Adventure Travel

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• Of Papers, Chest Pain and Being Okay: a moment for the new school year
  I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase. Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.  Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure] … Continue reading “Of Papers, Chest Pain and Being Okay: a moment for the new school year”
• Of Hot Chocolate, Thankfulness, and Impossible Things
  It was quiet in the sunlit lobby. Quiet enough to possibly nod off after the long night of sleep testing. Instead, I reach for the large black coffee close to hand, trying not to think about the painful cannula stuck in Chase’s nose and taped to his face all night. Too many pieces surrounded him to really sleep, I think. We made it through the overnight. So, four more appointments and eleven more hours and then we could finally go home. Sometimes when the hospital isn’t around the corner from your house, it’s easier to “stack” appointments and just stay … Continue reading “Of Hot Chocolate, Thankfulness, and Impossible Things”
• Of Uno, Electrodes, and Precious Trial Moments
  This is Connor, dear ones.  A couple weeks ago, Connor, a family friend, found himself scary and sudden in the neuro world one morning.  One moment, there was going to be cereal for breakfast, and the next, he was on the ground, his worried parents at his side. Then came an ambulance; hospital bound. And then came the deep challenge of working through what it meant to re-learn and remember after seizures knocked his body and short term memory sideways day after day.  Connor ended up being transferred to Lurie and Chase and I were actually in the room at … Continue reading “Of Uno, Electrodes, and Precious Trial Moments”
• Of Rough Seasons, Red Flags, and Defiant Thankfulness
  It’s been twenty-four days since I got on the ambulance with Chase. At the time Chase was first unresponsive and then tested in the ER, the radiology report indicated there might have been signs of micro-hemorrhage in one of the growths (cavernous malformations; cavernomas) in his brain. However, upon further review with all the teams downtown – who have access to almost fourteen years of scans and pictures – there is not enough of a change to positively declare a micro-hemorrhage. It turns out that the brain just looks a little rough around the edges when it’s been cut open … Continue reading “Of Rough Seasons, Red Flags, and Defiant Thankfulness”
• Of Thursdays
  “He came in complaining that he was tired and dizzy and he was asleep for a while, but now we’re having trouble waking him up. Do you have any tips or tricks? The sternum rub didn’t work…”  A moment later, I hit the end button on my phone and I grab my bag and keys and head out the door for the high school. Am I wearing a bra? Do I have deodorant on? Maybe the sound of my voice will help… maybe the length of time will help…by the time I get there maybe he’ll be awake. I pray … Continue reading “Of Thursdays”
• A Better Story: Of Surrender Without Defeat
  LATE FALL The phone call came late in the night. On one end of the line, our anniversary trip (not far, but far enough) and on the other end, the oldest sister holding down the house and the boys and all the pieces. It was just for the night. But what a night… “Mom, he’s having chest pain. What do I do?” Instant guilt. We never should have left. I take a deep breath and recall the words of the emergency room doctors and start to slowly explain what they told me about reproducible chest pain. “If it hurts when … Continue reading “A Better Story: Of Surrender Without Defeat”
• Of Heart Monitors and Reminders
  It’s been 34 days since I wrote these next words, and as I tape a new heart monitor to Chase’s chest, I find that I very much need the reminder. Do you? “There are ever so many life things that don’t and won’t leave us completely until we see God’s face. It isn’t abandonment. It isn’t carelessness or forgetfulness or because he doesn’t love us. It’s because he’s doing something in our pain that we can’t see yet. I believe this with my whole heart. And real talk… it still hurts, doesn’t it? But in compassion, he sits with us … Continue reading “Of Heart Monitors and Reminders”
• Of Tuning Forks, Sunlight, and Compassion
  Against the backdrop of the bright yellow walls, the doctor hit the metal tuning fork against her palm, holding it up with the precision of a concert pianist. Gently, she touched it to the area where his bone is visible under the skin at the wrist. “How about here?”, she watched his face as she asked the question again. “Nope,” he answered confidently, despite the way everyone in the room stared at him rather incredulously. “Chase, are you messing around? Now is the time to be serious.” I couldn’t help wanting to slip into a place that controlled the outcomes. … Continue reading “Of Tuning Forks, Sunlight, and Compassion”
• Of Joy Things and Thankfulness
  Dear ones, THANK YOU. On behalf of Chase and our whole family, thank you for your generous donations to Chase’s 16th birthday fundraiser. He has been monitoring the donations himself since Friday morning and will often come running or calling out across the house “Mom! Did you see? Look at the names! Look at the number! Can you believe it?!” I even got calls from study hall during school on Friday. His heart is so full and that’s because of you. Just now in the earliest hours of a new week, with over 200 donations, we crossed the 14 mark … Continue reading “Of Joy Things and Thankfulness”
• Of Good Things and Sixteen Years
  The day is finally here. December 12, 2025. I remember the first December 12th of Chase’s life in 2009…the way they laid his tiny body on my chest as the air filled his lungs for the first time. …the way I already knew he was strong. 16 years on this earth… Isn’t that an incredible miracle?! His birthday request [which I posted in detail about yesterday and you can read it here] is that we raise funds to be equally divided between the Anthony Rizzo Family Foundation and Lurie Children’s Hospital (specifically: the Pediatric Brain Tumor Program) .  We, as his family, can’t think … Continue reading “Of Good Things and Sixteen Years”
• Of Hope And One Step At A Time
