Happy Thanksgiving

Written November 26th @ 6:35pm

Happy Thanksgiving Everyone!  I have not forgotten to update Crystal’s Story, just been busy.  I think we should look at it as no news is good news…

I am so Thankful that Crystal will get to enjoy Thanksgiving.  She will get pleasure from this wonderful day along with this delicious meal with family and friends.  Her dad is a phenomenal cook.  He not only makes a perfect meal but he doesn’t even make a mess.  He has spoiled all of us girls tremendously.  I am so grateful and happy that he enjoys cooking; you know I have always thought he should open a restaurant.  I think as my daughters get older, they will be looking for a great cook in their lives as well.  We are so lucky.

Crystal is feeling great with no chemo.  The days that she seems to be full of worry, she will change what she is doing and try something else productive or she talks about what is bothering her and gets it out of her system.  That is another thing I’m thankful for, that she can see the worry begin to take over her thoughts and she tries to change it.

Crystal had gone on her trip to San Diego earlier this month.  It was wonderful for her to get away.  It was their first visit to San Diego for Crystal and her boyfriend, Gage.  They loved the Trolley Ride and they also did a photo shoot on the beach in Coronado, which they dearly enjoyed.  They made some wonderful new memories in 2013 which is nice since this year has been a difficult one for all us.  I am thankful my daughter could have that.

So a lot of you have asked about Gage.  I can tell you as her mother that I didn’t want to Thank Gage for dating my daughter.  Crystal is a beautiful confident young woman, who will fight Pancreatic Cancer for the rest of her life.  I didn’t feel that I should be thanking someone for liking my child with such a journey but what I felt I could say is Thank You for being you.  I am thankful that he is kind, considerate and has goals for himself.  He has manners, which I think is difficult to find these days.  He is driven, very respectful and treats Crystal beautifully and that is all that matters to Rod and I.  We have found some more good for Crystal in 2013.  I am thankful.  Oh by the way, he cooks!

December is almost here!  Look in your mailbox for the Mercy Touch Magazine.  Crystal’s article should be in there and I am just as anxious as all of you to see it.  We would love to hear your feedback.

As for Cassidy, she is doing better not 100%, but better.  They put her on anti-acid for a couple of months before they would do surgery.  I really feel that it has helped but we still have some rough days.  At this time she is very busy with basketball so it keeps her mind busy.  Besides basketball practices and games we have team bonding, which she truly loves.  I am thankful.

On November 22^nd it was Pancreatic Cancer Awareness Day.  I knew the month of November was to help promote this type of cancer but I learned from twitter that this special day was coming up…SO….I had the team keep tweeting to GMA…and I am sure many many others did as well.  It worked!  They wore the color purple on the 22^nd, such a small thing that made a lot of people in my circle happy.

Another cute thing, Cassidy then thought hey I have a basketball game that night.  I think we will wear purple ribbons.  Yep, they did the coaches and the team.  It made Crystal feel special; it made Cassidy happy that she could make Crystal feel that way.  I am thankful.

Now some of you have asked about Courtney.  She is your typical college student.  She loves her life right now.  She has paid for her college herself so there is no loan, so far.  She works, she goes to school, and she dances on the Professional Dance Team.  Her life is very busy with the hours she works, the hours of homework, plus of course meeting new people and enjoying the Iowa Games.  I am so proud of who she is growing up to be.  A confident strong woman, who has a mind of her own, another thing I am thankful for.

December 4^th is fast approaching, that is the big day for Crystal and all of us.  I am sure our hearts will be racing.  So many worries, so many thoughts yet so many things we are Thankful for.  It is amazing how your mind can wonder and make you almost sick worrying about it.  It takes so much strength to move past those thoughts…I am Thankful that God has given me the tools to do so.

I hope that all of you enjoy your Thanksgiving Day.  I appreciate your thoughts, your concerns, your emails, your letters, your gifts, and your stories.  You have helped my family and myself though all of this and I am so very thankful and blessed.  I honestly don’t know where we would be today if it weren’t for all of you.  You gave me strength and I am happy that I am smart enough to see that I couldn’t do it alone.  Thank You.

 

 

 

Want to hear a troubling story?

Written on Friday, October 25, 2013 @ 6:45pm

Happy Friday!

Just a little update, Crystal is feeling really good right now.  I think next week she will be feeling even better.  Normally she would be getting ready to start chemo again but for now she is done until her next appointment at Mayo. That big appointment is Wednesday, December 4^th.

It is wonderful to think that November will be the first time in 11 months that Crystal will not be sick.  No doctor appointments, No surgeries, No blood work, No scans, No chemo but there is always a worry however, we can’t dwell on that.  I am so excited for her, I am so thankful that she will have that month to embrace.  Just think November is a month that reminds us to all be thankful, what a coincidence.

Crystal wants to get back into school the 1^st of the year.  She also has set goals in the dance studio.  She has now begun teaching the Junior Spirits along with teaching the Tiny Spirits and loves the new challenge.  She is so passionate about the CR Spirits just as much as her mother.  I think that is what makes our studio unique.  It is definitely run from the heart.

