Last night, I was reflecting on the start of Chase’s life. Perhaps some of you have seen this before, but this (above) is the first photo I have of Chase and with Chase. This picture never stops being amazing to me because he came so fast and was placed on my chest so fast with such a deep scream that I actually watched life flow into him, turning him pink.
Can you see it?
Can you see who he is today in this tiny scrap of human in my arms?
Another reason I never stop being amazed at this picture is because I had absolutely no idea what lay ahead of us and how many miracles lay in store for this sweet, unexpected life. I had no idea how much I’d cry… or laugh…
Did you know that Chase was born 12 months and 5 days after his older brother? To say he was a surprise to us would be an understatement, and yet, it underscores something I know with my whole heart… Chase was meant to be on this earth.
He followed fast on brother’s heals.
He came fast and screaming into the world.
He hasn’t stopped fighting since.
And this is one of his personal favorite pictures because I’m in a hospital bed with nurses and gloves and masks around me…and there was an IV in my hand. And so I reflected on these picture things last night, as I wrapped presents and prepared for now – this day.
Twelve… It’s so insane to me! I remember the day the doctors told us “Don’t think too far ahead… let’s just try and get him to age three.”
Isn’t life amazing? …and so are you! Yesterday alone, the day before alone, you raised over $7,000 in Chase’s “12 For 12″ fundraiser.
Dear ones, my heart is so full. These dollars will do so much good. Think about this: somewhere this day, a woman like me is holding her baby – like Chase – in her arms for the first time, having no idea how much she’s going to need Lurie Children’s and foundations like ARFF someday. And when she wakes up one day and realizes the need… we will have already been there – doing our best – because Chase turned 12.
Life is precious.
Moment by moment.
[To donate in celebration of Chase or to share with a friend, click THE LINK – thank you!]
ANNOUNCING…. “12 FOR 12” …!! [Chase’s birthday fundraiser]
Can you believe it? By all rights and data, our precious Chase should have never seen a 3rd year, let alone a 12th birthday! Yet, here we are and Chase still lives and breathes joy into our family and the world around him. And on December 12th – 12/12 – he will officially be 12. A golden birthday for a golden boy. He is a miracle and we are so thankful.
This year, Chase had a very special request for his birthday fundraiser (which is running an extra day – so the whole weekend!). He wanted the money equally divided between Ann & Robert H. Lurie Children’s Hospital of Chicago and the Anthony Rizzo Family Foundation – two of his absolute favorites.
We can’t think of a more fitting plan! Lurie has brought Chase life more times than we can count, and the Rizzo Foundation has instilled so much hope – and Hope and Life go hand in hand in so many precious ways.
So after much discussion with our Lurie and Rizzo families, THIS PAGE was put together. All the funds will rest there, so we can see a grand total, and then when all is said and done, the Rizzo Family will write a check for half of the total, on Chase’s behalf, to Lurie Children’s – because of YOU, dear ones!
Would you consider making a donation? You can give $12 (or a multiple of 12…or more!) in honor of Chase’s 12 years. Every dollar counts – and it feels like it counts double this year – as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – both in the hospital with Lurie and around the country with ARFF.
With your help, we can contribute to research, resources and encouragement for so many children like Chase.
On behalf of the fighters and families supported by Lurie Children’s Hospital and the Anthony Rizzo Family Foundation…
THANK YOU.
**PLEASE feel FREE to share the fundraiser link far and wide!!**
Up until 5:30 on November 2nd, I could have told you Chase’s appointments and the general expectations through the end of this 2021 year. Everything was laid out…scheduled… neat, even. (…as much as we ever get with Chase)
But on November 2nd at 5:30, right as I was in the kitchen making dinner, I got a call from the oncology team, the result of which was that Chase needs more blood work and an MRI of his liver and kidneys.
Dear ones, it’s a long and complicated explanation full of damages and inexplicable issues, and I’m sure everything will unfold at some point, but suffice to say that there is a chance that his liver is struggling through transfusion-related damage. And while they’re looking at his liver in the scan, they want to look at his kidneys too, because there is a noticeable growth there.
It’s more than possible that this is just a precautionary measure, and the growth is benign, but the news definitely surprised us. And honestly, it’s hard to hear that anything is growing in or on Chase – ever.
Since that phone call, our minds have gone a hundred places and our hearts beat a rhythm of post trauma. And if I’m being honest, I’ll probably continue to vacillate between “don’t be silly, it’s nothing!” and “they said the spot in his thyroid was nothing too” until the tests are done and read.
And that, oh that… that done-ness is a ways ahead of us yet. For reasons that only God himself knows, the earliest scan date is December 21st. So we will move through the holidays, through Chase’s birthday, through these next weeks in a season of more-than-usual waiting.
How we long to not just survive the wait, but thrive in the wait – to truly wait well.
The Saturday morning before I received the call from his team, I took Chase for early blood work and it was freezing, rainy, and dark. When I voiced worry and weather-complaining words, Chase said this, and it feels timely:
“Mom, don’t worry. Jesus has lighted our way in the dark. He will do it again. It will be okay.”
And really…there’s no better reminder: He is light in the darkness and peace in the wait. It is well with our souls and our wait.
So we’ll sit with this a while longer…
Moment by moment.
While my plan is to keep a chipper attitude and show God that I am a good student so he will bring my waiting to a close, God wants something even better for me. Rather than end my waiting, he wants to bless my waiting.”
