Journal entry by Debbie Heiman — 1 hour ago
I'll start by updating about our 14 year old Lexi. She got a concussion during volleyball practice on Monday, September 11th. She also hurt her neck when she got hit in the face with the ball. She had a follow up x-ray and met with a neurologist today. She is doing much better and was able to take the neck brace off for most of the day. If she feels good and has no pain, she can leave it off. However, they want her to have it in her locker in case her neck starts hurting, so she can wear it for support.
She will be cleared to play volleyball as soon as she is completely pain free. She is still having headaches. They said she should rotate between Ibuprofen and Tylenol as needed. She also was told many times to stay hydrated!!! Drink lots of water, because like a car, water is the gas that makes us run.
Next is my Mom's update. My Mom has bone cancer. She has tumors on her spine, which cause her a lot of pain. She has been undergoing chemo and radiation recently. She had a scan on Wednesday and got the results today. The good news is that 3 of the tumors on her spine shrunk a little. 2 remained the same. The bad news is that there is one new tumor. The doctor doesn't know why a new tumor would show up during treatment, while other tumors are shrinking. They will be performing a needle biopsy sometime soon to check and see if it's a different kind of cancer than the other tumors. Please keep my Mom and Don in your prayers! It's been such a long time that she's been battling cancer! It will be 18 years at the beginning of the year. She's quite an amazing woman, if I do say so myself!!!
Last, but not least, I'll fill you in on Scott's recent results. First I'll tell you that on Tuesday, September 12th, Scott turned 40. That is a huge deal for us. We're so thankful that he's come so far and is doing so well currently!
Our nurse practitioner walked into the room with 2 thumbs up. I said, "Are you serious?!?" Both Julie and Scott said, "I don't think we would joke about something like this." She said his scan was completely stable once again! For those who are new to our journey, stable means that his liver still has inoperable tumors, but no new tumors were found in his peritoneum (abdominal area). He had surgery in June 2016 to remove all of the tumors in his peritoneum. I believe this is a true miracle and blessing from our good and gracious Savior!
She told us that we don't have to do anything right now, and that he will have a PET scan in 3 months. That would put us at December 20th. She said that they just don't do scans a couple of days before Christmas. That's fine with us. He will have a PET scan on January 8th and we'll get results on January 10th.
He has to go every 6 weeks to have his meta port flushed and make sure that both the inner and outer port are still functioning properly for future use. His labs looked excellent as well. His one liver number is slowly getting closer to normal counts. It was very elevated after surgery and slowly but surely is coming down. All in all, the news is amazing!
We talked about why we aren't doing any maintenance chemo right now. They said that you do what works. Being treatment free is working well for us. There is no proof that he would be any better off doing chemo. He feels so much better when he isn't in treatment, and his quality of life is so much better. He hasn't had treatment since March and has remained stable. Praise be to God! This doesn't work for everyone, that's for sure, but it's working for Scott.
Our prayer is that Scott remains healthy and fever free throughout the winter. We also pray that he is able to enjoy an additional 3 1/2 months of feeling pretty good and hopefully remains free of pain.
God hears all of your prayers and we are so thankful for all of the love and support that we have. I told Scott that God's not done with him yet. I believe he has great plans for Scott, and I can't wait to see what he has planned for Scott's future and for our family. We will continue to hope and pray for many more years with Scott. He is such a blessing to so many! I can't think of one person who doesn't like him. He is a remarkable guy. Of course I'm biased though. The kids and I just love him with all of our hearts!
She will be cleared to play volleyball as soon as she is completely pain free. She is still having headaches. They said she should rotate between Ibuprofen and Tylenol as needed. She also was told many times to stay hydrated!!! Drink lots of water, because like a car, water is the gas that makes us run.
Next is my Mom's update. My Mom has bone cancer. She has tumors on her spine, which cause her a lot of pain. She has been undergoing chemo and radiation recently. She had a scan on Wednesday and got the results today. The good news is that 3 of the tumors on her spine shrunk a little. 2 remained the same. The bad news is that there is one new tumor. The doctor doesn't know why a new tumor would show up during treatment, while other tumors are shrinking. They will be performing a needle biopsy sometime soon to check and see if it's a different kind of cancer than the other tumors. Please keep my Mom and Don in your prayers! It's been such a long time that she's been battling cancer! It will be 18 years at the beginning of the year. She's quite an amazing woman, if I do say so myself!!!
Last, but not least, I'll fill you in on Scott's recent results. First I'll tell you that on Tuesday, September 12th, Scott turned 40. That is a huge deal for us. We're so thankful that he's come so far and is doing so well currently!
Our nurse practitioner walked into the room with 2 thumbs up. I said, "Are you serious?!?" Both Julie and Scott said, "I don't think we would joke about something like this." She said his scan was completely stable once again! For those who are new to our journey, stable means that his liver still has inoperable tumors, but no new tumors were found in his peritoneum (abdominal area). He had surgery in June 2016 to remove all of the tumors in his peritoneum. I believe this is a true miracle and blessing from our good and gracious Savior!
She told us that we don't have to do anything right now, and that he will have a PET scan in 3 months. That would put us at December 20th. She said that they just don't do scans a couple of days before Christmas. That's fine with us. He will have a PET scan on January 8th and we'll get results on January 10th.
He has to go every 6 weeks to have his meta port flushed and make sure that both the inner and outer port are still functioning properly for future use. His labs looked excellent as well. His one liver number is slowly getting closer to normal counts. It was very elevated after surgery and slowly but surely is coming down. All in all, the news is amazing!
We talked about why we aren't doing any maintenance chemo right now. They said that you do what works. Being treatment free is working well for us. There is no proof that he would be any better off doing chemo. He feels so much better when he isn't in treatment, and his quality of life is so much better. He hasn't had treatment since March and has remained stable. Praise be to God! This doesn't work for everyone, that's for sure, but it's working for Scott.
Our prayer is that Scott remains healthy and fever free throughout the winter. We also pray that he is able to enjoy an additional 3 1/2 months of feeling pretty good and hopefully remains free of pain.
God hears all of your prayers and we are so thankful for all of the love and support that we have. I told Scott that God's not done with him yet. I believe he has great plans for Scott, and I can't wait to see what he has planned for Scott's future and for our family. We will continue to hope and pray for many more years with Scott. He is such a blessing to so many! I can't think of one person who doesn't like him. He is a remarkable guy. Of course I'm biased though. The kids and I just love him with all of our hearts!
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