Bob – Page 2 – CHASE AWAY CANCER

Of Ending The Year With Our Foreheads On…

The year 2014 has less than a dozen hours left in it. This year has seen us through many, many things and all along the way we’ve prayed for the strength to choose joy. To that end -the joy part, or in this case, the hysterical laugh-until-you-cry part- I’ve compiled a series of actual status updates from my personal Facebook page; all of which were posted in 2014. I chronicle these things (and have done so for some years) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears — so, as much as possible, we choose to laugh. Many of the scenarios include personal hashtags: from the most common – #lifewithboys, to the most funny [playing off of our secret parenting fear that our children won’t get college scholarships] #notscholarshipmaterial, to a mini-series from our first family vacation for a wedding less than 48 hours before the October MRI – #turningupinTulsa. We’ve asked you to walk many hard things with us, so, for a brief moment, as we close 2014, enjoy our “normal“…

Note: due to the household including the addition of three boys in approximately three years, an abnormally large amount of the quotes have to do with bodily functions or bathrooms. Consider yourself warned.

1. “Don’t walk on the couch with a box over your head, Karsten.” I just said this.

2. My child just pledged allegiance ending in “...with liberty and crustless for all!” We might be in trouble. #‎nationalismfail

3. There wasn’t enough snow for snowmen, so the kids made snow heads. Can’t decide if the yard looks like Easter Island or a horror film.

4. Someday I will understand the mysteries of the universe and be able to explain why there is a football in the shower. Today isn’t that day.

5. “Well I didn’t throw the toy at him…Uh, I dropped it and his head was just in the way!” #lifewithboys

6. “Look, I don’t care if it IS the Death Star. You need to stop messing around and eat your orange.”

7. “Uh, Mom? Uh, today…today, I’m going to uh, not spill my water three times at the table.” #‎aidangoals

8. “Mom, I’m keeping this family picture so that when you die, I’ll remember you because you’re old and you’re probably going to die soon.”

9. “I just came down from Kookie’s room to tell you I peed really, really big on the floor.” The official moment you regret telling a child to come here if they want to talk to you.

10. “Now we are engaged TO a great civil war…”: Aidan’s rendition of Gettysburg in which history lives, but prepositions take a hit.

11. “Well, uh, Mom, I didn’t throw a Duplo at his head. I threw the Duplo into the Duplo box and his head was in there because he was messing around.”

12. “Mom, I didn’t trip him. I was just standing there with my leg out and he, uh…fell over it.”

13. “Graham crackers are for eating…not picking your nose!” I need a raise.

14. This is what Aidan does on his day off school. Because when you jump off the toilet lid, you go big or go home…

15. Bob: “Karsten, you need a shirt.“, Karsten: “Can I eat it?”

16. As Karsten watches the Olympics, he yells “Come on, Bears!”…because that’s what you yell at a TV during a sporting event, right?

17. Darcy: “Mom, Karsten’s being a disastrophe.” Grammar takes a backseat to conflict resolution.

18. Early morning questions: “Hey Mooooom?! When I’m 60 or 29, can I pleeease watch ‘The Battle of Helm’s Deep’?” #‎lifewithaidan

19. Mom Log, 7:09am: Boy enters with teeth marks in forehead and another boy close behind, screaming “It was an ‘askident’!” This should be good.

20. “Yes, he shouldn’t have licked your books, but you should never sit in somebody’s face!” This is how “reading time” goes down. Real talk.

21. “I’m sorry, Aidan, but ‘Hey, look! There’s a giant hamburger falling from the sky!’ is not a viable conclusion to your class presentation on the history of Legos.”

22. Chase and Karsten are arguing about whether “Alligator” starts with “B” or “C“. This should go well. And by “this“, I mean the next twenty years.

23. “If you ever get the kitchen stool and climb onto the counter and drop the watermelon to the ground again…” Well, that was a first.

24. “Mom! I learned how to sort all the laundry and now I know from everything into which thing it should be sorted into.” Next lesson? Grammar.

