A Work In Progress

A Work In Progress

Sunday, December 25, 2016

Overwhelming Gratitude

We received a Christmas card, on Christmas Eve, from Dear Friends, who I have known since I was a little girl.  It was so nice to hear from them, but most of all, the handwritten note is what meant so much to me.  She had gotten our Christmas photo card in the mail showing our many Blessings.  She told me that she is currently reading a book called "364 Days of Thanksgiving".  It's a devotional, and the goal of the Author is to spur "overwhelming gratitude, which leads to overwhelming generosity".  The secret, he says, to overwhelming gratitude is :  open your eyes.  My Friend said:  "You two have done that and your faces show it.  "Godliness with contentment is great gain."  God is good!"  It meant so much to me to have someone who knew me in my childhood/teenage years, and knows my struggle with depression, see in my eyes and face, that we are grateful and content.  I truly am!  I couldn't ask for more.  Well, OK, I'd gladly have my depression taken away....but other than that....Life is Good!  We are so blessed!  We have each other, our new home, and our precious Mookie boy, but most of all, we have a Savior who will never leave us!  I've found that my contentment comes from God and from realizing His many blessings to me.  Of course it took me years of hard times to be able to get to this point, but I am truly content.  God has Blessed us!  I pray that you can find contentment in your life, and are able to see your Blessings, even in the midst of hard times.  Life is tough, but God is Faithful! :-)

Merry Christmas! :-)

Thursday, December 22, 2016

Debbie's Christmas Caring Bridge Update

Journal entry by Debbie Heiman — 5 hours ago
This year was the last year that all 4 of our kids performed together in the Lamb of God Christmas service. They did a wonderful job last night! Lexi and Hannah both played handbells. Lexi had 2 individual readings, and spoke very clearly. 

Scott ushered, so I was happy to be able to sit with my friend Jackie and her family, since I was alone. It was such a joy to watch and listen to the children singing praises to God and sharing God's Word with the congregation.

Since I last posted, Scott has been doing OK. The past week has been a struggle with eating. He is hungry and wants to eat, but fears how it will make him feel. This is the hardest part of the chemo and weeks following. It is getting better the further he gets from treatment. He starts back up with chemo on January 3rd, however, and he hates thinking about going through this all over again. It is a huge struggle for him, and I hate not being able to make it better for him! 

We are going to have time in the next week and a half to spend time with both my family and Scott's family. I am so thankful for this time that we have been blessed by God. I pray that we all stay healthy and are able to enjoy and cherish every moment!

From our family to yours, we wish you a Very Merry Christmas and God's richest blessings to each and every one of you! Please cherish every moment that you have with loved ones! No one knows what their future holds, so treat everyone with love and kindness when you have the chance.

Wednesday, December 14, 2016

Debbie's Request For Help and Update on Scott

Journal entry by Debbie Heiman — 11 hours ago

  Last night around 5:30PM, I took Scott's temperature because he hadn't been feeling well. It was 100.7.  Because of the fact that he has no spleen, we are supposed to take him to the hospital with a fever over 100.4.  He is not able to fight off infection on his own. 

 We are so thankful for the new 24 hour cancer care clinic in the center for advanced cure building next to the cancer center at Froedtert.  They just opened this as a trial run less than two months ago.  Scott and I have already used it twice.  Let me tell you, it is the biggest blessing for us right now! We no longer have to sit in an ER with all of the other germs and be exposed to all of that.  

Scott was able to get the one on one attention that he needed last night, and after fluids and an IV antibiotic, they were able to send us back home. We are so thankful that he was not admitted overnight. 

His labs came back looking pretty good, and his fever was gone by using Tylenol. The only results we are waiting on is his blood cultures. Those will take a couple days. 

I have a request from all of you. If you are willing and able to be a back up to come and stay overnight with our kids at these last minute moments, please let me know. I would like to have a list of people to call instead of relying on my 2 go to people all of the time. I really don't want to get anybody burned out with my problems. I am so grateful for the love that has been shown to us. If I don't ask, I won't know who is able. Thank you from the bottom of my heart!

