Help Catie LeSage Battle Cancer
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It’s our 8 year anniversary and our first private plane ride. The breeze from the vent is on my face and I can hear the whistling of air on the airplane door. I glance over to see that Catie’s eyes are closed. She looks peaceful and at rest for the first time in 48 hours. We should be up north enjoying time off, instead we’ve been whisked away by an ambulance, loaded into a jet and are on our way to Mayo Clinic, again.
We’re both surprisingly calm, not allowing negative thoughts into our minds. The last couple of weeks have been filled with hard feelings of being sick of the grind. You’d think we’d have learned our lesson from this, but we’re flawed human beings. Last night we briefly spoke and expressed that the issues we were having didn’t matter. We just wanted to be with our 3-year-old son Faron. He has been the light in this and the only thing giving us any sense of happiness lately. It was so hard saying goodbye to him last night. Catie’s goodbye consisted of her singing him “Jesus loves me” while he nestled into her arms. I video taped it realizing it was such a beautiful moment. Faron was sleeping when I said goodbye. I loaded him into the car seat and whispered, 'I love you so much.' Even though he was sleeping, in his tired voice he mumbled back, 'I love you so much.'
Catie doesn’t deserve this. How could anyone? She’s been completely steadfast in her faith. Yet, once again we’re both left questioning why? Why something else? Why more pain? Are we truly on a journey of enlightenment that He’s sending us on? What haven’t we learned yet? What valuable lesson is needed to be understood? We search for the answers to these questions on a daily basis. I think the answers lie inside of us. We continually complicate our lives, injecting our daily routines with so much stress that we blind ourselves to what’s right in front of us. Catie and Faron are right in front of me. It's never been more evident to me that they are all that matters. I love both of them so very much. It’s in these raw situations, stripped of all the noise, that you finally feel and experience love.
I love Catie more than I ever have. She is the absolute bravest person I've ever met. I've never seen anything scare her...well, except bees. I look at her and can't comprehend how she continually pushes forward. But then I realize why she's able to...it's always been her faith.
Last night the three of us were sitting in bed at the hospital, knowing that Mayo awaited us in the morning. My arm was around Catie while Faron laid on our laps. We were watching a slideshow of Faron’s first year. There was a picture of Catie and Faron walking in the water in the Bahamas. It was the first time Faron’s feet had touched the ocean. Faron looked up at Catie as we held him and said, “Mommy, you don’t have any more owies.” My heart sank in my chest. This little boy with a heart larger than life has only known this broken version of his mommy. The version 1.1. All Catie has ever wanted throughout this whole thing was to be a mommy at 100%. She didn’t need to be healed for any selfish reasons. She just wants to be a mom in the simplest version. To be able to carry her son is now her heart's desire. People ask us what will make us feel better and, honestly, the only thing that makes us truly feel better is when that little boy's arms are wrapped around us.
So here we are on our way to Mayo again. So many emotions fill my head about that place. Once again we are headed there for one reason. The same reason everyone goes to Mayo. Hope. Hope to have a normal life. The very thing we all take for granted every day is the one and only thing Catie and I want as we bounce along in this plane.
But this anniversary plane ride is the middle of our story. How did we get here?
In November of 2017, Catie was diagnosed with Osteosarcoma on her right pelvis. The tumor was approximately the size of an 8cm ball. After consultations with doctors at Aurora, Froedtert, and Mayo Clinic, a panel of experts determined the best course of action would be 4 months of chemotherapy followed by a major surgery at the Mayo Clinic in Rochester, MN. It’s such a complex and difficult surgery that only 2 doctors in the United States perform it. Once healed enough to resume, she would then complete another 4 months of inpatient chemotherapy.
The first rounds of chemotherapy were extremely difficult,. Because of complications from the chemotherapy, Catie lived in the hospital a large portion of those four months. Our lives, which mere weeks before had been so simple and normal, were now full of hardships.
The surgery was extremely complex, requiring a 14 hour, 19 hour, and 8 hour surgery over 3 separate days. When the surgeons were finished, they had removed all of her right pelvis and half of her Sacrum, including 2 nerves that controlled the function of her leg from her knee down. In addition, they removed her fibula to use as a support and replacement of the pelvis. Then a portion of her abdominal were muscles relocated to hold organs in place. Although we thought they prepared us for what to expect, the surgery was far more difficult than either of us could have imagined and the healing process even more so. She spent 5 grueling weeks at Mayo following that surgery.
