We are approaching the end of another school year! 2 1/2 more weeks and Matt will be home for the summer. Woohoo! Klaus will have finished kindergarten (our first public schooler!) He loves school so much and wants to go back for more in 1st grade! I want to just catch up on everyone.
Matt had clear scans in February; next scans are in June. He enjoyed a period of being pain-free for the most part, but the achy, annoying, frustrating pain in his leg is back. :( It's really bothersome and he has to learn to manage it and not knowing why it's happening is hard to deal with, but he's dealing. There's nothing much else to do about it, is there? It really takes faith not to turn into a hypochondriac after you've been diagnosed with cancer. Other than that, he is doing well. He is considering the possibility of going back to school to get his masters degree. We'll see if he is inspired to do that or not. I support him either way.
I've been super busy juggling work responsibilities now that I've put my real estate license into activity. I am officially a realtor now and I have 1 client and 3 customers who I am helping to buy a house. There is so much to learn and everything takes me a lot of time behind the scenes. I really enjoy it. I am just learning how to juggle home, school and work. Thankfully the kids and Matt are all really supportive. I wake up EARLY to squeeze in exercise, prayer, scripture study, journaling and getting ready for the day. I've decided to train for a half-marathon instead of a marathon. If I can run for 13 miles, I feel like that's good enough. Truly. The point of exercise is health!
Our school year this year has been great. We've really gotten disciplined and focused. The girls are doing multiple math lessons each day to catch up where they got behind from last year. Ella has already finished her English for the year. Abby's already doing high school level English. They all read so much! We are studying American Sign Language and poetry together during our devotional. We study music appreciation once a week. Felicity takes piano lessons from me once a week. I also teach another student, a 13-year-old friend of Kian's. Kian has been working really hard this year. We've created a high school transcript for him and have his junior year all planned out too. Technically, he could graduate a year early if he wants to. The plan is for him to get a super high ACT score so that he can get a full-ride scholarship to the college of his choice. At this point, he is considering BYU and MUST (Missouri University of Science & Technology). He's gotten a lot of great coaching from his physics tutor about college prep and colleges to consider. I think he wants to go to BYU most of all but we'll take some campus tours in the next year.
Kian will be turning 16 in 2 1/2 weeks as well! He's been getting a lot of driving time practice to be ready for his test. He loves seminary and all of the youth activities he is involved in. He still claims not to be interested in girls but I don't believe him. He has actually found a new hobby in singing. I never thought that would be possible but he practices singing and during our ward talent show when the homeschool choir sang "Do Re Mi" from the Sound of Music, he was the one in the whole group doing the most hand movements and acting the most relaxed and silly of all of them. He loves eating and he is growing slowly. He takes a parkour class at the local dance academy.
Abby is always reading or listening to a book! She loves the Greek and Roman myths and she knows about all of them! She is our house dishwasher (that is her jurisdiction). Believe me, it's a lot of dishes! She retreats into her room for privacy and solitude more than any of my children. She enjoys junk food, but at least now I hear her tell me, "I'm going to let my kids eat some junk food some of the time." It used to be, "I'm going to let my kids eat whatever they want!" She wears her blondish brown wavy hair long. She hates it pulled up. She has started ballet, jazz and tap dance classes this year which she enjoys.
Ella is always reading or listening to a book! She and Maggie are best buddies. She loves her short hair. She loves reading books about dragons and has started drawing them. She loves to play. She is taking ballet and jazz for dance.
Felicity is enjoying soccer this season. Remember when she used to be shy? She's not anymore! She played a song on the piano for our ward talent show. She cries a lot like her life is so hard. It's hard to deal with her gloominess sometimes. She wants to be able to babysit Maggie so badly but right now she can be a mother's helper. She is taking a ballet class.
Klaus is doing great at school. At home, he pushes my buttons so easily that there are days I truly can't get along with him. He is naturally rebellious and argumentative. He just disagrees with everyone!! But he's also very loving and sensitive. He bore his testimony to us the other night about how Jesus doesn't want us to eat sugar. It was so great-we were all hiding our laughter! He is also playing soccer this year and soon will be playing T-ball again.
Maggie is 2 and talking a lot more and singing songs. She goes on the potty whenever I let her keep her diaper off. She has a hair fetish where she'll grab your hair and rub it against her ear. It used to be just my hair she wanted, but she'll grab ahold of other people's hair now! She is cuddly and generally happy unless she doesn't get what she wants. She'll yell at her siblings, "Leave me alone!" Or she'll stomp her foot at me in anger. She can say prayers now all by herself. Everybody adores her.