You can actually see Crystal and the CR Spirits perform at the Harlem Globetrotters on Sunday, December 29^th @ 2pm in Cedar Rapids, IA.

Crystal was asked to do an interview for Mercy.  As Crystal and I talked about it we imagined how many people this would help, how much attention Pancreatic Cancer could get.  This is a good thing.  Mercy had an idea for a story and I am looking forward to seeing and reading how they put it all together.

We met with the writer at the dance studio on Wednesday.  And did I cry?  Yep.  Listening to Crystal talk about her own story, in her own words.  Things that she remembers that can take her right back to those sad and scary moments were hard hear.

Like; certain foods make her sad.  They are hard to eat because she ate so much of those foods when she was trying to feel better, before she knew how sick she was.  The smell of glass cleaner, because she cleaned the dance studio mirrors over and over when she was sick and weak.  Then there are the certain clothes that she wore when she would lay around wondering if she will live like this for the rest of her life, she was not tired she just could not function.

I hope you will all enjoy what Mercy puts together.  I believe it will come out in December.  I remember when we first learned that we were going to have to go to Mercy and not Mayo for her treatment because of our insurance…It made me so nervous.  I mean will Mercy be just as good?  If it helps any of you, Crystal and I enjoyed everyone at Mercy.  They were polite and professional plus Mayo and Mercy work very good together behind the scenes which I must say is refreshing.

On another note, some of you have been asking about Cassidy, thank you for your thoughts and concern.  We are in the process of meeting with a surgeon next week.  She has now had two abnormal tests that show that her Gall Bladder is not working properly.  I feel so bad for her.  Cassidy’s back is usually killing her and it is very difficult to eat.  It’s been a rough start for Cassidy’s junior year of High School.  Hopefully she will be feeling better soon.  Like Cassidy said, ‘Mom, I don’t want surgery but I am so glad they know what it is.”

Now would you like to learn of a little troubling story?

There are many entries in Crystal’s Story but if you all recall one of the posts we did was about some issues with some businesses that were using Crystal’s Sickness and the CR Spirits for gain.  Usually we did not learn of it until it had already happened and it was frustrating but we tried to focus on getting Crystal better and move past it.

But what I did learn is I have a sick, very sick child, and people were coming from all over wanting to help and honestly most people are good but you sure find evil in some.  It sure can shock you sometimes.  Here is a new story for you, it will blow you away.

Back in August when my daughter Cassidy was in the hospital, Crystal was doing her chemo and Courtney was starting college, a gentleman had reached out to me.  He had called the studio and also messaged me on donating money to Crystal’s Benefit.  It was a nice, kind gesture and it was for a pretty large sum of money including a family vacation.

I of course did investigate it a bit and could see a red flag; I gave the information along with the red flag feeling I had, to Heather.

As Heather proceeded to talk with him through email and phone, she had the same feeling.  I will not go into the feeling of our red flags because I am sure he will read this.  And if he is doing this to others I am not giving him ideas on how to make his story better to hurt someone else.

I talked it over with my family and my Spirit family.  I stated my red flags and explained what Heather and I agreed on; which is I am out nothing if he wants to fly here and give my family a check that would help us tremendously, plus a vacation.

Needless to say we put it on the back burner.  But he continued to reach out; wanting to help SO I called his bluff, picked a day and told him a time.  Now keep in mind there is NOT a lot of communicating going on and what is, is short and professional.

Have you ever seen the movie “True Lies”?  Well, we giggled because we felt that was what he was acting like.  He is from the Military, been out of the Navy since 2010.  He actually has a degree as an EMT and he trains Special Forces.  This group of men that he trains with was moved by Crystal’s Story.  This team of men prays every day for Crystal and our family.  And they are really looking forward to meeting us.

So he is coming to Iowa with 8 men from his team and a secretary on Wednesday night at 7pm.  They are going to dive or jump out of an airplane to the Lindale Mall parking lot to give Crystal a check.  Something she will never forget, something she deserves.  I believe those were his words.  We just need to be waiting in the parking lot.

Now seriously, I could make the calls to the police department, the airport, I could investigate more but I am not going to waste my time.  If it is meant to be…what a gift.

Now I did speak with him briefly that Monday on the phone.  I was not overly excited because I didn’t trust him; I didn’t plan on that money so I didn’t jump ahead and write out bills.  However, when he talked of the trip to Vegas, the flight for 8, staying at the hotel and seeing the Shania Twain concert, I must say I did tear up.  What a wonderful dream that would be.  But then I got focused on reality and those red flags.

Tuesday went by and then it was Wednesday, I really didn’t think I would hear from him.  But I did.  He stated, “He has landed, he is excited to meet us.  They are on their way to the hotel on Collins Road.  They will then stop by the police department before they head to Wright Bld. And then get on the plane”.  Now I must say I was shocked.

Make it short it was all a lie.  He was not here in Iowa, the messages he sent showed me he was in Nevada.  Message after message stating where he was here in Iowa, it showed Nevada until the last couple of messages when the idiot realized his GPS was showing his location that is when he switched it to mobile.  How sick?  And why?

