Well we all breathed a big sigh of relief this weekend, and are finally allowing ourselves to feel excited about the big treatment milestone we've been afraid to acknowledge the last two weeks. We made it through Delayed Intensification! Technically, Friday was the end of this phase, but Ronan was done with all the chemos and procedures over a week ago. These two built in recovery weeks are considered part of this phase for good reason, as many kids end up in the hospital for a good portion of them. When counts drop as low as they tend to at the end of this phase, it's very common to be hospitalized for fever and neutropenia and to have to stay until counts recover, which can be a while! We had all managed to catch a second respiratory virus this last week, despite our continued isolation, but thankfully, it did not come with fevers and has been mild. It did cause Ronan to have a croupy cough for a couple of days.

On Friday, Ronan had labs to see if he was able to start the next phase of treatment. He did not make counts to start treatment as he needed an ANC of 750 for that, but he did have an ANC of 500! This moves us safely out of the "we'd be required to be admitted" numbers and means Ronan is out of the biggest danger zone for serious infections. We also managed to make it through without requiring any blood or platelet transfusions! His hemoglobin is still low (hence pale and more fatigued than normal) but not at a level that requires transfusion, and hopefully that will begin to recover soon too. Platelets are back in a normal range. Kidney numbers were also looking super happy and we are always happy about that. Ronan is still considered neutropenic but was able to start phasing back into school this week. He is so excited to be back! We will likely do half days for a bit to build up some school stamina. He has been pretty exhausted after that much. 

We had been a little stressed about the potential for an LP and sedation so soon after an illness after our experience a few weeks ago, so I'm not too sad his LP will be pushed a bit. However, the double-edged sword of that is that I worry any time there is a delay or change in treatment that it will somehow make treatment less effective. However, the doctors assure us that some of these holds are very normal and expected. I have read about many kiddos having long holds during and after Delayed Intensification, so we will try to take the week as a gift of a break for his little body to further recover. Even his hair thinning has slowed way down so it looks like he is in the small minority of kiddos to make it out of this phase with some hair still holding on! It may seem a small victory, but he is thrilled about it. It is quite fine and thin and that makes it often fuzzy and a little mad scientist like, but he absolutely did not want to shave it again. If he's happy, we're happy. 

We will likely plan to get labs again soon and start our next phase, Interim Maintenance 2 or IM2 shortly after, assuming we make counts. Interim Maintenance 2 is very similar to Interim Maintenance 1, which Ronan completed in November/December. It is escalating doses of IV methotrexate along with infusions of vincristine. This time though, he will begin with 2/3 of the dose of where he ended in that phase, so he will ultimately escalate to higher doses than he had before. He will also have two LP's instead of just one but he will be getting IT cytarabine for these LPs instead of the IT methotrexate. The reasoning behind that is that he won't need to take leukovorin to decrease seizure risk as it's a different med unlikely to cause seizures. The leukovorin can decrease the effectiveness of the IV methotrexate so they don't want to do that. IT cytarabine was given in lieu of IT methotrexate in the LP right after his seizure and from that we know he does tend to get a fever from it that resolves around 24 hours after it's been given. However, they are okay with us giving tylenol for that and not necessarily going in for the typical fever protocol if he has no other symptoms of illness and if the timing is indicative of it being the cytarabine. 

We hope Ronan tolerates this phase well. He tolerated IM1 pretty well, though his liver was a bit angry towards the end of the phase (as can be the case with the IV methotrexate.) His liver numbers will be watched closely throughout. Nausea tends to be his biggest side effect in this one, and the occasional mouth sore. We will be doing all we can to combat those things, along with keeping him well hydrated, etc. This is the final phase of "frontline" treatment which is a BIG milestone on this journey. Maintenance treatment is overall less intensive than frontline and most kids are able to more fully resume their "normal" lives. If we stay on schedule, we will begin maintenance almost exactly a year after diagnosis. We will stay on this treatment until the fall of 2026. 

This week, we've had several days of sunshine and it's been a hopeful precursor to what we hope will be a pretty fun and relaxing summer...one that at least resembles a pre-cancer summer. Summer has always meant fun and freedom at our house. With Bryce off work and me part-time with almost exclusively weekends, we have had lots of time to play and camp and adventure. We are tentatively making hopeful plans for just that, if just a little closer to home. We have heard the first couple of cycles of maintenance can be a little tough because they will be trying to dial in dosages to keep Ronan in a certain range for counts. We will also still be on a fever protocol. In so many ways, we will still be in this world much of the time, but we hope we feel its impact less. 

We have all struggled with our recent need for isolation and a lack of going out, seeing friends, etc. The boys have had a lot of together time, and have been fighting a lot, with each other, and up against anything they don't like doing. They are dealing with big feelings. There's so much to process and it's a lot for us as adults so I know they are working through a lot. It's been exhausting on a deep, deep level to have to manage all the behaviors in addition to everything else. We're all on the struggle bus you could say. Haha. We are anxious for spring and summer and some normalcy. 

It is an interesting place to be sometimes when you feel like you should appreciate every moment because your child is fighting this life threatening disease and YOU DO, but also those moments are HARD and are driving you crazy. Both things can be true at once, even if one of them causes feelings of guilt. There’s been many, many days that we feel overwhelmed, exhausted, short tempered, smothered, touched out, frustrated, annoyed, lonely, sad, grouchy, AND we are also insanely grateful to be dealing with all of that because it means Ronan is fighting and kicking cancer’s butt, and we are able to keep moving through this as a family. It’s kind of like acknowledging how lucky we are to be getting through this and having so much support, while also acknowledging that we won the bad luck lottery to be here in the first place. Both things are true.

So, please send us patience and sunshine and deep breaths. Haha. Please hope for continued healing and recovery for Ronan’s little body going into this last phase of frontline. If you have any magical sibling get along tips or ideas, we’d also happily accept haha. Thank you for the continued support of our family and friends through this crazy journey. It’s far from over but we chug along!

*Pic of Ronan getting ready to board the bus for the first time this school year! He was more excited than the picture lets on. This guy loves the school bus and his bus driver but for many reasons, it wasn’t a good option this year until now ❤️‍🩹