Thank you so much for your patience and faithful prayers for Chase and our family over this summer and fall. The Chase Away Cancer site was hacked at some point over this period of quiet and with life being busy and my IT support being awesome and busy (it’s Bob… Bob is my awesome IT support) the weeks passed. But now, the site is finally back up and running and we are still here.
Stay tuned for an update on Chase –
MbM.
Ellie
Chase with Olympic silver medalist and cancer survivor Kevin McDowell
Oh, dear ones, you know Chase by now – he likes to keep it interesting. And wow, did he ever keep it interesting this weekend. Here’s a small view from the ChaseAwayCancer Facebook page. (which was as far as I could get until tonight…)
Saturday, April 24, 8:18AM –
This boy… he likes to keep it interesting for sure. Bob and I were wakened at 6:15 by a panicked sibling and the shout of a seizure. Logically, we know it can’t be cancer growth, but there’s little of logic in those moments – especially when the seizure didn’t leave him like it should. It was the longest seizure I’ve seen him have, and he didn’t truly come back to us until about 30 minutes later, laying buckled into a Stryker in the ambulance. Can you imagine waking from a sound sleep to find yourself there…an oxygen cannula being placed in your nose? We are in the ER and he’s finally coming back to himself. (Read also: sassy)No idea what caused this or what comes next…Moment by moment.
Saturday, April 24, 10:57AM –
Chase is coming home. He’s still skipping beats – struggling with his words and memory – but he’s stable right now. They’re putting him on another protection medication for the weekend (in addition to his regular medication). We’ve been told it will wipe him out, but Lord willing, it will keep his brain from seizing. And that action feels so needed right now. I can hardly describe what it’s like to watch a living, breathing person whose eyes are open, but who, in no way, is actually present. Whatever this was actually held on to him for so long and with such intensity that he has burst blood vessels in his right eye.Our local hospital and Lurie have been talking and we will follow up with his downtown teams on Monday and plan next steps. The big question is why.And how do we prevent it happening again?As the ER doctor said almost laughingly… “I suspect there are no easy answers”. Moment by moment. [picture: He wanted you to see his IV]
Sunday, April 25, 9:24PM –
Thank you for all the love and prayers, dear ones. Tomorrow will be telling as we will be talking to the teams: I’m hoping that by the end of Monday, there will be some clarity as to what happens next. As far as we could see, Chase had no seizures today and the new medicine they gave him is making him sleepy and rage-y by turns. So, as you can imagine, we are all really thankful that the prescription is both helpful AND short term. Chase was afraid to fall asleep last night and Karsten (9) said he watched him all night long in the room they share. Aidan has needed extra quiet time and isn’t ready to talk yet and Darcy came to me in tears telling me she can’t stop hearing him screaming for her. You see, when Chase sensed his seizure yesterday morning, Karsten saw it first, and Chase, knowing he would never make it to the lower level where Bob and my room is located, screamed for Darcy even as he struggled to keep his balance. It was the siblings who were on the scene first, they waited for emergency responders outside the house, packed a bag for me as I hopped onto the ambulance, and a dozen other little things they’re only processing now. I’m so proud of their courage in the face of these hard things. And it is taking words and tears and time, but we will keep the pieces of broken in our hands – together – with the heart prayer that some day all of it will be beautiful. Moment by moment. [picture credit: Darcy… the sister, not the stuffed]
Monday, April 26, 7:15PM –
After several long phone calls, there is a next step… At this point, the neurology team is certain that Chase’s seizures are not related to the micro bleeds or cavernous malformations, however, they are definitely concerned about the strength and duration of this weekend’s episode. So Chase needs to be admitted to the hospital for a couple days of EEG monitoring. Then, depending on the EEG results, he will most likely need further follow up and more medication. His extra rescue drug ends tonight and the doctors said to expect his recovery to continue over the next several days. Guys, even his muscles are sore from convulsing and remaining rigid for so long! It’s absolutely crazy. Today, we attempted his school work today and he tried so hard, but it’s obvious he’s still very much recovering from a trauma. So incredibly thankful for virtual and at-home learning in these strange days when we don’t know exactly what we’re fighting. When Chase has had an active cancer, it is a nightmare, but it’s also a clear enemy. This, where there’s no known adversary but every part of him struggles, this makes me crazy. I feel my mama heart beating hard, wanting control… anything to make it right for him… to figure it out for him. I have trouble relinquishing control when I know the boundaries. This? Honestly, this undoes me.And in the meantime, we watch… all of us. All the time. The closest thing I can equate these days to is the season when we had crawling infants and toddlers in the house – you never turn your back, watching for every sharp edge, hard surface, electrical outlet – always on high alert, watching out for what they don’t know to watch themselves. And he’s too often quiet with glassy eyes.It all feels broken. I got on the phone and cry across the line: CAN YOU FIX IT? In the final conversation of the day, the neurology team had a heart-breaking and yet needed reminder for me even as I wanted an isolated answer to my isolated question. The reminder is this: Chase’s brain knows damage deeply in all its parts, and it has known unrelenting trauma for the better part of a decade. His EEG will never be normal and his brain will never completely recover from all it has known – even if there’s no clear adversary. Dear ones…There is no normal. There is only the now. And we WILL choose joy in it. Watching and waiting… moment by moment.
