7 days later…

Written on Thursday, January 17th @ 9:15am

A early morning in Iowa, drinking some coffee and finding sometime to emotionally write. Happy Thursday to our Prayer Warriors.

I can’t believe it has been 7 days. A week ago Crystal was prepped for surgery, the next thing we know, we were getting news that her doctor who was scheduled to do the procedure, had come down with the flu. We were shocked, taken back, decisions had to be made quickly. Crystal remarks, “God is keeping us on our toes’. Crystal listened to her inner voice, we all listened to our inner voice, with the help of your prayers, things turned out well for our fighter.

I did my best to keep you all informed and I sure appreciate the kind words, positive stories and the prayers. I will say again, you can feel the prayers and the love. My first experience with that feeling was when Crystal was first diagnosed. It is an incredible feeling and I have thanked God that I am lucky to feel it.

This lung ablation went a lot smoother then the last procedure. Yes, she was/is tired, it’s hard to breathe, hard to speak, in pain but has kept that under control with the pain meds and is slowly weaning off them now. But after the procedure  she was talking, her face, her coloring was completely different from the last one. Gage, Rod, Shari and I were so relived after seeing her.

The first day was a long day, the blood work, the scans, the MRI, the pulmonary tests, etc. went well. Meeting for the first time her lung surgeon also went well. Matter of fact, she seemed pretty incredible. And then we all sat down with her oncology doctor, Dr. McWilliams, it was hard to hear that they found two more lesions in her right lung and two more lesions in her liver. It was hard to listen and think of the next plan.

The thoughts, the questions you ask yourself quietly as you are hearing the news; So Crystal is going to have the lung ablation that is scheduled but you are not sure you can get all of the lesions when you go into her right lung? Like two of them are too small? But, the one by her airway is very important to get because if it continues to grow, they will have to remove half of her lung? And the only way to try to get it, is by the ablation?  If they can’t get the one by the airway, then we decide if the following surgery for the left lung is something we should do or if we should begin Chemo? And it seems that since May these lesions keep popping up and now are beginning to spread. Can my daughter handle all of these procedures and the Chemo? Like if we do this will she get another two years of no cancer? This is not fair. This is exhausting. I just don’t understand. And then, you look around the room and focus on the moment.

And when you come back to being present in the room you hear, it is like maintaining your yard. When you see a dandelion, you pick it. And then the next day, you see another dandelion, so you pick it. You don’t want those in your yard but by the end of the week you see several dandelions so you decide to treat your whole yard. In this case, that is what we will do, it worked before, Crystal handled the Chemo before, so we treat her body again.

Now to the present.  They did get the two lesions in her right lung, one being the important one by the airway but the other two lesions were too small at this time. Her team of doctors feel that she should hold off on next weeks surgery. Yes, there is a lesion that they surgically can get but they would like to see what happens after a few rounds of Chemo. As for the two in her liver, we are hoping Chemo helps with those as well.

It is sad, it is not what we want to hear. When I called her sisters, they cried, they cried and it killed me. I don’t know why, why Crystal, why our family, why but I will continue to have hope, to believe and to write and beg you to help us through it. 

She will be doing her Chemo here in Cedar Rapids again at the Mercy Hall-Perrine Cancer Center. Her next appointment will be Friday, February 1st. As for now, Crystal says, “Mom, I get to got to dance January 30th”. 

Home.

Written on January 12th @ 4:30pm

On this snowy cold day in a Iowa, I’m thankful that we came home yesterday from Mayo when there was no snow.

Yes, Crystal was able to leave yesterday afternoon. Her sisters, Courtney and Cassidy were there bright and early Friday morning, another reason I’m glad the snow stayed away while these two drove up. Together we all got news that Crystal could go home. 

Crystal is doing well nothing like the last procedure and oh how I’ve thanked God for that. She is resting this afternoon. And again, trust me when I say we can feel the prayers. It’s uplifting and we feel blessed. Thank you. 

I would go into more detail about this experience and a couple of scares but I’m exhausted, I have just been hearing from some of you today wondering when she was going to be going home so I wanted to make sure I could answer your questions. 

Crystals next surgery will be January 24th💜

Thank you again, I could never thank you enough for your prayers and kind words. Through this journey, I’ve learned that there are good people out there, since we seem to always hear about the bad. 

Thank You.

Written on Thursday, January 10th @ 3:15pm

Well we got to see our fighter💜 She looks good, she even talked a bit and now she is going to rest.

As I say to Crystal, another miracle happened, they got the lesions, including the scary one by your airway. Crystal says they did? No one said anything to me yet. What a blessing that we got to see her reaction with the news…bonus.

Thank you all again for loving our daughter, our family, our journey.

Another added stress this morning…

Written on Thursday, January 10th @ 9:05am

Surgery has begun and goodness what a ride of emotions to start. Everything has gone well this early morning but we have learned that Dr. Schmit, who was the doctor who gave us a good feeling at the consultation, is very ill with flu today. We were shocked, nervous and Crystal says, God is keeping us on our toes. Now we had a decision to make, do we cancel and wait until he is better or go with another doctor on her team. Well, a quick meeting with a doctor on her team. Dr. Schmitz, he is kind, he talked about Crystals case with Dr. Schmit yesterday, he stated Dr. Schmit is his mentor and then we learn that his father is from Cedar Rapids and also went to Regis. So….trust your gut. Crystal said I’m at the best place, let’s do it.

 

 

We can feel you, God can hear you.

Written on Wednesday, January 9th @ 10:15pm

Trust me when I say, we can feel your prayers. Todays consultation went well, it was positive and we feel confident. Surgery will be tomorrow morning for the right lung. 

As we drove to Mall of America this afternoon, I stared out the window as Gage drove, the sun was bright and as my eyes filled with tears I thought to myself, I felt good about that last appointment, we all felt good…I can feel those prayers. God is listening, he really is listening.

 

 

 

More Prayers Please

Written on Tuesday, January 8th @ 9:55pm

We are in our hotel, ready for bed. Thank you for the love today and we sure would take some more prayers. Tomorrow morning we have another doctors appointment and at this time surgery is still scheduled for early Thursday morning. 

Here is what we learned today: There are 5 tumors in the lungs now, one still in the left side and now instead of 2 in the right, there are 4. They are going to try to ablate the lung with four on Thursday but one is tricky because it is close to the airway. Then they were thinking about getting the one on the other side in two weeks potentially but we will know more on that one tomorrow. In addition, there are two new tumors in her liver. So the goal after surgery is to do chemo.

Dr. McWilliams is hoping that the chemo will help reduce the others in size and also make stuff go dormant in the body again. Her last doctor had thought that way and then she was good for two years, so the hope is, maybe that would work again. Chemo for 3-6 months is what he is thinking, same chemo as before too. Then after doing Chemo for awhile we can see what the next step should be.

Was it the news we wanted, no but it could be worse. It really could be so much worse. 

It was hard to call Rod and tell him the news, he was shocked that it was back in the liver and I could tell he wanted to be here. And then calling her sisters was even more heartbreaking. I called them each separately and hearing their voice crack, the quietness on the other side, it made me want to see them. I can’t imagine how they are feeling as it is their sister, their best friend.

How is Crystal? Well, she woke up today feeling under the weather. Crystal is fighting a terrible cold, so trying to do all these tests and get that news and not feel 100% is frustrating. It’s hard to stay positive when it seems like you keep getting knocked back but we are doing our best and trusting our path.

Tonight at dinner Crystal said, “Mom, remember when we were little and if it was late or if we were busy all day and we would be getting home late, you would ask us what our plan was when we would get home? Remember? And then we would have us say what the plan was and then that is what we would do. Well mom, I still do that and right now I have a plan when we get back to the hotel room and what we are gonna do”. You know it’s funny, I remember that when they were little it helped me keep them organized and helped them feel big making their own agenda. Sometimes it would be as simple as…I’m going to take off my shoes, clean out my book bag, get ready for bed, eat a snack and then read before bed. Each one would tell me their plan… Oh how I wish it was that simple. 

2019 we are ready to fight!