This summer we actually don't have a lot of plans. We do have a trip to California that we're looking forward to where we'll get to visit with Matt's family and my Dad and friends at the end of July. And we're planning a Cousins Camp with my side of the family at the beginning of August here in Missouri. But May and June are wide open at this point!
We are enjoying our new house. It's comfortable. It's nice that the kids have the upstairs and parents have the downstairs. We actually like living in town. It's so convenient.
That's all I can think of to keep y'all updated!
Sunday, April 30, 2017
Thursday, January 5, 2017
A Reminder
After a few months of Matt showing clear scans and no evidence of cancer in his body, I was feeling positive about his (our) future. I felt hopeful that God would grant us several years of health. I hoped for him to be alive as long as possible, as healthy as possible, and to continue to be my partner and that we could raise our children together. I especially felt that our loving Heavenly Father would not leave one of his children, specifically Klaus, without a father because Klaus needs his father so much on a daily basis. I told Matt's mother recently, "My hope is that Matt will be around as long as Klaus needs him."
But we were given a humble reminder this past week when we visited Matt's medical oncologist for a follow up appointment. There was nothing new on physical examination. And scans were scheduled in February. But when we asked him some questions about Matt's specific cancer, which is epithelioid sarcoma, he reiterated to us the rarity of the disease and its sporadic, unstable, unpredictable nature of recurrence. He calls it a "bad actor."
"We've had six patients with this specific disease in the last five years. Do you think that is a lot or a little?" he asked us.
I replied, "That seems like a very small amount of patients with ES."
"No," he answered, "It's actually a lot."
When I reviewed Matt's notes from his first visit to his surgical oncologist, Dr. Rosenthal, he had told us there are 12 cases of this disease per year in the entire country.
We get the feeling when we visit Dr. Myron that he wants us to go travel, that he encourages us to go and do those things that we want to enjoy in life. Is it because he knows there will only be a little time that Matt will be well enough to do these activities?
I asked him, "How are your other patients with ES doing?" He paused. He looked at me. He smiled. And he completely avoided my question.
He doesn't like Matt's experience with the residual pain in his behind. He calls it sinister and he is as uneasy about it as Matt is himself.
Dr. Myron is aggressive in his monitoring for recurrence.
"Are you this cautious with all of your sarcoma patients?" I asked.
He answered with another reply about how dangerous this specific sarcoma can be.
We left the appointment with heavy hearts and a sense of doom and hopelessness. I cried as soon as I left the building.
"I was feeling so hopeful. I was counting on many more years together. And now I feel like we're lucky to have had this long," I cried to Matt.
We had a heartfelt conversation on our way to Ikea. (Hey, if we were all the way in Overland Park, Kansas which is an hour and a half away, we might as well stop at Ikea for some lingonberry juice--which they didn't have!)
Matt expressed his underlying gut feeling that something is not right inside of his body and the realization that he won't get an answer for the pain he is experiencing. He is never able to forget about the cancer because the pain is always there to remind him.
He explained to me. "It's like me asking you to forget being pregnant, if you were pregnant. Would you be able to? Could you forget about the morning sickness, the fatigue, the aches and pains, the emotions, etc.?"
"Of course not," I replied. "When I'm pregnant, I'm constantly thinking about it."
It's hard to balance the feelings I'm feeling: the reality of the statistics, the hope that comes when I forget about the statistics, the sense of doom from the doctor, the knowledge of a loving Heavenly Father who cares for Matt and for me and our family, the possibility that Matt will die from this disease, and the enjoyment of this current period of health.
Since the appointment, I've had to talk to family and friends about it and pray about it. Tears will leak out of my eyes at inappropriate moments. But I know that doesn't matter. I'm just trying to process the information and learn how to balance the feelings: the knowledge and the hope.
I texted my friend with a realization which I later recognized was an attitude of submission. "I don't need to fight against it as a possibility, that he might die from this disease. I've had a warning. His gut feeling is that something is not right. He is aware of it constantly because of the pain. His doctor is sooooo cautious about it. I think we need to come to accept it. Somehow. And then just be glad for his health till it happens. It feels morbid and pessimistic (to plan on the cancer recurring) but then on the other hand, God gives us revelation which we should listen to and no matter the outcome there's no reason to lose hope."