25. “Mom, if you let me have a cell phone when I’m in college, I’ll totally text you, but first, you’ll have to tell me how to spell ‘good’ so that I can tell you that I am good.” #‎lifewithaidan #‎notscholarahipmaterial

26. “Bapa, you never played hockey, but Grammie can still put you in the penalty box, right?” #‎lifewithaidan

27. And then the training sesh ended with the lesson: “…and that’s why you never run with an anesthesia mask over your face.”

28. Me: Do you know who the president was during World War 2?, Aidan: Abraham Lincoln?, Darcy: Who is the guy with the horse in the picture in the hallway? (George Washington), Me: I’ll give you a *major* hint…it was a Roosevelt. Which Roosevelt?, Aidan: “Oh, oh!! It was John! John Roosevelt!!” #‎historyfail #‎notscholarshipmaterial

29. Somebody found the medical supply cabinet… #‎trouble

30. “Well, Mom, *this* is why you had a daughter…because I’m always right.”

31. “Kookie, you be Dark Vader and I’ll be Fran Cello, okay?” May the force (and the knowledge of actual Star Wars characters) be with you, my boys.

32. This morning, Aidan informed me that he could sneeze in Spanish. So glad we can check that off the list of needed life skills…

33. That time Aidan walked into a dining room chair and split his eyelid open…again.

34. That moment you’ve been in hold forever with the US Postal Service and they finally ask you to say a command and all the phone computer picks up in the silence is the sound of the 2 year old standing next to you saying: “I have poop, Mom.”

35. Darcy is reviewing family members’ names with Chase: “Uncle Dave , Aunt Meg , Captain America…” Say what??

36. “But you NEVER said I COULDN’T throw a chair!” Helloooooo, Monday…

37. Family pictures at the horse farm…, Grandma: “Aidan, did you tell your mom about your experience in the barn?”, Aidan: “I touched a horse!”, Grandma: “…and what else did you touch?”, Aidan [hanging his head]: “Oh yeah… I toucheded the electric fence too.” #lifewithboys

38. “Do not drop your dinner plate on the floor for the sole purpose of doing an air guitar with your leg!” — parenting with Bob Ewoldt

39. “Um…Mom? How old will I be when I’m 25?” -Aidan #‎notscholarshipmaterial

40. “Hey, Mom? When Auntie Meg has her baby, can I burp ‘Rock-a-bye Baby’ to it? I promise to burp in English!” -Aidan

41. Let me be clear about something…just because I never specifically said “Hey, don’t take the cap off the milk carton, put your mouth around it, and blow into the opening.” does NOT mean it’s an acceptable breakfast table activity. #‎lifewithboys

42. That oddly poetic moment when the coffee you’re about to make becomes that much more necessary to your day…

43. “Aidan, tonight is your first night in Sparks, and you should be happy about that, and I know that you’re a lot shorter than most of the other kids, but you should try to have fun, and it’s okay, and you’ll grow up some day.” Older sister pep talks are the best.

44. I just walked into a flooded bathroom and two guilty little boys who informed me that it had happened because one was “President Business” and the other was “The Piece of Resistance”. Everything is awesome. So awesome.

45. One of my children really knows the meaning of the phrase “Go big or go home”. In other, totally unrelated news, anybody have a failsafe recipe for getting black Sharpie permanent marker out of anything and everything…hypothetically speaking??

