“I’m afraid, Mom. It’s going to be really loud, isn’t it?” Chase, cuddled on the couch this chill December afternoon, voices his worries…
Three quarters of a century ago today, terrible things happened half a world away and boats sank and people died and the country went to war again. December 7.
Six years ago, late in the evening, as the sounds of the Christmas music barely faded in the halls of the church, I rushed to the hospital and Aidan was born and there was joy and a new baby son. December 7.
And now, we sit on the couch under the shadow of the almost-winter clouds and there’s another shadow too. Tomorrow comes the MRI and we sit and talk because today, on December 7 – day of all sorts of remembrance – we sit and look ahead and not back because tomorrow they’ll peer inside his white head again and see if there’s been any change in six weeks.
It’s poetic and strange how life weaves the beauty and pain in every memory of each moment and they’re all mixed together in a life symphony that requires unending grace.
Chase is scared and rightfully so. Tomorrow will mark his first “awake” MRI in two years. It’ll be mercifully short, but for 5-10 minutes, he will have to face one of his worst fears. The noise. It will surround him and he knows it and he’s frightened. He can’t escape it and this child who is never still must lay perfectly quiet in his terror for 5-10 minutes or an eternity – whichever comes first – yet another time in his little cancer life when the only way out is through. And how our hearts wish to cover him from this, but we cannot. So, through it, he goes. And he says “Jesus will be with me…and Daddy too.”
As you think of Chase tonight and tomorrow, will you please pray for him? Pray for peace to surround him as he goes into this very hard place and does this very hard thing? …and then, pray for us as our challenge comes moments after the MRI when we speak and decide over the pictures with his neurosurgeon.
Moment by moment…
“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3
Last year and this year too, we take a moment to reflect…
This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving. And then Dr. Goldman entered the room (as only he can enter a room) and told us to go. And we went.
Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.
Giving thanks… Moment by moment.
“My heart is filled with thankfulness To Him who walks beside; Who floods my weaknesses with strength And causes fears to fly; Whose ev’ry promise is enough For ev’ry step I take, Sustaining me with arms of love And crowning me with grace.” [Getty, Townend]
Most of you know about Chase’s wonderful wish: his “park” in the back yard. However, our connection to Make A Wish led to one other amazing thing…a thing we didn’t even know to wish for, but a thing that can only be described as an amazing dream. Chase was invited to come to the Macy’s on State Street, to the famed Walnut Room, and help light the three-story tree to kick off the holiday season in the store and start Macy’s “Believe” campaign. We would find out less than 24 hours before this occurred that he would be alongside Ryan Seacrest and American Idol winner Lee Dewyze.
How I wish that each of you could have been there with us and experienced this day!
The great tree
Being ushered past long lines to our complimentary tables (I mean, like that isn’t a dream in and of itself!)…
Meeting staff, servers, people in marketing, store managers, corporate leaders: all so passionate about what they do in the world of Macy’s and how Macy’s affects the world…
Writing letters to Santa and mailing them with Lee Dewyze…
Right before the 12 high-fives… [credit: Ryan Blackburn, Make A Wish]
Watching Lee be super cool as Chase wanted to give him twelve high-fives one after the other… (That’s not an exaggeration. We counted.)
Having the Macy’s photographer take pictures of our family in front of the great tree and Karsten (in an elf’s hat, no less) sulking on the floor and refusing to smile…
How we roll when it comes to family pictures
Being told that Ryan Seacrest wanted to meet our family before the tree-lighting ceremony…
Being ushered into a media-filled room waiting to hear from Ryan Seacrest and watching him hunker down and focus on Chase…
[photo credit: Ryan Blackburn, Make A Wish]
Hearing Chase ask Ryan (there to launch a very classy line of menswear) if he liked his dirty, beat-up, favorite Spider-Man shoes…and hearing Ryan answer “Yes, I do!”…
Having to utter the phrase “Boys, remember that time when I told you that we don’t wrestle in front of Ryan Seacrest?”…
“Mom, I just ate Olaf’s head!”
Our amazing server, Stephanie, who put up with our crazy table full of small children and saw to our every need…
Aidan falling off his dining chair…(more than once)
The beautiful store manager, Kim, who spoke of children like Chase with tears in her eyes…
Seeing people stacked several deep, lining the balconies that look down into the Walnut Room…and the bank of cameras and media personnel and very bright lights down in front…waiting…
Chase’s view of the room
Hearing the introductions from stage: “…Ryan Seacrest, American Idol winner, Lee Dewyze, and our special celebrity… Chase Ewoldt!”…and knowing they honored his fight with their words…
Listening to Lee dedicate his song to children like Chase and then sing the words: “I can’t stand up on my own don’t need to stand alone lift me up so I can see the light…Don’t be afraid…”…
Seeing our other children being invited on stage and knowing that their own often difficult lives as the siblings of a fighter were being honored…
This IS my happy face
Hearing Bob and myself being invited as well and not accepting as our fourth child, aka: “the grumpy elf”, refused to go anywhere near a stage…
Watching Ryan call “Five… Four… Three… Two…” and hearing the crowd chant the count, getting louder and louder with him…
Watching my children, surrounded by special people and so much love, start to depress the giant novelty tree-lighting button right around “Two…”…because it was too hard to wait…
Hearing Ryan’s voice call “One!” as the room transformed and the light shot up to the ceiling, three stories above us…
The cheering of the crowd…
Aidan running over to me with the guitar pick from Lee’s performance and his voice saying “Mom! Look what I got from my new friend!”…
Watching Ryan lift Chase to stand on the button (the size of a small column) and Chase’s arms going into the air, triumphant, as he watched the lights and heard the sounds… He’d pushed the button and he knew it. And the ceiling said “Believe”.
