Debbie's Caring Bridge Updates From 7/26, 7/27, & 7/29

More progress

Journal entry by Debbie Heiman — Jul 26, 2018

This morning, the surgical team came in and said that the epidural was going to come out today. The great news is that Scott is free of all cords, tubes, etc. except for 1 IV in his right arm. It is much easier to walk the halls with less tubes and things coming out of him.

The down side to not having an epidural anymore is that he can’t just push a button when he needs more meds. He has to call a nurse to come and give him more in his IV. It doesn’t get through his system as quickly or as well either. He has been experiencing more belly pain for this reason. 

Overall, today was a pretty quiet day. He walked the halls 4 times. He also did some simple exercises to help get some strength back. He’s doing everything that he needs to do to get closer and closer to going home.

The pain meds make him very sleepy. He was awake a lot more today than he has been. He still struggles to stay awake throughout the day while watching a show or talking to me at times. 

Slowly, but surely, he’s improving. He looks really good for a guy who just had an 11 hour abdominal surgery 6 days ago. He continues to amaze me, after 3 years and 3 months of fighting DSRCT.

Some friends of mine have recently received really tough news about their husbands cancer battle. It is very important to be there for them and encourage them on this road that we’re traveling together. None of us asked for this or deserve it, but we stick together in the fight. I encourage all of you to be there for each other, no matter what you’re going through yourself. People need each other to keep going and to be told to never give up! 

An anxious heart weighs a man down, but a kind word cheers him up.
Proverbs 12:25

And let us consider how we may spur one another on toward love and good deeds.
Hebrews 10:24

On that note, I am forever grateful to friends, family, and complete strangers who have shown love to us in one way or another. Blessings flow abundantly in so many ways! Kind words that are spoken, cards sent, meals delivered or dropped off to our home, gifts given to me as survival tools for the hospital stay, offering help in whatever way is needed, giving our kids time and attention, giving a much needed hug, and on and on. We are blessed with an entire community of amazing people. If you think that good doesn’t exist in the world, I beg to differ. God is so good!

Of course our life is far from easy, but we will all be better equipped to face tomorrow because of what we are going through today. Much love to all of you reading this update.

Such an encouraging morning!!!

Journal entry by Debbie Heiman — Jul 27, 2018

First of all, not that this is about me at all, but I finally slept straight through the night. I slept from 1AM until the surgical team came in with Dr. Mogal at 7:45AM. The lack of sleep has been adding up for me and affecting me, so it felt so good to sleep!

Dr. Mogal shared the best news ever with us! He said that the pathology reports all came back. He told us that he removed so much scar tissue, nodules, possible small areas of concern, etc. and the ONLY thing that came back cancerous was the golf ball sized tumor that was connected to the sigmoid colon! How Great is our God?!?! This news is truly amazing for a person with DSRCT! We couldn’t be happier!

Scott is free of everything, except for an IV in his right arm, which is not hooked up to anything. It will stay there until he goes home, just in case he needs it. He is taking medication by mouth. He will get Lovenox shots for a month, so I’ll be doing those twice a day. I’ve done it before and the nurses say I’m a pro. It just stinks to have to stab your husband.

Scott is being so tough and pushing himself so hard so that he can get out of here. It’s great to walk the halls now with no pole dragging alongside him. He has been walking without the walker as much as possible. I usually push it alongside him, in case he needs it. That is comical. The nurses just smile. We have fun with it, because why not??? You have to do something to bring joy to a hospital stay. 

He begins to really feel pain when he’s about to be due for his next pain medication. That’s always a hard part of the day for him. 

He was put on a low fiber diet this morning and ate his first bite of food since last Wednesday. He’s going light on the food, because his stomach needs to get used to eating again, slowly but surely.

I’m working on this post in shifts. We just got back from walking the halls again. PT caught us at the end. She had him do one flight of stairs up and back down. He did an awesome job. She had him get in and out of bed alone. He passed the test, and was cleared by PT. She took the walker away and said she doesn’t need to see him anymore. I’m so proud of him! One step closer to going home. 😁

Scott has always been a hard worker. In the past, that related to his job. Currently, that relates to his fight against cancer. This passage comes to mind.

Colossians 3:23-24
Whatever you do, work at it with all your heart, as working for the Lord, not for men, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

All of his hard work makes him tired. I love this passage! He definitely has God on his side in this battle.

God gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:29-31

Scott is home

Journal entry by Debbie Heiman — Jul 29, 2018

I’m going to make this short and sweet, because I have a lot to do!

Scott was discharged from the hospital and was able to go home at 12:30PM today. They have been mentioning the possibility of going home for a couple of days now, but we didn’t want to tell anyone until it was reality. We are so happy to have him home with us!

I will update later and let everyone know how we’re adapting to life after surgery (at home). Please continue to pray for Scott’s complete healing. We were told that it could take 3 months for a full recovery.

From Jen:  Thank You for your continued Thoughts and Prayers for my Family! :-)

There's No Place Like Home!