I am thankful God gave me strength.  I didn’t let it bother me; I actually think it bothered the Professional Team more.  One girl stated, “To tell a story for a couple of months, right up to the moment you would meet, to give a family hope, with a very sick daughter and for what thrill?”

I continued with practice like normal showing those girls that you can’t let that get in the way.  And to trust your gut….God helped me listen to it that is why I could keep focused.  I wouldn’t have changed anything I did.  I would have handled it the same way.

But think of the people out there that don’t trust there gut or don’t have that support system.  They would fall for it and be so emotionally hurt, so crushed.  That makes me sad.

I must say this life’s journey is an interesting one…

Crystal’s last round of chemo…

Written on Friday, October 4, 2013 @ 2:33pm

Good afternoon, on this raining Friday in Iowa.  Oh how I have wanted to get things off my chest, time for a little writing or maybe I should say a little venting.

The last time I wrote we were getting ready for the Purple Stride walk/run in Rochester, MN.  Well, it was an event that was meaningful to say the least.  As I got up to speak and looked through the purple crowd, I was at a loss for words staring at the Survivors sitting right in the front row.  I was overwhelmed; I choked back the tears and thought this is a good thing, why am I crying?  This gives me hope, it gives Crystal hope, it gives our family hope.

My voice was shaky; yet strong, my mind was racing staring at those Survivors.  I can’t even remember everything I said.  I know we need to raise money for research on Pancreatic Cancer.  We need more people involved.  We need a village to help fight this.  Together we are stronger, we are more powerful, and we have more hope.  When the crowd began to cheer and clap it snapped me back from the daze I was in.  My thoughts kept wondering off thinking of Crystal’s Story as I was speaking, I turned to Crystal and handed her the mic.  As she began to speak I felt so very proud.  I stared at her, so young, so beautiful, so kind hearted.  That cute button nose and a smile that I know touched the heart of each and everyone in the crowd.

The survivors, they embraced her.  They reached out to her.  I think in the minds of the Survivors they thought she’s is so young to have such a big worry and so young to start this fight.  As mother I embraced watching it all, Crystal needs them in her life.  Crystal needs to see the Survivors and hear their stories and thoughts.  It made me cry to think that I can’t help her with that part of her life’s journey.

The CR Spirits Professional Dance Team performed beautifully and the crowd enjoyed the posters as well.  I think they were shocked to see the girl performing and then to hear her story.  It sure puts a different spin on everything.  Maybe this is what it will take to open the minds and hearts of others.

After the walk we did rush back home, it was Cassidy’s Homecoming Dance.  See through this difficult journey you still have other children to raise.  And each person is made from a different mold.  Life is going on all around you, like nothing has ever happened.  Sometimes you want to scream, “STOP”.  YELL at the top of your lungs!  CRY out does anybody see the hurt you are going through?  The pain you FEEL.  Then you realize its life, get a grip or you’re going to fall apart fast.  You still are a mom.  And a good mom, listens with her heart, keeps an open mind but stays true to her beliefs.  She puts others first but stays true to her word.  And I must say that job is very hard at times.  Crystal’s journey affects everyone in the home.  It’s been a trying year for all of us.

This week has been an emotional week.  Crystal started her last round of Chemo that we know of, until her check up in November at the Mayo.  You could see the sadness in her eyes.  I asked her if she was okay.  Crystal responded, “I don’t want to take these pills.  I can’t go through that tin taste again.  I don’t want to be sick anymore.  I know these pills are going to make me sick and I can barely swallow them anymore.  They gag me”.  We all know she has to take them and deep down inside she knows too.

Like I said this week has been emotional, we have learned of someone’s Pancreatic Cancer that has come back after stopping Chemo for 3 months.  She had a great summer, actually feels great but its back and this time it has spread to her liver and lungs.  We then learned of a friend of ours who’s family is not only suffering from a miscarriage but she then learned a week later that she has lymphoma cancer which possibly is now in her bone.  CANCER SUCKS!

The worry, the worry is always there.  Will it come back?  How will we react?  Will we beat it again?  Will Crystal ever know what it’s like not to think about it?  Will she always think when someone asks her how she is doing; they are talking about her cancer?  I hate it.  I hate the worry.  I hate these thoughts.

What I have learned, is it truly is in God’s hands.

You know I must say, after we learned of Crystal’s Cancer, in just a couple of days I had awakened early in the morning, I believe it was a Friday morning and I could feel this energy.  I went and woke Crystal up and asked her if she could feel this energy too?  I asked her if she could feel the prayer, the support and love from everyone.  It was uplifting.  I am telling you we could feel it, the feeling was so very strong.  It was a different kind of energy. I was amazed when she said she could feel it too.  I thought maybe I was going crazy and just making things up to make me feel better.  We felt it off and on for the next couple of months.

I am telling you this story because my husband’s friend is going through a very difficult time losing a child.  As Rod & I went to the visitation to show our support and love I knew that I had never met his wife, the mother of the child that passed.  As we met for the first time, we hugged so tight.  See, she has been following Crystal’s Story through my eyes and she said she could feel that prayer…she could feel that energy; she knew what I was talking about.  It broke my heart.