46. As we discussed today’s [Columbus Day] historical significance…, Aidan: “Mom what language do they speak in Spain?”, Me: “Spanish. Why?”, Aidan: “No, I’m pretty sure that’s not right. There’s a Spain language.”, Me: “Yes, it’s called Spanish.”, Aidan: “No, it’s a [emphasis] Spain language…” #notscholarshipmaterial

47. “Mom! Come quick! The boys put toys in the toilet and Chase is telling Kookie to flush them!!” Thanks for the sucker punch, Thursday. #‎lifewithboys

48. 6:49AM – Chase gets mad at Aunt Carrie for possibly not sharing her wedding cake with him…in two days. Aidan asks when we are going to cross the Mississippi Ocean. #turningupinTulsa

49. 12:20PM – stopped for lunch in a food joint crowded with service people in uniform and while Karsten pointed and called them “Heroes” and we had a patriotic moment, Chase took a swig of the pepper shaker. #‎turningupinTulsa

50. 1:39PM – pulled out the brand new, educationally promising coloring books detailing things like “Explorers of North America”. Gave myself a pat on the back for thoughtful parenting. Listened to weeping and gnashing of teeth because Magellan isn’t Spider-Man. #turningupinTulsa

51. 3:47PM – left Mo for “The Sooner State” and discovered pieces of blue crayon all around Karsten’s chair. I was informed it had been eaten because it was blue. Having been on the road for 12 hours, I deemed this an acceptable explanation. #‎turningupinTulsa

52. 8:00PM – Aidan starts doing handstands off the hotel wall. Discussion of appropriate hotel behavior ensues, the finer points of which may include parents lack of knowledge on the nearest ER. #‎turningupinTulsa

53. 6:42AM – After she let us know she woke up early to “relax on vacation”; we had a lengthy discussion with Darcy on “the wedding party” being a group of people rather then an event. It went something like the famed “Who’s On First?” sketch. #‎turningupinTulsa

54. 9:05PM – Chase vows to grow up and marry Aunt Carrie. Aidan vows to grow up and marry Darcy. Time for the first “Why you can’t marry your sister” conversation…also the “Why you can’t marry your already-married aunt” conversation. Good talk, good talk.

55. 1:18PM – Tried the educational coloring books again. Got asked if I had a butter churn when I was little. Education is not my friend this weekend. #‎turningupinTulsa

56. Some are born great, some achieve greatness, some have greatness thrust upon them, and still others chuck the whole battle for a peanut butter sandwich. #‎lifewithboys

57. “Mom! I got super frustrated and totally freaked out and flushed my clothes down the toilet! …but then I took them out again and they’re on the bathroom floor. Is that okay?”

58. [later the same day as the clothes flushing] In this house, to have one gross, bathroom-related Facebook status per day is pretty standard. To have TWO gross bathroom-related updates in a single day is pretty amazing…even for the Ewoldt boys. Karsten, for filling the sink with water and “painting” the bathroom with the toilet brush… This one’s for you.

59. Just because I never *explicitly* said “Hey, don’t take graham crackers and crush them with a hammer on the living room table.” doesn’t mean it wasn’t implied.

60. Bob: “So children, what did you learn in Sunday School today?“, Aidan: “Hey! Do you guys know how to do arm farts?” #lifewithboys

61. I shook the freshly delivered Amazon box [full of Legos] to give the December boys a birthday present hint today. Aidan’s guess? A box of sweaters.

62. So, apparently, when you hear “Hey Mom! Come quick! Chasey’s all tied up with tape!”, it could literally mean that Chasey is indeed all tied up with tape. In other news, the 6-year-old just had his taping privileges revoked for life.

63. “It’s okay, Mom… I only carry dishes while walking backwards with my eyes open and I’m very careful.”

64. “Mom, we’re really sorry for breaking your ironing board, but now that it isn’t flat anymore, it’s makes a really good slide. Is that okay?” #lifewithboys

65. Bob: “…and that’s the story of the gospel and our advent reading for tonight…any questions?”, Aidan: “Yes! Why don’t we do piñatas for birthdays??” #‎stayontarget

66. Grief counseling for small boys in traumatic circumstances: “Son, if you insist on bench-pressing a full bottle of ketchup over your head, things like this are likely to happen…”

67. Without a doubt, the best bedtime excuse I’ve heard in a long time… “But Mom, I can’t go to sleep without my forehead on.”

Goodnight and goodbye, dear old 2014…

Moment by moment.