Forty Days ago Today we left home for a 3 night Tent Camping Trip at Pokagon State Park in Angola, IN.  We came home early on Father's Day (Sunday, June 17th) so we could get unpacked and Jonathan could relax before returning to work after his long 4 day Weekend.  I walked into the House and into the Kitchen and noticed water everywhere on the floor.  It was pouring out of the Dishwasher.  The Dishwasher was not on when we left, and we did not set it to run while we were gone.  Jonathan opened the Dishwasher and more hot water came gushing out of the Dishwasher.  He shut the water off.  This was a Sunday, so having a Plumber come out would be really expensive.  As we looked around the house, we noticed that the water was everywhere!  The hallway carpeting was slushy, the living room carpeting was slushy, the carpeting in the bedrooms was wet, the Kitchen and Laundry Room and a Bathroom were completely soaked with standing water.  We immediately called the Water Mitigation Company who came and put down 3 fans and a dehumidifier.

Today is day 37 of dealing with this situation.  This house situation is far worse than the Ice Damming situation we went thru in February.  That time we lived with 4 walls down to the studs, but we were only out of our home for 9 nights when it was being restored.  However, back then we felt completely alone.  We didn't feel like we had support (although we did have KFC brought to us and a gift card from Friends was gifted to us, and a neighbor brought over a beautiful yellow plant). Oh, I'm also Thankful for beautiful flowers and a Starbucks Gift Card from a Friend. If I forgot something and didn't mention it here, I apologize, it's been a rough year.  The thing that makes this situation easier to handle is that we have the support of our Small Group at Church.  We joined this Group the end of April of this Year.  One of the Families actually invited us to stay with them for the 2 nights that we had to have our water off (including our dog, Mookie).  Then the man of the house helped Jonathan move the dishwasher to try what the plumbing company suggested.  After we moved home for 2 nights, the first night another couple from our small group had pizza delivered to us!  Then the same couple brought us cookies and contacted 2 Pastors at our Church so we could be added to the meal train.  We are getting 1 meal a week for 6 weeks. While Jonathan was out of Town for Work, my Neighbor Friend treated me to Dinner and we had a lovely Conversation. Our Friend brought us donuts.  The Family we stayed with also had us over for a cookout the Saturday after the flooding was discovered, had us over for 4th of July celebrations and brought Pizza for Dinner when we invited them to come swimming at our pool. We also had other Great Friends invite us for a Lunch Cookout to Celebrate the 4th of July! This past Sunday, Parents of a Friend of ours gifted us with a Gift card for Dinner.  The Support of our Small Group has made this Incredibly difficult situation much easier to bear.  We don't feel completely alone like we did the first time.  We do not feel like we have Family Support.  But, our Small Group has been our Family, and for that we are extremely Grateful.  Without them, we would once again be feeling all alone.  As it is, it's a lonely place to be in.  Many of my Friends have been out of Town and it's been a hard week.  Monday I had just gotten back to Normalcy and then Friday Happened.  Friday my BIL had an 11 hour major surgery in Milwaukee.  As most of you know, he has battled a rare form of Sarcoma since April of 2015. My heart and mind and prayers have been focused on my Sister and BIL

No.  Jonathan and I are not experiencing health issues, and for that we are extremely grateful, but, as with most things, until a person has been thru something, they really don't know much about what it feels like to be in a situation like this.  We have received comments like "Enjoy it!" "It's like a vacation!" "You have a Pool!"  "You have a Workout Room!" "At least you don't have to clean", "Can you imagine how hard it would be if you had children?".  Even my Psych NP told me to enjoy it.  I can assure you that 33 days in a hotel room is not all it's cracked up to be.  I miss our bed.  I miss our comfortable furniture.  I miss our backyard.  I miss our hammock.  I miss our living space.  I miss letting the dog out and not having to go out in the rain with him in the parking lot. I miss the office where I could much more easily run my small business. I could go on and on.  Hotel living wears on a person.  I was even talking to a guy who used to travel a lot for work and he says it wears you down.  He even acknowledged that it's harder for women to not be living in their home.  Some people get it.  Some. Just. Don't.

1.  This is by far, not a vacation.
2.  We don't have a restoration start date.
3.  We have our room reserved here until Sept 7th.
4.  If we are here till Sept 7th (possibly longer), we will have been at this hotel for 79/80 days - Yes. That's our whole Summer.

Those are the facts.  This is our reality.  We have discussed what God has been Teaching us.  Although, I know I have many things to learn thru this situation, I know that if we know someone in a similar situation in the future, we will open up our home to them.  We will support them.  We will let them know we are sorry for what they are going thru.  We will let them know we are thinking of and praying for them. We will send cards.  We will do what we can to help them financially.

Right Now I think God wants me to Abide in Him and Rest in Him. It's out of my control as to when we will get to move back home.  I'm sure I'll be feeling better after my time of the month comes and goes.  It will also help me when Scott is home from the Hospital.  I am setting up an appointment to go see my Counselor, however he doesn't have any openings available till the week of the 6th.  I know I am experiencing some situational depression.  That is to be expected.

