Ronan is the kid who starts planning his next birthday the day after his birthday. He has been planning on another Cool Pool birthday since last year. We rented it out before his diagnosis in late spring. We’ve been hoping and praying the stars would align and he’d be able to have his party tomorrow. Fingers and toes crossed, if we can get through tonight, he will! 

After our seizure scare last weekend, we were sent home less than 24 hours after our admission. They believe the seizure was a side effect of the intrathecal methotrexate but not due to a true toxicity. They can prevent this side effect by giving him Leukovorin. Still, they sent us home with nasal versed as a rescue medication we can administer in case we were to need it. I slept on the floor of their room for a few nights and the last two nights I worked so Bryce let both boys sleep in our bed. We’re still a bit anxious around here but so far, so good. Poor Jack I think was the most traumatized by the whole thing ☹️ We are trying to get us all into some therapy. 

So anyway, we got home from the hospital Saturday evening. Monday morning we went up to clinic and Ronan got a different medication, intrathecal cytarabine (instead of more methotrexate.) Monday night, he spiked a fever and we had to go to the emergency room. They had to do all the things (cultures, labs, antibiotics) in case but luckily he was not neutropenic and we got to come home and keep an eye on things here. Right around 24 hours post chemo, the fever went away so they think it was a side effect of this particular chemo…apparently a fairly common one, but you still have to go through the whole process every time anyway. Knowing this, we will likely arrange to stay in Portland when he receives that one again to try and avoid the outside emergency room. 

Let’s see…Ronan also had some eye side effects this week of feeling like there was something in his eye, being light sensitive, etc that requires eye drops. It’s feeling better as of yesterday though and he got a clean bill of health from the eye doctor. 

All this aside, we have kept him in as much of a bubble as we could this week. We did go blackberry picking though! In prep for the party we didn’t go out much other than that. A lot of his little school friends are coming to his party and it will be the first time he has seen them since school let out. He is SO excited. Pictures of his fireman theme birthday to come! 

As far as what comes next with treatment…we finish up this phase called consolidation with the oral chemo he’s been taking every night. Day 28 is the 1st of September. Then he gets a little breather. We will check labs on 8/30 and 9/5. If he is good to go counts wise for starting the next phase, he will go in on 9/9 for an LP and intrathecal methotrexate. Then he will be admitted for 2-5 days for starting the immunotherapy, blinatoumomab. This is the treatment that up until very recently was only available in clinical trial. However, results from that trial were so good, it is now part of the standard protocol for most kids. It is a continuous 28 day infusion. We have to be in-patient for the first several days as that is when side effects are most common. Side effects can include allergic reactions, seizures, inflammatory responses that can be pretty scary…however, we have mostly heard very positive things overall. It will reduce his likelihood of relapse. It is definitely a little nerve wracking but we are also hopeful. Once we get to go home, we will go back weekly for dressing changes and port re-access. Talking to his oncologist yesterday, it sounds like Ronan will be put on a low dose seizure medication for this cycle due to the seizure he had and the increased risk on Blina.  

Keep our guys in your thoughts! We’d really love a mellow couple of weeks before our next admission! ♥️ I really can’t believe my baby is going to be 7 🥰 Babies so not keep. Go squeeze yours!