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

Those stories…I guess is what keeps you going.

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

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

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

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

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

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

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

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

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

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

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

Good Night…

We are home…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We got some news…finally.

Written Wednesday, September 23rd @ 6:45pm

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

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

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

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

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

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

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

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

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

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

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

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

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

Chemo will start in the next week.

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

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

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

Happy 1st Day of Fall…

Crystal is home.  Where to begin…

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

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

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

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

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

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

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

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

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

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

Friday, August 14th @ 8:05am

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

Friday, August 14th @ 1:32pm

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

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

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

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

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

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

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

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

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

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

 

 

 

 And her journey continues…

Monday, August 31st @ 1:00pm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh how life can be so challenging…

Written on Tuesday, July 9th @ 8:00pm

I am sitting in my office, getting things ready for class and I can’t put off doing Crystal’s update any longer. The guilt sets in when I don’t update Crystal’s Story. I would do anything to bring awareness to her Cancer, to get prayers for her and our family. The blessing for me is the positive remarks I hear/read from all of you. The feeling you give us that you care and that we are not alone. Thank you.

We leave this week for Mayo. I asked Crystal yesterday if she has been thinking about this next doctors appointment. Her response is…I do what you do mom, the minute the thought comes into my head I just try to think of something else. Yes, that is what I do. I guess that is why I stay busy.

My dearest friend Paulette, asked me…So what are you hoping to get out of this next Mayo appointment? Well, I would love to hear that her Cancer is all gone. That it is a miracle and that there is no signs of Cancer in her little body. BUT I know that I will not go to this appointment thinking that way because then I will have let my guard down. For me to stay strong, I need to think realistically. The fact is…the Cancer is back. So I hope that the Chemo is doing it’s job. I pray that the tumors have shrunk. I hope that they can be surgically removed. I hope she only has a couple more rounds of Chemo to go. I don’t want to hear that the tumors are larger. I don’t want to hear that the Cancer has spread. I don’t want them to tell me we will just check her again in a couple of months and see where she is at.

It is a waiting game and I must say it is exhausting, it is heart breaking and it makes you feel for every person/family going through a journey like this. I hate it.

Today, I listened to Crystal explain to someone how she read a book her sisters gave her, “Robin Roberts, Everybody’s Got Something”. She was saying it’s okay to be angry with God, he can handle it. You just can’t be angry with him everyday. Isn’t it funny how that little remark that Robin Roberts puts in her book would touch my daughter and to listen to Crystal talk about it at the right time I needed to hear it. It is a blessing.

Crystal’s appointments begin early Thursday morning. One of the neat things about Mayo is you get answers the same day or at least the thoughts for the next set of steps. We should have an idea by 5pm…Please, please pray for her. For strength, for positive energy and I thank you in advance. You will never know how much it means to me, to my family. Social media can be such a wonderful blessing when it is used correctly.

As for some of your messages. Yes, Cassidy did have her gallbladder removed last Thursday. She is doing wonderful. We learned from the pathology report that it was full of disease and scar tissue. Cassidy has had to deal with a lot since August of 2013. She has had some very sick days. And then the emotional part of it, that the doctors didn’t believe her. As she would say, “Mom everyone is worried about Crystal but I really don’t feel good. I feel bad saying it but it’s how I feel, mom” As a mother, what do you do, what do you say? I knew it was her gallbladder and honestly so did her family doctor but we are not the surgeons. Thank goodness for another set of surgeons in Cedar Rapids. Again, it reassures me you have to be advocate for yourself. Trust your gut. If you don’t care for the doctor, get someone else. As my girlfriend Kelly has said, listen to your body. It always gives you signs. Take care of it for it’s the only body you got. Somedays I personally forget that but I will defend myself, it seems that I am taking care of everyone else.

I wonder if I could round up all of my medical bills over these last two years, all of the emotional stuff that has gone along with this journey of Cassidy’s and send a bill to the other two surgeons that sent her on her way. Very frustrating but lets be positive, Cassidy is doing great immediately following the surgery.

As for Rod, his ankle is a slow process. It has been a long haul. It really is very difficult to see how much he has had to go through with it.

Courtney, she has made it to Ireland! This is a study abroad class at Kirkwood Community College. Crystal actually went to Australia for a month when she went to Kirkwood. Funny Courtney had no desire in leaving home, no desire in that class. Our girls have to pay for their own college and Courtney just wanted the cash to help pay for her college but I made it very clear…it is not about the money, it is the experience and that is what we will give you, take it or leave it. She chose Ireland. I am happy for Courtney and her fun journey, its going to change her life.

But don’t think Courtney hasn’t had a bump, getting off the plane in Ireland and in 30 minutes learning that your debit card is not working put her in shock! Getting a message at 6:00am and not being able to help her gave me a heart attack. Guess next time she might listen to her mother on having a couple of different ways to get cash. A hard lesson for Courtney to learn but fun how her lesson still affected me. After 3 1/2 hours of worry and talking to the bank, it was taken care of. Again, people come into our lives for a reason…Thank you Blake & Denise! As far as my bank goes…are you kidding me, I am on her account and I just wanted to up her limit and I am sure if she has a problem with money you would have no problem coming after me. After wanting to speak to your manager funny how you could then change it. Looking for a new bank!