Now you know the facts and the feelings.

Now it's time for me to list things I'm grateful for (in no particular order):

1.  My Husband (where would we be in this world without each other, in a world where we both feel so alone?)

2.  Our Dog Mookie (He makes us laugh every day!  He's been such a trooper thru all of this!)

3.  We have the nicest hotel, with the nicest staff.  If we can't be at home, and have to live in a hotel, I'm glad it's this one.

4.  I'm Thankful my BIL had a successful albeit 11 hour Surgery.

5.  I'm Thankful for Friends near and far.

6.  I'm Thankful Jonathan has a job that supports us.

7.  I'm Thankful we got to go camping for our Anniversary with Small Group Friends.

8.  I'm Thankful for our Small Group.

9,  I'm Thankful for my Women's Group at Church.  I know they are praying for me and for us.

10.  I'm Thankful that God loves me even at my lowest, and even when my broken brain tells me lies.

11.  I'm Thankful that Heaven is my Final Home.

12.  I'm Thankful we have Insurance.  We could not afford to stay at this hotel for this long.

See, I can be Thankful, but I still want to go home.  In time, that will happen, just on God's timetable, and not mine.  Until then, I will continue to be a light to those I meet here at the Residence Inn by Marriott.

Post-Op Challenges - Please Keep Praying for my BIL!

Day 3 post-op

Journal entry by Debbie Heiman — 11 minutes ago

I just realized that I haven’t updated since Saturday during the day. Everything becomes a blur when you’re in a hospital room day in and day out. 

Rewind back to Saturday night, around 10 PM. Scott spiked a fever of 102. They ordered a chest X-ray, blood cultures, and an EKG. The blood cultures came back negative for now, and hopefully nothing shows up on them later. His EKG was fine, but the chest X-ray showed a slight issue with his lungs. I’m not even going to try to explain it, because I’ll probably say something wrong. Long story short, he needs to start using his spirometer more for breathing exercises, in order to prevent pneumonia from setting in. That is the big concern. His lungs need to expand and contract with deep breathing. 

Dr. Mogal (his surgeon) came in this morning to talk to Scott. He said that the NG tube will have to stay in for at least 2 more days. It’s too risky to remove it until the bowels are fully awakened. If it’s taken out too soon, it will cause a lot of vomiting.

He is being given Tylenol around the clock to keep the fevers down. Thankfully, it is working. He can tell when he is due for it, because his fever starts rising again.

Scott took 2 walks in the hallway yesterday, which was VERY difficult for him, but he did it anyways. He uses a walker and goes very slowly. I’m so proud of him, because this is such a huge task for him. He just took a walk in the hallway today and did very well. It tires him out quite a bit and then he sleeps for a while.

He has begun to swell up pretty significantly in his arms and hands. His hands are numb, which is irritating. 

I’m writing this in shifts, between helping Scott, figuring out kid’s schedules, replying to texts, etc. Right after I wrote about the NG tube, we realized just how important it REALLY is for him right now. 

After I got him washed up and moved him to the chair in his room, his NG tubing didn’t get hooked back up correctly by one of the nursing assistants. He was starting to have difficulty breathing, due to all of the mucus. We realized just how important the NG tube is and how necessary it is for him to keep it in. He is getting used to it, which is a blessing!

Dr. Mogal noticed the swelling of the arms and asked for a test to be done to check for blood clots. I’m praying that this is not the case. He didn’t seem overly concerned, but they don’t want to skip a beat with anything that might cause a problem in the future. I love how the nursing staff is on top of things and helping him recover to the best of their ability.

Results from the blood draw this morning showed he had an elevated creatinine count, which shows how the kidneys are functioning. They are keeping an eye on that as well.

His potassium has been low, and they have been giving it to him in his IV. It burns his arm, like it’s being held in a fire. I can’t believe how painful it was for him. In NY, he just got horse pills for it. His pain tolerance is over the roof, so to see him in moaning pain means it’s REALLY bad!

Please keep the prayers coming! We could really use them right now! 

Much love from Froedtert 8NT!

Update: Wow. Just. Wow. Many Prayers Still Needed!

I can't imagine all of the emotions my Sister is going thru right now, and the physical pain that Scott is in.  Please continue to pray for Scott, Debbie, and Their 4 Children! :-)

Day one post surgery

Journal entry by Debbie Heiman — 13 minutes ago

I think that I was unclear with my last Caring Bridge post. When I posted last, Scott still had about 4 hours left for his surgery. 

When I left last night to run home and see Myles and Hannah, before Scott got out of recovery, the key wouldn’t turn in the ignition of Scott’s Honda. Lexi is on her mission trip, coming home this evening, and Tyler was at a birthday party sleepover. I wanted to see them quickly and reassure them that everything was ok. I went up to the familiar floor that he is usually inpatient (7CFAC) to ask for a security guard to come help me. The security guard went back to the parking garage with me and couldn’t get the key to turn either. He said he was sorry. I sat back down in the car, feeling helpless.