Written on Friday, December 4th @ 12:00pm

How were your holidays? Did you find your blessings? Do you have goals set for 2019? I know our holidays were good, I know we found our blessings and our goals are set. However, we do know someone else knows our future, our path and I sure hope he is giving us strength and listening to our prayers.

A man’s heart plans his way, but the Lord directs his steps. Proverbs 16:9 

Since our last update we have been pretty busy.

You know when the girls were little I would always surprise them with little things to do together. I never really thought of them growing up and showing the same love. I received a group text from Crystal, Courtney and Cassidy to be ready at 8:30am, we will be picking you and grandma (Shari) up.  We had no idea what we were doing but we were ready. They took us to a very early morning movie to see the Grinch. It was a perfect way to start the holidays off. Actually that morning it was fun to see other moms in the theater with their little little ones. Listening to the little ones made you smile and take you back. I needed that.

Next thing you know, we are celebrating Thanksgiving. Rod is an amazing cook. We make a good team, I clean, he cooks and together we watch everyone enjoy.

We also celebrated Cassidy and my mother’s Birthday by going to “Elf”. It was a fun night out to dinner, then seeing a show as a family. On Cassidy’s actual birthday we took a limo ride and looked at Christmas Lights. It was relaxing. Rod and I had bid on that limo ride at a fundraiser for someone else who is battling cancer, crazy how that worked very well for our family and making memories while helping someone else.

Christmas is always at our home with my family on Christmas Eve. The girls had a wonderful Christmas however, Courtney was very ill. It is funny how we worried so much about Crystal and then here, Courtney was struggling. It is so hard to watch the ones you love be sick. As Courtney cried to me she says, “Mom, I think I just needed to cry and I know it’s not cancer.” Gosh I must say that broke my heart to hear her say that. But Courtney was feeling much better in a few days after Christmas.

Crystal is the one that decided our New Year’s Eve plans. She just wanted everyone over to her home to play games. And that is what we did. Board Games & Mario Kart = Laughs & Smiles.

Now the questions, how is Crystal doing? How are we doing? Well, Crystal looks wonderful as always. We did have a scare during this month with a mole that popped up out of no where, she of course had to have a biopsy and they also did a biopsy on her head for the alopecia. The results from her mole came back good however her alopecia is an aggressive form (Lichen Planopilaris). It broke my heart as Crystal got her news and explained it to me. Why does she keep getting stuff? On another note, Crystal is still dancing but at our last practice it was very hard for her to breathe. She gets upset. It frustrates her that she struggles with breathing when she is trying to do the things she normally does but yet she has not let that slow her down. Crystal has said she can tell she is more short tempered. She snaps. She gets frustrated. Crystal said she loved her holidays but they were different. And I would have to agree.

I did really enjoy our holidays. However, I found myself anxious for January, wanting to know the next step. Wanting to know the outcome, wanting everything to be back to normal. I had to say to myself multiply times, live in the moment. Another thing, I find myself wanting to talk to God and pray and yet not wanting too. I actually have been doing that the last few months. I have come to the conclusion it is because then I have to think about our circumstances and what we are going through when I ask for a miracle, guidance and help. It just makes me sad, I just don’t want to do that, I don’t want to feel it. So I say nothing. I say Thank You. I pray quickly. I don’t even know if that is the right thing to do but telling you all seems to make me feel better.

I would like to take a moment and thank a family for the generous gift to a movie and dinner, just so you know Novak’s we will be getting that in this weekend before we leave. Also, my cousin Kathy…it was fun to get our nails done at dance practice.

Yesterday the sun, the weather here in Iowa was beautiful and today it is repeating itself. Go enjoy it, take a walk, take a deep breath that is what I am going to do.

Crystal’s next appointment at Mayo with testing will start at 7:00am on Tuesday, January 8th. It is a full day of tests, new tests, doctor visits, surgeon visits and then more tests on Wednesday, January 9th. Her surgery is schedule for early Thursday morning.

We have four options.  They are the facts.  1.) There could be a miracle with all of these prayers & those tumors could be gone.  2.) Those tumors may not have grown, they may not be able to get them but they are planning.  Those doctors are focused to get them.  3.) They have grown, they have not multiplied, they are going to operate and yes your lung can collapse, the pain, the journey is scary but we want them out of there.  So you fight.  4.) They have grown, they have spread and we will have to figure out a form of chemo.  Oh my beautiful daughter, the one that made me a mom.  I hate your fight, I wish I could take it for you.

20 Days Later.

Written on Tuesday, November 20th @ 8:40pm

Sitting on the couch, listening to Christmas music, sipping on cold water and thinking, we need to always look for the good.

Happy Thanksgiving to you all.  A time to find those blessings and a time to remember to be thankful for what you have because it can always be worse.

Well, since I last updated you, I have had time to be upset, sad, mad and not focused.  It lasted about 4 days.

As you recall Crystal received her news that her tumors had spread to her lungs on October 31st, Halloween.  Now what you may have not known is Crystal and Gage were going on vacation the following day, November 1st.  Some dear friends of theirs had gotten married and invited people to join them on their vacation to the Dominican.  Crystal had no time to be sad, mad or worried.  She was in shock and then getting on a plane.  I would say a great form of medication for her.

As I received her text messages and her snapchat stories I could tell she was having the time of her life.  Thankful for Gage, a strong, confident, positive husband.  Who enjoys living life and making sure she stays just as positive.  They compliment each other well.

As for mom, on Thursday, I was in shock and sad.  Friday, Saturday and Sunday I tried so hard to think of the holidays, Cassidy’s Birthday, Christmas gift ideas, Amanda’s upcoming wedding but I found myself crying or just tearing up.  I could tell the people I would bump into when I was out and about didn’t know what to say to me.  They would be quiet and smile with a sad stare.  I then found myself feeling horrible for them, such an awkward feeling.  And usually after starting up a conversation, we all would begin crying.  Bumping into Emily and her family while we were shopping, even Cassidy had to walk away.

I even caught myself on social media getting upset when I would see a post from someone having a bad day, I would think, that’s a bad day?  And then I would have to remind myself we all have a story.

So Monday morning comes, I lay in bed not wanting to get up.  Almost 5 days of that attitude.  I didn’t have dance that week which was perfect because I didn’t have to see anyone.  As I lay there, I am thinking so this is gonna be my life.  I am just going to pout, be sad, not be motivated because I know the future?  Like I am allowing this?  I am going to show my daughters that life throws you a curve and it’s over?  I mean it is okay to be sad and mad for a few days but I sure in the heck don’t want to live in that frame of mind more than a few days.  Crystal is going to come home from vacation to a mother who is depressed and then she will begin to worry about me.  And that was it, I got out of bed, immediately went to the basement and decided a deep cleaning would be a good thing to do to keep my mind busy.  I cleaned and cleaned, periodically thought of my daughters, my life, the holidays, my family, my childhood, my friends, my dear friends.  And by that evening, I decided for the first time to put my tree up early.  Rod came home and was relaxing after a long day at work, then he heard some crazy noises downstairs, as he comes down the steps he asked me what I was doing with a funny look on his face.  I said, keeping my mind busy, focusing on happier times with the holidays coming.  He went back upstairs which I thought, I am not crazy.  Next thing I know he came back down and staring helping with the tree.  I was up very late that night making sure that basement was perfect.

Now comes Tuesday…I didn’t want to get out of bed again, but then it felt so good yesterday to accomplish something.  So I got up, made some coffee, started laundry and began a long day of book-work.  It felt good to get a jump start on taxes and figure our holiday budget too.  