  Dear ones, we are so pleased to announce that Chase has picked Ann & Robert H. Lurie Children’s Hospital of Chicago and the Anthony Rizzo Family Foundation as his fundraising recipients this year. Tonight, I asked Chase a little bit more about why he chose these organizations and his words were so precious that I need to quote them as I tell you a little bit more. “We give to Lurie so that kids like me don’t give up hope. Kids can survive and get their medicines.” When we were first told that Chase had a large mass on his … Continue reading “Of Hope And One Step At A Time”
• Of December Things and Miracles
  This one … he is going to be 16 at the end of this week. On this Friday, December 12th, right at about 3:30pm marks 16 years – to the minute – that this ball of struggle and miracle has walked the earth. And in Chase’s honor, at his request, we will be doing his annual birthday fundraiser! So watch this space (and/or social media) during the week for lots of content, such as information on the foundations Chase chose, beautiful new pictures from our friend Margaret (like the one above) and general Chase updates. The “$16 for 16 years” … Continue reading “Of December Things and Miracles”
• For A Season
  The reflection of the woman in the glass of the high school exterior door looked nervously back at me. Leggings and a sweatshirt, a baseball cap jammed onto messy hair, fighting to stand still, but really watching for the movement behind the glass that would signal eyes on the one for whom she worried. …for whom I worried. An hour ago the call had come from an unknown telephone number… “Mom, it’s me, Chase…Tommy let me use his phone. I’m waiting for my next class and I feel too dizzy. I am sitting against the wall and I don’t feel good.” … Continue reading “For A Season”
• THANK YOU
  Dear ones, HOW YOU BLESS US!  I just wanted to reach out on behalf of our whole family and thank you for your generous donations to Chase’s birthday fundraiser. Just now, we crossed the $10,000 mark. This is something we didn’t get to do last year – and something that feels even more miraculous in a year when inflation is being so felt by all of us.  We genuinely can’t wait to see where these donations will go within the Anthony Rizzo Family Foundation and the Pediatric Brain Tumor Program at Lurie Children’s. To know that everything you gave will … Continue reading “THANK YOU”
• Of Good and Thankful Things
  On Thursday, December 12, 2024… Chase turns 15! He loves to know the exact time of his birth (3:27PM, CST), and he’s been going around and telling everyone that right at the time that the buses leave all the grade schools, he will reach the moment he turns 15. I know this because even the teachers in the high school have mentioned it to me. Oh Chase… 🙂 15 years on this earth… Isn’t that an incredible miracle?! As always, his birthday request remains that we raise funds to be equally divided between the Anthony Rizzo Family Foundation and Lurie Children’s Hospital (specifically: the … Continue reading “Of Good and Thankful Things”
• Over and Over Again
  Dear ones,  Chase will be having another surgery. We are still waiting on the confirmation for the date and time, but yesterday’s meeting with the plastic surgery team confirmed that a stint under general anesthesia and the complete removal of the areas of concern (and a portion of skin around them – present in two very different locations on the body) would be in Chase’s best and immediate interest – “to avoid chances of recurrence”.  Of course, those last words made us want to ask a million questions because “recurrence”, in particular, sounds like a cancery kind of word. But … Continue reading “Over and Over Again”
• Of Grabbing Hands, Comfort Words, and Invented Machines…
  Dear ones, Yesterday’s routine dermatology appointment ended up being slightly less routine than what we had hoped. Chase’s skin has some trouble spots and his dermatology team felt it would be in the best interest of everyone to send him to a plastic surgery team to talk about removing and testing. We are still a mile down the road from an actual biopsy, and miles and miles away from a diagnosis (if there’s even one to be had) and the concerns for clean margins and all the other pieces that go along with this kind of a challenge.  But in … Continue reading “Of Grabbing Hands, Comfort Words, and Invented Machines…”
• Trusting The Process
  “What do you want to be when you grow up?“ The interview question came quick and benign, probably one of the most common questions to ask a child, and yet Chase, propped on a stool in front of cameras and lights, stared at Robbie with a blank look on his face. The principal stood in his blue suit in the center of the gym with all its sounds and smells, welcoming the room and I watched him over the top of the fuzzy head sitting next to me. High school. There was a table set up and stocked high in … Continue reading “Trusting The Process”
• THANK YOU
  Dear ones, from our family to you… THANK YOU. Because of you, in honor of Chase’s 14 years of life… wow, just look at these numbers! $1,789 for Cal’s Angels wishes to be granted for kids like Chase. $8,749 [$4,374 each] to be given to Anthony Rizzo Family Foundation and Lurie Children’s Hospital – specifically to help families like ours [ARFF] and to promote further pediatric oncology research and better care [Lurie]. A grand total of $10,538.00 going out into the world to say “Hey, cancer doesn’t get to win today on any level.” You all blow us away with … Continue reading “THANK YOU”
• Of Birthdays and Good Things
  On Tuesday, December 12th, Chase turns 14! Isn’t that a miracle?! This year, he (again) had a request: his birthday fundraiser be equally divided between Lurie Children’s Hospital and the Anthony Rizzo Family Foundation. But there’s also a little extra, a special 14th birthday nod to his friend Robbie Gould’s new partnership with Cal’s Angels. In honor of Chase, we will also be raising a separate $500 going to Cal’s Angels in order to help grant a wish for another child like Chase. We can’t think of a more fitting plan! Lurie has gifted Chase life more times than we … Continue reading “Of Birthdays and Good Things”
• The Letter
  Every year, in the middle of August when the school doors open wide, my dad stops extra and special to pray for my kids and he slips them a verse to hold close for the whole year ahead. This verse is always printed on colorful paper, laminated and trimmed so carefully by his own hand, and most importantly, is something he has thought and prayed through – often for months before the moment. He waits in stillness, asking the Lord what word is needed for all of his grandchildren as they head back into their classrooms for another year. And … Continue reading “The Letter”