Journal entry by Debbie Heiman — 5/22/2017
About a month ago, I wrote my last post. In the post, I said that we are blessed to know what may lie ahead for our family. Although that can make days even harder at times, it can also be a blessing. I said that sometimes a tragedy hits you out of nowhere and you don't have the precious time that you so badly want to have. Time is such a precious gift!
Scott's cousin Jamie was only 35 years old. Jamie suffered a seizure on May 9th. She was taken home to heaven on May 17th. We made a day trip to Minnesota today for her funeral. We're on our way home now. Scott is driving, so I have a lot of time to sit and think.
I ask that you say some prayers for Jamie's whole family! She is survived by her sister Kelly and her family, her sister Jessica and her family, and her parents Deb and Paul. She is also survived by many aunts, uncles, cousins, and others who loved her very much. Adjusting to life without Jamie is going to be very difficult for her family. My heart goes out to them! Jamie was always there to greet you with a hug and a smile, and everyone is going to miss that about her.
Today was another reminder to make every day count and to never take your loved ones for granted. Jamie's service was beautiful, and we know that she is safe in heaven smiling down on all of us.
Scott will be having a PET scan in 8 days (May 30th). We will get the results from his scan on Thursday, June 1st. Please pray for a stable scan, or even better yet, that the tumors in his liver have shrunk! Either way would be amazing news!
Scott has been treatment free for almost 2 1/2 months. It seems like it has been a year! It is truly such a blessing to not have appointments, chemo, etc. filling up our calendar and our life! I would love for him to continue being treatment free, but we won't know what our next step will be until we get scan results. His hair is growing back and he has a nice beard. He is looking and feeling really good! I just love it!
Our oldest, Lexi, jut got confirmed yesterday. We had a wonderful day celebrating with many friends and family members! We can't believe that she's starting high school in August! It just doesn't seem possible. How did time go by so fast?
I'm posting some pictures from her beautiful day.
Journal entry by Debbie Heiman — 5/31/2017
Our grueling wait ended earlier than we expected. The nurse posted on our Froedtert MyChart page this evening. We are so excited to share that Scott's scan remains stable! Better yet, a couple of the tumors in his liver have decreased slightly in size!
I can't even begin to explain how happy our family is to receive this news! Not having to walk in to the appointment tomorrow with knots in our stomachs, being able to actually sleep tonight, and enjoying an evening of dinner and watching A Dog's Purpose are all blessings that we won't be taking for granted!!!
I'm not sure why, but God has been so good to us! 1 year ago, Scott was preparing for surgery in New York. Today, we are celebrating how far he has come since surgery! It's an amazing feeling!
I'll post again tomorrow to let you know what we discuss with Dr. Charlson about future treatment or taking a longer break from it. Scott would like to continue with no treatment if our Dr. agrees. They will not let Scott go more than 3 months without a scan. We know that.
Enjoy your evening everyone! Love the ones that you are blessed to share your life with!!!
Midnight is the deadline for signing up for the Sarcoma 5K walk/run at $35. After midnight, the price goes up. The link for the race is posted above.
If you would like a Heimanstrong t-shirt, they are $5. I need to know by June 14th.
Journal entry by Debbie Heiman — 6/1/2017
Today's appointment with Dr. Charlson was wonderful! Everything we talked about was positive and encouraging! Scott's blood counts all look great. One liver count was elevated, but it has been for a long time, and is lower than it used to be, so nothing to be concerned about.
We discussed some options for his liver, but nothing will ever rid his liver of all of the tumors. If we start to try and shrink some of the larger tumors in his liver, it could end up causing more harm than good. Since his liver remains stable, we are going to leave it alone. We're happy with a stable and good functioning liver!
We discussed more chemo, and decided that we will continue with another 3 month break. That's right, Scott will have no treatment this ENTIRE summer!!!!!!!! The past 2 summers have been very difficult for Scott, and we can't even process the fact that we don't have hospitals and treatments wasting our summer. It's truly unbelievable and such a HUGE blessing from God!