As I thought about things that evening, I was realizing that I had not felt that energy in awhile.  I asked Crystal if she had been feeling it, she said no.   So what we realized is, in the time of need others need that energy.

I feel that I am ready to reach out to a support group.  A group that is the caretakers to someone they love.  My mother found this article from The Gazette here is a clip of it….It really will make you think.

The average life expectancy is six months.  The five-year survival rate is 6 percent.  And it strikes without any forewarning.  One doctor speculated that Mom’s tumor had been festering for 20 years.  I gasped.  Mom — our family’s matriarch and a community pillar — had been harboring the deadliest type of cancer for two decades.  Out of the top 10 cancer killers, pancreatic cancer is the only one with a five-year survival rate in the single digits.  Despite its morbidity, pancreatic cancer research remains woefully underfunded.  Grant funding decreased by 15 percent from 2008 to 2009. Here’s the juxtaposition: Leading experts predict that pancreatic cancer will be the second-leading cause of cancer deaths by 2020. – See more at: http://thegazette.com/2013/10/02/fund-fight-against-cancer/#sthash.vUMx2fKh.dpuf

Only 1 Chemo Treatment Left…

Written September 17th, 2013 @ 9:10pm

Crystal’s Benefit at Pizza Ranch was wonderful.  Thank you for your kinds words, gifts and donations.  It is a feeling I can’t describe when people are so open and ready to help.  Like I have said before it is very humbling.

The benefits we have had have helped our family in so many ways.  The medical bills keep piling up and some days that can make you very depressed.  So again, thank you for taking the time to reach out to us.  It has helped us financially and emotionally.

Crystal was very sad that she could not attend the event.  Crystal was very sick and stayed home to catch up on much needed rest.  She was so torn.  She wanted to come but even though the desire was there the energy was not.  I must say I was sad but so happy she was resting.

When you try to act not sick, and are taking chemo, and then doing everything that you would have done even if you were not on the meds, it eventually will catch up with you.  Crystal is learning this finally, oh goodness how I love her attitude.

Today is a new day.  Crystal is not a 100% but she is at the studio dancing.  She got here around 4pm and I could see the tired look in her eyes but once the music came on and the sweat began the smile and energy was lifted.  Thank you God for letting Crystal continue to do what she loves.  However, she did have to leave early to get more rest but not before telling the CR Junior Spirits that she will be their new coach.  She is now going to be running the Tiny & Junior Spirits, a new journey for Crystal.

As of right now Crystal only has only one more session of Chemo left!  We are hoping that by the end of October she will be completely done!  She will then have her big check up in November, so yes, the worry is always there but you just have to have hope or you will go crazy.

Some of you have asked about Cassidy she is doing well but still is having some issues with her Gall Bladder, we are going to give a month before we jump on a surgery just to make sure that the parasite is completely out of her body.  She has pain in her back also on her side and after she eats she gets an upset stomach but we are aware of what it possibly is, so in time we will know.

Can’t forget about Courtney…well, she is doing great at College and she just made the Professional Dance Team.  So this season she will be performing with Crystal.

This coming weekend is the PurpleStride Walk/Run in Rochester, MN.  Crystal will be by my side when I speak and the Professional Dance Team will be ready to perform to kick this event off.  We are looking forward to helping support Pancreatic Cancer Research and to give others that are touched by this awful cancer hope.

 

Rough Couple of Weeks at the Kuehl Home

Written September 5th, 2013 at 7:05pm

What a rough couple of weeks…

First of all, we were very excited about Crystal’s news but we came home to a sick little girl.  Cassidy was still not doing very good.

I got home in time to do a CT Scan and a MRI with Cassidy.  We learned that her Gall Bladder was not working properly and that she had a parasite (Crypto).  She had been sick for 7 days and on Friday, August 23^rd we had an appointment with the surgeon.  Cassidy became even more ill during that visit.  It was horrible in that office.  It was a very long 50 minutes starting with the drive there.  I felt terrible for Cassidy.  I’m sure she just wanted to be at home when she was getting sick, so embarrassing but yet so sick you don’t care.  I felt sorry for others around us not including the doctor who about had a fit that she was not already admitted into the hospital.  It was obvious we had to clear up this illness before we could even think about her Gall Bladder.  It was a rough afternoon.  Off to ER, and then she was admitted.

Our next worry was making sure Crystal wouldn’t get it.  I mean none of us wanted it but if Crystal got it, it could be devastating.  As of now Rod, Crystal & Courtney are all good.  However, I did get it.  The night before Cassidy was released from the hospital, Rod and I went home to scrub the house.  Get the germs out.  It was a very long day and night.

After three days in the hospital Cassidy came home, I knew I got it.  I’m still not a 100% but I am a lot better.  As far as Cassidy’s Gall Bladder we will watch how she does the next couple of weeks.

Even though I was very sick we still had so much to do.  Crystal had a wisdom tooth coming out and before that big day we had blood work to do.  Needless to say Crystal handled that with flying colors.