Needless to say I never ever dreamed this is how my life would be. There are days I am so angry, so bitter. My head hurts and my heart races but I choose to smile, I choose to look for the good. I just sometimes need a little help finding it.

The Next Step….

Written on Thursday, July 16th @ 6:35pm

What a long drive to Rochester last night, even a longer day & a crazy wait time in the waiting room this late afternoon. I would say this trip everyone at some point has been on edge. There were no photos taken.
As we are driving home I think of Crystal’s Story update, I find myself more exhausted than normal and when you are exhausted its hard to find hope. However, I would read your messages throughout the day and push forward with a smile.
Gage he always makes us laugh, Rod he doesn’t say much and Crystal she just smiles with the attitude I don’t have time for this.
BUT our prayers have been answered. Everything is the exact same. Next step….surgery. We will head back to Mayo on Thursday, August 13th with surgery following the next day.
As for Chemo they will determine that after her surgery.
Now the CR Spirits we do have a big show at the Iowa State Fair which Crystal & I won’t be able to make but the show will go on. Please if you are at the fair Saturday, August 15th at 5pm go check out the Riley Stage. I know the Spirits will dance like rock stars for Crystal & I.
Amy & Shane, no worries Crystal & I will be ready to stand up for you both on your special day Saturday, August 22nd. We love you! Amy as you say, “We’ve got this!”
So today is July 16, 2015 & we know Crystal is going to fight this ugly cancer again. As the doctor said she will fight it for the rest of her life and that is why we need to stay on top of it. And I know that a year from now fighting this Cancer or not on Saturday, July 16th 2016….Crystal will be walking down the aisle to begin her new journey with a man she will be proud to call her husband.

Sorry, it’s been awhile…

Written on Thursday, June 11th @ 11:30pm

It has been a struggle for me to write. I have been extremely busy and then when I find sometime to write I become depressed. Just the thought of reliving the memories and what we have gone through is heart breaking. But sitting here on this dark rainy night in my living room, I know if I write I will feel better. Rod is making a yummy snack for all of us, Cassidy is continuing to write her Thank You letters from her recent high school graduation party, Courtney is doing homework and Calvin he just lays at my feet…yep it is a good night to update you all.

Where I left off…Crystal did meet with the fertility doctor in Rochester. His name was Gaurang Daftary, M.D. and he was a blessing that day. He made us smile, he made us laugh, he was personable, funny, kind and willing to help Crystal. However, she would need to start that day, if Crystal was ready to begin this journey.

After the two hour appointment with the doctor, which I believe God had him be our gift for the day, Crystal stated she would like to wait. She smiled and said, “I am happy that I came here today. I feel if it is meant to be, it will happen but for now I need to focus on myself. I feel good about my decision.” When she then turned to me and said, “Mom, What do you think?” I stated, it was her decision. She is 23 and it is her life’s desires, her future. I didn’t want to influence her thoughts. As she comes right back with a quick remark, “Mom, I told you my thoughts and I want to hear yours”. I smiled and said I have to agree. Focus on the moment, God will do the rest.

As we drove home we chatted about the doctor. How it would be great to see him again and how he made us both feel so very special. I have to admit sitting in that office you can’t help but tear up when you are going over things that are life changing. I tried hard to stay strong for Crystal but sometimes you just can’t help it. Listening to her talk about her future and the quality of life she has left can break a mothers heart and then Dr. Gaurand Daftary looks at me, the tears are running down my face and he says…”Oh Mom, you gave a birth to a hero. Not very many moms can say that.” He is right! My Crystal is a SuperHero! And I am so very lucky to call her my daughter.

Getting home we don’t have much time to think, we have so much to do before leaving for Vegas! And when we leave Cancer & Chemo will stay back in Iowa. No talking of it, No thinking about it, just living life. Living life to the fullest. Leaving the worry back home in Iowa but honestly it was difficult to do but when you surround yourself with a group of fun loving positive women, you are bound to have a great time and that we did! Crystal had the time of her life, hard not to when you are treated like Royalty. As I told my team on this Spirits Trip the one thing I do know in life is…kindness will take you far.

It was hard to come back to Iowa…back to Reality. Between doctors appointments for Crystal and her dad, enjoying Cassidy’s Graduation Day and getting Cassidy’s Graduation Party done with. Plus all of the other graduation parties you are invited to and then staying focused on the Spirits Show at the dance studio, I found that keeping busy helped me not think about what is going on. Which I guess is a good thing.
Crystal’s doctors visit at Mercy Hall Perrine Cancer Center was hard for me. It was hard for her. The last time we were there it was when I was giving a lecture on Melanoma. The use of a tanning bed. Interesting enough I have learned that three women who listen to me speak have not tanned since. Now, if I could get my daughter Courtney to listen.