The reason I’m telling you this story is because of the outcome. That is coming...  It may seem like a small hurdle, but after 2 hours of sleep the night before your husband’s 11 hour surgery, and desperately wanting to hug your sad 8 year old, it about set me off.

I sat in the driver’s seat and said a quick prayer, “Dear Lord, please help me start this car so that I can get home to see the kids and get back to Scott quickly.” I closed my eyes and tried once more. The key turned and it started. I praised God and was so thankful for answered prayers! 

The point I am getting at is that there is nothing too big or small that we can’t request of our Father in Heaven. He has answered so many small prayers for me lately, and yesterday, he answered a HUGE  prayer! He brought Scott out of a successful surgery with no complications whatsoever. How Great is our God??? I can’t even put it into words. I’m speechless, and that doesn’t happen often.

The total surgery itself ended up being just shy of 11 hours! The team of Dr.’s came in this morning and went over the surgery and how well everything went! They were pleased with the fact that there wasn’t more unknown cancer found, which is always a possibility. His vitals remained stable for the entire surgery, which is such a blessing!

Last night and today so far have been a little rough for Scott. I am thankful when he is sleeping, because the pain and irritation of the NG tube is enough to make him go completely crazy. The nurses and everyone taking care of him are doing everything in their power to help him be comfortable. The NG tube can’t be removed until his bowels wake up from surgery. That could be another day- 3 days. I’m praying hard for tomorrow! 

As hard as it was to see him struggle, I’m happy to say that this Champion Cancer fighter got up and walked to the chair with a walker and the help of a nurse and PT. He sat in the chair and mostly slept for about 45 minutes. He’s back in the bed and completely worn out!

Scott has a long road to recovery ahead of him! We pray that he can go home in 10 days if it is God’s will. The surgeon said his full recovery will be right around 3 months. I pray that he is blessed with a full recovery and that no complications arise along the way. 

Psalm 30:12
O Lord my God, I will give you thanks forever.

Scott's Surgery Should Be Done By Now. Here are the Details From my Sister..

Dr. Mogal just came in

Journal entry by Debbie Heiman — 1 hour ago

We just heard such overwhelmingly good news! Dr. Mogal told us that the surgery went extremely well. He stepped out to talk to us while the chemo (Cisplatin) is being swished around in Scott’s peritoneum for an hour.

After the hour of swishing, Dr. Mogal will go back in to sew the incision back up. He is hoping to be done by 6 or 6:30, which would make the surgery about 10 hours long. After being in recovery, he is hopeful that I will be able to see him around 8 PM.

Dr. Mogal was able to remove his entire sigmoid colon and stitch it back together to working order. He’s truly miraculous! He scraped off a part of tumor or scar tissue on the outside of Scott’s liver. He sent it in for a quick biopsy. It was not cancerous, so he left the rest of the liver alone in order to avoid any unnecessary harm. He said that the liver has remained stable for so long, so there really is no reason to mess with it anymore. His gallbladder was removed, and he was able to remove a lot of scar tissue in the peritoneum. He said that the tumor stuck to his sigmoid colon was equivalent to the size of a golf ball.

He is fairly confident that he will be avoiding a visit to ICU. He said that not much blood was lost and he does not need a blood transfusion. Again, by the grace of God, more prayers were answered!

After Dr. Mogal finished talking to us and had nothing but good news, I asked him if I could give him a hug. He accepted. This man is nothing short of amazing, just like our surgeon, Dr. LaQuaglia, in New York. These men have given us more time with Scott, and for that, I am forever grateful!

I know it’s not over yet, but I am feeling so much better with this great news.

Matthew 19:26 - Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

From Jen:  Thank You For Your Thoughts, Prayers and Words of Support and Encouragement!  The fight isn't over, but we are Thankful for a Successful Surgery!

Caring Bridge Update - Scott Was Admitted Tonight for Surgery Tomorrow

HIPEC no longer denied

Journal entry by Debbie Heiman — 4 hours ago

We found out yesterday that the HIPEC (hot chemotherapy) portion of the surgery was being denied. The hospital talked to the insurance company one more time today, and by God’s Grace, it was accepted!

We were told yesterday that if it was accepted, we would be admitted today.  We will be heading to Froedtert in 2 hours. Scott will be receiving fluids all evening to prepare for the HIPEC portion, which can be very dehydrating to a person’s system.

I’m so thankful that my Mom came into town a day early (yesterday) to take care of the kids. We found out yesterday for the first time that we may be admitted today, opposed to 5AM tomorrow morning. It’s just 1 extra night in the hospital, thank goodness! 

Prayers are appreciated for Scott especially and for the surgeon and nurses who will be caring for him during this long surgery. God will be overseeing the whole surgery, so I have confidence in his promises.