But when Wednesday came, I was struggling.  I could feel the happiness I had for Crystal’s vacation and then suddenly getting upset for the worry I will have in January.  Life is not fair.  I am not sure what to think but I didn’t allow that negative thinking to continue.  I got up, made that coffee and deep cleaned the upstairs for Thanksgiving.  Again, I cleaned and cleaned.  Rod comes home from a very long day at work, it is late, I look at him as he had tracked mud throughout the house.  I think he could tell I wanted to flip out but instead of being angry (trust me, it does annoy me, it would be like my following him around at work and pulling out every nail he just pounded in) I looked at him and said Rod, you know the work Crystal and I wanted done at the dance studio?  I think we should do it, I think we should start tonight.  I only have a few days before she is home.  I want to surprise her, I want her to see we are not giving up.  I want her to see that we will still keep planning.  After Rod had tracked in mud, I think that helped him not say No to me.  Instead he said get your coat, let’s go.  And as we drove to the studio, I thanked him for caring and for having the talent to do that kind of work.  Courtney had to work late as she does on Wednesdays but Cassidy she was ready to tear down that wall.  It felt good, it felt right, it felt positive, it felt up-lifting.  We took some anger out on that wall and left it at that.

Rod and I worked at the studio Thursday evening.  And then early Friday morning, I had called my mom to talk about Crystal coming home and how Crystal stated this was the best vacation she had ever had.  That she wants the whole family to go there next year.  That she had the time of her life and loved the people she was with.  As my mother asks  what I am doing today, I explain I have to finish this studio, it is a surprise for Crystal.  She will see that we are not giving up.  Trust me, I even questioned doing this work when come January who knows what will happen but I have to try.  I have to keep living.  My mom offers to come to the studio and help, I really didn’t want my mom to feel she had to be there all day but she insisted.  And I am so very grateful that she did.  14 hours straight of updating/cleaning that dance studio.  I could have never done it by myself.  I rehung every poster/calendar/photo in order of starting this business.  After talking to my mom, Rod and her sisters we decided to say nothing to Crystal until Monday when we were going to work.

After enjoying Crystal and Gage being home and hearing all about their trip.  It was already Monday.

Picking Crystal up for work and I could tell something was wrong.  She says, Mom I have horrible news.  I got it about 5 hours ago.  I needed time to myself to take it in.  Mayo called me.  I will be going back January 8th with testing for two days, some of the testing is the same but there is more new tests.  Not including I have more doctors added to my team of doctors I already have.  They have scheduled a surgery on the 10th for one of my lungs.  They will do each lung separate just incase one were to collapse.  Then two weeks later if everything is good, they will have surgery on the other lung.  Mom, what are we going to do about dance?  I want to dance mom and it’s like everything is in the way.  Why is this happening?  I didn’t even want to go to the studio today, I just keep crying.  It makes me so sad.

I took a deep breath, as I listened to her.  I even thought to myself, not only was it great that she got to have that wonderful vacation.  But with her leaving it gave me a week to cry, be sad, be angry and not feel like I had to be positive because she was home and would need me.  Maybe God gave me that time to find my focus?  As I explained to Crystal, be sad, be mad, cry, sleep I did it for four days.  I couldn’t find my focus.  You my sweetie have not had time to do that.  You have been on the go, so take that time.  You deserve.  You’re right, I dont’ know what to do about dance but you know what I do know?  We need to keep planning.  We can’t stop.  We can’t give up.  We have four options.  They are the facts.  1.) There could be a miracle with all of these prayers & those tumors could be gone.  2.) Those tumors may not have grown, they may not be able to get them but they are planning.  Those doctors are focused to get them.  3.) They have grown, they have not multiplied, they are going to operate and yes your lung can collapse, the pain the journey is scary but we want them out of there.  So you fight.  4.) They have grown, they have spread and we will have to figure out a form of chemo.  Oh my beautiful daughter, the one that made me a mom.  I hate your fight, I wish I could take it for you.

As I open the doors to the studio she looks at me and says, Mom did you? Her arms wrapped around me as she cried and said Thank You Mom, I needed this.  I need to keep moving forward.  Just then her dad walks in and smiles and says what is all this crying about?  

I find it interesting that we did everything we could to get that studio ready in three days. for her new journey that she wanted so bad with he Spirits.  The timing of Mayo calling, our drive to Lindale Mall with the heartfelt conversation and then her seeing the studio.  I feel God planned it that way.  I can’t explain the joy of us hugging her and actually seeing her find hope with staying focused on living life, on planning, on moving forward.

As for Crystal, she is putting up her tree, excuse me, trees.  She is thankful for all of the support, kind words, thoughtful messages.  She is ready to enjoy her holidays.  And as I explained to the family again this year, embrace this holiday because you never know if you will all be together for the next one.

 

 

 

Driving Home…

Written on Thursday, November 1st @ 8:15am

What a long day.  Crystal’s last appointment for the day was at 4:05pm.  We had been up already for 12 hours and still had our drive home.  The day comes with anxiety, your emotions are all over the place and that alone can make you exhausted.  We sat in the doctors office just like we always do, Crystal, Gage, Mom and Dad sitting on the bench waiting for the news.  Each of us have our own thoughts, each of us make small talk and somehow we all find time to giggle.  As the nurse finishes taking her blood pressure, the velcro from taking the cuff off her arm seemed loud to me that day, which I thought to myself, it’s funny how that sound almost makes me sad anymore.  The door opens and in walks her doctor in his orange tie.  So nice looking, reserved and polite.  And we hear her news.

The liver has two spots that they’re watching and they still are not sure what they are.  We did know of those spots and we are very happy that those are the same.  Such wonderful news.  But the new news is, it has moved to her lungs.  Since June’s appointment the spots in her lungs have grown and a new one has been found.  We also know that the spots are too little at this time to try get.  Two tumors in the right lung and one tumor in the left.  We have options, we wait until January, see if more multiply, see if they grow and then we try to go get them.  We could also go back on chemo to hopefully keep them from growing and multiplying, there is no guarantee with that and then she could end up being on chemo for the rest of her life.  There is also a few other things that she might be able to do.  I tried my very best not to cry as I ask the doctor if she was your daughter what would you tell her to do…and he says as he looks at Crystal.  I think you should enjoy your holidays, the spots are small and we wait to see what they do.  So that is our plan.  We wait, we pray, we trust, we believe and we do our very best to not take these holidays for granted.

As we walk out of the office we hug each other, we say it’s not the news we wanted to hear but now we enjoy the holidays, we have a plan.  Crystal is quiet, Rod is quiet, Gage calls his family, Crystal asks me to call her sisters and then I call my mom.  We make a plan to meet at BWW when we get back into town.

We stop at a gas station not to just get gas but to get some chocolate, some candy, I guess it’s our Halloween Candy for the ride home.  As Gage and Rod get out of the car, Crystal says, “Mom, I just want to dance.  Don’t quit the studio, I need the Professional Team, I want to perform this year.  I really need to mom”.  I said okay, we’ve got this.  I took a deep breath, I could feel my tears.  The boys get back in the car and it is quiet.  We do of course go through a few small towns on the way home, we could see some trick o treaters and how happy they probably were.  What a beautiful night for them to be out.  As I continued to drive home, the three of them slept.  I watched the farmers on their combines working in the fields, the dust, the semi trucks, the smell, all the deer coming out of the fields.  It’s actually very beautiful to see, it’s peaceful when the sun is coming down and you see them working in the fields.  It is like a picture you see in a magazine of the midwest only I am really seeing it, seeing the beauty.  That morning when I drove, right when the sun was coming up, the three of them were sleeping again and I watched the farmers getting their day started in the fields.  I wondered what their life is like, must be a long day for them too.

So I count my blessings, we still all have each other, Crystal is very loved, she is not fighting alone and it can always be worse.  I know where my children are and I am lucky they are still with me.  Thank You God I found some blessings but I need sometime to cry and be mad.

I can’t sleep.

Written Monday, October 29th @11:30pm

I am laying in bed, tossing and turning, my mind will not rest.  I guess a perfect time to do a little update for you and get those prayers started for Crystal’s Mayo Appointment on Wednesday.

Crystal is looking great.  She feels good too.  But like she says, I have felt fine before and the cancer still had come back.  Yes, she has had some emotional days, I think we all have, however we’ve been extremely busy and that has helped keep her mind on other things.