My dad has mentioned several times to us, especially at the beginning of this ordeal, that all we have to do anymore is submit to His will. I think I'm starting to get it. I can try to convince God that my plan is better, that I love Matt and I need him to stay healthy, that Klaus will be devastated without his Daddy, that it's unfair to Matt's mother to take another son away early, but I recognize now that all of that is a feeble attempt by me to control what isn't mine to control. I must let God be in charge of what is His to give and simply show gratitude for each and every precious moment of life.
We will make the effort now to live our lives fully, to make family memories, to take family vacations. And I will pray that my heart can open to accept God's will and praise Him for His blessings. There is a sense of peace that settles on my mind and heart when I do in fact submit my will to His.
But we were given a humble reminder this past week when we visited Matt's medical oncologist for a follow up appointment. There was nothing new on physical examination. And scans were scheduled in February. But when we asked him some questions about Matt's specific cancer, which is epithelioid sarcoma, he reiterated to us the rarity of the disease and its sporadic, unstable, unpredictable nature of recurrence. He calls it a "bad actor."
"We've had six patients with this specific disease in the last five years. Do you think that is a lot or a little?" he asked us.
I replied, "That seems like a very small amount of patients with ES."
"No," he answered, "It's actually a lot."
When I reviewed Matt's notes from his first visit to his surgical oncologist, Dr. Rosenthal, he had told us there are 12 cases of this disease per year in the entire country.
We get the feeling when we visit Dr. Myron that he wants us to go travel, that he encourages us to go and do those things that we want to enjoy in life. Is it because he knows there will only be a little time that Matt will be well enough to do these activities?
I asked him, "How are your other patients with ES doing?" He paused. He looked at me. He smiled. And he completely avoided my question.
He doesn't like Matt's experience with the residual pain in his behind. He calls it sinister and he is as uneasy about it as Matt is himself.
Dr. Myron is aggressive in his monitoring for recurrence.
"Are you this cautious with all of your sarcoma patients?" I asked.
He answered with another reply about how dangerous this specific sarcoma can be.
We left the appointment with heavy hearts and a sense of doom and hopelessness. I cried as soon as I left the building.
"I was feeling so hopeful. I was counting on many more years together. And now I feel like we're lucky to have had this long," I cried to Matt.
We had a heartfelt conversation on our way to Ikea. (Hey, if we were all the way in Overland Park, Kansas which is an hour and a half away, we might as well stop at Ikea for some lingonberry juice--which they didn't have!)
Matt expressed his underlying gut feeling that something is not right inside of his body and the realization that he won't get an answer for the pain he is experiencing. He is never able to forget about the cancer because the pain is always there to remind him.
He explained to me. "It's like me asking you to forget being pregnant, if you were pregnant. Would you be able to? Could you forget about the morning sickness, the fatigue, the aches and pains, the emotions, etc.?"
"Of course not," I replied. "When I'm pregnant, I'm constantly thinking about it."
It's hard to balance the feelings I'm feeling: the reality of the statistics, the hope that comes when I forget about the statistics, the sense of doom from the doctor, the knowledge of a loving Heavenly Father who cares for Matt and for me and our family, the possibility that Matt will die from this disease, and the enjoyment of this current period of health.
Since the appointment, I've had to talk to family and friends about it and pray about it. Tears will leak out of my eyes at inappropriate moments. But I know that doesn't matter. I'm just trying to process the information and learn how to balance the feelings: the knowledge and the hope.
I texted my friend with a realization which I later recognized was an attitude of submission. "I don't need to fight against it as a possibility, that he might die from this disease. I've had a warning. His gut feeling is that something is not right. He is aware of it constantly because of the pain. His doctor is sooooo cautious about it. I think we need to come to accept it. Somehow. And then just be glad for his health till it happens. It feels morbid and pessimistic (to plan on the cancer recurring) but then on the other hand, God gives us revelation which we should listen to and no matter the outcome there's no reason to lose hope."
My dad has mentioned several times to us, especially at the beginning of this ordeal, that all we have to do anymore is submit to His will. I think I'm starting to get it. I can try to convince God that my plan is better, that I love Matt and I need him to stay healthy, that Klaus will be devastated without his Daddy, that it's unfair to Matt's mother to take another son away early, but I recognize now that all of that is a feeble attempt by me to control what isn't mine to control. I must let God be in charge of what is His to give and simply show gratitude for each and every precious moment of life.
We will make the effort now to live our lives fully, to make family memories, to take family vacations. And I will pray that my heart can open to accept God's will and praise Him for His blessings. There is a sense of peace that settles on my mind and heart when I do in fact submit my will to His.
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