Right before she went into have the procedure I gave her a big kiss and said this is not cancer, this surgery is nothing to what you have done…you’ve got this!  Crystal laughed.

She looked so innocent lying there afterwards.  Crystal asked me if she said anything stupid when we got in the car.  I was like, “No, why?”  She said she must have dreamed it…I asked her what did she dream?  With her eyes half opened, a smile on her face and in this deep voice she said…HUUUMMMMP DAAAYYYY!  I about died laughing.  I didn’t even get it on video…and now she doesn’t even remember.  Funny thing is, it was hump day.

Plus we had to get ready for the Spirits Year End Party, so much to do, food buy, gifts to buy and memories to make.  Crystal was actually chosen by the team this year as SPIRIT GIRL OF THE YEAR!  Congrats Crystal.  It was fun party…we did a Spirits Slumber Party.

As far as this week is going, Crystal started her Chemo on Monday however she was also taking some medicine for her tooth, the combination did not settle with her.  She has had a rough week but of course still being very positive.  We did get to stop taking the medicine for her wisdom tooth so hopefully that will help.

Today was a hard day for me.  We were cleaning the dance studio.  A deep cleaning which we did right before Crystal became very ill.  I actually forgot about it.  Until today when Crystal became quiet and I asked if she was okay or if she needed to lie down.  She looked at me, began to cry and hugged me so tight.  It was out of nowhere.  I was shocked and I listened to her say, “Mom cleaning this studio is bringing back bad memories.  I was so sick and I knew something was not right, I could feel something not right with my body the last time we did this here.  And right now, I think I am setting myself up to believe that I am getting it again.  I am tired like I was then and I don’t know if it is the same kind of tired.  What if it is coming back?  Mom, do you think it will come back?  Do you think it is the same tiredness?”

To hear that scared little voice and to know I don’t have the answers is so heart wrenching.  I told her if it comes back we fight.  We don’t give up, we fight.  That is what everyone tells us to do.  As far as being tired…Crystal you are on chemo.  You have had a rough week with it this time.  So it’s expected.  Now, let’s get new thoughts in our head about cleaning the studio.  The feeling that you will have when it is done, getting the studio freshened up for the Spirits Auditions next week.  Getting the cleaning done will help keep everyone’s Spirits Up and Alive!  That is what we need.  I stayed strong, she wiped her tears and we continued our cleaning.

However, it took us all day!

Waiting is the worst part…

Written on August 21st, 2013 at 7:30am

Waiting is the worst part!

We got up yesterday morning and got ready for another day of Crystal’s appointments.  It was such a beautiful day in MN.  The sun was out and people were walking everywhere, such a nice town.

Sitting in the waiting room and waiting for the doctors we got a little silly.  I think we had lots of anxiety which brought out happiness because we were almost over with having to wait.

As we waited we took photos and then the door opened up, they came right into the room and looked at us both and came right out and said, “We have found no new tumors at this time”.  We looked at each other and smiled.  Crystal had a frozen smile on her face almost in shock.  I of course began to cry.

Her blood work was good.  They got out the MRI and showed us exactly how everything looked.  They will send her MRI to another team of her doctors just for more feedback but everything looked good at this visit.  Our prayers have been answered.  Thank You, Thank You God.

We will be going back in November for another big appointment in the meantime she will continue with her chemo and in November the next step will be determined.

Crystal was so quiet.  Just like she was in April, when we first came to Mayo but this time there was a smile.  We walked out of the room with that good news, went through the lobby on 12^th floor and Crystal dropped down a little and then began cry.  I hugged her so tight.  We both were crying.  So many tears and trying to keep it together she said, “Mom, if they found no tumors does that mean I am Cancer Free?”  I smiled and with joyful tears I said, “In my eyes that is what it means.”

We found this somewhat private area, with such beautiful scenery and called her dad.  Crystal with the biggest smile said, “Dad I am Cancer Free!  They found no new tumors this time!”  As she got off the phone this older distinguished looking women stopped working on her lap top to say Congratulations.  It gave her shivers to hear Crystal say that.  I will never forget staring at that woman.  I could tell she truly was taken back with our news and we have no idea what journey she herself is on.

We made a few more phone calls and then headed for a late lunch.  Crystal last set of chemo pills was on Sunday, Crystal made it clear we are celebrating mom with a margarita.  I am so fortunate to have a wonderful relationship with her.

Crystal wanted things to be quiet until she told a couple of dear friends in person.  We did make our phone calls and sent out text to some immediate people but that is why I waited to tell the news to you all.  Thank You for your prayers, your support, your donations, your love.  Thank You!

I will admit on the way home thoughts kept running through my mind.  What about November, what about March?  What happens when chemo is done, then will it come back?  And then, and then…Oh that’s right, why am I worrying about the future that I have no control over.  I said a prayer and I must say I focused on other things.  If my mind went back to it, I immediately thought of something else.  It worked.