The Latest Updates on Scott/Scan Results - From Debbie's Caring Bridge Updates

I'm posting the newest update 1st.  My Husband and I were in Oconomowoc, WI to Support the Heiman Family and participate in the 2nd Annual Race to Cure Sarcoma - Milwaukee.  I'm including some pics from that Special Day in this Post.  They are in between the latest update and the oldest update.  Please Pray as Scott's Surgery is this Friday and is expected to take 8 Hours.  Thank You! :-)

Update

Journal entry by Debbie Heiman — Jul 12, 2018

 When we got to our appointment yesterday, the scan had not been read from Monday. They told us it was stable, with a possible growth in millimeters. It did grow more than we thought, but we are thankful that it will be removed in one week. It is measuring at 3cm.

The scan itself self says that the mass is inseparable from the sigmoid colon, so part of his colon will definitely need to be removed during surgery. Extra prayers are appreciated!

This was the message that was sent to us on MyChart last night.


Scott and Deb,

Here are final CT results. The peritoneal mass is about .5cm larger than prior scan in April but there is no other sites of disease which is awesome! They are going to take that mass out anyway and it is right on the sigmoid so hopefully that will help your bowel obstruction episodes. Take care

My Sister Debbie and Her Husband Scott.

The Team Captains Got to Wear Tutus.

The 4 Heiman Children and a Boyfriend.

The Youngest Heiman Family Child.  He's Such a Ham! :-P

Encouragement

Journal entry by Debbie Heiman — Jul 11, 2018

 I’ll start by letting you all know that God is SO good!!! Scott’s scan was stable today! We were so happy to hear that news! 

With so much going on in our life right now, I turned to my devotional book for encouragement. I found a devotion on encouragement and this is what it said.

So many times in the past few weeks I had come home to hear a message of encouragement on my answering machine: “thinking of you”,  “I love you”. Day after day when hysteria and raw emotions were my constant companion‘s,  I found the incredible support and concern of friends every time I needed someone. 

 Encouragement has never filled a flat tire. Encouragement has never made a car payment, nor fixed a broken washing machine. But encouragement from another gives us the strength to do what we feel we cannot do, hold on when we feel we cannot hold on, and try what we might not dare to try. 

 Encouragement. Doesn’t sound like much, but it’s everything. Send some encouragement today. You’ll be part of someone’s memories for a long long time. 

This devotion rings true for me, especially at times like these. Lately, I’ve received texts, private messages on FB, or cards in the mail that remind me that I’m not alone. WE are never alone! I am thankful for people who take the time to reach out. It keeps me going when times get tough. I pray that everyone has people in their lives that help to encourage them in good times and in bad. I try to encourage others and pray that I can be a light to others in hard times.

Thank you to everyone who prays for us and thinks about us as surgery approaches. Next Friday, July 20th is the big day. The surgery is expected to take 8 hours or more. It will be a long day, since we arrive around 5AM to get started on surgery prep. 

An  anxious heart weighs a man down, but a kind word cheers him up. Proverbs 12:25 

 The Lord is good to those who hope in him, to the one who seeks him. Lamentations 3:25

 This I call to mind and therefore I have hope: because of the Lords great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:21 - 23          

 

Debbie's July 3rd Caring Bridge Post - Their Camping Trip Out West & Scott's Surgery on July 20th.

Amazing experience with plenty of ups and downs

Journal entry by Debbie Heiman — Jul 3, 2018

When Dr. Charlson gave Scott the OK to travel and encouraged us to take our much longed for trip out West, we quickly made plans to leave. I will give you a peek into our amazing adventurous vacation.

Here it goes:
Our family left our home late on the evening of June 15th in our 1976 Dodge Sportsman van, pulling our Kiwi by Jayco 23 foot camper. We were going to Scott’s parent’s house for 2 nights, in preparation to head west on Sunday after church. That 2 1/2 hour drive to their house was a glimpse into the future of our trip. It was pouring rain and was very difficult for Scott to see while driving. It was so windy that the camper was pulling really hard, causing a lot of swaying. Then, the passenger side windshield wiper broke. We got there safely and spent the night.

Saturday, June 16th was a day of fun in the water at the lake at Nana and Papa’s House.

Sunday, June 17th was Father’s Day and we went to church before hopping in Scott’s parent’s Avalanche, pulling our trailer to head to Plankinton, South Dakota. We stayed the night at an RV Park and got up early to keep going.

Monday, June 18th we were on our way to Custer, South Dakota. It rained the WHOLE day, but we did our best to enjoy it. We stopped at a prairie dog feeding area. It was a muddy mess. The kids loved it though! We drove through the Badlands and got out for some pictures. We got soaked, even with umbrellas! We went to Wall Drug and looked through some of the shops. Scott and I got coffee and the kids enjoyed some donuts. We got to Custer, South Dakota and stayed our 1st night at the RV Park there.

Tuesday, June 19th we got up and decided to risk the iffy weather and try to go see Mt. Rushmore. It had been raining so much and there was so much fog! When we got there, you couldn’t even tell that there was a mountain in front of us, much less see any of the Presidents. It was very disappointing. We said some prayers for the fog to be lifted. We started on the trail to get closer and were able to see a bit of the Presidents. When we returned to the viewing area about 30 minutes later, it was very clear. We were thrilled, and got some amazing family pictures!