Scott has remained fever free through the night. At least he was at 3:30AM. I will check again before I take the kids to school. 

Please pray that we can stay out of the hospital until our appointment on December 28th. I know how much Scott hates going, and I hate having to take him more and more every time. The unplanned visits are the worst, of course. We're just happy to be home so quickly this time and not 5 days like the last chemo round.

Friday, December 9, 2016

Scott - Another Round of Chemo Finished

Journal entry by Debbie Heiman — 10 hours ago
Today was Scott's 4th and final day of this round of chemo. He will stop at Froedtert on the way home from work tomorrow at 3PM to get his Neulasta injection. Hopefully that will boost his white blood count back up quickly. 

It has been a very busy week for Scott, and he hasn't missed a beat. I'm truly amazed by this man! Not only did he have chemo and work every day, but he had something every night except tonight. He even went to a board of education meeting on Tuesday and ushered in church last night. Tomorrow night our 3 oldest have basketball games at our school. It's their last home games at Lamb of God for this season. Scott will be helping run the scorer's table. I'm not telling you all of this to brag. I'm just so proud of the dedication that Scott has for God, his job, his kids/family, and their school. Believe me, he doesn't want praise and never asks for anything in return. He has always been a humble guy. 

I don't see his smile as much as I used to, but I saw it last night. As I walked up the stairs from dinner at church, he stood there in the back of church ushering. As he handed bulletins to the members and visitors, he greeted them with a huge smile! He may have been tired and not feeling the best, but no one would ever know that. I strive to be more like him. 

God has given Scott strength that I'm sure even baffles him. I'm so thankful that Scott and I were raised in such wonderful Christian homes with excellent examples to follow! 

Today is the 17th anniversary of my Dad's death. My Mom was blessed to find another wonderful man to spend her life with. My Mom and step Dad Don and Scott's parents are still here, and we are blessed to have them in our lives! We also have wonderful siblings/spouses, nieces and nephews. Even though we don't get to see any of them very often, we love it when we get the chance to spend time together.

With Christmas quickly approaching, I can't help but stop and count my blessings! Life isn't easy by any means, but it could be so much worse. Scott and I have 4 amazing kids and wonderful families on both sides (even extended families). We have so many great friends and we know that we can turn to them if/when we need them. Thank you! We LOVE you all!

Wednesday, December 7, 2016

Tonight I'm Giving Myself Permission to Just Be Sad

My Dad with his Grandson Trey. Trey was the only Grandchild he met.  Trey was 5 when Dad passed away.
     Today was a rough day for me.  I thought that after 17 years, I should be able to get thru the anniversary of Dad's death without being sad and letting it affect me like it does.   But, you know what?  I decided to give myself some Grace.  The loss of my Dad affected me deeply and profoundly.  News flash, I know, but I'm human!  Humans have feelings.  I have feelings.  Painful memories such as the loss of a close loved one, they resurface sometimes, and of course they would resurface on the Anniversary of his passing.  This is completely normal.  So I'm not going to tell myself not to be sad.  I'm going to allow myself to just be sad tonight, knowing that tomorrow is the Anniversary of his passing.  Even Jesus wept.  I miss my Dad.  I miss having a Dad.  He missed my Wedding.  He never met my Husband.  I was 25 when he passed.  So much life has happened since then.  I'm sad for all the things he has missed in my life, yet I would never want him back.  Selfishly, yes, but he is pain and worry free in heaven.  I listened to this song hundreds of times (alone in my apartment in WI, alone in my car) after his passing and shed lots of tears while listening to it.  Thanks to my Sister Pam who posted this song today and reminded me of it.  It has a healing effect for me, just listening to it again.  I'll warn you that the video itself is really lame, but the words.....the words touch me and bring me peace.

     I pray that if you need peace regarding the loss of a loved one, that this song would bring you some peace and comfort.

