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.