Crystal has been dancing like crazy, with all of the changes in the dance studio it has been very busy and uplifting, positive also it has been going well.  Crystal was excited for the change, yet nervous how she would feel about it and after our first “Experience” she said, “Mom, that was fun.  I really didn’t know I would have that much enjoyment with it”.  I must say, seeing her smile and happy made me even more happy that we are still dancing.

Also since the last time I updated, Crystal and I went to Laughlin, NV.  It was wonderful, it was perfect, it was needed.  Just a few days at the pool, then some sight seeing.  Memories were made and yet it gave her sometime to relax after that last painful procedure.

I can tell you a little story.  We were doing some shopping at Bath & Body Works, one of our favorite stores.  As we are smelling some of the wall fragrances, picking our favorites, Crystal had picked one up and said, “Oh No Mom, don’t get this one.  It make me almost sick to my stomach”. I said, “Does it smell bad? What’s wrong with it?” Crystal says, “When I had my apartment with Teal (her roommate), we picked this smell for the our place.  It was when I got sick.  I can’t smell that mom.” Crystal walked to the other side of the store.  That was it, she was quiet.  We bought our stuff and left.

Crystal had a very hard time with clothes that she wore when she was first sick, the thought of wearing them again made her sad.  We got rid of a lot of clothes from that Christmas.  The smell of Windex because we were doing a deep cleaning in the studio before the new year and she had no energy. And then the smell of this wall fragrance…So that got me thinking.  When we were on our family vacation in FL in 2013, we had no idea how sick Crystal was, on that trip I ate a lot of this Salted Carmel Ice Cream, it was amazing, I had never heard of it before.  Coming home from that family trip is when we learned of Crystal’s diagnosis.  Makes me sad typing that memory.  Anyway, a month later some of my students got me a gift, some chocolate that was Salted Carmel since they knew I loved it on that vacation.  You know, I took one bite and I was sick.  I couldn’t eat it.  I can’t handle the smell of it or the thought of it…

They say out of the fives senses (touch, smell, sight, sound and taste), smell is more related to our memory system.

Anyway, thank you in advance for those positive vibes and prayers.  Happy Halloween to you all.  This last weekend we celebrated Halloween as a family since we knew this Halloween would be a little different for our family.

Wonderful Wednesday

Written Wednesday, September 12th @ 9:00am

Sitting in my kitchen, drinking some coffee and watching “Christopher” excuse me, “Chistopurr” play.  Yes, we have a new addition to the Kuehl Family.  Approximately a 4 month old kitten.  A veterinarian happen to rescue 3 little kittens that were left in a box, behind a local store.  I guess so they could die?  People can be so mean.  I never thought I would be a cat mom but goodness he stole my heart.

I thought today would be a good day to share how Crystal is doing.  Your fighter is strong, happy, confident and living.

We have learned that Crystal’s next Mayo Appointment will be on Wednesday, October 31st.  It breaks my heart to hear her say she doesn’t want to go.  She is not the only one that is afraid to hear what the doctors find but to stay on top of this fight she has to go.  Now how do we keep from worrying, from stressing about the appointment, well we keep busy.  We keep planning.  We keep living.

Crystal has a new journey going on in the dance studio, so that is keeping her Spirits Alive.  Let me share a little bit about this journey.

I started the CR Spirits 25 years ago.  I just thought it would be nice to get out of the house once a week to dance.  To have an adult dance team like the Dallas Cowboy Cheerleaders only here, locally.  I mean I married young, I wasn’t going anywhere so where could I do something like that only here in Cedar Rapids?  See I have no former dance training but I love music and for some reason, I could/can choreograph steps quickly to music.  Do you believe in Guardian Angels?  I do.

I gave myself a goal to have a dance studio of little girls in just three years after starting this Professional Dance Team of women.  You know what?  It came true.  In a couple months of starting this dance studio we had a year waiting list to get into the CR Spirits.  

For 25 years I have been blessed with opportunities that you could only dream about.  Oh yes, I have had my share of negativity but I smiled through it all even on those days I question those thoughts, those people, those remarks.  I could share stories with you…

And now today, my children are older, I am older and I feel like the last 5 years has been extremely hard to run this dance studio through everything we have gone through as a family.  A dance studio is uplifting, creative, positive and fun, yes…it should be fun.  But it is hard to be the owner/choreographer and yet a caretaker to someone who you unconditionally love that needs you.  Some days you just don’t want to dance, choreograph, and smile through it all.  Yes, Crystal’s journey is my journey.  She is my daughter, her life affects my life.  Isn’t that the way life goes?

I wanted to make it to my 25th year with the CR Spirits.  Just think, a dance studio who has been in business for 25 years.  Who has been changing the lives of girls/women for 25 years.  Who for 25 years has had 25 Professional Dance Teams with approximately 13 women every year volunteering throughout this community.  These women gave their time, their talent, their life experiences to help build each other up and build a network and all along they were supporting me.  It wasn’t until I grew older that I realized what blessing that is.  Again, I believe in Guardian Angels.

So with Crystal’s last cancer fight, I explained to Crystal that I am exhausted.  I think it is time for a new journey for both of us.  It is time to say good-bye to the CR Spirits.  I am 48.  I am not sure what to do but I do know that I want to leave on a high note.  I am proud of where we are and what we have accomplished over the years.  I am proud of the guts, the courage and the strength that I had in me when I was the only one that believed in my dream.  I will miss it but I am ready embrace something new.

With those words I watched Crystal cry.  I watched the tears roll down her face as her eyes stared into mine.  She knew there was a possibility but I don’t think she thought I would do it.  As she says, “Mom, we can’t end this.  I love dancing.  I love performing.  I love teaching.  It helps me feel alive.  It takes me away.  We are good at it.  We are good at coaching and building others up.  We make a difference.  You just can’t quit the CR Spirits.  I have lived Spirits my whole life.  What if my cancer comes back, I need Spirits in my life.  It has helped me beat it.  You can’t quit this, please mom.  Don’t you want to change more lives mom?  How many people can say they do what they love?  Seriously mom, like you say people forget their passion, their love and they become bitter, gossipy and negative.  I think this is a bad idea.”

Needless to say it broke my heart hearing her talk, watching her cry.  She made me question everything I was confident in doing.  The next two days I prayed, I begged, cried and prayed some more.  I asked God for a sign, to give me strength, to give me a new outlook, to give me something.  I actually felt guilty asking him, why…because he just answered everyones prayers with Crystal’s fight and now I need help again.

But I listened to my gut again, my inner voice.  And chatted with my dear friend Kevin.  Yes, there will always be someone better than you.  There will always be someone who does not like you.  But does any of that matter?

Funny thing, I asked Rod for advice.  25 years ago Rod didn’t really care what I did.  We were both 23, already married 3 years with a one year old.   Marrying young we had obstacles, we both were still growing up.  Rod didn’t think the CR Spirits would ever take off and goodness when it did, the jealousy became apparent.  Marriage, family it is a journey, why share that with you?  Because sometimes if you can hang on through that rough patch you can get to the other side.  If you would have asked me 25 years ago that Rod would have a positive idea for the future of the CR Spirits I would have rolled my eyes but look, 25 years later, I liked what he had to say.

So yes, a “New Experience” for the CR Spirits begins in October.  No one can say I didn’t try.  No one can say I didn’t use the talent God gave me.   www.crspirits.com

I have to take a moment and thank some pretty incredible people that made this last journey a little more hopeful.

*Some parents in the dance studio who started the gofundme page.  You know at first I was reluctant to do this when you first came to ask me if it would be okay for you to help us.  It is such a humbling, an embarrassing feeling to have people give but I could feel how excited and happy you all were to help, to feel like you were doing something for my family.  It is very hard to just say Thank You, very hard.  So again, Thank you Amy, Laurie, Tammy and Stephanie for being positive, thank you for being hopeful.  Thank you for loving us and making us feel special.

And to the people that gave to the gofundme page, we are blessed and we are thankful.  I hope you each received our thank you’s and know that money is there waiting for the expenses.

