Hello, and Happy 2023 to you! The last weeks have been full of family, extra snuggles, and rest …
As some of you may already know from previous posts or social media, Chase had a liver and heart MRI last Wednesday, January 18th in order to monitor an iron load in his body. It was quite a process that required hours, anesthesia, and a dedicated cardiology/anesthesia team monitoring his unconscious, intubated body.
You see, once upon a time, the children with Chase’s cancer never lived. And even now, too many still die. But there are now enough that live, and live long enough, that – for the first time – medical teams are able to track some of the long term effects of saving their lives – one of which is an iron overload from blood transfusions.
This is what sent Chase into the MRI: during the worst days of his initial brain tumor treatments, he was so sick, so weak, that many times, the only thing that kept him going were bags of full red blood. I wish you could all have seen how he would go from sunken gray to pink, how he would feel energy again, sometimes for the first time in days! And yet, all that lovely, life-giving blood came with a price: iron. Too much iron for his body to metabolize long term. And so they have watched organs like his liver for a couple years now, watching the damage unfold. But in the last few months, it became increasingly clear to Neuro-oncology and cardiology that it was time to ensure the safety of his heart.
The MRI results came in on Thursday evening as we were stuck in traffic, in the rain, on the way back from day two of hospital appointments.
First and foremost, Chase’s body is holding out well and steady against the iron load, which is amazing.
Second and more sobering, however, the MRI on Wednesday caught something about the left ventricle in Chase’s heart. I won’t say technical terms just yet because they’re big words and scary and they could mean many different things.
Suffice to say that Chase will be adding a cardiology team to his ever amazing, every growing roster.
It’s hard to say at this point whether this is a gentle precaution or a serious issue. But, one week to the day after he was in the MRI machine, he will be undergoing more heart tests and meeting his new cardiologist.
All of this feels a little difficult, very broken, and just plain crazy to think about. He started with brain cancer and now we’re looking at his heart? And yet… this is the reality, this is the chapter, this is where we are today. So, a reminder from our hurting hearts to yours:
God is putting together a story we can’t even fathom and it will be good.
Moment by moment.
The read is hard, but i am in the middle of your book, so I know you have had so many hard times. Prayers for the lad and his adoring family