Our next stop was driving through Bear Country. It was a thrilling experience to drive through all of the wildlife and see them walk right in front of our vehicle. It was wonderful!!!

Next, we went to the Cosmos Mystery area. We were walking through crooked rooms and witnessing gravity defying tricks. It made us all feel a little off balance.

We then drove through Custer State Park and the Black Hills National Forest. We spent our 2nd night in Custer.

Both mornings in Custer, I (Debbie) woke up WAY before everyone else and took long walks. The scenery was breathtaking, and I enjoyed some time alone walking in the cool morning breeze.

Wednesday, June 20th we packed up to leave Custer and head to Cody, WY for the night. At a gas stop, Scott noticed one of the camper tires was stripped down to the steel belt. We asked for permission to leave our camper in the parking lot and head into town 20 minutes away to Plains Tire Co. We got a new tire, went 20 minutes back to the gas station and fixed the tire before heading back on our way. We were thankful that he noticed it before causing us to break down on the side of the road. We got to Cody and stayed overnight in another RV Park. We got some laundry done, which was very much needed! We packed for warm weather and had used up all of our pants and sweatshirts, because the first 4 days were really cool. We didn’t prepare for that much cold weather. Oops!

Thursday, June 21st we left the RV Park in Cody and stopped at Buffalo Bill Dam. After that, we headed to Yellowstone. We were blessed to get a camping site in Grant Village, even though the sign said they were full. The lady told me that I walked up at the perfect time, otherwise there was no way we would have gotten a site. God is good! We stayed 3 nights in Grant Village with no electricity or water hookup. We were roughing it. 😉 After setting up our camper, we went to see Old Faithful. We finished that experience just in time to get back to our site for more rain. We played games in the camper and made dinner on the stove. We were thankful for propane since we had no electricity.

Friday, June 22nd and Saturday June 23rd we just checked out all of the trails and beautiful sites we could find in Yellowstone.

Sunday, June 24th we packed up to leave Yellowstone and head to Grand Teton National Park. We were able to find another site with no electricity or water hookups in Colter Bay. After setting up, we went to Taggert Lake and did a 4 mile hike. What beautiful views we were able to witness!!! We were told that there was a restaurant called Leeks that had delicious pizza. We went there for dinner. They were right! It was delicious!!!

Monday, June 25th we went to Teton Horseback Adventures and had the most amazing 2 hour horseback riding experience. It was the first time horseback riding for all 6 of us. We all did very well. I was impressed by Myles, since he’s only 8 and had never been on a horse. We got to see the Tetons and get a beautiful family picture on our horses with the Tetons in the background.

After our amazing experience, things went sour. About 20 minutes down the road from the horseback riding location, the transmission on the Avalanche failed. Scott had no gears except reverse. He backed up and got to a pullover area. I called the Park dispatch for help. They called a tow truck for us. We waited for an hour for our tow truck to arrive. We had only eaten breakfast, but were now missing lunch and dinner. Our tow truck driver had 4 seats to drive 6 of us an hour to Jackson Hole.

Scott and I were in the front and the 4 kids squeezed into the 2 seats in the back. The third seat had all of Victor’s tools. The trip to Jackson Hole was very interesting! Victor had so many stories for us and had us all laughing. After getting to Jackson Hole, getting the paperwork set for the Avalanche, getting a rental car (Ford Flex), and getting back to Colter Bay campground, it was 7 PM and everyone was starving. We ate what we could find in the camper (many odds and ends).

Our original plan was to head towards Colorado on Tuesday morning. The transmission wasn’t going to be ready until Wednesday or Thursday. Plans change and we rolled with the flow. Not everyone was thrilled, but I kept trying to state all of the positive things about this experience. That wasn’t very successful either.

Tuesday, June 26th we went on a 2 mile hike at Colter Bay. We took the kids swimming with a view of the snowy Grand Tetons in the background. That was cool! On a drive that evening, a Momma Bear and her triplets crossed the street right in front of our car. That was another amazing experience!

Wednesday, June 27th we hung out at our campsite and did some more swimming.

Thursday, June 28th they told us that the Avalanche would be ready by 11AM. We got up early, packed the camper up and headed into Jackson Hole. We ate lunch and did some grocery shopping for the next couple days of food.

After shopping, I called at 11 to make sure it was ready and they told me it should be done by 3PM. We were not very happy, but decided we should find something to do that’s free. We went to the Welcome Center and looked around. They told us that the fish hatchery had a free tour, so we did that. We took our sweet time, because we had nothing else to do. As we were leaving the fish hatchery, we got the call to say the Avalanche was done. We got the truck back and headed to Colter Bay to pick up our camper. We were finally on our way to Rawlins, Wyoming for the night. We set up, showered and went to bed.