Just so you all know we will be going back to Rochester, MN on September 21^st.  You are all welcome to join us.  We will be doing the Purplestride Walk/Run for Pancreatic Cancer Research in Rochester.  Our team is CR Spirits.  That morning we will not only be getting some good exercise but I will be speaking before the race not including the CR Spirits will be performing, which means Crystal will be dancing.

On another note, Cassidy is still not good at all.  When Crystal and I got home last night, Cassidy began to cry.  You know when you see your mom; I think we all cry when we know something is wrong.  The pain is still there, the frustration with school starting and not feeling good at all and besides not being able to keep anything in your stomach makes you weak.  We are still waiting for test results.  Today is her first day of her Junior Year in High School, she is determined to go.  I will be calling the doctor at 8am to get her back in.  The worry never stops but this morning I remind myself that God has that for me.

Waiting for Results

Written on August 20th, 2013 at 10:50am

As I lay here in the hotel room and watch Crystal sleep…I worry.  So I open my phone and look at the image I saved.  It’s strange but it helps.  Since I am still pondering I’ve decided to write in the journal, which will surely help me.

It’s been a crazy weekend, lots of performing and smiles.  I must say I am proud when I watch not only Crystal dancing but everyone one of the Spirit Girls in the studio.  How fortunate I am that I get to do something I love.

On another note my youngest daughter Cassidy was showing signs of food poisoning late Friday night actually, right before we were to perform at the Sweet Corn Festival.  So for the weekend Cassidy has pretty much been out of commission.  Here is a photo of her cousin, Lee rubbing her head to help her feel better at one of our performances.  I should have known she was bad when she wouldn’t leave my side.

 

Now Sunday was a new day, a beautiful day.  Jon and Michelle had asked us to go boating with them but with Cassidy not doing well, we decided to stay home and work on laundry and bills.  Besides we were leaving for Mayo Monday morning and it was going to be Courtney’s first day in College.  So we had things to do to get ready.

Crystal however had a wonderful day on the boat.  She was with her Spirit Family.  Lots of memories she made and it kept her mind busy.  She didn’t think much of her chemo pills or the visit to Mayo…Thank You Michelle!

Now back to that Sunday morning as we sent Crystal off and I was keeping an eye on Cassidy…Courtney comes running upstairs with a slight fever and tears…She is certain she has a bladder infection and she needs medicine now, school starts for her at 7am Monday morning and she is scared she will still be sick.  So off to Mercy we went.  Cassidy didn’t go because even though she had flu like symptoms they were more like food poisoning with no fever and she felt she was possibly getting better.  Needless to say Courtney did have a bladder infection.

Okay…Now it’s Monday morning.  I beg Courtney for a photo before her first day on her new journey, her first day going to College.  I will tell you that she enjoyed that first day.  It’s nice to hear her so happy.  She loves meeting new people and is excited to see what her future holds.

However as I am packing getting ready to leave I wake Cassidy to see how her night went with sleep.  Is she better before we head to Mayo?  Nope.  She is sick.  She wants to see the doctor.  As I rush to the doctors they think it could be a Gall Bladder issue, maybe surgery?  Oh goodness and I can’t be at both places.  Yes, the doctor sees me start crying again.  Assures me that we are doing the testing to make sure, you take care of Crystal, and we have got this.

As I pull myself together I take Cassidy quickly to get her blood work done and I call Rod.  I ask if he would like to go with Crystal so I can be here with Cassidy if she needs surgery.  With Rods work it was easier for him to stay put.  So Cassidy is going for a scan at 3:15pm as Crystal and I head to Mayo for her blood work and MRI beginning at 4pm.

As mother I felt torn.  Cassidy was good about it.  She wanted us to go with Crystal.  But as a parent I wanted her dad or mom with her, I knew it couldn’t be both of us, such a worry.

We got into Crystal’s new car and headed for Rochester, MN.  Crystal and I spoke and giggled all the way down.  I was texting many of you and giving you heads up.  I didn’t want to be sad, I wanted to be positive.  I didn’t want Cassidy to think Crystal was more important and I didn’t want Crystal think mom shouldn’t be with me right now.  But since I am an open person each one of those girls heard my feelings and everyone was getting along fine.  Thank Goodness for my Mom.  She helped me see the logical side of things.

Well, yesterday we learned that Cassidy’s testing so far is good however she is still not better so more testing for her today.  She said mom, “dad is a newbie at this”…how cute.  I can’t imagine how Rod feels.  I am sure he feels just as torn.  He’s pretty quite in a house full of women.

As far as Crystal’s test goes we learn today.  I must say the MRI took forever.  I kept thinking did they find something?  Is that why it’s taking so long, they are making sure to get all the photo shots they can?  As I sat in the waiting room, it was chilly and my mind was not positive at all.  I hated it.

When Crystal came out, she was sick.  She had not eaten all day and was very tired.  We went to her favorite spot HuHot and then got our hotel room.  We were both cold, so hot chocolate and a cookie before bed in our matching purple pj’s!”

I asked Crystal is she was scared to learn the results, nervous?  She said, “No, I am just tired and I am trying not to think about it.  Our hotel is nice, what’s on tv?”  Yes, I probably ask to many questions.