     Saturday Jonathan and I will celebrate our 7th Engagiversary, and 6 months of having Mookie in our lives.  I will allow myself to feel happy then.  But for tonight, I'm just sad, and that's ok.

Thursday, December 1, 2016

Scott's Appointment and Updates on Their Kiddos (My Nieces & Nephews)

Journal entry by Debbie Heiman — 5 hours ago
First of all, how can it be December already??? I just can't get over how fast time flies!

Today's appointment went well. Scott's liver counts are still elevated, but Dr. Charlson doesn't seem to be too concerned about it right now. His platelets are good, and his white blood cell count is high enough to start chemo on Monday. It's not up to the normal range though. 

We talked things over with Dr. Charlson. Here is what we decided to try this time around: 

Scott will be doing 4 days of Irinotecan/Temozolomide and keeping the additional Vincristine chemo on Monday. He will not be having chemo on Friday. He will be going to Froedtert on Friday to get a Neulasta shot, which should help boost his white blood cells back up a little bit. 

He will also be starting an antibiotic this Sunday to help with his stomach issues that one of these chemos causes. We are doing everything in our power to avoid another hospital admission! 

The nurse encouraged Scott to tell me if he is experiencing any side effects or isn't feeling well. Then, I can address our questions with the nurses over the phone. It's unbelievable how much Scott can tolerate before I finally notice something isn't right. He just keeps going. The man NEVER complains. I know how blessed I am in this way, but it can be very frustrating for me, as his wife and caretaker. I'm the only one looking out for him. He would never go to the hospital if I left it up to him.

I haven't mentioned the kids in such a long time, so I'll give a little update on them. 

Lexi just turned 14, and is in 8th grade. She decided that she will be going to Wisconsin Lutheran high school next year. She is currently in her basketball season. She's getting good grades and is very responsible.

Hannah turned 12 in September. She is in 6th grade. Her and Lexi are in the same classroom this year (6th-8th). She is also in her basketball season. She is on B team and will fill in on Lexi's A team as needed. She is  maintaining her good grades as well.

Tyler is 10 years old and in 5th grade. He is on B team for basketball. He gets very good grades and is an active boy. He will be starting baseball practice next Sunday (a pitching clinic). He loves playing sports!

Myles just turned 7, and he's in first grade. He is starting to read really well and gets good grades. Since our school doesn't start sports until 3rd grade, I signed him up for basketball through the West Allis recreation department. He loves sports just like his big brother. 

Our children keep us going constantly, and we are so blessed to be involved in every aspect of their lives! God is good! 

Scott's cancer is definitely on all of our minds, but keeping the kids busy and involved in the things that they love is so important! It doesn't allow time to sit around and think about it. 

The unknown future can be hard on all of us, but it's such a blessing to be able to tell the kids that God has a perfect plan for our family and will always take care of us. That doesn't mean that we don't struggle and get overwhelmed by all of it. It does mean that we lean on God for strength daily. 

 Please pray for an uneventful week of chemo and for him to remain healthy in the weeks following. God Bless you all!

Wednesday, November 30, 2016

Update on Scott From Debbie - Words From Her Heart! :-)

Journal entry by Debbie Heiman — 14 hours ago
Scott has labs at 9AM tomorrow. We will meet with Dr. Charlson at 10AM. We will discuss next week's chemo and figure out how many days he will do. 

Last week, Scott's liver counts were all elevated. They thought it was likely due to his cold virus. I pray that those numbers are back to normal tomorrow. I also hope that his white blood and platelets are back up to a level that is ready for him to tackle another week of chemo. 

As always, we just take it one day at a time. 

I can't thank you all enough for helping our family keep pushing through. I don't know how others have personally helped Scott or our kids, but I have felt so blessed lately. 

