let me start off by saying this - his disease is IMPROVING. the chemo regimen is working!

it was a long day, and a hard one. the anesthesia really bugged him afterwards, and he just didn't feel good. he was under for about 4 hours. but he did ask to go to eat inside McDonald's, so we did that. And by the next morning, he was himself. 

we first got the MIBG results back. MIBG is the way we scan his cancer, because it lights up any disease in his body. 

• the original relapse spot (right femur) is improving!
• there was a spot in the rib that was missed last scan. it was very tiny. this spot has ALSO improved, compared to the previous scans when they realized it. 
• there was still a little uptake on the head of his pancreas. the CT showed nothing there, but we needed to wait for the MRI to confirm that.

we got the mibg results back in about two hours on Wednesday. we got the MRI results back TODAY (Friday), so it's been a long few days. so many things go through our heads, thinking that they're taking so long because there's something and they have to go to other specialists. we haven't been able to really enjoy the news of improvement because we wanted to know what that pancreatic head looked like.

our awesome south bend team hounded MRI today and told them to hurry up, so we got those results back. everything on the MRI was CLEAR.

sometimes the body uptakes the dye weird. for some reason, his pancreatic head has been lately. very very small. its something we will keep an eye on in the future, but for now is just a weird rogue uptake spot. I've seen in my support group it happens often.

the plan right now is to do chemo next week again. we have an appointment with radiation down in indy on April 29th, so that will give us a better idea of what the next couple months will look like. im going to get together with his two doctors (south bend - dr herman and indy - dr bear) and see what they think we're looking at. I'm guessing we will do 12 rounds of radiation to the two spots (rib and femur) as well as a couple more rounds of chemo. I plan to ask about adding antibody as well, because it's uncommon to not have an antibody during relapse treatment. but his previous one made him so miserable that he needed the break.

and now knowing that last scan his disease had technically spread just a bit, makes me even more relieved we pushed to switch to a different regimen because something just felt off.

the three of us have a Disney cruise coming up in the beginning of May and we can't wait! his team is making sure to time everything right to make sure he can go, and be healthy doing so. while we planned this to be an end of treatment / disease free trip, its still a celebration.

this is more exhausting than people realize. it's so difficult not knowing what the plan is, and what our lives will look like, where we will live, etc. but for at least another few months, we are doing treatment at home. and grateful for it. we love the team in indy and miss them terribly (esp the stem cell unit!) but it's been amazing being able to grow relationships with the team up here at memorial. Riley loves them, especially the receptionist who lets him control her security panel and cameras.

one last thing before I forget. we all know that rileys favorite nurse down in indy is Maya, who trained on him during his transplants. I hadn't realized Neil nominated her for a daisy. she got it, and it was her first daisy ever. she deserves it so much and is so so important to our family. we are honored to be her first daisy! she was with us through a very difficult time, learning along with us.