Friday, June 29th we woke up at the RV Park- Red Desert Rose Campground and played their mini golf course before heading to Colorado. We drove about 5 hours to get to Estes Park campground at Mary’s Lake. The whole way there, Scott was feeling sick. He made it all the way there before he started vomiting. It started around 5 PM.

I took the kids to the pool at the campground after getting all set up. Scott continued feeling sick and was sick through the entire night. I had backup plans in case I had to take him to the ER. He refused all night and said he’d be fine. He asked me if I could please wait until morning. I agreed, because what else was I going to do? I had been in communication with my cousin Craig who lives in Fort Collins- an hour from our campground. I had also spoken with my cousin Stephanie who lives in Colorado Springs. They were both willing to help in any way, along with Uncle Harold and Aunt Linda who also live in Colorado Springs.

Saturday, June 30th he was still physically sick until 10AM and agreed that we should pack up and head to the ER after dropping our kids off at Craig’s house in Fort Collins. We had paid for 2 nights at Estes Park but informed them that we would have to leave a day early due to illness. We packed up and drove an hour to Craig’s house. All the way there, we heard a clicking noise under the hood every time we slowed down and sped up.

After getting to Craig’s and having them graciously feed our kids lunch, I was trying to convince Scott to go to the ER for fluids even though he said he was feeling better.

We had called the repair place in Wyoming who fixed our transmission (that was now under warranty) to ask them if they could find us the nearest NAPA dealer. None of them were opened on Saturday. They got us into a Pep Boys and said they would take care of the bill even though it wasn’t NAPA. It ended up being a cracked switch plate, just like Scott had suspected.

Craig followed us to Pep Boys to drop off the Avalanche and then dropped us off at the ER. It went fairly quickly. They drew blood to check some lab work and gave him fluids. His lab work looked pretty good besides for being slightly anemic. They tried to give him a second bag of fluids, which he refused, saying he felt fine. Craig picked us up and we went back to Craig’s. Stephanie and her 4 kids came from Colorado Springs along with Uncle Harold and Aunt Linda to visit with us for the evening. It was so great to be able to see all of them! We had a wonderful evening! Our family slept at their house.

Sunday, July 1st we woke up and went to church with Craig, Aimee, and the girls. After church, we got a call to say the Avalanche was ready to be picked up. Craig took Scott and I to pick it up while Aimee took the 7 kids home. We ate a little lunch and got back on the road to head to Nebraska for the night. We set up, slept and got up in the morning to head to Scott’s parents house.

Monday, July 2nd Scott saw that another tire was bald down to the steel belt. We drove to a tire shop and got another new tire. We drove 9 hours and arrived at Gary and Karen’s house around 7PM. It was so great to see our dog Sophie again and to see Nana and Papa, who took care of Sophie for 2 weeks while we were gone.

Tuesday, July 3rd the kids spent the day in the lake. Gary and Karen took them knee boarding in the boat while I did laundry and tried to get organized to head home.

Scott hadn’t felt very well since the Friday/Saturday episode. This morning, he drank some OJ and got sick again. He hasn’t been able to eat much since Friday, but is trying to stay hydrated with a lot of water. It’s 7:15PM as I finish writing this on Tuesday, July 3rd. We’re about 2 hours from our home sweet home. It will be wonderful to be home again and sleep in our own beds!

Tomorrow starts the medical preparations for surgery in 2 weeks. Scott has a procedure on Thursday morning at 8AM, and I pray that he feels good enough to get through it. Hopefully he won’t throw up any more and he’all be able to start eating again soon.

He has a CT scan and appointments with his oncologist and the surgeon before surgery as well.

In case you missed it, surgery will be on Friday, July 20th. We arrive around 5AM. I can’t believe it’s only a little over 2 weeks away.

Even though we had some snags on our trip, I feel extremely blessed to have spent so much time together with just the 6 of us. We have so many stories to tell and memories that will last a lifetime! God was so good to us and kept us safe during the whole trip. We saw so much wildlife and beautiful scenery. It’s a trip that will never be forgotten.

I know that not everyone has a Facebook account, but I will be posting pictures from our trip on my page if you are interested.

It’s back to the life of many appointments and very full calendars. Back to being a taxi driver and spectator for our kids sports. I wouldn’t change a thing if I could. God gave us this life and he has a perfect plan for us. I know that he will continue to give us the strength that is needed to keep pushing forward.

Getting Caught Up on Posting My Sister Debbie's Caring Bridge Updates - June Posts/Surgery Scheduled

Home for Tyler’s 12th Birthday!

Journal entry by Debbie Heiman — Jun 9, 2018

I’m sorry that I haven’t updated Caring Bridge. I did post that we were home on Facebook, but I know everyone isn’t on Facebook.

We were able to come home on Thursday afternoon. Scott remained fever free and transitioned to pill form for all of his medication, as opposed to IV form through his double lumen port. It is always nice to be released from the hospital earlier than expected.

The staph infection seems to be gone or at least significantly better. He only has the shingles now, with no underlying, red, irritated skin. His shingles are beginning to scab over, which is a good sign of healing. Hopefully he will be done with these soon.