*Crystal’s new Fighter T-Shirt has been a blessing.  I am so glad I saw the image on Facebook that gave me the idea to do it.  Thank goodness Showbiz Screen Printing could capture her look.  I will be doing orders again but you will have to come to the Spirits Studio to prepay.  I will not order extras and will not order ones that are not prepaid.  To everyone that has purchased a t-shirt, Thank You and I must say you look good wearing it!  We are taking orders until October 12th!

*Dirty Shirley’s thank you for making a special night for Crystal.  Think of all of the memories you helped others make that night in honor of Crystal.  Thank You Heather.  The money that was raised went to her hotel expenses for this last procedure.

*Crystal’s Lip Balms from Raining Rose.  They’re perfect and we only have about 60 left.  Thank you Cam for coming up with the idea.  For surprising us with such a thoughtful gift and then to sell them for our expenses while we are at Mayo.  As Crystal says, “These are nice lip balms, they don’t dry your lips out.  I am surprised how good it is”.  Thank you again Cam.

*My high school friends, what can I say, 30 years later and I am blessed to say that you are still in my life.  What a beautiful surprise to all go to Crystal’s home to say prayers.  Wearing purple, holding candles and if that is not enough you come with kind gifts.  You made her feel special, you made me feel even more special and I hope that you know if you need me, I am there.  I can still here your words Rachel but I don’t cry maybe because I have no more tears, I just smile because I feel blessed.  Thank you Rachel, Kris, Nicole, Barbie, Christine, Rita, Kelly, Lydia and Dan.

*BJ and Andrea you sure made Crystal and Gage smile with all of the dinners.  They loved them but they didn’t share lol

*And my dear friends Amy and Anthony.  I cherish our history, I think that is what makes our friendship even more special.  Thank you for raising two beautiful strong girls with kind hearts.  Alanna and Amyah for some reason Crystal’s Story has touched you both but I love even more how we each find strength from each other.  On another note, we are thrilled that we get to watch you on TV again this year. 

*To everyone from family, friends, neighbors, to the anonymous ones, your positive energy, prayers, cards and gifts have been felt and we can’t thank you enough.

As for the rest of the family,

Rodney just celebrated a birthday on August 29th.  As always he is working hard and would do anything for his family.  He actually plays on a Bocce Team and is doing really well.  He is in the Championships Friday night.  Go Rod!

Courtney loves her life.  She is enjoying being 23.  She loves her career, she loves clothes, she loves working out and I love her.  Courtney has enjoyed her year by going to many music concerts/festivals.  Actually, Rodney and I will be joining Courtney and Alec at the Justin Timberlake Concert at the end of this month.  Another memory maker coming up, I can’t wait.  I love Courtney’s spunk, I love how she has her opinion and is not afraid to say it.  Courtney plays volleyball on Thursday nights and I never seem to get there and get a photo, ugh.  But I bet Courtney is glad there are no photos being taken.

And Cassidy, she if doing well.  Such a heart she has.  Here is the post from FB.

Your first day of Kindergarten you were excited to be big like your sisters, you were happy to be doing something new, however you were nervous and scared too. Those butterflies in your tummy I’m sure started all over again on your first day of school this year…excuse me, I mean work. Congratulations Cassidy on the job you’ve been wanting for two years. I think the timing is right this time. God had a plan, he needed you to go out into the world a bit to see what it’s like, to learn from others, to find your path and helping people is what you enjoy the most. Funny, you always knew it. You have had a job since you were 16. You have learned that you are hard working, dependable, helpful, kind and organized. Those are huge things Cassidy and I think you are starting to see what positive qualities those are. You have met some wonderful people along the way and just like in school you have learned that their are many types of people. That’s how you learn, that is how you grow.
Prairie School District is lucky to have your kind heart. Because Cassidy this is what you are passionate about. You will be an incredible Paraprofessional. You will be ready to touch the lives of some of those students because you will remember the anxiety and bullies you have met along the way. I’m proud of you.
By the way, thank you for sending me a Snapchat of your first day so I could have a pic.

I end with a message I found….  “So far you’ve survived 100% of your worst days. You’re doing great.”

18 days later

Written Saturday, August 18th @ 5:00pm

I’ve mowed, finished up laundry, picked up the house and I’m thinking it is time to do an update. Crystal, Courtney and Cassidy had some special time this afternoon getting pedicures. Crystal said, “I love my toes and we had a great time mom”.

It has been one week since we were at the Iowa State Fair. The sun was out, there of course was a crowd of people, and it was hot. The CR Spirits were performing again this year, although Crystal had to watch and not perform. That is something that made her sad until one of our Li’l Spirits said, “I can’t wait for Crystal to watch us perform this year”. It’s funny how your attitude can change when you know you are making someone else happy.

We were lucky to get a wheelchair so she could enjoy the day, there were only a few times where Crystal had broken down. Besides the day being very hot which made you very sweaty, you learned that there are so many people that do not move for a wheelchair. Then you have the pain, the worry, and the emotions of feeling helpless, that together is what caused some emotions for her, for all of us.

But that very next day, I received a phone call from Crystal. “Mom, I feel really good. Like I am not even taking my pain meds, just Alieve this morning. I even went shopping for a bit. I feel so much better”. I was in shock, I mean just yesterday she was still touch and go. It was crazy, maybe the heat made her sweat it all out, I don’t know but I was so relieved. I was so happy, so exhausted and even asked her if she was kidding me. Crystal was ready to get back to her routine.

So this last week has been her best, yes she has her moments of discomfort, yes she does get tired fast, yes she is happy that she feels better and yes she worries of it coming back. She repeats constantly I don’t want to do this again.

Crystal believes that this recovery was her worst. It scares her to think about her future. I am not sure if any of you realized this, but Aretha Franklin who recently passed away, died from the same form of cancer PNET as Crystal is fighting. It has gotten a lot of attention from the Neuroendocrine fighters, survivors and caretakers.

So here we sit, summer is about over, school is just about to start up again, everyone’s schedules will begin to change and a lot of us are ready to get our new routines started. Thank you again, for the prayers, the messages, the thoughtful words, the stories, the gifts, your kindness and Cheers to everyone’s journey…

How is Crystal?

Written Wednesday, August 1st @ 2:30pm

I am sitting at the kitchen island in Crystal and Gage’s home.  “Storm” their beautiful cat has been waiting for me to go to another room so she can finally snuggle with her mom.  Let me just tell you, “Storm” is a perfect name for their cat.  You would think that their cat has no heart until you see her with Crystal.  Crystal is finally resting on the couch.

Well, I have not forgotten about all of the Crystal’s Prayer Warriors.  I have been overwhelmed and so has Crystal since we’ve been home.  First of all, thank you for the Anniversary Wishes.  Second, thank you for the prayers, cards, messages and thoughtful gifts for our daughter/family.  Now to your question on how Crystal is doing since she has been home?  I can tell you this, it has not been good.  It has been horrible.

Crystal got home late Saturday afternoon.  I can say we were all extremely tired.  Sleep was the first thing everyone wanted to do.  I left Crystal alone that evening.  We wanted Crystal and Gage to have that space as she settled home from surgery.  I was hoping by Sunday, when I checked on her things would be improving.  But what I learned from that call was she was not doing well.  Rod and I got to their home to help out and wanted to let Gage know that he sure can take a break if he needs it.  She is in a lot of pain.  A constant pain/ache.  At some moments she lets out a moan/scream.  She feels full, she can barely talk, she can barley breathe.  We stayed a while on Sunday and decided I would be back over with her Monday at 7:30am, when Gage would be leaving for work.

Monday was a horrible day.  I can’t describe it to you.  But when you are home and not in a hospital you question everything.  She is moaning in pain, your mind goes back to the very first surgery in 2013.  Those complications she had.  Then to the tumor by the aorta, they learned of another complication and now you wonder if there is something else wrong this time.  You also know the only way to find out is by a scan or blood work, something I can’t do at home.  Watching your child hurt, is heartbreaking.  Absolutely sickening.  You feel so helpless.  However, I did my best, I stayed positive and I asked God to help.  And funny, he did, he gave me strength.  Even if you yourself do not believe, I can at least tell you it sure feels better to feel like someone is listening, like you are not alone.  With that, my mother instincts came into play.  I did things I did while she was on chemo, I remembered tricks I did when she was little.  I focused on a new routine but still keeping one that was familiar.  As I helped her get ready for the day, something she was not really interested in, I explained how good it will feel brushing those teeth, taking that shower.  She listened, she did it and when she was done, she said that felt good.  As I was putting lotion on her.  My hands massaged her neck and shoulder, as I moved down to her arm I see something.  I look more closely and realize it is all black and blue, she was bruised.  There were so many pokes from IV’s and giving blood, that my heart sank seeing the reminders on her little arm.  She is so much stronger than me.