The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance. Psalm 16:6

The Story of 2014

Once there was a family of six: a handsome father, a redhead mother, a sole princess girl, and three little wrestling and running boys.

The handsome father, he worked in two places – one a large company, the other a church. In both places, he worked with numbers… lots and lots of numbers. In the free moments, you would find him completing a half marathon, quiet with a book, or very lately, working in his new garage.

The redhead mother spent the days holding the pieces together… pieces of laundry and food and school and sometimes, yes sometimes, even silence.

The sole princess girl, just a second ago a babe in arms, was suddenly eight and tall, and already a fast runner. She was never so happy as when she was running… just like her father.

The oldest of the wrestling boys was five, nearly six, and started wearing glasses to see, which made him look wise. He began the school journey and stretched his legs at running to try and beat his sister, and if he could, would choose to be buried under a gigantic mound of Legos forever.

The middle boy, with his lightning scar and white head, also began his school journey, but with special help and the fulfillment of his special wish… to ride a bus. He continued, at every turn, to live up to his name and found his way through life in a never-stopping, never-settling way.

The baby boy, a baby no more, stood nearly as tall as the middle boy, with wide shoulders and stance that spoke of having older brothers and being ready and willing to throw the first punch. And yet, he would sit quietly with a book for the longest time and everywhere he went, he looked for horses.

This family of six were wanderers. They left their tiny space when the word “cancer” was first spoken and lived with grandparents for help as two years came and went. They decided to sell their tiny space and pray for more room close to everything held dear, and the tiny space almost sold three times and they prayed for wisdom to know… and then the tiny space, their first little home, sold and they were led to the perfect little blue house near everything held dear and so, wanderers no more, they moved and settled in the early Fall as the leaves began to change.

And in the first hours of owning the little blue house, the call came that something was growing again under the lightning scar in the white head… and the family stopped and prayed for moment-by-moment grace to find the joy in the every day as they waited six weeks and checked again, and then six more and again.

And by the time this story rests in your hands, another check will have come and gone and a course of action will stand in front of the family. But they put aside the fear and in grace, choose faith and yes, even joy for their family and their boy, and the root of it is found in this season and in another little boy, born thousands of years earlier. This stable-born boy would grow to be the Savior and Lord and, bloodied arms stretched wide, would triumph over sin forever and ever, and make a way for death to have no victory or sting, and in this boy-turned-forever-King, there was and is hope and joy, and in this the family of six, in their little blue house, rests secure. They hope and pray the same for you.

[This is the text of the Ewoldt Family Christmas letter that was mailed in early December, 2014 – Thank you for walking this year with us…moment by moment.]

Farther Along

Chase doing vitals with Mickey in clinic. Chase wears a red bracelet because of his allergies...Mickey gets to wear a blue bracelet because he has no allergies. — Chase doing vitals with Mickey in clinic. Chase wears a red bracelet because of his allergies…Mickey gets to wear a blue bracelet because he has no allergies. 🙂

It’s been six days since I last wrote, and there’s very little new to say…

Tuesday night, the doctors finished meeting, and we got the call with a single thought:

Wait.

Wait, and come down to the hospital; they said. Come down to the hospital, see with your own eyes, and talk about what happens next.

So yesterday, as the sun came up, with fearful and weak hearts, we went. It hurt a little to see the white and gray on the screen, folding in and mixing with extra fluid where once was healthy brain. The tumor site. And there, on the edges, were small gray marks that looked almost like bubbles of varying size and shape. This is it?

After hours of talking, you see, it comes down to this: if these new growths -these surprisingly small growths- are somehow, against-all-odds (and there are many) an effect of radiation, there is nothing they need to do now. Chase seems to be well and unaffected. However, if the new and tiny growths are cancer cells… there is nothing that can be done right now that will stop them from growing and taking over. There might be clinical trials and research and options that may grant us a little more time, but all that has been known to cure this vicious disease has already been used to help Chase.

With this in mind, we could open his head now. We could request a biopsy or even a full-on brain surgery to know which awful we face, but for now, with heavy yet peaceful hearts, we will not.

