We are a week into the second half of Delayed Intensification, or DI2. It has not been without hiccups, but Ronan is holding up well so far.  He is one tough cookie. 

Last Monday started off with a bit of a bang with a scary moment during Ronan's lumbar puncture. Sedations are always challenging because it never feels right to leave your child in what feels like a very vulnerable position, even when you trust your team, even when you've had to do it a dozen times before. It started off like it normally does with them letting us stay with Ronan until they administer the propofol and he falls asleep. We always stay nearby outside the room because the whole procedure usually just takes about 15 minutes. We could hear a lot more beeping than normal, and Bryce was freaked out. I was trying to reassure him (and myself) that a real emergency would have them calling for more people and activity, which is true, BUT Ronan did have some trouble maintaining his airway and oxygen when he was put to sleep this time. It was enough trouble, that the needle in his back had to be removed before the chemo could be administered, so that the sedation team could lay Ronan on his back to better be able to oxygenate him. 

The team's best guess is some lingering inflammation and extra secretions related to Ronan's recent cold. He had been symptom free for several days, but they said those things can linger and cause trouble in a sedation, all the way up to 4 weeks after the fact. In Ronan's case, as soon as he fully relaxed from the propofol, he had audible stridor, which indicates a narrowing of his upper airway. Then he had some additional secretions (which just appeared to be spit or phlegm) but the combination was enough to create a potentially scary situation, had his team not been really on top of things. All said and done, Ronan's doctor was able to collect spinal fluid for analysis but was not able to administer his IT chemo. We worry about every delay and change in treatment effecting Ronan's treatment outcome. But, we do trust his doctor. She said they could have stabilized his airway and tried again at the time. If we were in the induction (first) phase of treatment, she would have done that, but at this juncture, it felt safe to delay and try again at the later date. We will repeat the sedation and give the IT chemo a week from today instead. We are not excited for an unplanned sedation, but we are thankful everything was okay. Ronan made a bit of an impact though, as his sedation nurse came by after her shift on Monday night to see Ronan fully awake. She even brought him a little leggo set. 

Before the foiled sedation, Ronan had a bolus of fluids. After his sedation, we were admitted for a day stay on the in-patient side of things. We had a wonderful nurse, but as per usual in the in-patient world, things take FOREVER. In this case, we waited for over 3 hours for pharmacy to send up Ronan's chemo. The chemo itself took about 30 minutes, but then he had to have 4 hours of post-fluids before we could be discharged. It was about 9 pm by the time we got to go so it was a LONG day. Thankfully we stayed at RMH afterward so we didn't have far to go, and they did get us out in time to make the tram before it closed.

Tuesday was a little rough because of how nauseous Ronan felt. He got some heavy hitting nausea meds on Monday with his chemo but he still felt pretty terrible and threw up once. It took a lot of pushing to get close to his 2 L fluid goal for the day because of the nausea but he did it! It seemed to get a bit better as the day went on. The next couple of days he had little moments of nausea but it was pretty well controlled if we stayed on top of nausea meds. His appetite hasn't been huge but he has been drinking well and eating enough for us not to be worried. Overall, he has managed pretty well. Our home chemo, the second, third, and forth doses of Ara-C through his port, and his de-access at home went well. Ronan said I passed the test, haha. 

Today, we went back up to clinic for a check in and labs, along with his first dose of Ara-C for this week. We will do three additional doses at home again, along with continuing the oral Thioguanine he's been on since last Monday. Labs today were good, but as expected, counts are decreasing. Ronan's doctor today said that she fully expects his counts to go very, very low this week, and there's about a 50/50 chance we'll have a fever/neutropenia admission. While this is not welcome news, it's nice to know to look out for it and be ready for the potential. There is also a rare but scary side effect of the Thioguanine that can pop up in the time frame of the end of it this week, so we are also watching for any signs of that closely. We are trying to be prepared for the worst but to hope for the best. 

