You guys! We’ve poured our hearts out this week and right now, I can’t even begin to articulate how much all of your encouragement and prayers have meant to us. You’ve taken the time to read our words, follow our stories, and in this busy, busy life, that’s incredibly precious. Thank you.
You’ve anticipated the absolute worst with us, so I’m super excited to invite you to sit with us this weekend and anticipate something really amazing.
For a year now, Make A Wish has been incredibly patient as we’ve cycled through idea after idea while we tried to find the one thing that best fit Chase and worked for our family. We finally decided and it’s happening this weekend!! It’s not a vacation – we opted for something 24/7 that encapsulates Chase’s energy. 🙂
Can you tell what I’m talking about yet?
On Tuesday, MRI day, a landscaping crew came to the house to prepare our poor yard. I wish you could have seen and heard what we did: the owner was out and working with the crew, saying that he didn’t care what it took…they wanted to do this special thing for Chase. Bless him. This is probably the most amazing thing about working with Make A Wish: meeting the people who give and dedicate and pour their hearts out for kids like Chase. Bless them.
And sometime today or tomorrow…this will happen!
Here’s the thing… Chase doesn’t know. I mean, he knows something is up because we found creative ways to talk to him and make sure we captured what he wanted, and a sibling let something slip, but he doesn’t really know.
Can you tell what I’m talking about yet?
So, come and anticipate this with us. It’s been a hard, long week and this weekend is going to be really special.
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
We’re a little under three weeks away from the next MRI.
Yesterday, while at the grocery store, I was able to stop saying “Don’t lick the cart” long enough to help the kids pick two big, orange pumpkins for the front porch. In a mad effort to redirect children from pulling items off the shelves and insisting that their quality of life was in serious jeopardy if we didn’t get chocolate pudding cups, I suggested they work on naming the pumpkins. The names “Darcy”, “Aidan”, “Chase”, and “Karsten” were almost immediately suggested and disqualified as four names and two pumpkins don’t go together very well. This moment may also have included a few slight disagreement phrases and the completely not-dramatic screech of “Fine! I’m never going to play with you again as long as I live!”. On a semi-related note, it’s very hard to stomp off in high dudgeon when you’re sitting in a grocery cart.
Next came the inspired suggestion to name one of the pumpkins “Dr. Lulla” after Chase’s favorite doctor. Ever the fairness moderator, the oldest child suggested that they name the other one “Dr. Fangusaro”…but then the entire group realized that they’d have no third pumpkin to name “Dr. Goldman”, and as Dr. Goldman is the neuro-oncologist who gives them candy, they realized that they could not, in good conscience exclude him. …so “Dr. Lulla” got scrapped.
The oldest then suggested in her most existential voice that the pumpkins should be named “Dan” and “Brendsel” as he’d preached last Sunday at church. And not to be outdone, the next oldest suggested -in his most existential attempt- that maybe they should be named “The Church” and “The Earth”…or, “Bob” and “Rob”. (He couldn’t decide which seemed more existential.)
Then, the youngest looked out the window, saw a jet passing overhead and suggested they should both be named “Airplane”. The bald one, who was sitting on the other side of the van and couldn’t see the jet out of his window, insisted that there was no airplane and a minor argument on the finer points of never playing with each other ever again ensued.
At which point, feeling truly inspired, the second oldest broke into the argument: “You know…that team that plays football that we hate and they eat cheese?!” “You mean the Packers?”, I asked, as I realized that he probably doesn’t have a shot at pro ball. Ever. “Oh yeah, those are the ones!”, I was assured.
At this moment, I found myself back in the driveway of my own home and the discussion was thankfully over and the pudding cups successfully dodged, but the question of pumpkin names remains… The current favorites are “The Green Bay Packers” and “The Chicago Bears”.
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
