A Work In Progress

A Work In Progress

Tuesday, October 18, 2016

Debbie's Blog Post - 18 Months Since Scott's Diagnosis

Journal entry by Debbie Heiman — 19 hours ago
There are dates that will forever be drilled into my memory, along with every detail of those days. I wish it didn't have to be this way, but it is.

April 9th was the day that I took Scott to the ER at West Allis Memorial. After an ultrasound of his abdominal area, we were told that things didn't look good. I asked if it was cancer and the ER doctor said yes, he thought it was. After the CT scan, he told us how bad it really looked. He saw 2 tumors in his peritoneum that were bigger than softballs. There were also more tumors than he could count throughout his entire abdominal area. They admitted us immediately so that he could have a liver biopsy the next day. 

After I had called family and close friends, I went home to quickly pack up the kids to spend the night with their Aunt, Uncle and cousins. I told them we were going to go see Dad. I could tell they were scared. 

When we got to the room, Scott told them that the Doctors thought that he had cancer. We didn't know for sure though, and we didn't know any details. I was able to remind them that Grandma (my Mom) has lived with cancer and fought hard for 15 years (now almost 17). They have seen my Mom lose her hair and remain positive through it all. They didn't seem as scared because of having her in their lives.

On April 10th, they performed the liver biopsy. They sent us home after the biopsy. It wasn't until early evening. I didn't realize how horrible the next day would be.

The next morning was my 37th birthday. I woke up to find Scott in the living room. He was in the recliner in extreme pain. I called the hospital to ask what I could do for him. They had to write me a script for strong pain medicine. The medicine knocked him out and he slept practically the whole day. 

I was blessed to have a few special people in my life (you know who you are!) who knew that my life was turning upside down. They either stopped by with a birthday gift or had things delivered to make my day a little brighter. Thank you for loving me when I felt so empty inside. My birthday was the last thing on my mind! All I wanted was to take Scott's pain away! It killed me to see him hurting, and I wanted to stay positive for the kids. It was a beautiful day, so we walked our dog Sophie and spent a lot of time outside that day. 

The next 4 days, we waited to hear what was really going on with Scott. I took that week off from daycare and Scott and I did a lot of sitting around and thinking. We finally got an appointment on April 15, 2015.

April 15th is another day that I will never forget. I remember sitting there with Scott waiting for the oncologist to come and talk to us. She first said, "I'm so sorry! He has a form of Sarcoma cancer called Desmoplastic Small Round Cell Tumor and there is no cure."

I completely lost my mind at that very moment. In my mind, that was it. I thought we were being sent home, and that was it. I jumped out of my seat and was saying things about the kids and us needing him and on and on. The doctor calmed me down and then started explaining that we will be sent to Froedtert, because West Allis couldn't handle this extremely rare cancer. 

This began our 18 month journey at Froedtert. We have met so many wonderful nurses and Doctors! They have been so wonderful and always encouraging us every step of the way. 

When I think back to our life in the beginning of this journey, I would have never believed that Scott would be doing as well as he is today! 

I didn't get sleep back then, because we were dealing with pick lines and medication in the middle of the night. It is only by the Grace of God that we made it through those hard times. He was also with us while we were away from our kids for surgery in New York for 6 weeks. He continues to be faithful as Scott keeps fighting with everything he's got!

Please keep us in your prayers as Scott begins chemo again on November 7th. I hope he can continue to work through treatment and feel decent. I know that's what he wants. If he can handle it, I know it's good for him.

It's a hard transition for our family, going from having Daddy around 24/7 to having him work long hours again. The older 3 understand, but Myles really struggles with it. He sure does love his Daddy!!! ❤️️

 I am proud of Scott for continuing to be such a great example to our kids of what a Christian man looks like. He is a hard worker and the spiritual leader in our home. 

I pray that God gives us all the strength to keep fighting and staying positive for years to come. God knows what is best, and I am confident of that. 

Thursday, October 6, 2016

Update: Praising Our Gracious God For Scott's PET Scan Results! :-)

Journal entry by Debbie Heiman — 5 hours ago
I am so pleased to report that there is no evidence of disease anywhere besides the liver. Even better news is that the SUV (standardized uptake value) has decreased in his liver tumors.

1 is the baseline/normal level for the SUV. Anything greater than 2.5 can indicate metastatic cancer activity. I have 2 examples from Scott's PET scan to help you better understand where we are.

One of his tumors had an SUV of 6.3 on July 14th. On October 3rd, the SUV had decreased to 4.8.

Another tumor had an SUV of 5.3 on July 14th, which decreased to 4.2 on October 3rd. We are so thankful for this positive step in Scott's treatment.