Anyway, as we get into the elevator, we are both quiet, the ride up to third floor I could feel the mood changing. Here we go again…Deep breath. Everything seemed the same, just like we left it in 2013. We remembered everyone and they remembered her. Dr. Wilbur was wonderful. Crystal made it very clear that she wanted to start her Chemo on Monday, May 25th, Memorial Day. The same day she started Chemo in 2013, Dr. Wilbur said okay, but no later.

Well, I am proud to say she has done her first round. It was a struggle here this last week but she did it. I think today was even a better day for her.

What I can tell you about Crystal, is she doesn’t look sick. She takes so many pills with this Chemo but doesn’t complain. She still tries her hardest to workout everyday, she puts a smile on and continues to go to the dance studio and keep up. But let me tell you, when you have not seen your daughter for a day and she comes into work, you take that moment to smile at her and when she smiles back at you, the look in her eyes, that is when it gets you. You can see in her eyes how sick she is. Monday & Tuesday were very hard for me. You can see she is sick but still trying to hang on. Thank you to the parents in the dance studio who see it. I know you don’t know what to say but your smile, your hugs, the fact that you still have hope with us, means the world. Again, Thank You.

Crystal’s next round of Chemo will begin Monday, June 22nd. It actually works out great. She will be able to do what she loves on Saturday, June 20th at the Spirit Show and not be sick on Chemo. It is a blessing. If you would like to come to the show you can visit www.crspirits.com

Thank you for all of your messages, I have not forgot you. You are the ones that are praying, you are the ones that help bring awareness it’s just lately it has been hard to write. It makes me sad, it makes me bitter. It was hard to write this update this evening, I didn’t want to get into to much detail of everything that is going on but to let you know where she is at. Thinking of everything, I can feel my heart race, feel the anxiety as I type, then the emotions come in. I realize I did what I said I was going to do tonight and now it is time for sleep…No sleep makes it 10x worse. Good Night to you all…

 

 

Crystal is in the middle of her 2nd round of Chemo…

Written on Sunday, June 28th @ 1:30pm 

Happy Sunday! I can’t believe June is almost over. It has been so busy that sometimes you forget to slow down and enjoy.

As I reflect, here are some memorable things we have enjoyed since the last time I posted…

Crystal, the CR Spirits and I had the opportunity to meet Dick Vitale again this year. Thank you to Craig and JoEllen Mettille, owners of The 380 Companies who bring The V Foundation here to Iowa. Dick Vitale is so passionate about raising money for Cancer Research. His stories make you cry. You cry because they are truthful, yet you listen to him speak and try your hardest to find hope. You do your best to not compare your daughters story with someone else’s outcome and honestly, it can be very difficult to do.

This year Crystal received a $10,000 grant in her name, for her charity of choice from Dick Vitale and The V Foundation. What a beautiful gift. It made Crystal’s night. Thank You.

Next, we learned Crystal’s Cancer Ribbon Color.

When I go speak at events, I will sometimes start off by the color purple.
How purple is my birthstone color. Purple is the color of royalty.
As I grew older, I learned that purple represented Alzheimer’s. Something that has always concerned me. I think because I am very forgetful of my past which scares me.
Then as time went on, someone very dear to me was in an abusive relationship. She actually is lucky to be with us today. And that is when I learned that purple was for Domestic Abuse.
Next, on March 27th, 2013 is when I learned that Crystal was fighting Pancreatic Cancer. The ribbon color is purple. I must admit that color has changed my life.

But then I met a woman, Nancy, who’s son is fighting a similar form of Cancer that Crystal is fighting. She meets me through my Caring Bridge page. Although her son is older than Crystal we still feel the hurt the same way. I learn that everyone grieves and gets strength in different ways. Nancy is more private and she gets her strength, her hope by reading every doctor’s book. Learning and knowing everything about the Cancer. That is very different than the way I heal and find hope. I am a people person and trying to read what Crystal has makes me very sad and depressed. So I just write about Crystal’s Journey through my eyes, which helps me and I have learned that it has helped others. Bringing awareness is really what matters. So together Nancy and I make a wonderful team.

Nancy is the one that brought up Crystal’s Cancer Ribbon Color which is ZEBRA! She told us the story of why it is Zebra. You could hear her passion in her voice, you could tell she had read everything. It was wonderful to meet another mom looking for hope in her way and sharing it with us gave us hope.

If you are interested in learning more go to: www.netcancerday.org I absolutely love the Facebook page. It is very informative.
Crystal has a form of Pancreatic Cancer, PNETS (Pancreatic Neuroendocrine Tumors). It is what Steve Jobs, with Apple had.

Funny when we were in Vegas and there is a place called the Purple Zebra. Crystal bought her sisters many gifts from there. Purple Zebra is her new thing…

We then got through our Spirit Show! I must tell you she lights up on Stage. Putting that Show on was a difficult one but thinking of her being on that Stage and forgetting the Cancer for a night was worth it. Thank you all that attended the event. Crystal will never forget.