There are so many people who probably don't realize the impact they have on me. It's not easy to get up every day and keep living a "normal" life amidst all the abnormalities of our life. Thank you for the kind things that you say to me, the quick hug in passing, listening to me talk about my feelings and heartache, offering to help me if I need it, bringing us food, praying for us daily, and just being a friend. These things help us keep pushing forward. God Bless you for your love and kindness! There are a lot of really good people in this world, and those are the ones I need to cling to. THANK YOU for being the light that our family needs!

Sunday, November 27, 2016

The Thanksgiving Weekend I Didn't Know I Needed!

 At the risk of sounding like a Scrooge, I have strongly disliked the Holidays for as long as I can remember.  Just being real.  Rushing around here and there to get to at least 2 different Thanksgiving Celebrations and 2-4 Christmas Celebrations, during my hardest time of the year, stressed me out.  The fact that Dad passed away on December 8th, 17 years ago, didn't help me handle the holidays any easier.  Yes. I am an Extrovert.  Yes.  I love people.  But, I dislike rushing around trying to make it to every Holiday Celebration, so as to not upset anyone, while not taking care of me.

This Thanksgiving Weekend was hands down, the most relaxing and stress free Thanksgiving Weekend I have ever had.  This does not mean that every other Thanksgiving has been awful.  We have had some great Thanksgivings with Friends and Family, and we are so appreciative of all of the hard work that goes in to hosting Thanksgiving Dinners!  There are many things that play into why this was the most relaxing Thanksgiving I have ever had.  1.  This was the 1st time we have celebrated Thanksgiving in our own Home!  2.  We had a small, intimate celebration.  There were only 7 of us, plus Mookie.  3.  We didn't drive anywhere, not even for the day.  4.  This means we had 4 full days off together, at home, with no plans, and no driving. Mookie had a grooming appointment at 1:00pm on Friday, and that was the only thing we had planned.   I had so much time to just "be" in my own home, with my Husband, and my Dog.  It was glorious!

Thank you Jonathan, for all of the hard work you put into preparing our Feast.  It was delicious!  Also, thanks to Joel and Sandy and the boys for driving down from Grand Rapids to celebrate Thanksgiving with us.  It was so great to see you all!  I don't think God ever meant for us to get so stressed out over the Holidays.  Parties and gifts and appearances aren't the Reasons for the Season.  Jesus is the Real Reason for the Season!  He knows my Heart and He knows what I need, and it is truly liberating to have spent a Holiday exactly the way that I wanted to spend it.

So, if I don't show up for a Family Holiday Party.  Please don't take it personally.  This is just not my easiest time of year, and I need to take care of me.  So far, I'm doing a much better job of it than I have in years past.   Please understand, It's not that I don't want to see you.  It's just that other times of the year are easier for me to attend get togethers.

I am beyond Grateful for these past few days that I have gotten to be off work, in our home, with Jonathan and Mookie.  Life is Good!  We are Blessed! :-)

Friday, November 25, 2016

Debbie's Thanksgiving Post

I'm SO PROUD of my Sister, and the Faith and Strength she has shown, during these stressful and uncertain times!

Journal entry by Debbie Heiman — 11/23/2016
This Thanksgiving, I am so thankful for so many things. Even though we had a rough patch since last Sunday, and had to spend 5 days in the hospital, Scott was able to come home. For that, I am thankful!

Scott had labs drawn at Froedtert today. They were prepared to give him IV fluids, but he was well hydrated, and didn't need the fluids. He was very happy about that! This is another reason to be thankful.

His counts are still low, but not dangerously low. They are often low after chemo, and he is only 12 days out from the last day of his 5 day chemo.

All of his liver counts were elevated. They are assuming that it's due to the chemo and having been sick recently. They will check those numbers again on December 1st. We are so thankful for his wonderful Doctors and nurses.

We were able to pick the kids up from school and head to Scott's parents house for Thanksgiving. I am extremely thankful that he is able to be with his parents for Thanksgiving. Their house is his favorite place to be.

Every day that we get to spend with Scott is a huge blessing, and I'm so thankful that he is with us for another Thanksgiving! No one is ever guaranteed tomorrow. We just have a reason to live like every day could be our last. 