I told myself over and over, thank goodness they got the tumors and didn’t leave one behind.  All this pain and then knowing they left one in her liver would be even more difficult.  I would say to Crystal the pain is worth it not having those tumors.  It is keeping you alive.  And she would say, I don’t want to do it again mom.  So let us take a moment and think about that doctor.  That amazing doctor, who didn’t quit.  He had two surgeries that day.  Crystals in the morning and another one in the afternoon.  Crystals surgery lasted longer than expected.  When they told us he was working on the last tumor and it could be possibly another 45 minutes, well it ended up being about an hour and half longer not including he was already behind.  What I am saying is, he didn’t give up.  He didn’t say, I can’t find it but I tried, or I have another surgery scheduled so we can get it next time.  He didn’t say, we will watch it, keep an eye on it or we will wait for it to get a little bigger then get it.  He didn’t mention chemo or that we can try to get it next time.  He stayed patient, persistent and he continued to do his work with his God given talent.  Thank you.  Thank you.  And to the person that was after Crystal.  I did think of you and I did say a prayer for you, so did my mother.  I will never complain if something doesn’t start on time again, there is always a reason.  There is always another side.  And I am sure that other patient had no idea that he was even behind scheduled, he/she probably wondered why am I here so early.

After being with Crystal all day Monday, seeing the troubles she was having, we did call Mayo.  There was a concern that we may need to come back for a scan but to try somethings and see how the afternoon goes.  Running to the dance studio that evening, seeing Katelynn made me cry.  Seeing the parents in the studio made my heart race a little.  I knew I would be checking on Crystal later that evening and then after speaking a little with her family doctor, who has been a good friend.  I felt like we had a plan.   I would be back with Crystal on Tuesday morning.

In the middle of the night I woke and saw that I missed two phone calls 11:30pm & 12:30pm from Crystal, I was just sick.  I called her and she said, mom can you come here.  I was there by 12:45am.  Gage looked just as wiped.  He was trying just as hard to comfort her.  I told Gage, you have work in the morning go to sleep, I will stay.  I never left her side.

I finally got her to sleep maybe two hours and by then it was morning.  So I started the routine again.  This time I added a drive to grandmas for toast and a little coffee from Starbucks, something familiar.  Something that brought back happier times for us.  She got to visit with Bob, Bret and Michele which made her smile as Bret told some funny stories.  As she got in the car I grabbed her hand and squeezed it.  Crystal grabbed mine and never let it go, as I drove I held back some tears and then told her a little story.  I said when you were little you would be in your car seat.  In 1992 you could be up front.  When I would drive I would put my hand on your car seat and you would hold my hand as I drove.  You could only get your hand around two of my fingers.  I must admit it was still a hard day but I swear it was better than Monday.

As our routine continued through the day, she began to get worse.  The pain was becoming too much.  And then she says, “Mom, I don’t want you to go anywhere.  I feel better when you are here with me.  Will you stay here again.  And if you have to go home to do some stuff can I go with you”.  Her eyes were teary and as good as it felt to hear your 26 year daughter say that, it was also sad to hear it too.  I knew the pain was bad to want her mom.  It makes me cry typing that yet thankful that she finds peace with me.  See we always want mom, any age, I am 48 and am blessed to still have my mom.  Mom’s get it all.

As the night went on, Crystal wanted dad to come here too.  And then maybe dad can watch a movie with us.  Rod he is working so hard, then driving back and fourth from Mayo to work.  The worry he keeps to himself as he tries to be strong.  Gage, how loving to let her family come into their home and help.  Very good men.

Now it is about 10pm Tuesday night, it is not good.  I am exhausted, Rod has gone home to get ready for tomorrow, Gage is trying to figure out what we should be doing and I am running on no sleep.  Then it dawns on me, when she was little I would take her for a ride, that morning I took her for a ride.  So that was it.  I was taking her for a ride.  I gave Crystal her pain medicine, grabbed her blanket and pillow and said we are going for a car ride.  Gage said really, do you need some rockstars?  I am like I probably do but when she was little even her sisters, I knew a car ride would put them to sleep.  Gage had work just like Rod, it is better to have someone with sleep.  So off we went, Crystal and I left the drive at 10:30pm, she was out by 10:35pm.  I drove to Marion, Alburnett, Center Point back through Cedar Rapids.  As she slept.  It was peaceful, the moon was pretty, I talked to God.  When we got back to her home, she walked to the couch, the pain was still there however she was relaxed and fell right back to sleep until the pain started again about 3:30am.  Gave her dosage and off to sleep again.  I believe Crystal got 8 hours of sleep last night.  It is probably not the best sleep but it is sleep.

Today, Wednesday, August 1st she has improved.  We are doing our new routine for the day.  Another drive to grandmas to see everyone and have some toast.  Yes, still pain, baby steps but better.  She has talked more today, she even grabbed her cell phone.  We even walked into Target where I saw Emily and couldn’t help but to cry, I told Crystal I am sorry she said it’s okay mom go ahead and cry.  Crystal even showed Ivy, Emily’s daughter her stomach.  As we say our goodbyes, Ivy says, thank you crystal for showing me your tummy.

Crystal now rests, still wants mom to go nowhere and that is a blessing that I truly love.

Some of you have asked about her sisters, Courtney and Cassidy have been wonderful.  The three of them have a bond.  They need each other.  However, I do worry about them, about them thinking I love Crystal more.  But that is not true, I could never imagine loving one child more than the other.  Yes, they all have different personalities but that is exactly what our family needs.  Thank you all for loving our family.

A funny story in the hospital, there was a gentlemen on the same floor as Crystal.  He was older.  He was grumpy.  You could hear him.  He would yell.  I don’t want to give him to much attention but he made you feel sorry for the nurses.  The rudeness of people.  As I was rubbing Crystal’s back, it was just her and I at the time in the room, you could hear him yelling.  He was so rude, then Crystal says, “Mom shut my door, I do not need that negative energy in my room”.  That is right, stay away from it, that is what Crystal has taught me.

We are home.

Written Saturday, July 28th @ 4:45pm

Today we walked out of the doors at the Mayo Clinic Hospital, Saint Mary’s Campus. 28 years ago we were walking out of the church doors after saying, I do. Both photos we are happy, one of them we are looking our best and ready for our new journey, the other photo…we are exhausted. Trusting God, trusting this path. Happy “Golden” Anniversary Rod. 28 years on the 28th of July. And what a beautiful gift to bring our daughter home.

#happyanniversary #goldenanniversary #28years #lifeisajourney @ Mayo Clinic Hospital, Saint Marys Campus

 

She is staying another extra night…

Written Friday, July 27th @ 1:30pm

Crystal looks so peaceful right now as I sit next her. I tucked her in, tickled her arms until she fell asleep and now I’m playing catch up to all your messages. Crystal will be staying another extra night at the hospital as we try to get her pain under control.
Today, Crystal did get up and walk… She stared out the window. She doesn’t say much, it hurts to talk, to eat, to smile. She has made remarks that she never wants to do this again.
Rod has gone home to work for a day and will come back tonight. Cassidy came up yesterday ready to do anything for her sister, Courtney surprised us this morning with help from Cassidy. My mom, Shari has not left and Gage has been a phenomenal husband💜

 

Surgery is over.