But that morning before the Spirit Show, Crystal Marie got engaged! Yep, she is getting married. She was on Cloud 9. Whatever would go wrong that night at the Spirit Show really didn’t matter, she was getting married!

I wrote this on March 12th, 2014…

Another emotion that hit this week, my niece, Amy walks into the Studio with a smile on her face. She looks good in love, she is newly engaged, she is handing out her daughter’s1st birthday invitations and she just got done performing in the Spirit Show which was a dream of hers.  To top it off Amy is expecting her 2nd little one.  Amy is glowing; her life is good, she’s on top of the world, she knows her purpose. How lucky to have that feeling in your life at least once.  But I see Crystal staring at Amy; she didn’t take her eyes off of her.  I could see pain in Crystal’s eyes when I asked, “Why do you keep staring at Amy?”  She broke down.  It was heart breaking.  We will never know how Crystal feels.  Instead of thinking if she will marry and have children she thinks will my cancer come back and can I beat it.

And now look, June 2015 my daughter is engaged! Yes, her Cancer is Back but she is getting Married! See we do not know our journey. We just have to embrace. Everything life throws at us…It is how we handle it. We have to find the good. We have to find the blessing!

Fun fact: Last years Spirit Show two Professional Dance Team members got engaged after the show. This year, my daughter got engaged before the Spirit Show…Hmmm something in the air about the Spirit Show! lol

Now for the details that a lot of you are asking about…

Gage is a gift to our family. He brings joy to Crystal. Gage is picked on terribly by Crystal’s sisters, which tells you that they already think of him as family plus he is very respectful to Rod and I.

Crystal dearly enjoys his family. That was one thing that was very important to her. To find a man who was respectful to his own family and would embrace her family like it was his own.

He did ask Rod for his blessing a week prior. And wanted to ask Crystal for her hand in marriage before the next round of chemo was to begin. However, her ring finger is so small it took a while to get it sized.

He surprised her the morning of June 20th, with a walk through Lake McBride before a surprise breakfast with close family and friends. There was a photographer hiding at the lake and took many photos of the event while it was happening. I can’t wait to see those photos.

Gage is kind, thoughtful and a planner. He works hard and has a big heart. He has manners and that is hard to find these days. He is very fortunate to have a loving family who supports him and has embraced Crystal. Gage fell in love with Crystal while she was going through Chemo the first time, August of 2013. He was willing to open his heart with a girl that was very sick. He has not missed a doctors appointment with her and takes his work vacation off around her appointments. They are in love and as much as I want to thank him for loving my daughter, thank his family for raising a kind boy…I stop and think, my daughter, she is a pretty great catch too.

The wedding plans begin…

Her next doctors appointment is Thursday, July 16th at Mayo. We will learn what the next steps are. At this time we will take some prayers on giving her strength through this next round of chemo…

Sad but determined…

Written on Tuesday, May 12th @ 8:45pm

As I sit at the CR Spirits Dance Studio tonight, hair in a pony, make-up smeared from tears, voice tired from telling the story all day, I try to find my positive attitude. However, wearing sweatpants with flip flops which maybe comfy does not help with the attitude, tomorrow is a new day and I am ready, we are ready.

Yesterday was Crystal’s birthday. When we picked her up that morning to head to the Mayo Clinic, she was happy, looked beautiful in a mint green Victoria Secret open back sweatshirt. She had her new walking shoes on her feet and a smile that would melt anyones heart. Gage and Crystal talked, smiled and giggled all they way there, she was making plans for that evenings birthday dinner. Crystal loves cookies and a big cookie/cake was what she wanted.

Arriving at the Mayo Clinic we were ready to get this appointment over with. Hearts were racing but honestly we just wanted answers. As we were sitting on that little couch again in the exam room, I was reminded of the post I did for “Crystal’s Story” with the kittens which made me smile, yet made think of what we were actually doing there.

Well~ her cancer is back. There is a spot in her liver and a spot/lymph node near her left side of the aorta. The part that probably bothers me the most is the spot/lymph node near the aorta is not able to be surgically removed because it is near a artery which means our option is Chemo.

So…We have a plan. A plan, funny how you are excited that you have a plan but yet it is Cancer. It feels so much better than guessing everything, I guess. Crystal will be doing the same Chemo as last time, oral. She will be doing her Chemo check-ups at Mercy’s Hall Perrine Cancer Center like last time as well and then heading to Rochester, MN every two months.

I can’t describe what it feels like to hear it. To hear that your beautiful, kind hearted daughter is sick again. To hear that it can’t be surgically removed probably upset me even more. But I still have HOPE. I still believe in MIRACLES. Now do I questioned it? Sure, I am human. By the way, thank you Michelle for listening to me vent. Someday I will write a book and tell more of the story, Crystal will be so proud of me.

