Well, we made counts this week. We were admitted today to begin phase 3 of treatment. Ronan had an LP this afternoon with IT methotrexate (first time since his seizure.) Then he was hooked up and started on Blinatumomab this evening, and so begins our 28 day infusion. 

We just hit 7 hours in and so far, so good. Common side effects these first few days are high fevers and flu-type symptoms. Less common, but other potential and scary side effects can be neurological symptoms like seizures, and things that can be indicative of an overly huge inflammatory response. We watch and wait and hold our breath a bit.

This medication has been shown to decrease the risk of relapse so we really want him to get it and for things to go smoothly! They did start him on an anti-seizure
medication today to combat that potential (due to both the IT methotrexate and the blina.) They considered not giving him one because there is some risk to his kidneys from the seizure medication…so like so many things, the risks are weighed and they try to make the best decision for Ronan. It was decided to monitor his kidneys, to give the seizure medication for 2 weeks and then taper off of it. Oh how I worry about those kidneys! 

Overall a great day so far though! Ronan got up super early to have breakfast before he went NPO. It sucks not to eat all day but he does SO much better with it when he’s not on steroids. Then we came up, checked in, got admitted, waited around in our room watching movies and playing and doing a million laps around the unit. (We are well on our way to earning those Nikes!) We got to do art today and Ronan walked the halls with a little friend he’s made up here. This boy’s parents have become friendly with Bryce and I, and it’s really nice to talk to someone who really, really gets it as far as what we are all going through. We met them this summer when we were all at RMH for such a long time. I hope someday we can get these boys together outside of these places, healthy! In the meantime, it’s heart warming to see them race around the halls together.

Talking to his mama tonight, I felt so very seen. This journey is so hard and it’s hard to explain the depth of that to anyone who hasn’t been here. People care, and they want to get it but to hear those words, your child has cancer, to read all the possible side effects on the meds you don’t have a choice but to let doctors give, to know that you will never stop worrying…it’s overwhelming. 

We ended our day today with a dance party, race car driving the IV pole around the hallway. We talked to Jack on face time and the boys were silly. Ronan’s nurse entertained him with stories of jumping out of airplanes and helicopters in his past, which of course Ronan thought was really cool. 

We try to take these wins, these happy moments in the midst of stress and soak them up. Something that has been a little surprising for me since Ronan has the memory of an elephant, is how little Ronan seems to remember of our first month up here. It makes sense because he was so sick and it was all pretty traumatic. I also have some fuzziness around especially the first few days, but I hope he remembers these happier moments like from tonight when he looks back on this. I hope he remembers setting silly surprises for his nurses and cnas by putting his bugs and snakes by their equipment, and squirting them with water guns. I hope he remembers race car driving his IV pole around with his little buddy. If being in the hospital so much has to be part of his story, I hope he remembers the good stuff. 

We are hoping for continued smooth sailing. If all goes well, we will be out in a few days, with our little backpack. Send all the good vibes and thoughts and prayers please! For us and our new friends, and every other family on this unit tonight, on units just like it across the US, across the globe, and for those having their worst day ever finding out their baby has cancer, or that they are losing their baby to it 😔 Go gold for every one of them. Go give blood or platelets. 💛

*Update: Hour 8 he woke up complaining of nausea and I thought he felt a bit warm. Got nausea meds on board but too late as he threw up as they were infusing…shakes, chills, 103 temp. None of these things are unexpected for this med at this stage…hence why we are here, BUT like I said, gotta appreciate the dance parties when they’re happening because a few hours later? You might feel like total garbage. 😕 Let’s hope we stick to these crappy symptoms and they resolve quickly!