We pray every day that God will bless us with many more years together. Only HE can count the number of our days. 

Please join me this Thanksgiving by thanking God for the many blessings that he showers down on us.

I am thankful for Scott, our kids, both of our families, our friends, and all of the people who have been there for us and prayed for us. We've made it over 19 months down this difficult road. I'm thankful that God has kept us strong in the faith. He has provided for our needs every step of the way. He is such a good and gracious God. 

We want to say thank you to each and every person who is reading this. Your love and support mean more than you could ever know. God hears each and every one of your prayers. 

Have a Happy Thanksgiving!   🍁 

P.S.  If you are travelling, I pray for safe travels for you. Enjoy this precious time with loved ones.

Monday, November 21, 2016

Debbie's Caring Bridge Post - They Are Home! :-)

Journal entry by Debbie Heiman — 31 minutes ago
Scott's stomach was feeling much better today, so we didn't end up seeing GI specialists. Scott's counts keep getting better, and he is no longer neutropenic. They told us we could go home around noon, and we were home before 2PM.

All of the doctors agreed that Scott should not go back to work until Monday. They also said that he shouldn't be pushing himself so hard by working 10-12 hour days. He needs to be told to slow down sometimes. He is a hard worker, and that's a great quality to have, but not when it jeopardizes your health. They want him to be extra cautious and take it easy during the weeks following chemo. That's when his white blood counts drop and he is at more risk for getting sick. Sticking to desk work was recommended during those times. 

We are so so happy to have him home in time for Thanksgiving! We will go to Froedtert on Wednesday for labs and to meet with one of Dr. Charlson's nurses. We want to make sure his counts are all still looking good. If so, we'll head up north to Scott's parents house for Thanksgiving. 

Thank you so much for your thoughts and prayers. We wish everyone a Blessed and Happy Thanksgiving!

Saturday, November 19, 2016

Still at Froedtert - Debbie's Caring Bridge Update

Journal entry by Debbie Heiman — 14 minutes ago
The Doctor told us today that Scott will be here until at least Monday. We'll continue to pray that everything looks good and we won't have to stay any longer. They truly want to avoid sending us home, to have us end up back here in a day or 2. 

Scott gets hungry and wants to eat, but his stomach can't handle the food. They put him on a clear liquid diet after breakfast today. We'll see how he handles that. His fever seems to be gone for good. 😁

Thank you for your thoughts and prayers. We really want Scott to come home on Monday.

Friday, November 18, 2016

Debbie's Caring Bridge Update From Today

Journal entry by Debbie Heiman — 1 hour ago

I brought Scott to Froedtert yesterday at 9:20AM to have labs drawn and to see Dr. Charlson. He was running a fever of 101, and with no spleen, we have to be extra cautious.

His blood counts were low and they thought that he might need to be hospitalized. They gave him IV fluids and antibiotics. They also did a chest x-ray. The x-ray looked good (no pneumonia) and they were thinking about sending him home.

They took his temperature one more time, and his fever was up to 102. They decided he needed to be admitted. The highest that it got yesterday was 102.9. He has been fever free since this morning. We pray that continues.

He is dealing with a lot of intestinal issues and stomach cramping. He isn't able to eat without having pain.

They assume that we'll be here until Sunday or Monday. The are closely monitoring his temperature and blood counts. 

He had an ultrasound because his bilirubin was a bit elevated. The ultrasound also looked fine. They are running some more tests. They checked for C diff, and he doesn't have that thankfully! They took a swab of his nose and throat to check for a flu virus. We haven't gotten those results yet. 

His hemoglobin has dropped from 11.6 (low) to 9.7 (even lower). They are monitoring that and trying to figure out if there is cause for it besides the chemo he had last week. 

It's hard not knowing what caused the fever and if the stomach issues are from chemo or something else. At least they are covering their bases and checking him for anything that could be wrong. 