Driving back home on her birthday, Crystal slept…Rod and Gage did a little bit too. They all got some rest before it was time to celebrate. Crystal was happy and I found myself feeling sorry for everyone there who didn’t really know what to say but hey we got through it.

Tomorrow morning, very early tomorrow morning Crystal and I will be heading back to Rochester for a doctors visit. Crystal has a consultation with a fertility specialist. At least this time she might have the opportunity. Funny I always say it’s beautiful drive to Rochester. It’s an easy one, hmmmm I will be doing it three times in less than a week and two of those days we will have done drive in one day (over 6 hours), okay it’s not that great:)

We will then be coming back for Cassidy’s Senior Presentation before dance practice and then Vegas! It will take every ounce of strength I have got to get through this trip without a tear or a question but I will. I will for Crystal. Crystal is very excited for this trip. Very excited for the experience. I won’t take that away from her.

Today was rough for me and I have learned it was for Crystal too. It’s hard to get out of bed when you are angry and sad. It is okay to have a bad day or two but more than that can be scary…So we will give ourselves today and then tomorrow, dress up, take a deep breath and enjoy what this weekend will bring. Live in the moment. Make a memory. Laugh. Smile and plan for the future. Yes, life does go on.

And again, the waiting begins…

Written on Saturday, May 9th @ 10:30am

Sitting at the kitchen table, drinking some coffee and reflecting on what we just all went through the last few days.

As I stated in the last update, Crystal’s appointment was rescheduled for Wednesday, May 6th. We were lucky, we got to sleep in a bit before having to head up to Rochester, MN. Crystal’s first test was going to be blood work.

It was a nice ride actually it always is. We didn’t talk much. I asked her if she was nervous, she said a little. But really we just turned up the music and practiced our routines in our head. Oh I guess we did talk about work little bit but that usually never seems like work. Lucky us.

We checked into our hotel and then walked to the Mayo Clinic. It was nice out yet a little chilly. Such a beautiful town. So clean, cute and looking around you are reminded of how special it is here. You realize what a miracle this place is. What a gift this Clinic is to many people, to many families.

Crystal of course does her first few tests like a pro. We even got to visit with a very special person who has been following Crystal’s Story. She is very knowledgeable on the type of Cancer Crystal has because her son is going through something similar. It really is crazy how people come into your life and how much joy you can find in it, if you just take a moment.

The MRI was the last test of the day. By this time, Crystal was so very hungry, tired, and getting shaky which honestly made me think about when she was first diagnosed with Cancer. Those shakes, the worries…Oh how I hate those feelings. I couldn’t comfort her and I knew that Rod and Gage were just leaving home to head to Rochester, MN after a long day at work.

I shared this on FaceBook “As I sit in this quiet waiting room, tickling her arm to take her mind off her IV, to take her mind off of food…I can’t help to where my mind goes…oh the worry. I reflect on how lucky we are that we are together, that we get along, that we’ve met some wonderful people today that have touched our lives and then I think of Crystal…such a brave kind person. So thoughtful & positive today as I can see the hunger & worry that she tries so hard to forget. Her eyes are closed, then the pager goes off, we both jump…it’s time for the MRI…she smiles & says I can’t wait to eat. Oh please please let there be good news tomorrow…”

The minute her test was done she ate up an orange that a nurse gave us early that day. I think the nurse could tell she was hungry and then it was off for Ice Cream and Chocolate before the boys showed up. She knew exactly what she wanted.

Once her dad and Gage arrived safely we hit the restaurant, “Newt”…It is kind of turned into our place. The best Cheeseburgers around. After dinner we called it a night.

I was so tired but yet it has been very hard for me to sleep lately. My mind is racing with everything going on around me, personally, family, career…I guess life. It is almost like I try not to think about Crystal’s tests or new doctors because when I do negative thoughts try to take over…so I ignore it but then maybe I don’t because I find myself tossing and turning, my leg just shakes as I try to lay still to sleep. My last words that I remember…”God help me sleep, Help me help her, What am I suppose to be doing, What is my purpose, Am I suppose to be helping others, Am I not listening to you?” And then I am out for at least 4 hours…I have been saying this to myself a lot lately and honestly it gives me a headache but once my mind is full, I fall asleep.

Next morning was an 8:40am appointment for Crystal. We got to meet one of her new team of doctors. Doctor Robert McWilliams. He is nice looking, kind, and younger than I thought he would be. He focuses on Melanoma and Pancreatic Cancer in younger patients, Crystal loved all of that about him since all of those things were in our little family.

When he walked out of the room for a moment, Crystal, Gage, Rod and I all said out loud at the sametime, “I like him”. So I think that is a good sign. I think we were all nervous but meeting him took some worries away plus we know Crystal has been looking good and everyone has been praying so I am sure we are going to hear good news.