Written Wednesday, July 25th at 5:20pm

As we walk into Crystals hospital room after surgery, she lays there so still. It looks like she is barely breathing. It’s actually difficult as mother to watch her lay there like that. I could feel my tears.  You can see the pain in her face even with her eyes closed. Little smirks when we ask a question. Even a little nod.  But really after a surgery, you want it quiet. You don’t want to talk, you want to rest. We hung her poster for her doctors and nurses to sign and went to the waiting room.

I had to go back to the room real quick, to see the doctors name on the board. As I quietly walk into the room. I see her eyes open. She says mom I need water. She looks sad, she looks like she is gonna cry but she takes her drink. I ask her if she needs me to stay, she says no, can you shut the door. I slip out of the room with a few tears.

We meet with the medicine doctor on the floor this evening. There is a concern with her kidneys with the dye still in it, they will work all night to flush it out to make sure there is no problem with the kidneys. So please pray for that. Please pray for her pain to go away.

But now for the other side, the moment Doctor Schmit and his nurse come to talk with us after her long surgery. I can see at the other end of the waiting room he is walking towards us, I think he is smiling. Dr. Schmit begins to tells us he has done many ablations in his life but this one was the most difficult one he has done in a year.  He apologized for how long it took. The first tumor was easy but the others were difficult. After more time with a doctor that didn’t give up , he got them. He got all of them!!!  And the one that is questionable, he has disregarded. We were all shocked, happy and listening to everything so closely. Crystal has her team as the doctors have theirs.

She is going to be in pain for awhile. It is going to be a long road. But with prayers, positive people surrounding her & goals ahead of her, she will be just fine. We’ve got this! 

God is good. Thank you all for your support. Now I need just a little time to myself….

She is in Surgery…

Written Wednesday, July 25th @ 9:00am

We sit in a large waiting room, there is only one other family in here.  I’m a little chilled, thank goodness I brought a cardigan.  I feel exhausted, my eyes are heavy and I’m thinking I need to get a coffee.  Rod is playing games on his phone, Gage is picking out new phone case for Crystal, my mom is writing thank you’s from her thoughtful gifts she received and I am thinking I need to do a little update before that coffee.

We had to be at St. Mary’s this morning at 5:30am.  I can tell you Crystal has had a good morning.  Yes, she is nervous but the same kind of nervous before a surgery.  We are also the same kind of nervous too.  Crystal has smiled and laughed, we actually all laughed this morning for about 45 minutes.  So I guess we can say it’s been a good morning.

Yesterday was long.  Very Very long.  We left our hotel at 5:45am. Tests began at 6:15am. Crystal finished her MRI, blood work, the New Nuclear Medicine Pet MRI Scan…which scared her to death.  She doesn’t want to do that one again. She said she about cried & had to stop. Crystal had to lay there as they took this big fat tube filled with nuclear radioactive stuff and injected it into her arm.  It was very uncomfortable, it hurt going in she explained. Then she had to relax and sit in the dark for about an hour.  Before going into the machine she had to put on this huge helmet, laid strapped down, with a help button in her hand.  She could not move at all, as they slowly moved her into the MRI Machine for 45 minuets and then another scan for 35 minuets. She said she did good for about the first 20 minutes, then she got an itch on her face and realized she really couldn’t get it.  It was taking her breath trying to wrinkle up her nose, the tears came, the worry came and then she talked to herself, she calmed herself down.

Crystal finally got to eat a bagel around 4pm. Crystal’s Surgical Team meeting was about 4:30pm. And our meeting with her doctors at 5:30pm. It was 6:30pm when we finally got some dinner.

We learned that the Dodatate Pet Scan worked for her type of tumors. With that being said, we have of course the two tumors from the last MRI that they can see, but we have found two new ones, with one of them being just as big as the other tumors from the previous scan. What is scary, is that they can’t say if it has grown that large in less than a month or if it just didn’t show up on that last scan? There is also a questionable lesion that they will be looking at closer today.

Our doctors are confident, we are confident.  But that doesn’t mean that mom, doesn’t cry and worry.

As for the love we are receiving, it is wonderful.  It is beautiful.  I have received a few messages that have touched my heart.  I have asked God do really deserve all of this support?  I have found myself looking around Mayo, feeling guilty that we have so many people that care, that are reaching out, that are taking the time to share their feelings.  I wondered, if others here that are sick had the same uplifting people in their lives.

As we walked over to the hospital this morning, I made a remark to Gage about when Crystal was first diagnosed. I was telling him that she had a fundraiser, a Dance-A-Thon.  I had to speak at it, I was scared and nervous.  I was happy and sad all at the same time.  It was humbling I told him and I explained how I was telling the crowd of people how it could be worse.  That it was horrible, shocking and sad what we were going through but it could be so much worse.  Crystal is still here with us, she was not taken suddenly or by a car accident or by someone who had taken her to harm her.  I knew where she was, she was with me.  I couldn’t imagine not knowing where she was.  I couldn’t imagine how a parent would feel not knowing.  I don’t think I could handle that.  So I will take this battle over that one.  The crazy thing about that remark was the next day they found those three women who were kept captive.  I believe they were missing for about 10 years.  So many of you from that Dance-A-Thon reached out.  They couldn’t believe I had just spoke something about that.  I must admit it did give me goosebumps.  And now today, we have a girl, a young beautiful girl missing from Iowa, Mollie Tibbetts.  It breaks my heart for her parents, her family, her friends.  I can’t even begin to feel the pain they feel.  It makes me sick to my stomach.  So I will take the prayers we are getting for my daughter and I will ask God to listen to them and if you need some more for Mollie, I know our family will share.

A big week.

Written on Monday July 23rd @ 7:45am

I sit here in the peace and quiet.  No kids, no music, no television.  No talking, no dog wanting my attention and I am packed ready to leave.  I am thinking of everything I want to get off my chest, what I need to say, and it overwhelms me.  I am looking at the most beautiful yellow roses from my dear friend Shannon.  I reread a beautiful card our sweet neighbor Michele wrote.  I stare at the paperwork from the “Crystal T-Shirts” and I am thinking, over 200 people will be wearing them Wednesday.  Such a blessing.

I can tell you July has been a busy month.  We celebrated the 4th of July, went to dinner with some dear friends, went to Uptown Friday Night, had a birthday celebration for Rod’s dad turning 80.  Then it was time to wish Crystal & Gage a happy 2 years before they headed off to Maine for their vacation.  Gave Courtney and Alec hugs before they were off to Nashville.  My nephew Colby turned 20.  We had parades, we had fairs, tractor pulls, and awesome concerts.  And then my beautiful mom finally retired from Coe College.  Yes, we stayed busy.  Very busy.

A lot of you are asking when her surgery is.  Here is a little info.  We leave for Mayo Monday, today.  She will have testing all day Tuesday.  She will be very hungry with having to stop eating early this evening because her tests start at 6am and I believe she will get to eat after 4pm, then meeting with her surgical team and her doctors.  Surgery is scheduled for Wednesday.  So if you are looking for a day to wear purple, zebra or one of Crystal’s Fighting Shirts…Then that is the day.

Some of you are seeing some fundraisers on FB.  Yes, they are legit.  Thank you for asking.

We had a few moms in our studio get together and do a Go Fund Me Page.  I must admit, it was difficult to think about all of this again. It is humbling, exhausting, and it is very hard to just say Thank You.  It was very hard to read what they wrote as well.

I also have a good friend who owns Dirty Shirley’s (88 16th Avenue SW, Cedar Rapids) and is doing a benefit for the day.  10% of all proceeds from the day will go to Crystal.  They will all be wearing her shirts, so please stop in and have a drink, don’t forget to take a pic too.  And this big day, will be the day of her surgery… Wednesday!  Again, Thank You.

As for the t-shirts, we sold over 200, that will be taking care of the hotel expenses, gas, food for this trip and possible the next one too!  Thank YOU ALL!

As I was talking with a friend, telling them how I felt with everything going on.  Discussing the fundraising that is happening and how I just feel so weird with it all.  I can’t even describe it.  But that friend made it clear to me to embrace it.  To say Thank You and that is it, because people do care and want to help.  I really needed to hear that, it help me just let go and put it in God’s hands.

