Super Duper Cooper and his family are so inspiring. They have been battling since day 1 of Cooper’s birth.
I can’t put into words without making it sound like a cliche what this family’s been going through. I know there are many more just like them across our country. Let’s try to help them as much as we can.
Here is Coopers’s latest Facebook update from his page “I’m awesome, it’s my kidneys that suck”
As a follow up from our last post, thankfully all of Coopers tests came back as well as we could have hoped for.
His neurologist messaged me saying his brain MRI was unchanged (thank God 🙌🏻) and we can work to get him off of his seizure meds when we feel like he is in a good spot with his EBV numbers and feel like he is not in the danger zone for the lymphoma to return. We are not going to do the intense anti-rejection drug at this point, so hopefully this is soon.
I spoke with his nephrologist and the kidney biopsy showed that his rejection had improved from 1b cellular rejection to borderline rejection! Based on that they decided they no longer wanted to redose him with the very strong drug he received during transplant (thymoglobulin) as it would permanently affect his immune system. As a team they decided it would still be best to do a 3rd round of steroid infusions due to his current level of inflammation, so we did that this week.
He unfortunately looks like a little pin cushion after the past 3 days, but we enjoyed lots of Bluey and his labs look great. I will say one of his nurses brought me to tears yesterday. I had to step out to use the restroom and was gone for seriously 60 seconds. I came back and he was inconsolable. She looked at me and said “that must feel so good.” I think she could tell that I was confused since my child was screaming so she want on to say “to have someone love and depend on you that much that”…cue the waterworks! With that, enjoy some pictures of the many hours I got to spend with my boo boo bear this week.