Have you ever seen the kitten video with the five little kittens that follow the light. Their heads nod back and fourth so cute, so innocent. That is probably what we look like when a doctor or nurse enters the exam room. See we sit on a little couch. Crystal sits closest to the doctor, then Gage, then Mom, then Dad…and I bet every time a doctor or nurse walks in we look just like those kittens…we follow each person in that room with all of our eyes on them and our hearts racing.

So when the door opened back up, the doctor this time came in quietly and said, well we have talked to the Radiologist and they have found a few things. They are not quite sure so we will need to investigate a little further. There are possible two spots in her liver and a spot/lymph node near her aorta on the left side.

My heart dropped. The tears began and since we sit in a line I knew no one could see me crying but the doctor. I tried so very hard to stay positive and listen to the words biopsy not cancer…biopsy but let me tell you it took everything I could to hold back.

All four of us were in shock, no one was really talking, just taking it all in. We went to the Gonda waiting room on 10th floor to wait for our orders. That is a large waiting room. It was busy. The nurse came out to explain what we needed to do, blood work and then followed by a procedure early the next morning. That is when we all realized we would be staying another night. Crystal let out her emotions, the tears and crying began. Rod and Gage were quiet taking it all in. I remember trying not to cry, trying to hold it in and looking up and seeing strangers wiping their eyes as they watched her. What were these strangers thinking. How hurt they must of felt watching our family be lost for the moment. What is their story? It just made me cry harder. The nurse very kindly, and in a loud tone said…”You are to young for this, get this blood test done and get out of here for a while. Go to the Mall of America…it’s an hour and 20 minutes away…take a break, get out of here.” Typing this is extremely hard but I think a good cry is needed.

Before we walked away I did ask the nurse about a Vegas Trip Crystal and 10 of her Dance Team members are taking next week. I wanted the nurse to ask the doctor if we should be canceling this trip. And the nurse was on it, we received a phone call by the time we got off the elevator that the doctor has made it very clear that she must go on this vacation. We will get our results on Monday and figure out our next step.

As Crystal looks at me and says…the doctor didn’t need to tell me that, I was still going on that trip mom. To all of you, the Spirits got the opportunity to perform in one of the Casinos in Vegas next week. The last time this happened, we were offered a job however my daughters were little that I turned the job offer down. But we did get some fun opportunities with it, one of them being the Country Music Awards and another Dick Clark’s New Years Eve Bash in LA…So I think Crystal has some big dreams she would like to fill with this opportunity.

So as I try to listen to Crystal’s thoughts on Vegas, I am thinking it is so hard to be creative, positive and think of a future when you just want to cry. I just want to be a mom not a coach. I just want to protect my daughters, focus on their futures. I can’t think about Spirits and Vegas, I have a daughter graduating from high school, another daughter leaving for Ireland for study abroad. I don’t have time. But then I realize this is what keeps my daughter Crystal going and I knew I needed to focus on her sisters at the moment as I kept getting messages from them which Crystal said, mom you call everyone not me.

Courtney was first, I knew she was home. I could hear her voice shake, I could tell she wanted to change her plans but I got her to listen to me. I got her to stay focused and stick with her game plan. Next was Cassidy…that one was harder, she was at school and the emotion and shock took over. Thank Goodness for Mr. Anderson and her teachers at Prairie…I felt assured they would help her, they would calm her down. I hated not being there for them but at least I could hear their voices and talk to them.

But before calling them, I called my mom. I knew she would hear me and give me good advice before making the calls to my daughters. I could hear my mom crying which made me so sad for her. So sad that we had to do it over the phone. Sad that there were no answers just more questions. What would I do without my mom?

Here is a text Crystal and I received from my mom after our phone call, “My beautiful strong girls this is why u go there every few months.  To attack it!! And that is what we will do! And to u my sweet Crystal I have no idea why u, but someday we will all know. Love u so much ❤️❤️

We then realized after a few more phone calls that an update was needed on Facebook because messages were beginning to come in with some of the kids at Prairie seeing Cassidy crying. Plus the Spirits had a performance that night at Lindale Mall which Crystal and I of course would not be back for, and our parents in the Studio needed to be told what was taking place.

Once it was all taking care of, off to the Mall of America. I must Thank Gage. He was upbeat, positive, willing to drive so we could all sleep. He helped Rod. He helped all of us. And watching Crystal and him ride the rides in the amusement park made me smile and cry. They were little kids again. I can still see her laughing on the swings and the funny thing is Gage filmed it and I never knew until he sent me the clip. So ironic.

Friday was a long day. The procedure was more than I think any of us really thought. She is tough like her dad and because she is tough you get a positive feeling that she is fine and this will pass. Sitting in the waiting room for over 2 hours on something you thought would of taken an hour makes you antsy. As I look around the room, play on my phone, my mind begins to worry. Gage goes to get checked out of the hotel as Rod and I sit there quietly. Then here comes this clean cut young man, “Tiffany? Your daughter, Crystal is calling for you. She is very emotional at this moment. She is not in pain, we have given her some medicine but we need you to come back.” It was devastating to hear that. I started to cry and then I stopped, took a deep breath and pulled back the curtain to see a little girl laying on a hospital bed, wrapped in many blankets, looking scared to death but relieved to see a familiar face. It is heart wrenching. Her eyes were blood shot. I couldn’t quit kissing her and tickling her face. I could feel her calm down…They never allow people back in the recovery room but they did let all of us come back. It was wonderful, it took about two hours to recover. She could go home but needed to be near a hospital. So many different kinds of scares. Exhausting.