Some of the real challenges began when we came home. When we were in the hospital, nurses cared for her every need. Once home, those responsibilities would now fall on me. I feel helpless watching her need a wheelchair or walker to get around. She needs assistance getting to the bathroom, showering, and even shaving her legs. She takes multiple injections and nearly 40 pills a day. But the hardest thing to watch is her inability to really be a mother to her son. I feel such weight every time I wrestle with Faron, and such guilt when he and I break into a dance party. While we’re both very grateful she is home, it's in moments like these when I realize what we miss most. While its been very difficult to take on the responsibility of two parents, the hardest part for me is that I am unable to share some of Catie’s burden. I am unable to trade places with her to give her a break, ease any pain, or give her a reprieve from what she’s had to carry.
So how did we land ourselves on that private plane ride to Mayo? Catie was home for several weeks when she started to develop a fever. The following night she started having troubles breathing. Another trip to the emergency room and the CT scans revealed she had a 13 cm abscess along with blood clots in both lungs and one in her leg. Off we were in the ambulance to our private jet waiting to take us to Mayo.
After two additional surgeries the doctors felt they had the infection under control. Catie was allowed to come home from the Mayo 10 days later. She is required to be attached to an IV antibiotic 24/7 as well as a wound vac for several months. Currently we’re about a month removed from the Mayo visit and trying to adjust to life once again. We’re waiting for the infection and wound to heal enough to remove the IV and wound vac. We’ll then resume the remaining four months of inpatient chemotherapy.
We’ve had so many family members, friends, and even complete strangers do so many incredible things for us on this journey. We’ll be forever indebted. I’m getting emotional right now just thinking about it. Catie and I have been asked by several people about doing benefits or having a Go Fund Me, and have always dismissed it. I think at the end of the day it comes down to pride. It’s really difficult to put yourself in a completely vulnerable position and ask people for help when we are aware of the needs of so many others around us. I’m the stereotypical guy who wants to be able to handle everything and take care of his family. But I have realized, in a sort of sad way, that allowing ego and pride to get in the way is doing the opposite of helping my family.
We recently had some good friends over for dinner. They explained they wanted to provide us with a benefit for Catie. I fought back tears as I tried to fully comprehend what they were offering us. You see, what makes this story so amazing is that they are in an impossibly difficult battle with cancer themselves. In my mind I just kept thinking, how could these people who are dealing with so much do this for us, while expecting nothing in return? Honestly, we again would’ve probably turned down doing a benefit if anyone else had asked. These are the most incredible people who have dealt with, and are dealing with, some of the hardest diagnosis’ you can receive. Ryan’s words echoed in my head removing any excuses I could make for not doing it. He said, “You think they’re giving you a gift, but really you’re giving them the gift”. He explained that they had been blessed with their own benefit and wanted to pay it forward to us. I hope that someday we’re in a position to change people’s lives the way they are giving us the opportunity to change ours.
We’re both surprisingly calm, not allowing negative thoughts into our minds. The last couple of weeks have been filled with hard feelings of being sick of the grind. You’d think we’d have learned our lesson from this, but we’re flawed human beings. Last night we briefly spoke and expressed that the issues we were having didn’t matter. We just wanted to be with our 3-year-old son Faron. He has been the light in this and the only thing giving us any sense of happiness lately. It was so hard saying goodbye to him last night. Catie’s goodbye consisted of her singing him “Jesus loves me” while he nestled into her arms. I video taped it realizing it was such a beautiful moment. Faron was sleeping when I said goodbye. I loaded him into the car seat and whispered, 'I love you so much.' Even though he was sleeping, in his tired voice he mumbled back, 'I love you so much.'
Catie doesn’t deserve this. How could anyone? She’s been completely steadfast in her faith. Yet, once again we’re both left questioning why? Why something else? Why more pain? Are we truly on a journey of enlightenment that He’s sending us on? What haven’t we learned yet? What valuable lesson is needed to be understood? We search for the answers to these questions on a daily basis. I think the answers lie inside of us. We continually complicate our lives, injecting our daily routines with so much stress that we blind ourselves to what’s right in front of us. Catie and Faron are right in front of me. It's never been more evident to me that they are all that matters. I love both of them so very much. It’s in these raw situations, stripped of all the noise, that you finally feel and experience love.
I love Catie more than I ever have. She is the absolute bravest person I've ever met. I've never seen anything scare her...well, except bees. I look at her and can't comprehend how she continually pushes forward. But then I realize why she's able to...it's always been her faith.
Last night the three of us were sitting in bed at the hospital, knowing that Mayo awaited us in the morning. My arm was around Catie while Faron laid on our laps. We were watching a slideshow of Faron’s first year. There was a picture of Catie and Faron walking in the water in the Bahamas. It was the first time Faron’s feet had touched the ocean. Faron looked up at Catie as we held him and said, “Mommy, you don’t have any more owies.” My heart sank in my chest. This little boy with a heart larger than life has only known this broken version of his mommy. The version 1.1. All Catie has ever wanted throughout this whole thing was to be a mommy at 100%. She didn’t need to be healed for any selfish reasons. She just wants to be a mom in the simplest version. To be able to carry her son is now her heart's desire. People ask us what will make us feel better and, honestly, the only thing that makes us truly feel better is when that little boy's arms are wrapped around us.