He will have to go to Froedtert on June 29th, July 27th, and August 29th to have his port flushed. We need to make sure it doesn't clot and continues to function properly for future treatment. He will also have a CT scan on August 29th. We'll get results on August 31st. It's hard to believe that the kids will be in school before he has another scan.
Now, we need to start looking at our calendar for the summer. It will be the first time we can actually make plans in 2 years! I pray that Scott remains healthy this entire summer and we can enjoy time with family and friends and make a lot of happy memories!
Journal entry by Debbie Heiman — 6/4/2017
Yesterday, we celebrated how far Scott has come in the past year. June 3rd, 2016, was the day that Scott had surgery in New York. 1 year later, we receive news that Scott's cancer remains stable after 3 months of no treatment. Then we decide that we'll take 3 more months off from treatment before we do another scan. We have so much to be thankful for and so much to celebrate! Scott and I went to dinner and a movie yesterday. It had been a long time since we went on a date. I think the end of February was the last time, but who's keeping track?
We thank God every day for blessing us with this time! We will continue to fight the battle against Sarcoma.
The link below will take you to the website to sign up for the Race to Cure Sarcoma on July 16th. It will take you right to our Heimanstrong link. If you aren't able to attend, but would like to support Sarcoma research to help find a cure to this monster, here's how.
Click on the link below, click on race menu and then click donate. Go to team fundraiser and type in Team Heimanstrong. Thanks to our 42 current team members! I'm excited each time I see our team growing! Thanks to the generous friends who have donated to Sarcoma research! Your donations are very important and very much appreciated!!!
Journal entry by Debbie Heiman — 6/15/2017
I know that Scott is currently taking a break from treatment, but I don't want to stop posting and updating everyone who cares about him. This Caring Bridge site is truly therapeutic for me! Writing about what's going on helps me in a way that I can't explain.
This morning, Scott's alarm goes off at 5AM, as usual. With nowhere to rush off to every morning, I've been able to stay up later with the kids and sleep later than my normal 5 or 5:30. I decided to get up with him today and make his coffee and say goodbye to him.
I joke "kinda, but not really" when I say he puts me to shame. If you get sick of me posting about how truly amazing this guy is, then you can stop reading my posts, because I am in awe of him daily!
Scott works a minimum of 10 hours a day at his job. He doesn't then come home and relax. Last night, he changed the oil on our 76' Dodge Ram van (Preshus- that's her name) and then grilled our pork chops at 8:45 for our late 9:00 dinner. The night before, he made it to Tyler's baseball game, did some odds and ends around the house, and then he mowed the grass. That made me feel guilty for not doing it before he got home.
Even when he doesn't have the energy to keep his eyes open, he's making sure that he spends some time with our kids each night. He doesn't EVER get enough sleep, because his plate is so full of responsibilities, and not one of them is left unfinished! Scott is the most dedicated man that I have EVER met in my life. Somehow he manages to juggle it all with such grace and not a single complaint. I strive to be more like him! Everyone could learn something from Scott. He is an all around nice guy too!
We know how important this break in treatment is for his physical and mental health! We pray that God will bless us with another stable scan at the end of August. We trust that God has our best interest in mind and whatever happens will be for our good.
The fact that Scott still has cancer in his liver is always on my mind. However, my mind plays tricks on me lately. I see how great he looks, and sometimes for short spurts, I forget that he's sick. I pray that he has some of those moments too!
It's difficult to live in the moment and enjoy every day to the fullest when we let ourselves think about the future. I try SO hard to not think about the future, but reality is still there.
God has been so good to us in blessing us with over 2 more years with Scott. I continue to pray for many more years with him. Please join me in praying for Scott's faith, strength, and positive attitude to keep fighting the good fight that he has been fighting for over 2 years! Words can't express how much he means to me and our kids. He is quite the hero in our house, and we're so proud to say he's all ours!
Happy early Father's Day to all of the great Dads who sacrifice so much for their families! It means more to us than you could ever know!
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