We are now all home safely. Crystal’s 23rd Birthday is Monday, May 11th. She has an afternoon appointment at Mayo to learn more about her tests and what our next step is. We sure would take more prayers and again…Thank You. I don’t know much more to say.

As for Rod, Crystal’s dad. His ankle surgery in January did go well. However, Rod has gotten a severe Staph Infection from it. He was in the hospital a few days last week. He has a pic in his arm, which is an IV that his daily antibiotics are given into. His nurse comes to the house once a week. Rod is very tough but honestly he is very sick. He is doing good but his leg is extremely infected, very sore and tender. He struggles to walk and cannot lift more than 10 pounds. I know he is not a communicator but I do know that watching his daughter Crystal go through this, worrying about work, getting ready for a graduation party and trying to fight his own illness is exhausting. Please send Rod some prayers as well. This morning I did ask Rod to take some time for himself. I schedule a haircut for him this morning that always can make you feel good. Rod is kind, very hard working and loves his family. He would never ask for help but I know that he needs it and I think starting with prayers is a great start for him.

I know this was a long journal entry but there was so much to say. To all of the mothers out there, whether you are married or single, whether you are a step mom or a foster mom, if you have adopted a child or have given birth or a man doing a mothers job…I wish you the Happiest Mother’s Day. I hope you find yourself looking for the positive things in your life and bestow it on your children. Being a mom is a rewarding job but I would have to say it is the most difficult job there is.

You love with your whole heart unconditionally. You raise them, teach them, nurture them, praise them. You sacrifice, you would do anything for them because you are a mom and that is what a good mother does. And when you do your job right there is always the possibility that your heart will be broken.

Stay strong Crystal, Courtney & Cassidy, embrace the love from others at this time, they are gifts from God. The three of you are so incredibly lucky to have each other. I’m extremely happy that I get to be your mom. God gave me three gifts, three lives to watch over until he needs you back. I’m blessed & so are you girls. My little hero’s all I need for Mothers Day is my three daughters finding joy in the day.

It’s Monday, a slow start for me today.

Written on Monday April 20th @ 3:30pm

As I am in the kitchen rounding up my stuff to take to work, Crystal walks in the back door. Crystal is simply beautiful, no makeup, hair in a ponytail, has her workout clothes on, with big sunglasses that she is putting on her head but then decides to just wear them again. It caught me off guard for she was just going to meet me at work, I could feel something was wrong.

As I ask her what is up, I can see her chin begin to wrinkle, her mouth trying to be strong and then her voice begins to shake, “Mom, I think it is just nerves for the appointment Thursday. I don’t feel good.” With her sunglasses on it hides her eyes but the tears are rolling down her cheek. I put my arms out to hug her, as she comes into them like a little toddler wanting to be taken care of.

It breaks my heart. I stay strong and tell her when we get our good news on Thursday afternoon, you will get to live again with no worries for awhile. Life can be so very unfair. I find myself becoming bitter, angry, questioning…why? I told myself I would never want to be like that as an adult. I feel the older I get, the more annoyed I am, the more judgmental I have become. This is real life.

You ask me how we do it? How we stay strong? How we get up each day? Honestly, you continue to plan your days, your weeks, your months as if nothing is wrong. As if nothing could go wrong. You simply live. And by living you don’t have time to face the facts. I hate Cancer. I hate Cancer. I hate Cancer. And as I write this I am immediately looking for positive and feeling guilty for writing anger.

In a few more days we will learn more about Crystal’s new team of doctors and we will hopefully receive good news about Crystal too. A couple of weeks ago we had a little scare. Crystal has a few lymph nodes on her neck that have been there for a little more than three months. We’ve been watching them like the doctor said and if they were to grow in size, we were to come back in to get them checked. So we did…

It was scary. You wanted to believe it was nothing but then the worry just gets you. Crystal is so fortunate to be surrounded by good doctors. Dr. Geodken, set up an appointment with a another doctor to have the procedure done the next morning. Picking Crystal up that Friday morning she was so calm and quiet. I asked her if she was scared, she said, “A little”. Honestly I was scared but I think I was more sad just knowing my daughter will always have to go through this. Always have to be tough and push forward.

Needless to say the doctor was very kind and gentle. Crystal said it was not bad so off to StarBuck’s for a treat. Funny story, as I have my drink about gone my daughter has not even touched hers. I finally said, “Are you going to drink it or wait for it to get cold”? She said, “I think it is hot”. As I say, “Try it”. Crystal says, “I am afraid”. WHAT?!?! She just had a huge needle in her neck not once but twice and she’s afraid the coffee is hot?!?! So yep she had me take a drink of it first…I must admit it her drink was little hot.

