October

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