So here we are on our way to Mayo again. So many emotions fill my head about that place. Once again we are headed there for one reason. The same reason everyone goes to Mayo. Hope. Hope to have a normal life. The very thing we all take for granted every day is the one and only thing Catie and I want as we bounce along in this plane.
But this anniversary plane ride is the middle of our story. How did we get here?
In November of 2017, Catie was diagnosed with Osteosarcoma on her right pelvis. The tumor was approximately the size of an 8cm ball. After consultations with doctors at Aurora, Froedtert, and Mayo Clinic, a panel of experts determined the best course of action would be 4 months of chemotherapy followed by a major surgery at the Mayo Clinic in Rochester, MN. It’s such a complex and difficult surgery that only 2 doctors in the United States perform it. Once healed enough to resume, she would then complete another 4 months of inpatient chemotherapy.
The first rounds of chemotherapy were extremely difficult,. Because of complications from the chemotherapy, Catie lived in the hospital a large portion of those four months. Our lives, which mere weeks before had been so simple and normal, were now full of hardships.
The surgery was extremely complex, requiring a 14 hour, 19 hour, and 8 hour surgery over 3 separate days. When the surgeons were finished, they had removed all of her right pelvis and half of her Sacrum, including 2 nerves that controlled the function of her leg from her knee down. In addition, they removed her fibula to use as a support and replacement of the pelvis. Then a portion of her abdominal were muscles relocated to hold organs in place. Although we thought they prepared us for what to expect, the surgery was far more difficult than either of us could have imagined and the healing process even more so. She spent 5 grueling weeks at Mayo following that surgery.
Some of the real challenges began when we came home. When we were in the hospital, nurses cared for her every need. Once home, those responsibilities would now fall on me. I feel helpless watching her need a wheelchair or walker to get around. She needs assistance getting to the bathroom, showering, and even shaving her legs. She takes multiple injections and nearly 40 pills a day. But the hardest thing to watch is her inability to really be a mother to her son. I feel such weight every time I wrestle with Faron, and such guilt when he and I break into a dance party. While we’re both very grateful she is home, it's in moments like these when I realize what we miss most. While its been very difficult to take on the responsibility of two parents, the hardest part for me is that I am unable to share some of Catie’s burden. I am unable to trade places with her to give her a break, ease any pain, or give her a reprieve from what she’s had to carry.
So how did we land ourselves on that private plane ride to Mayo? Catie was home for several weeks when she started to develop a fever. The following night she started having troubles breathing. Another trip to the emergency room and the CT scans revealed she had a 13 cm abscess along with blood clots in both lungs and one in her leg. Off we were in the ambulance to our private jet waiting to take us to Mayo.
After two additional surgeries the doctors felt they had the infection under control. Catie was allowed to come home from the Mayo 10 days later. She is required to be attached to an IV antibiotic 24/7 as well as a wound vac for several months. Currently we’re about a month removed from the Mayo visit and trying to adjust to life once again. We’re waiting for the infection and wound to heal enough to remove the IV and wound vac. We’ll then resume the remaining four months of inpatient chemotherapy.
We’ve had so many family members, friends, and even complete strangers do so many incredible things for us on this journey. We’ll be forever indebted. I’m getting emotional right now just thinking about it. Catie and I have been asked by several people about doing benefits or having a Go Fund Me, and have always dismissed it. I think at the end of the day it comes down to pride. It’s really difficult to put yourself in a completely vulnerable position and ask people for help when we are aware of the needs of so many others around us. I’m the stereotypical guy who wants to be able to handle everything and take care of his family. But I have realized, in a sort of sad way, that allowing ego and pride to get in the way is doing the opposite of helping my family.
We recently had some good friends over for dinner. They explained they wanted to provide us with a benefit for Catie. I fought back tears as I tried to fully comprehend what they were offering us. You see, what makes this story so amazing is that they are in an impossibly difficult battle with cancer themselves. In my mind I just kept thinking, how could these people who are dealing with so much do this for us, while expecting nothing in return? Honestly, we again would’ve probably turned down doing a benefit if anyone else had asked. These are the most incredible people who have dealt with, and are dealing with, some of the hardest diagnosis’ you can receive. Ryan’s words echoed in my head removing any excuses I could make for not doing it. He said, “You think they’re giving you a gift, but really you’re giving them the gift”. He explained that they had been blessed with their own benefit and wanted to pay it forward to us. I hope that someday we’re in a position to change people’s lives the way they are giving us the opportunity to change ours.
Organizer
Catie LeSage
Organizer
Green Bay, WI