We obviously aren't able to be a part of the basketball tournament at Lamb of God like we had hoped. We are not happy about that, but this is out of our control, and in God's hands. 

I will be going to the tournament to watch Hannah and Tyler play. Big thanks to our friend Matt Meitner for putting the games on Facebook Live for Scott to watch in the hospital. He is extremely grateful.

Many people have offered to help out with the kids, to help my Mom if she needs it, and to help us if we need it in any way. We truly appreciate your love, support and prayers!

I pray that the rest of our stay keeps bringing positive reports and that he continues to feel better and stay fever free. 

Thursday, November 17, 2016

Our Non-Traditional Family

Our Wedding Verse was "God sets the lonely in Families"."  ~Psalm 68:6A NIV

Jonathan, Jennifer, Mookie, Eliana & Caro

I've learned that "Family" comes in many different forms.  Jonathan and I have a non-traditional family.  We Married later in life.  We were content being a Family of 2 for 5 years, until God put it on our hearts to adopt Mookie.  Then we decided we are going on a Mission Trip to Ecuador next Summer.  We will be visiting a Compassion International Center.  This is how God put it on my heart to Sponsor a Compassion International little girl from Ecuador.

I went on the site to see the children available for sponsorship between the ages of 1 and 8.  I acted like I was picking one.  Then it asked me to consider sponsoring another little girl from the same Church.  How could I resist??  Both of these girls waited for 248 days to be Sponsored!  I felt God pulling me to Sponsor both of them.  However, it's not just me that makes the money decisions.  It's Us.  Jonathan prayed and thought about it for a day or so.  Then he also wanted to Sponsor both girls.

Eliana is in the Middle pic.  She is 6 years old.  Caro is in the bottom pic.  She just turned 5 years old.  I've already written them and sent them our picture online.  The letter/picture will be printed and sent to them. The money spent sponsoring them goes to help educate them, feed them, teach them about nutrition, etc and most importantly it goes to teach them about Jesus.  My heart is full.  The girls live in a different part of Ecuador from where we are going for the Mission Trip, but I hope to someday meet these precious Children of God. Until then, I will pray for them, write to them, and love on them from a distance, and love on Jonathan and Mookie right here in South Bend, IN.  God is Good!  We are Blessed.

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! :-)



Sunday, September 25, 2016

Good News - Debbie's Caring Bridge Post From 9/21/2016

Journal entry by Debbie Heiman — 9/21/2016
Both of our appointments went really well today! Every time we get good news, I am SO thankful to God for being so good to us! He is such an amazing God! 

Scott's blood counts look really good, and Dr. Charlson was really happy to see that! There were no new tumors in his peritoneum, lungs, or elsewhere. The tumors in his liver all seemed to shrink, even if it was minimal. We'll take what we can get!

Our plan moving forward is to have a PET scan on October 3rd or 4th. We will meet with Dr. Charlson on October 6th to get results. The reason for doing this PET scan is to see what the uptake is in the tumors  located in his liver. The uptake shows how much activity the cancer is displaying in the tumors.

Once we get the results, we'll decide if Scott should do maintenance chemo. Dr. Charlson thinks that it might be a good idea since we've worked so hard to get where we are today! Scott has endured so much mentally and physically, that we might want to keep fighting this with everything we've got. We still aren't sure though. Having a break surely is nice for all of us, especially Scott!

Our doctors reminded us that this isn't the end of the road by any means. However, we are all really happy with where we are today! 

I love finding the good and positive things in every day life. We have so much to be happy about and thankful to our gracious God for. Today, we thank him for answering so many prayers for Scott.

We truly appreciate each and every positive thought and prayer for Scott and our family! Support from friends and family means so much to us! 

Monday, September 19, 2016

Prayers For Scott's CT Scan

Journal entry by Debbie Heiman — 21 hours ago
It has been nice to not worry about appointments and/or treatment for 3 weeks. I know that Scott enjoyed the break from Froedtert! 