We decided to go ahead with maintenance chemo, but he's going to take 1 more month to recover from surgery/radiation before he starts. We think that it's important for him to have a chance to feel good for a little while before he starts back up with treatment. He has been through SO much already!

He will have labs drawn on November 3rd. We will meet with Dr. Charlson that day also, to discuss the results, and make sure Scott is ready to start again. 

He will start temozolomide/irinotecan chemo on November 7th. These are the 2 chemo drugs that he ended with in May, right before his surgery. I believe he will be doing 4 day chemo weeks, with 2 weeks off between each round. We aren't sure how many rounds he will do yet. They will do scans to check him throughout his treatment.

We are so thankful that God has allowed his body to tolerate such harsh treatments! He is doing SO well, and all praise goes to our amazing and gracious God, who has been by our side every step of the way! 

If you have seen Scott around lately, I'm sure that you would agree with me. He looks great! He is working and getting stronger. He is getting more energy back the further he gets from being done with radiation. I'm so proud of him for pushing himself. I know it's not easy for him. 

I'm glad that in the next month off of treatment, Scott will be feeling good and be able to celebrate Myles 7th birthday and Lexi's 14th birthday! We will also be able to go camping the last weekend in October. Scott and I have only camped once all summer long, so it's due time for us!!! 

Thank you all for your continued prayers for our family! God hears every prayer!

Psalm 106:1 Praise the Lord. Give thanks to the Lord, for he is good; his love endures forever.heart

Sunday, October 2, 2016

Prayer Request - Scott's PET Scan is Tomorrow

Journal entry by Debbie Heiman — 3 hours ago
Please say some prayers for Scott. Tomorrow morning at 7AM, he will be having a PET scan. The whole process is time consuming and I know he hates it!

 A positron emission tomography (PETscan is an imaging test that allows your doctor to check for diseases in your body. The scan uses a special dye that has radioactive tracers. These tracers are injected into a vein in your arm. Your organs and tissues then absorb the tracer. 
Scott said that once they inject him, he has to wait an hour for the scan. He's not a fan of the scan either. 

We will meet with Dr. Charlson on Thursday morning to discuss the results and talk about future treatment. I'm assuming he will be starting chemo again soon, but we'll see how much activity is in the tumors in his liver. 

He has been working, and these appointments make it difficult for him to fit in the hours that he wants to put in at Naturescape. I'm really proud of him for pushing himself, even when his energy is completely used up. 

I'll try to post results on here either Thursday or Friday. Thank you in advance for your prayers! We're hopeful that the cancer will be contained in his liver and nowhere else. This scan covers head to toe. The CT he had a couple of weeks ago only covered his chest and abdominal area. 

Saturday, October 1, 2016

J-La-Sta's 9th Annual Fall Appreciation Day!

J-La-Sta Posing by Some Fall Decor
Today was my 9th Annual Fall Appreciation Day!  We had an Amazing day together!   We started our Morning by weighing in at Weight Watchers.  I'm on my way to getting back to my goal weight (I'll blog about that another time)! :-)  After WW, we relaxed at home for a few hours and enjoyed hanging out with Mookie.  Then we headed to the Starbucks Drive Thru for our Fall Mochas.  I got the Salted Caramel Mocha and Jonathan got the Chile Mocha.  We took a day trip to Shipshewana, IN.  We went to the Midwest's Largest Flea Market.  This was their Fall Extravaganza and Today was the last day of the Flea Market Season.  We found some great deals and some nice things for our Home.  We had lunch there and got LOTS of steps in.  We were there for 4 hours when it started raining, so we headed to some indoor shops.  Jonathan didn't want his pic taken in the big chair! :P

I Felt Small in this VERY Large Chair! :-)
Relaxing with The Mookster
After we were done shopping, we headed back home and picked up a Frozen Pizza and a Fall Dessert.We got home and I tried to get Mookie some exercise inside since it was raining outside.  We ate Pizza and watched a Fall Movie. We watched Goodwill Hunting.  I don't think I had ever watched it from start to finish, but it's a Fantastic Movie!

After the Movie we had Pumpkin Patch Ice Cream.  It was Yummy!  I think this was the best Fall Appreciation Day we have spent together!  I had a few J-La's Fall Appreciation Days before Jonathan came into my life.  We have continued a tradition I started as a single gal.  We had great weather...although it went from sunny to overcast to sunny to overcast, etc.  At least we saw some sun and the rain didn't come till we had seen all of the outdoor shops.  What a great day!  Bring it on Fall!  I'm ready for you! :-)