Oh please Lord…give me strength today.  What is her journey going to be?  What is our journey going to be?

 

Insurance Again….

Written on August 13th, 2013 at 7:35pm

Well…what a terrible day!

First thing this morning we headed to Mercy to check her blood.  We learn that her platelets are down and will need to be checked on Thursday to determine the next step.  But since Crystal is going to Mayo tomorrow, they will let Mayo’s Team of Doctors decide what to do.  Remind you she is scheduled for surgery on the 28^th of this month for her tooth, it is becoming even more sensitive so trying to stay on a schedule can be difficult with Chemo.

I am now at home.  I am paying bills, doing laundry and thinking of life when Crystal walks through the front door and says with a concerned tone, “Mom!”  At first I thought OMG did she wreak her new car?  Nope…it was worse; she received a phone call from Mayo, at 2pm and rushed home to tell me.

The phone call basically stated that if they do not receive an authorization number today that she would have to reschedule her appointment or pay out of pocket.  Remind you this visit would cost approximately $5000.00.  We were told to call our Insurance Company, United Health Care.

I immediately calmed her down and said it is 2:15pm in the afternoon, I am sure we can figure this out before tomorrow morning.  6:00am is her scheduled appointment; we were leaving our home at 2:30am.  I called United.  The gentleman on the phone, Caesar…was polite, an informed me that basically the Doctor’s Order had not shown up, so they could not approve it or disapprove it because nothing has been sent over.  Strange?

So back on the phone to Mayo…which now informs me of the phone call that had taken place plus the fax number that was given to them from United Health Care and the confirmation number that shows they received it.  Remind you this was done on August 7^th and again today.

And as of today, they talked to a Denise and got another fax number to use.  They have a total of about 10 fax numbers from United Health Care to use…Hmmmmm that would be too many chiefs and not enough Indians…maybe stick with one number?  Then it wouldn’t get into so many different hands???  There would be one story not 10.  This would be some advice from Mayo and me.

So back on the phone to United Health Care, they state they have no records of anything.  I even state do you think that it is just not entered in yet today?  They state no, it would show that it was pending.  Meaning it takes 24 to 48 hours to get the authorization number but you can see it in there from the fax.  They advise to reschedule the appointment because if they give the authorization number on Thursday but she gets checked on Wednesday…they will not cover it, even though to me they have dropped the ball.

No matter who I talked to…it takes 24 to 48 hours.  So we call to reschedule.  Crystal is beside herself which makes my heart hurt.  Talking to the scheduling department they are doing their best to get us in next week to keep Crystal on track.

The appointment we had for tomorrow was scheduled 3 months ago so trying to change it in a week makes you have to stay in Rochester for possibly a few days, which means hotel rooms and extra expenses.  Thank God I didn’t book a room tonight because I wouldn’t have been able to get out of it.  Plus Thank God we live in Iowa and it’s only 3 hours away, I am not on an airplane coming in for the night and finding out I am not going to be seen unless I want to be even more broke.  What a joke!  How many people does this happen to?  Why is it confusing?  Who is passing the buck?  I make my monthly insurance payments.

As I am trying to gain control of the situation, I have Crystal contact Mercy; she has to get those platelets checked on Thursday.  Crystal can’t even catch her breath to make the appointment.  My eyes are just filling with water.  Looking at her with tears running down her cheek and hearing her voice crack put me in such a sad state.

Why is life so hard?  Why is it so difficult to make an appointment?  I guarantee you Crystal and I want to know about her MRI.  Is there any more tumors?  I guarantee you the Doctors what to see Crystal as well.  But to me it boils down to money, the Insurance Company.  How can the person from the Insurance Company who can hear the hurt in my voice.  Here the common sense in the situation.  And then get off work at 5pm and live the rest of her day?  I would love to know their turn over in that department because I can’t imagine having to fake being nice to a decent mother on the phone of a child who has Cancer.  Makes me sick!

Now we are at the studio, I am in my office, the door is shut.  The tears have stopped as I have focused on the positive and I get an email from Crystal.  An update for her website…How funny, I was writing one too.

As I read her words with her thoughts…I think to myself, I hope writing that helped her get that off her chest.  We don’t know the exact schedule for next week but we know blood will be checked on this Thursday.  I am glad she didn’t sign up for college classes with her sister because next week is the first day of school at Kirkwood and it looks like she would be missing a lot of that week and then the following week is a schedule surgery for her tooth so another week of school missed.  Not sure on what the plan is but for now it is one day at a time.

Its funny how so many people as they get older become bitter and resentful.  I have always said I hope I never get like that but I must say I know why so many people do.  So I ask God please give me strength to avoid that path.

Crystal’s words…

Tomorrow was supposed to be a big day for me, but not anymore. I got a phone call today from the Mayo Clinic saying my insurance isn’t going to cover my cancer check that is supposed to be scheduled for Wednesday August 14. My mom and I called our insurance company and they said they never got an authorization number. Then we called Mayo Clinic back and they said they sent it. Just to remind you…..this appointment has been scheduled for three months and I am just now hearing about it, the day before I leave. All I can say is what a joke.