During the nice break from treatment, Scott celebrated his 39th birthday! We are so thankful that God blessed him with another year! We continue to pray for many more birthdays that we get to celebrate with him! Next September is the big 4-0!!!

We've been really busy with VB for the girls and cross country and football for Tyler! I like staying busy, because it keeps our minds focused on the kids and having fun, rather than sitting around thinking. 

This Tuesday, Scott will have labs and a CT scan. We will go together on Wednesday to meet with Dr. Firat, his radiologist first. Then we have a meeting with Dr. Charlson, his oncologist. We will get the CT results from him, and then discuss future treatment based on the results.

This scan is going to tell us if the cancer is still gone in his peritoneum and if the cancer in his liver has changed at all in size. 

Scott has been feeling decent. He's definitely not feeling great, but much better than he did during the radiation. 

Please keep us in your prayers throughout the week as we have to wait for results and make decisions about future treatment. Even after almost a year and a half of dealing with this, it doesn't get any easier. God continues to be with us and give us the strength that we all need to get through it.

Sunday, September 4, 2016

Behind on Updates About Scott - Part 2 - Here Are The 2 Most Recent Caring Bridge Posts

Journal entry by Debbie Heiman — 8/22/2016
The kids started school today. Scott got up early to have French toast, bacon and sausage made for the kids by 6:45. I thought that was so sweet of him, especially since mornings are the hardest time of day for him.

We both took the kids to school at 7:30 and picked up Joshua. Joshua is our Kindergarten teacher, Nicole Wickland's (Brian Wickland) 4 month old son. I will watch him every day while Nicole teaches. It is the perfect fit for both of our families! 

Scott has been doing amazingly well with his radiation! He only has 2 days left, finishing on Wednesday!!! He is really good at continuing to live as normally as possible, even though he doesn't feel very good. Some days are better than others. If you see him, you would never know what he has been through and is currently enduring!

We hear the saying quite often, "You look great!" He really does look good. He has managed to maintain his weight around 170 lbs. 

After his 11:30 radiation tomorrow, we meet with Dr. Firat. I plan on asking him if he has any idea what our next step in treatment will be. He is just the radiologist, so he probably won't know. His portion of Scott's treatment is almost done. We will have to schedule an appointment with his oncologist, Dr. Charlson soon. 

For now, we just continue to enjoy our time together. Volleyball starts tomorrow for Hannah, Wednesday for Lexi, and Tyler's 1st Cross country meet is this Saturday. Sports keep us busy.

Journal entry by Debbie Heiman — 9/1/2016
Scott finished his 20th/final (WAR) whole abdominal radiation on Wednesday, August 24th!!! We met with his oncologist on Monday, August 29th. He had labs done that day as well, and his counts look pretty good. Dr. Charlson and his radiologist Dr. Firat were very impressed with how well Scott did through his month of intense radiation! There wasn't much to discuss with Dr. Charlson, except for setting up our next appointment.

Scott's next visit will be to have a CT scan done on September 20th. We'll get results on September 21st. This is the day that we will have to make some big decisions. Depending on how the CT scan looks, we may have to decide whether or not to do maintenance chemo. For now, we're trying not to think too much about the future, but just enjoy the 3 weeks we have without any appointments! Scott really deserves a break from hospitals, and I'm so glad that he's getting it!

The side effects from radiation could last up to 3 weeks from the time it ends. He's been done for a week, and he's still experiencing them. He has the worst nausea when he wakes up in the morning. He gets worn out easily, but continues to push himself every day. His appetite isn't very good. He eats when he's hungry, but he still can't eat much at a time. 

I'm so proud of him for the attitude that he has been displaying around the house lately! Even though he isn't feeling good, he is positive, funny (especially with the kids), and motivated! I love seeing him goof around and laugh so hard that it hurts his stomach and he begs us to stop making him laugh! Don't get me wrong. I don't want him to be in pain, but man is it great to see such joy!

It's hard to explain it in words, but he has come so far! Please continue to pray for his spirits to remain positive and uplifted! Please pray for all of us as he continues to fight! There are different challenges that arise in our family every day, just like everyone else! 