[photo credit: Alyssa Horrall, Macy’s]
A truly precious day.
Moment by moment.
~Our family’s heartfelt thanks to Dana Kuhman Whitty, Ryan Blackburn and every beautiful soul at Make A Wish, Alyssa Horrall, Kim Groth, Martine Reardon and the entire Macy’s team who made us feel like cherished family, the beautiful Starr Royal-Burrell of Build-A-Bear who invited our children to come build bears (or dogs, or Olaf the snowman), the incomparable Ryan Seacrest and the Ryan Seacrest Foundation, and the wonderfully talented Lee Dewyze and his high-five skills.~
Note: We eagerly await (and look forward to sharing with you!) the official photographs from Macy’s at a later date…please, stay tuned.
The growths in Chase’s brain have grown…(bad)…but only minimally…(good). And the results of his spinal tap are negative for cancer cells…(good)…but there’s an anomaly of some kind at the base of his spine which needs to be watched carefully…(bad). So, the growth is bad, but the slowness of it is good, and in the meantime, it’s still not clear if this is recurrent primary tumor that’s dormant and about to grow fast, a secondary slow-growing tumor, or any tumor at all. So, to sum up, we’re essentially in the same place as we were 69 days ago…just slightly larger and stranger.
In post-op after the MRI and spinal tap
We feel weary…frustrated…guilty…
We are not frustrated at the cancer. Never at the cancer. It doesn’t hold that much power. No, we’re frustrated and a little angry because waiting for scans like this is staring down the frailty of life on this earth and we’re powerless and feel it keenly. We ask again and again “Is this the day we find out that he’s dying?” …and there are no answers. It’s not for us to know right now. And we chafe under that knowledge that we lack.
The struggle to make the most of those times in-between the scans and the questions is a very strong, hard one. And honestly, some days we win and some days we lose, and then we feel guilty because the frustration wells up on a day like today where we didn’t need to have “the talk” with our doctors and we were given a reprieve for six more weeks.
So, here we are…six more weeks… and then we do this again.
Waiting for the neurosurgeon today…playing “basketball” with a clean vomit bag and a baseball.
And by grace, we’ll fight the frustration and guilt because we believe that nothing happens to us that is not sovereignly allowed by a loving God – which means this cancer has a purpose. And the waiting has a purpose. And what we learn as we turn over our frustration and guilt and impatience for answers all have purpose. And without a doubt, I can write that there are so many other purposes to this that I can’t identify and may never know in my lifetime.
This wait feels like the delay of a journey, but in reality, it is as much a part of the journey as the answers we seek…maybe even more.
Waiting more and coloring to pass the time
When we wait like this, we have nowhere to turn but to Him and accept what He’s lovingly given.
So be it. We wait with expectation and purpose…
Moment by moment.
I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! Psalm 27:13-14
[Chase is currently scheduled to go in for another short, un-sedated MRI and meet with his neurosurgeon on Monday, December 8th – at which time any growth/change will be re-evaluated in regards to brain surgery or biopsy. Thank you so much for being on this wild waiting journey with us.]
68. The number of days since we heard “He looks good, but…“. 68 days we’ve waited and it’s here. Tomorrow, Tuesday, October 21st, is the MRI.
We’ve filled the days with closing on a house, starting new schools, moving, holidays, family visits, and so many other things. And as they always have, the thoughts of Chase’s cancer have washed over us and ebbed again and again. Some days pass with hardly a thought and others…others we cling to each other and those around us, begging prayer and help to hold us up because the weight of it seems too much. Joy and pain constantly entwine around the reminder that we have absolutely nothing that was not graciously given to us by a loving and sovereign Father.
And you know what? We’ve waited 68 days, but do you know what I absolutely forgot in the midst of a packed family weekend? It’s been one year. Thursday, October 16th marked one year since the last chemo went in and the machines went silent and we wondered if he’d ever recover and how on earth the cancer would stay away when we’d stopped fighting it. One year. So think about that tonight and tomorrow as we all sit under the MRI and the spinal tap and the imminent for better or worse news. It’s been a whole year since chemo ended. What a gift.
Chase and Aidan waiting for the ceremony to start
And you know what I wish I could share with you? This last weekend, we took our first family vacation in over two years to attend my baby sister’s wedding in Oklahoma. We were all together. The whole family. From all over the world, actually. We were together. And I was out on the dance floor with the kids and watched my baby sister, in her creamy lace gown, bend with the flowers in her hair – hands holding Chase. And him in his blue gingham and khaki and they danced as he smiled up at Aunt Carrie because she was a princess. I wish I could share that precious sight with you and that thankful rush of joy in the midst of it all. What a gift.
So here we are. The wait is about to be over. 68 days have passed in the 365 days that were an unexpected gift. And we continue as we always have and always will…begging for grace and peace…
Moment by moment.
**We’d so greatly appreciate prayer for tomorrow and Wednesday. Chase will be under general anesthesia and will go through a very detailed MRI and then be transferred to a different floor -still under anesthesia- for a spinal tap to check for the presence of cancer cells in his spinal fluid. We will come home and rest tomorrow night and then go back to the hospital on Wednesday to meet with Chase’s teams of doctors and hear results and make decisions (if necessary). We so appreciate each of you. Thank you**
“You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.” Psalm 16:11