Here I am fighting my cancer every single day and all I want to do is go to my appointment tomorrow to see if the tumors came back and spread or for them to tell me I am cancer free. Then we have this thing called insurance that ruins everything. Instead of, taking care of myself and worrying about my appointment. All I am worried about is if my insurance is going to let me go to my appointment.

Insurance is all a money scam…they don’t care about you or your family or health. All they want is your money and that just makes me sick.

Since I am going through chemotherapy I don’t always feel the greatest, but I am so positive so I don’t cry a lot about it. But once your insurance company says…”Sorry Crystal you’re going to have to reschedule your appointment”, that just puts me in tears.

So I guess today I learned I really hate insurance companies…especially United Health Care…. And I think they need to figure it out because you seem to piss a lot of people off.

To leave on a positive note I am doing great with my chemotherapy and I am feeling better than ever. And since I will not be at the Mayo Clinic tomorrow I will get to go to dance class! See ya girls there!! We have a big weekend of performances ahead of us and I can’t wait to be a part of it. The Iowa State Fair Performance this last weekend was a great memory for me.

Love, Crystal

Wisdom Teeth?

Written on August 9th, 2013 at 1:45pm

Happy Friday!

This week has been a roller coaster.  On Monday, Crystal started her chemo again.  On Monday, Crystal had an appointment for her wisdom teeth.  Now, you may think that it is crazy because you know they don’t recommend any dental work done during chemo.  But Crystal is having some issues with her wisdom teeth.

In the doctor’s office we wait.  We actually played on her cell phone.  We actually were Face Book Stalking, so lots of giggles and then the doctor came in.  We have learned that the one tooth is infected and needs to come out.  This can be tricky.  They would normally take out all 4 wisdom teeth but they will only take out the one at this time.  With chemo there are so many more things to worry about.  Her blood counts plus infection because her immune system is down during this time.  The tooth needs to come out at the end of this month, right before the next chemo schedule.

Yes, it is scary.  And she can only take it out if her blood counts are good and she is off chemo for almost the two week period.  Now remember her schedule can change at a moment’s notice, so we pray that we stay on this task.  If we stay on course than we know when surgery is, we know that her blood work is good enough.  We have some control.

Besides the emotion of, you’re kidding me something else?  We learned they wanted surgery done on Friday, August 30^th.  That about put Crystal over the edge, the tears were flowing.  That day is the CR Spirits Professional Dance Team’s Year End Party.  The Spirits is really something that gives Crystal a chance to be normal and everything seems to interfere with it.  Now, as the owner/coach of the team…we just can reschedule it but trying to tell that to Crystal is another story.  Yes, we had some tears.  So surgery is now Wednesday, August 28^th.  She will be doing a lot of blood work that week.

With that emotion, that stress, those tears we headed out for lunch with her sisters and then went home to take a much needed nap…It was like we woke up happy, had an appointment, cried, ate, went back to bed and then got up and went to the Studio…which of course put us in a better mood.

However, Tuesday was much better!  Since Crystal was moving home, she thought she would get a better car.  We looked at quite a few.  We looked at what she could afford.  My uncle was willing to help with a signature and my mother gave her lots of help.  Billion Automotive in Iowa City was wonderful and to top it off the car she got, was a Hyundai!  Hope on Wheels….proceeds goes to kids fighting cancer.  It was a sign, the perfect car!

Now this weekend we have the performance at the Iowa State Fair.  We are looking forward to it, as we always do, but I think the weather is going to be perfect which makes it even better!  Crystal will be performing on the Budweiser Stage at 4pm on Saturday, August 10^th.

With all of the emotion this journey has brought our family.  At times the feeling is hard to describe without sounding negative, depressed and angry.  Staying positive, keeping my family together, and thinking of the future, plus focusing on the Spirits and Spirit Family really takes up a lot of my time.  I worry about all of this, but then in my mind I am already 5 days ahead concerned about the Mayo appointment and scans next week.  Learning patience has been a huge part of my life in 2013.

Sometimes it can be so much…with work, schedules, appointments, performances, bills, children, sick children, and marriage…its life.  We all have a story.  It’s how you deal with it.  It’s doing everything in your power to see your class half full, knowing that God gave us all a gift, a journey…to help others.  Looking at it that way sure makes you feel better.  When I asked Crystal to write an update for her website she said, “Mom, it can be so depressing writing it.  I don’t like living the emotion again.  I like it when you write it.  I enjoy reading it.”  I guess you can say I like to get it off my chest and Crystal likes to forget about it.  I don’t blame her one bit!

On another note…I was doing some research on pancreatic cancer…needless to say it was sad and I deleted my history so I would not have to look at it again.  But I did find a walk/run in Rochester, MN on Saturday, September 21^st at 7:30am.  We would love to have you be a part of this.  I am going to make a team…Let us know.

Rochester PurpleStride Event

Pancreatic Cancer Action Network

Our Mission:

The Pancreatic Cancer Action Network is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. Go to www.pancan.org for more information.

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