Before The Dawn

It’s cancer…
And the total mind-twisting news is that it’s actually a good cancer. 
(Yes, the term “good cancer” exists.) 

The diagnosis could have been so much worse, but it’s still another cancer and it’s somehow inconceivable to Bob and me that in nine short years, our sweet boy is facing a second battle. 

In this wind-knocked-out-of-us moment, there is so much to weigh us down and break us, but there is so much to be thankful for – so much blessing too. 

So, we choose thankfulness…and throw ourselves into the cancerous moment by moment again.

Please pray for our family, that we would bend and not break; that if…scratch thatwhen we fall, we will always fall toward each other and the still-good God who made us.

And finally, please pray for Chase. He’s so much older this time, he understands so much more. While this particular cancer is nowhere near as intense as his original diagnosis, I do believe this will play out so much more traumatically in his heart and mind because he knows cancer now, he understands the ramifications of this ludicrous, hateful disease. He’s grown so much in knowledge and our prayer is that he would grow in faith too. He will have so many choice moments ahead of him and our prayer is that he will always and forever choose to hope.

Cancer does not have the last word.

Ever.

…moment by moment.

“In the dark of night, before the dawn, my soul, be not afraid for the promised morning, oh how long?
Oh God of Jacob, be my strength. We will feast in the house of Zion, we will sing with our hearts restored. He has done great things, we will say together; we will feast and weep no more.” -Sandra McCracken

Keep Breathing: An Update

So, it might still be nothing, but it looks like it’s something…

As some of you are already aware, while the MRI found no cancer recurrence in Chase’s brain or spine, there was a growth detected in his thyroid. At the time, we were told that it was most likely a nodule and not something to worry about, but today, somewhere during his seven appointments (handled in total beast mode), we learned that the thyroid spot doesn’t look good. 

And while we don’t know the end of the story, we know the first steps…
On Monday, Chase will be having a needle biopsy under sedation to determine whether the growth is indeed cancer, as is feared.

And after that, regardless of the biopsy results, Chase will be having a surgery to remove his entire thyroid – because you don’t leave something that grows other things in a kid like Chase – and pray like crazy that it’s just the thyroid and nothing is in the lungs or lymph nodes.

If it isn’t cancer, we keep breathing.

And if it is, we keep breathing with some treatment.

 As always, the only thing we can do is buckle up and cling even more to hope in the moment by moment. 

“Yet I am confident that I will see the Lord’s goodness while I am here in the land of the living.” Psalm 27:14

Of Hard Moments And Incredible Gifts

Early tomorrow morning, Chase will step into a room, accept needles, give blood and drop into unconsciousness for a two hour MRI, kicking off a month of appointments and exams.

Everything is coded as routine, and so it is, for there’s no emergency, and yet it’s anything but routine for my sweet boy.

We live the strange survivor conundrum that is this: the older he gets, the more physically easy a test may become, but the greater the toll to his emotions.

He is so nervous and got to the point last night that he told me that it wasn’t just about the needle, but that he wished there had never been a seizure or cancer or any of it – he wished that he could take it all back and make it different – and then we both cried because his words are in my heart all the time.

And yet, we find incredible joy in the journey too. So as I thought through what I wanted to share with you this MRI Eve, I thought of this little video.

You guys, THIS.

Chase was given an iPad six years ago when he began treatment and it finally, irrevocably died this past Fall.
While we have never wanted for anything, there is no extra money to go buying new iPads on the regular, and I found myself crazily mourning the loss of a screen with so many appointments upcoming – not to mention, it helps Chase to stay focused on the drives to the hospital so that he doesn’t start vomiting (a neuro/mental holdover from chemo days – he sees the Chicago skyline when we go to the hospital and starts to vomit).

And then, there was a text from a friend with the words “It’s all taken care of…”

And then there was an Amazon box on the front step.

And then there was this video, in which my darling boy with all his challenges felt the right emotion in the right moment – a thing I have hardly ever seen and my gift in witnessing it was greater even than what lay in the box for Chase.

And it knocked me over.

So THIS.

On the eve of the MRI, be a part of our joy and thankfulness.

And if you picture Chase tomorrow morning, know he’ll have a beautiful, fresh screen to help. And then say a prayer for his bravery to hold in the moment by moment of this cancer life.

Everlasting gratitude and love to the Anthony Rizzo Family Foundation​ to taking a cancer diagnosis and turning it into a blessing for so many. Thank you for seeing our children for who they are and what they can do and then never resting until their quality of life is the best it can possibly be.

Sibling Speak, Pt 3 [VIDEO]

And now, this one… Only one year and five days separate their births and they were more like twins than not until cancer changed the story.

He spent his fourth birthday sitting in a hospital, recovered from his own tonsil surgery without a mom at his side (because it happened the week after Chase’s brain surgery), and used to stand by the couch and hold out his hand to the white, screaming mess of his brother, saying “It’s okay. I will hold your hand. I am here for you.” He remembers none of these things, but I do. He doesn’t know why – to this day – the sound of Chase screaming makes his own eyes well up, but I do. His soul and blood are tied to the bald boy, whether he likes it or not.

His heart breaks with the need for justice which makes him resentful sometimes and powerfully protective all the other times. He is guilt and love; rolled into one. Like Karsten and Darcy too…there are days he’s ready to end Chase, but he will gladly slay anybody else who tries. And like his father before him, he holds so much more in that head then ever comes out of his mouth.

And this one… well, when Chase goes all you-and-what-army, he does so knowing this one stands behind him every time. If you listen closely, you will hear him say Chase’s strength and the look on his face is clear – he has no idea that Chase’s strength is because of him.

The life of a cancer sibling is often a silent, supporting role. It has to be, and they do it so well. But here, in his own words, is a little of Aidan (with some off-camera Chase interaction). This is raw, unfiltered, uncut – All heart, all sibling, all laughter, all pain, all in.

Moment by moment. 

Note: The term “Bacon” is something Aidan uses to make Chase laugh when he gets angry. As you can tell from his words, Chase’s low executive functions play a big role in Aid’s relationship with him. Apparently, “Bacon” is a way to help them cope and I find I’m okay with that. 🙂 

Sibling Speak, Pt 2 [VIDEO]

In some ways, for her, it is the hardest. She was the oldest and remembers the most. She is the oldest and sees the most.

There are many days she would gladly slay when he is manic and won’t get out of her face for so many reasons – too many reasons. But there are just as many days she would gladly slay as she sits in tears, horrified that we live in a world where people look on her little brother with anything other than love and acceptance.

In many ways, she is ‘other’ just as he is – her soul too old for her body, her eyes witness to many things kids her age will never see in their whole lives. She lives with the guilt of resenting something and someone who feels extremely and more temporary than most. She worries that her loved ones will always stay alive and only stay close.

And sometimes, she crawls into bed next to me and needs to talk through how once upon a long-ago July, I yelled for her to stay in her top bunk even as her dad carried a seizing Chase out of the bedroom and the emergency lights flashed through the dark of their bedroom window as her whole world changed before she knew it – before she even ever fully woke up.

The life of a cancer sibling is often a silent, supporting role. It has to be, and they do it so well. But here, in her own words, is a little of Darcy (with some “help” from Chase). This is raw, unfiltered, uncut – All heart, all sibling, all laughter, all pain, all in.

Moment by moment…

 

This post is dedicated to the siblings of children with cancer and special needs. Please never forget that we see your patience and bravery. You are amazing and beautiful in the struggle.