Chase – Page 14 – CHASE AWAY CANCER

Of Giant Trees, Giant Buttons, and Not Wrestling…

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!

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... — 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!" — “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 — 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…

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”.

10429479_10152403426645583_5538134355511758023_n — [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 Good, The Bad, And The Purpose

Chase and Daddy in pre-op - the OR was delayed and so Chase had to go without eating or drinking anything for over 4 hours. He did amazingly well. — Chase and Daddy waiting in pre-op

It’s not good. It’s not bad. It just is…

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.

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. — 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 Days

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

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

Don’t Tell Me Anything Else

“His spine looks clear and overall, his brain looks amazing, but…”

But. How that one little word changes the tone. Chase’s attending neuro-oncologist’s voice never wavered as he went on to tell us that for the first time since a January Thursday in 2013, Chase’s MRI is not clear.

There are several small growths in and around the original tumor site.

They were not there three months ago.

He emphasized that the growths are small, but they’ve grown in a fairly short time span and there appears to be a cyst-like quality to them.

Chase’s initial baseball tumor had a cyst-like quality too.

We’ve been told that there is cause for concern, but not necessarily for alarm. Something growing where nothing should grow is not a good thing, but there is a chance that these small growths may be delayed side effects from his days in the radiation center.

Early this next week, Chase’s MRI will be taken to a large gathering of all the doctors who work with brain tumors. We are so blessed to have the collective mind of neuro-oncologists, neurosurgeons, radiation-oncologists, and many others working through the possibilities of care for our son. After the tumor board convenes, we will conference with Chase’s doctors to determine a plan for Chase and to discuss various care options.

Our hearts are overwhelmed with this new knowledge. In the few short hours we’ve known it, we’ve vacillated again and again between peace that passes our understanding and a deep, sad terror with the question “How can it possibly be anything but this cancer again?”.

The knowing is a heavy thing, and yet, Chase is still Chase: jumping off the scale just to make the nurses gasp…insisting that he couldn’t be in pre-op room he was given because it had a pink wall and “Pink is for girls! Ew, gross!”…

When I got off the phone last night, I pulled him aside and told him that there was something on the MRI. I told him that there were some bumps that shouldn’t be there and that he shouldn’t be surprised if his doctors wanted to check up on him more. He looked at me, nodded his head sagely in the way that only he can, and said: “Okay. Don’t tell me anything else. May I go outside?”.

In the few short hours of this heavy knowing, his response has become very precious to me. He can’t completely understand the full picture of what could be ahead, but he doesn’t need to. That’s for us as his parents to know. He has his portion of the information and he can move on in peace for the moment because we are planning for whatever will be needed.

Just so is our necessary response to our Abba, our Father: He’s given us our portion for the day and we don’t know what will come tomorrow or next week, but we can say with certainty “Don’t tell me anything else” and move on in peace because He knows and He sees and has already planned for whatever is ahead…

…moment by moment.

“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I heat the thunders role. But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise. O, this is life! O this is joy, my God, to find Thee so: They face to see, Thy voice to hear, and all Thy love to know.” Horatius Bonar

Category: Chase

Of Giant Trees, Giant Buttons, and Not Wrestling…

The Good, The Bad, And The Purpose

68 Days

Farther Along

Don’t Tell Me Anything Else

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