August 2018

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.

Crystal today! She is resting. Happy Wednesday to you all & again, Thank You for Everything.

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.