Thursday will be the last day of Ara-C and Sunday will be the last day of Thioguanine. Monday, we will get labs, get any necessary blood or platelet transfusions, and then have the sedation and the repeated attempt at the IT methotrexate Ronan was supposed to get last week. Then, we will officially be done with all the things in DI2, aside from the built in two recovery weeks. We are not out of the woods yet but we can almost see the sky! We are SO excited to cross this phase off the list! After this, we have only one phase of "frontline" left to go. It is not the end of treatment but it is the end of the most intensive treatment. It is a huge milestone!

If all goes well, and there are no delays, we will start Interim Maintenance II on April 7. It is our plan for Ronan to return to school, at least part-time during some point of this phase. (During Delayed Intensification he has been exclusively working with his tutor at home.) He is really missing school. It is our hope that he can enjoy the end of the school year, unmasked after the worst of sick season passes, and just being a pretty normal first grader. We really want to give him that connection with his teacher and class to round out this very, very hard, and anything but normal year. I'm actively choking up as I write that. Ronan is so unbelievably tough and he has been a trooper through everything. We so badly want him just to get to be a kid for a little bit. He has been working so hard with his tutor and doing so well on his school work! We want him to get to see that that's true by getting to go to some school in person. 

While we are looking for the sky, we tentatively make plans (something we've been afraid to do for months and months.) We want to make a trip to Idaho to visit cousins in the near future. It has been WAY too long since we've seen them! This is something Ronan has been requesting for months but with Blina and home infusion and SO many clinic visits, it just hasn't been feasible. We hope to make it happen. My oldest friend and his amazing husband adopted a baby in November that I have yet to meet. and which is killing me. We are hopeful they can all come for a visit and a beach trip. My dad would like to come visit again. We have a big family trip planned for July 4th up near Spokane. We have been invited to Camp Ukando for families experiencing cancer in mid-July, a sleepaway camp at Rockaway Beach. It's for the whole family because of Ronan's age, (though next year he will be eligible for the bigger kids camp!) We have heard nothing but amazing things.  

In the background of these hopeful plans will be continued treatment for Ronan. This marathon is far from over. We have heard the first few cycles of Maintenance can still feel like a lot, and we will still be on a fever protocol for Ronan's port for a long time. All of these plans are within an hour to two at most from a children's hospital, and we hold no illusions of totally smooth sailing. BUT we are cautiously hopeful ❤️‍🩹

It's been a strange few weeks and I think it will get stranger yet as we approach the anniversary of diagnosis. I find myself looking at photos from this time last year and analyzing them for signs in Ronan that this was coming, or just thinking about life, "before." I feel confident that Ronan was still healthy at this time last year, that it was the very end of April that he started to have things that had my mom antennae up. Everything in our life is divided into the before and the after. It's a little painful and bittersweet to remember the before. The after is heavy and even as I want to stop talking about it, stop thinking about it, sometimes it takes up all the air in the room. It is so consuming right now. Even when we're at home and things are normal, we are all processing and trying to find a normal. I know I carry a ton of mental load for thinking about next appointments, next steps, medications, remind Ronan to drink, how many ounces is that today? Does he feel warm? Sometimes the down time is almost harder because it's hard to turn off that constant stream of thought. Even when it isn't an active thought for any of us, the emotional repercussions linger. The after is different, and I know it won't be this way forever, but remembering the contrast is hard. 

 Bryce and I did escape for a little date yesterday to the smash room we were told about. It was pretty therapeutic. Bryce yelled some choice words and I shed some tears. We threw mugs and plates and smashed all kinds of glassware, VHS tapes, bowls, etc. It was a worthwhile half an hour and we're glad for the suggestion. Thank you to Grammy and Grandpa for babysitting so we could have a Sunday date of smashing stuff and lunch. We ended our Sunday by helping the boys make leprechaun traps, one of their favorite activities. It was a good day. 

Thank you to everyone for your kind words, thoughtful check-ins, surprise mail for the kids, funds for meals and coffee, and our smash date, and even beautiful homemade gifts. A neighbor we hardly know showed up with homemade, beautiful Adirondack chairs for the boys this week.  All of these little things offer us a little light and we are so thankful for all of you. Please continue to send us all the good vibes and thoughts and prayers that the next two weeks go smoothly with no scary side effects!