You see, each family feels differently and chooses differently, but for Bob and me, we made a promise way back in 2012 to do things FOR Chase and not TO him. To open his head now and try to remove would reintroduce dormant risks to him and would only serve to answer our questions…not save Chase’s life.

How desperately we want those answers! The thought of waiting eight whole weeks to know is gut-wrenching. We find ourselves constantly moving back and forth between “How foolish we’ll feel when it turns out to be nothing!”, and “How could it possibly be anything but this cancer attacking again?”. We wait under the shadow of the knowledge that eight weeks from now, we could have to face the unthinkable. And all of a sudden, I’m thinking of the swing set I wished we had, and the vacation we never took, and a hundred other little, inconsequential things I wish to cram into a time that is suddenly moving way, way too fast.

…and yet, it could be nothing. This is our hope…even though we’ve been told it’s an unlikely one.

…and yet, the truth is that we’re all terminal. Even if you never hear a doctor say it; we are. How did you think we leave this world? We’re all terminal.

Yesterday, we were encouraged to invest in Chase’s quality of life. To make the most of this time. To do the things we’ve wanted to do.

…and yet, the truth is that we should be doing those things all the time anyway, whether it’s doctors’ orders or not. Life is short and time is short and a hundred verses and songs urging this same thought are crowding into my mind as I write these words because this is the refrain of life from the creation of mankind. We’re all terminal and all we have is our today in front of us.

And so, our family waits. Our questions are not yet laid to rest, our answer are not yet known, and the next eight weeks may well be some of the most excruciating to date, but we have today and we have Chase and we will walk through whatever eight weeks and beyond brings to us…

…moment by moment.

So much more to life than we’ve been told

It’s full of beauty that will unfold

And shine like you struck gold my wayward son

That deadweight burden weighs a ton

Go down into the river and let it run and wash away all the things you’ve done

Forgiveness alright

Farther along we’ll know all about it

Farther along we’ll understand why

Cheer up my brothers, live in the sunshine

We’ll understand this, all by and by

-Josh Garrels, Farther Along

Running for Gus…

One of the things that our family loves to do is promote the work of Chase’s hospital, Lurie Children’s Hospital of Chicago. The treatment that Chase had there saved his life, and the doctors, nurses and staff of the hospital are the top in the world.

Because of this, we try to help the hospital in any way that we can. This year, that includes dusting off my running shoes, training for several weeks using the aptly-named “Couch to 5K” app, and running in the Run for Gus, an annual fun run along the shore of Lake Michigan in Chicago.

The run was started by the family of Gus Evangelides, who lost his battle with brain cancer in 1995, just three months shy of his second birthday. Today, his family, and dozens of other families from Lurie, run to help raise money to fund brain cancer research at the hospital. Over the years that the Run for Gus has been going on, it’s raised millions of dollars to fund brain cancer research at Lurie.

This run has been a tremendous opportunity for our family to give back a little to Lurie Children’s. Brain cancer is one of the leading causes of cancer deaths among children, and fatal for almost half of the kids diagnosed, but there is painfully little research being funded to help stop it.

With some exciting new developments in cancer research on the horizon (see here and here), Lurie researchers could be just a short time away from making significant discoveries toward finding life-saving treatments for kids like Chase.

I hope that some of you might be able to join us in the run on July 24 (even to cheer us on), or help me raise money for the hospital by donating toward my run. You can do either by visiting my personal page at the Run for Gus website: http://foundation.luriechildrens.org/goto/ewoldt2014

I hope you’ll join me in supporting this worthy organization!

To Channel The Fight…Again

April 11, 2014

We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.

Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.

[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]

May 2, 2014

Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!

We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…

We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.

Moment by moment.

Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)

Category: Bob

Of Ending The Year With Our Foreheads On…

The Story of 2014

Farther Along

Running for Gus…

To Channel The Fight…Again

Get all the latest news and info sent to your inbox.