Now how is mom doing?  It has been very difficult.  She has been on vacation so I think with her being gone, made it hard for me to stay strong.  Also, with her t-shirt sales I got to visit with a lot of people that are her prayer warriors.  So lots of wonderful vibes, yet many tears.  Not including, she got her news and then we wait before we could do anything, that seemed so hard this time.

Now how is the family holding up?  I think we do good as a family.  I think we are positive.  We keep busy.

How is Crystal?  Well, she looks great.  She is smiling.  She is busy.  I am not sure if I told you all but for Easter we had gotten our family tickets to Kid Rock.  Never dreamed it would be the last big night out before Crystals big week.  So Saturday we are all smiles, having a great night, and then right before Kid Rock comes out… Crystal, standing next to me, says hey mom, I have been wanting to tell you that since our trip I have been sick.  I have some pain in my abdominal area and I get very nauseas when I eat or drink anything.  I feel it might be the cancer.  Gage has been wanting me to tell you but I also didn’t want to worry you since I was gone.  Anyway, I am glad that I am going to Mayo this week.  Then she walked over to stand next to Gage.  Yep, my heart broke.  I didn’t want to ruin anyone else’s night.  I just sat there taking it in.  I saw Rachel who is on my dance team and quietly said something to her so I could get it off my chest and then boom the concert began and I asked God to get me through the night.  As for Kid Rock, thank you for taking me away for a couple of hours and a fun ride home talking about how great of a night it was.

As for yesterday, my mother had a little surprise at a luncheon we did for Crystal.  I didn’t want to ignore that my mom had retired.  Needless to say, it was perfect.  In Crystal’s words, I loved watching grandma & Bob.  They were so shocked and it made them so happy.  I loved it.  They deserved it for everything they have done for us.  Well said Crystal.  It is amazing what a bunch of cards in the mail can do to put a smile on someones face.  Maybe that is it, today we should all send a card in the mail to someone we are thinking about.  After you put that stamp on it, you smile too.

Happy 4th of July

Written on Tuesday, July 3rd @ 2:45pm

It sure is hot outside today so I think I will sit in the air conditioning an answer a few of your questions.

Question 1:  Yes, Rod and I had a nice get away with my uncle and aunt.  While we were away, it was difficult to receive a text from Crystal who was still not feeling the best.  She was heading to the doctors to hopefully get a antibiotic.  Of course I continued to check on her while we were gone.  When she started to feel better, I was so relieved.  The day before we were to come home we chatted on the phone about how she was feeling, how her sisters were doing, work and the Freedom Festival Parade coming up.  After that phone call I received a text, “Mom, I hope you guys are having a great trip!  I didn’t even ask how it was going.  Sorry.  I just hate that my cancer is back. I am probably more sad then sick.”  That is a hard text to get when you’re away.

When we were coming home, Crystal made a remark that there would be only two Uptown Friday Nights that she might be able to do.  One being that Friday night and she would like to go.  I said isn’t really hot and humid there, as I am getting on the plane?  She didn’t care about that, she wanted to go.  So, off the plane and onto Uptown we went.  Gotta enjoy those special times.

Question 2:  Yes, Crystal is still dancing.  You would not know that her cancer is back.  She has been sick a lot this year but just like all of us can be with a cold, bronchitis, walking pneumonia, that is what is so sad about cancer, sometimes you are sick and you don’t know.  But dance, takes her away from the worries for a moment.  She loves it, just like her mom.  I think I have stated this before, that this dream that I started 25 years ago, must of been for her and I had no idea.  All along I thought it was just my journey.  When Crystal is feeling blue those students make her smile.  Here is a couple of little stories.

Story 1:  At the counter, a Tiny Spirit states, I like your zebra (which sits behind the desk).  Crystal explains, well that is my type of cancer.  And that 7 year old goes, so you got bit by a zebra and now you have zebra cancer?  Crystal said to me, Mom, I think that mother was horrified but it actually made my night.

Story 2:  In class a Tiny Spirit says, my mom & I got into a fight.  I am not talking to her right now.  Crystal says, well I get into arguments with my mom too.  That little girl looks at Crystal and states, well you and your mom live in this big apartment so you can get away from each other (Big apartment, meaning the dance studio in Lindale Mall, thinking we live there?).  hehehe

Question 3:  Not sure yet where the Studio will be next year.  Since I am celebrating 25 years of the CR Spirits Professional Dance Team & Studio I have been thinking of changing it up.  The goal was to let Crystal run with it, but she has no desire if I am not involved.  We came up with an idea before her big appointment and now that has changed everything.  So at this time I wait, I look for signs and I ask God for guidance.  I love this job.  I have been fortunate enough to have been given this gift to dance, choreograph, travel, meet others, build women up, surround myself, my family, my studio with wonderful opportunities and in the end prayer warriors.  It is nerve racking to change a path that you only know.  It is scary as you get older to try something new.  It is even more heartbreaking, to make a change when your daughter who fights for her life doesn’t want it to go anywhere because she believes strongly, it has helped her fight this battle.  So again, I will wait for a path to show up…

Question 4:  The t-shirts we sold will be going towards the hotel stay, food, gas whatever little things come up.  These last two years have been a miracle.  Crystal, Gage, Rod and I try to split the travel costs up as families.  Crystal has been fortunate that the cancer has stayed away and her $7000 every appointment costs have been covered by insurance.

However, this one will be different.  Not only is there a surgery involved, but lots of testing, including this new scan that costs around $20,000.  Insurance struggles with covering it because it is a new type of scan, I believe.  Yes, yes, the doctors will request it and we will fight it but it is still a worry.  When Crystal had learned of this, the guilt set in.  Gage works hard, she would be needing so much money.  She turns to me and says, “Mom that is too much money.  Like I am going to have to see if insurance is going to cover this.”  It broke my heart.  I immediately said your dad and I will take care of it, we will figure it out, you will do that scan if they want you too.  You know, that is one thing that was good about her being younger and not married.  We didn’t give her a choice, she didn’t have to worry.  She just had to fight.  Anyway, Crystal made many long phone calls, she has learned that if it doesn’t cover she will be responsible for at least $9200 for that scan and of course whatever else might come up.

With that being said, we will be selling t-shirts again.  They’re $20 each, we would like to place the order by Thursday, July 12th so they would be back in time for her big week.

Question 5:  I enjoy staying busy.  I enjoy people.  I get my energy from others.  Yes, it can be tiring and when I need it, I rest.  We are close to our daughters and their friends, that truly is a blessing.  I feel lucky.  

You know it is funny.  You have children.  You think that when they are 18 you are done raising them.  Once you get them out of high school, you can say I did it and I am done.  Actually I think there are a lot of people out there that do do that.  I think there are a lot people out there, that have children for a paycheck.  Having children and raising them are two different things.  It is exhausting to repeat yourself, it is exhausting to remind them constantly of things you don’t agree with.  It is exhausting being a good parent.  Anyway that is another topic.  But my mother would say to me, when you have them you will always have a worry for the rest of your life.  You know I would blow her off because I truly didn’t get it, I wanted a family.  I seriously was so young.  And trust me, that worry is real.  I never want my daughters to loose touch of how close they are.  I worry of their health, their careers, their relationships.  I worry of them being bullied, talked about, lied to.  I worry of them walking to their cars.  A mother’s worry never ends no matter what age.  Ugh  Last night at dance, Crystal says to Katelynn and I, as we were chatting way past dance class.  You know what gives me stress, a lot of stress besides cancer?  Worrying about my sisters.  I hate what goes on in their neighborhoods.  I find myself driving by their homes to make sure they are safe.  I sat in Courtney’s parking lot one night.  I feel like I am always worrying about them, what they’re doing and how they act.  And as I drove home, I thought I never knew she worried that much about her sisters.  A sisters worry.  We raised them right.  They’re close to each other.  I guess that is love.  And we all want to be loved.  We all want to feel love.  And love can be so exhausting.  Unconditional love is the most beautiful thing and can also be the most heartbreaking thing.  

I hope you have a wonderful 4th of July.  Land of the Free, Home the Brave.  Thank you to all who are and have served.