I am so thankful that my Mom was able to come and stay with the kids. We were admitted on Monday. My friend Rachel was able to stay with the kids Monday night, which was very helpful! She provided great company for them and brought ice cream for a special treat. My Mom came on Tuesday afternoon and I took her to the train station today to head back home to Indiana.

We are so thankful that my Mom’s cancer is doing better at this point in time. Her recent scan showed that the tumors on her spine shrunk a little bit more. She is on chemo pills right now, and put her radiation on hold to come and help us this week. I’m so thankful for my Mom! There is always so much running around for the kids, and she did it all very well. I’m sure she’s sleeping well tonight!

 I am extremely grateful to everyone who is willing to help with meals for our family. I’ve had people ask if they can provide meals, but felt a little overwhelmed by it all. My friend Tricia set up a mealtrain for our family so that it’s all done online for me. It’s wonderful and so greatly appreciated, so that I can focus my time and energy on Scott and the kids right now.

We celebrated Tyler’s 12th Birthday today. We got him a new bike. We had DQ ice cream cake, and we watched Black Panther. It was a relaxing day and Scott got to be a part of it. Tyler was really happy to have us all was here today.

I want to thank everyone who has reached out by FB messages, calls, texts, cards, and offering their help! I’m so thankful for all of you!!! God Bless you all.

Having said that, it brings me to this passage. The amount of Christian love that is being shown to our family is so greatly appreciated. All of the things that are done to help make my days go smoothly don’t go unnoticed. I hope someday I can repay favors to each and every person who has reached out to our family.

As we have opportunity, let us do good to all people, especially to those who belong to the family of believers. Galatians 6:10

Race to Cure Sarcoma and t-shirt orders

Journal entry by Debbie Heiman — Jun 11, 2018

I posted on Facebook about ordering Heimanstrong shirts for anyone who is interested. I’m posting on Caring Bridge for people who aren’t on Facebook or possibly missed the post.

They are $5 each and I will post pictures below of the front and back of the shirts. You can order them in Children’s size XS-XL and adult sizes S-4X. Sizes 2X-4X are $7 each.

I need all orders in by this Thursday night, June 14th. I want to order in time to get shirts for the Sarcoma race on July 14th.

Below is the link to sign up for the race under our Team Heimanstrong. I would love to have the biggest team like we did last year, and flood the crowd with our Heimanstrong shirts and spread the word that God is Stronger than Sarcoma!!! Who will join our family? I would love to have all of you their with us on Saturday morning, July 14th in Oconomowoc, WI. Thank you all in advance for your love and support !

https://runsignup.com/Race/44121/Donate/gSHo2ArW4a0Gf72P#.WvxPIDqUMQ4.facebook

Surgery is scheduled

Journal entry by Debbie Heiman — Jun 12, 2018

It is getting real. Stress and anxiety are setting in, and we need to lean on God for our help more than ever. This is Scott’s 2nd major surgery. The first surgery was in New York, and we were away from the kids for 6 weeks. His upcoming surgery is only about 5 weeks away. Yikes!

His first surgery was very difficult in the recovery department. One thing after another went wrong,  including extreme water retention that made him balloon up like nothing I’ve ever seen before, infection in his incision causing him to need a wound vac, and getting C diff, among other things.

Feoedtert called today to finalize all of our appointments.
July 9th - We have a pre-op meeting at 10:15AM with the anesthesiologist to discuss the surgery.
We return that night at 5:30PM for his CT scan.

July 18th - 3:00PM- labs
4:00PM - We have our meeting with the surgeon, Dr. Mogal to discuss details of the surgery.

July 20th - surgery day
5AM arrival for surgery

July 21st - Lexi returns from her week long mission trip to Detroit. Hopefully Scott will be able to have visitors so that he can welcome her home.

We spoke to our oncologist and the surgeon about wanting to do a family vacation this summer, but knowing that with surgery coming up, it may not be possible. They both urged us to go and make memories and said they would help us work out the scheduling.

After that, Scott got shingles and an infection and was hospitalized for 4 days. Plans changed with chemo. Scott is no longer doing a round of chemo before surgery. They know that it will just push him down and not give him time to recover before surgery.

Dr. Charlson still wants us to be able to do our vacation, so Scott will have labs on Thursday and then an appointment with Charlson to be cleared to travel out of the state. We will be camping along the way and being as frugal as possible. Being together is all that really matters to us. We would appreciate prayers for his blood counts to be in a safe range for traveling and for his health while we are gone.

We are trying very hard to be content and joyful in all circumstances.

Better a little with the fear of the Lord than great wealth with turmoil. Better a meal with vegetables where there is love than a fattened calf with hatred. Proverbs 15:16-17

Godliness with contentment is great gain. For we brought nothing into the world, and we can take nothing out of it. But if we have food and clothing, we will be content with that.  1 Timothy 6:6-8

Pic Taken At Last Years Race to Cure Sarcoma - Milwaukee