We did a bathroom makeover on the bathroom on our main floor. We finished in 4 days. We all played a part. I love how it turned out! It's so small that it's hard to get pictures. 😀

Scott cleaned the garage yesterday and mowed the grass today. It's not easy for him to do these things like it used to be. That makes me appreciate him and all that he does for our family even more! I'm blessed to have such a hard worker in my life! God is good all of the time! 💜  

Enjoy the the long weekend everyone!

Behind on Updates About Scott - Part 1 - Here are 3 Caring Bridge Posts

Sorry I've been slacking with posting updates about Scott.  I just looked at the Caring Bridge site and realized I am 5 posts behind.  So, I'm going to share 3 updates (in order) on this post and 3 updates on another post.

Hospital stay at Froedtert

Journal entry by Debbie Heiman — 8/2/2016
Scott and I and our kids got home from camping up north with the Heiman family clan around 10:30PM on Sunday night. It was great to spend time with everyone and see family that we hadn't seen in over a year!

Scott started feeling nauseous around 3AM, less than 5 hours after getting home. I'm glad we were home though! At least he was in our bed, with a bathroom close by.

I didn't know that he was feeling sick until he got up for radiation treatment on Monday morning. Somehow, he made it through treatment, before getting home and laying in bed the entire day. He got physically sick a couple times, was very weak, and felt terrible!

By 9:30PM or so, I was getting more and more worried about his symptoms. He didn't know I was calling the nurse line, and I knew he wouldn't be happy. The on call Doctor for Radiation Oncology called and said that he was concerned about the symptoms Scott was experiencing and wanted me to get him to the ER to be checked out. His body has been through a lot this past 16 months, especially these last 2 months!

We got to the ER around 11 PM and got a room immediately. We had been called in by the doctor, so we skipped ahead of a very busy crowd in the ER that night. 

We were in the ER for 5 hours before they got us our own room in the hospital at 4AM. 

They decided des they would need to keep him tonight (Tuesday) as well. They will see how he is doing tomorrow before they decide if he can go home. 

The doctors and nurses are trying to resolve some digestive issues that he is experiencing. He has been experiencing pain and nausea. It is getting better as time goes on.

Thank you for your continued prayers. I hope that we can get some sleep tonight and be able to go home tomorrow. 

We feel so blessed by the outpouring of love for us and our children! We haven't had to worry about them while we're here, because many friends have lovingly stepped in to help us! Thank you to each and every one of you. Some people offered to do things, but our kids were already busy. Thanks for being so selfless and helping us in our current need. We are truly humbled by your love!

Scott and Debbie

Journal entry by Debbie Heiman — 8/4/2016
We are back at Froedtert again, but this time it's just for outpatient radiation. We never stay away from this place for long.

We got home yesterday around 2:30PM. The blood cultures they took in the ER on Monday night take 72 hours to come back. Hopefully those all come back normal. I'm not even sure what they might be looking for. 

Scott is feeling much better, but not the greatest yet. For the most part, his nausea is gone, but it comes back every now and then. He has not gotten physically sick since yesterday (early morning). 

We will just continue to pray for him to feel better as time goes on. The further he gets into this month of radiation will tell us how he handles it. Today is only the 6th treatment.
14 more to go!

Journal entry by Debbie Heiman — 8/10/2016
Today was Scott's 10th day of radiation out of 20! He is often very tired. He's nauseous when he first wakes up. Some days it lasts longer than others.

He spends a lot of time sleeping, resting, and watching the Olympics.

Please continue to pray for the 2nd half of his treatments. I pray the fatigue and nausea don't get any worse for him.

He has been doing a pretty good job of eating small portions when he feels good enough throughout the day. He has only lost a couple pounds since radiation began. I'm glad he's pretty much maintaining his weight.

That's about all I have to report for now. School starts in a week and a half. I'm sad that summer is almost over. It was way too short for our family this year!