Anyway, we did receive the results Monday afternoon and it was Benign. We are elated and ready for the April 16th appointment at the Mayo in Rochester, MN.

I would like to Thank my Facebook Friends for all of the prayers, kind words and messages. I read each one. Funny, I was not going to post anything until we knew what was going on and if it was bad. But I found myself thinking gosh, Crystal has beat this every time and every time I reached out for prayers and positive thoughts to strangers so how could I not do it this time. I told Crystal it is like a ball player getting ready for a game and they wear the same socks without being washed or they eat the same dinner the night before…It’s a ritual and I have found that is exactly how I feel with Crystal’s Story. I guess it is a positive thing. But seriously Thank You All for taking the time to think of my daughter.

On another note, Crystal, Gage and her sister Courtney went on a Spring Break Vacation. They were excited to get away but I think Crystal was sure missing “Storm” however, Cassidy had that under control at home.

Crystal did just celebrate her “New” Birthday on March 27th. That was the day she was diagnosed in 2013. And she has beat it twice.

Crystal also just went to the CR Spirits Ball/Prom and she was very excited to fit in her Junior Year High School Prom Dress…Oh the things that can make a girl happy.

Well, it is time for me to get back to work. Wipe the tears and be thankful for what I have. I have three beautiful daughters who are still with me today. I have a very hard working husband who would do anything for his family. I have a mother who takes my phone call when I am sad, mad or hurt and stays strong for me. I have a dance studio full of people that have come into my life for a reason. God gave me a talent and I use it for good.

Good morning everyone…

Written Thursday, April 16th @ 6:40am

Well we want to keep you in the loop but yesterday was just to upsetting to write anything.

As we were getting things wrapped up to leave for Rochester yesterday I received a phone call from Crystal. She was crying so hard that it was difficult for me to understand what she was saying. I actually thought maybe she got into a car accident but soon realized that Mayo had called and canceled her appointment.

Yes, it is shocking not even two hours before we were going to leave but as I tried to calm Crystal down I could realize that she was devastated and wants answers. It has been 4 months since the last check up and she is worried. “Mom, I just want to know if it is back.”

Oh trust me, hearing her cry was heart breaking, I want answers too. I want it done so we can live again without worry for a month or two. I knew if I began to cry we would get no where so logic set in.

Crystal…it is a cancellation. It is not bad news, just a cancellation. We will play the waiting game until May 6th. We will get out of bed everyday and push forward. Goodness I say to her, here I thought maybe you got into a car accident so I would much rather have a cancellation…right? And honestly look how lucky we are that we are driving there and have not left yet, think of the people they called that might of been on a flight, or have been driving for 8 hours to go there. Crystal you know that happens.

She begins to calm down. I ask her if they gave a reason for the cancellation…she said her doctor had a family emergency come up that morning. As I said to Crystal here is your new team of doctors, your new miracle workers, they are learning their new patients too. Those doctors know their patients need them and that doctor would never cancel unless it was something terrible. And look his or her life probably just changed drastically that day too. We are human. It is a cancellation not the news that your cancer is back.

Crystal was quiet and needed to call Gage as I needed to call her father with the changed travel plans. After talking with Rod, Courtney, Cassidy and my mom. I was exhausted. Rod was shocked. Cassidy was angry. Cassidy was saying it is not fair. They can’t just do that to her, to us and off to work Cassidy went. Courtney…well she was fine. However, she believes that there is a cure for Cancer. She believes the government knows the cure but makes money by not having a cure. So as Courtney is going off saying, “That is why I wouldn’t want children because I would not want to raise them in this world”…I can feel that the girl who is fine, is devastated. And then my mom…she could tell again that I needed someone to break down to but she stayed logical and calm for me.

Oh trust me I did break down but then I turned on the music and began to choreograph a new dance for class that night. Yep, we need to just get back into the routine…when Crystal called and said…no dance mom. I don’t feel like dealing with anyone can we just do something…

Well in Rochester there is this little restaurant called Newt…It has delicious burgers. Crystal was looking forward to it as she even was telling her Junior Spirits dance class that. So all we ever hear is how great Zombie Burger is in Des Moines…So last night we drove there to eat and back home again. It was nice to see her smile. And our food was delicious.

So everyone…May 6th is the day. You ask how she is feeling? She has had to use her inhaler a bit but we feel its because of her allergies. She still has the enlarged lymph node but what we have checked of it, we’ve learned it was benign. She has been nauseas but that can be caused by worry. She has struggled getting up and motivated in the morning but at 22 years old, the stress of an appointment about your health and new team of doctors thoughts, could cause anyone to get depressed.

But Crystal looks great, her smile is contagious and she never complains. So when you see her our in public, performing with the Spirits, living life just know sometimes she is doing everything she can to look normal even though inside she can be struggling….I guess like a lot of us.