For those of you who saw the partial update, or the blank update, I apologize. There was a little glitch with the platform and I just didn't have the heart to re-write! I also didn't realize it until it had published, so sorry about that. Here is the whole thing, and now it's even a little more up to date. 

Interim Maintenance 1 done! Another phase of frontline treatment behind us last week. Technically this week and next week are also considered part of this 56 day phase but there’s no chemo these weeks, so it feels done :) It feels like a short break.

Overall, Ronan handled this phase like a champ. He was able to stay on schedule and to tolerate each dose escalation. Nausea the day of and day after, some fatigue, some leg pain and poor appetite were his biggest visible side effects. He did develop a mouth sore this week after this last (highest) dose. Thankfully though, he only developed one sore. Mucositis can be a brutal side effect of this chemo and it's one I worried about him having to deal with so I'm thankful it hasn't been a major issue yet. 

 His liver enzymes were pretty elevated this week, which stressed me out since they still escalated his dose…but apparently the numbers weren’t so high they’d pause or change course. His bilirubin is normal and they believe the other elevated enzymes are transient and somewhat expected. They believe time will bring them down and they will just continue to monitor. As of today, they had gone up further, but only very slightly from last week. Hopefully that means they will go down soon. If all goes as planned, we will go up to be admitted for the start of Blina, block 2, a few days before Christmas.

 Ronan could practically give an instructional video on how to get through a port access. He is such a good little advocate for himself. We have it down to a science. We always stop at the same rest area on the way up to apply the emla cream so it has time to take effect. He repeats the same things to every nurse that comes to access him. He wants to feel his port to make sure it feels numb. He asks if we can see a white circle around his port, which is left behind by the cream. Then he asks for a 1, 2, 3 countdown before they poke. If it's a short access, he likes the tiny dressings so there is less to unstick at the end. Usually, removing sticky stuff is worse than the poke. He always gets itchy with new dressings, no matter what kind of cleaner they use, just when it is newly applied. Now he knows that a heat pack helps with the itching so he asks for that right away. He likes to hold my hand for the poke but he usually says, "that didn't really hurt." It's impressive. It makes me equally proud of him and sad he's so used to everything. As well as he always does, he is also always anxious about it ahead of time. I hate that worry he carries. 

Aside from being a model patient at the clinic, Ronan is SO chatty. He loves to chat up the staff. This week, he spent the entirety of the visit and infusion teaching everyone about the elf on shelf, regaling them with tales of our elves' antics, and telling them the story of Piku deer, the elf pets. He even drew a picture of the deer and asked that staff come by and check it out. I think they all find him pretty amusing and endearing. We might be biased, but we think his oncologist is particularly fond of him, and it makes us feel good, like she cares. She is actually a fellow that works with his attending (who we also really like,) but she was the one who diagnosed Ronan, and she has been with us every step. We are thankful to really like his team. 

Clinic days always feel a little crazy but it was pretty quick, all things concsidered. We really tried to make the most of a milestone day, one more phase down. We rode the tram for the thousandth time, per Ronan’s request of course. We found the best spot to grab an early dinner. It was half an hour before closing because it does breakfast, lunch, and events. It was so cute, all decorated for Christmas, and had such a wonderful waitress. She had no idea about anything happening but was just so kind and thoughtful, and went out of her way to make sure dinner went smoothly. It made such an impact on our night. We took the boys by the big Christmas tree in Pioneer Square, the same tree that popped up on my memories from a decade ago this week when Bryce and I had just started dating. After that, we went to the Christmas lights at the Speedway.

Honestly, it was wonderful. We had a few stressful moments and hit some traffic but even the drive home was silly and fun, with all of us taking turns picking songs and rocking out. I had a moment of joy and gratitude that brought me to tears (in a good way) on the way back. It felt so good to be out doing something as a family that felt kind of normal and fun. It feels good to put another phase behind us too. I think cabin fever has set in a bit these last few weeks and getting out to somewhere that wasn’t the hospital felt nice.

We are all doing pretty well, all things considered. Bryce and I are struggling a little bit with feeling some burn out related to work. Our jobs require giving something of ourselves and lately, we just feel a little depleted. Things are "normal" but never normal if that makes sense. There is this undercurrent of stress and worry and anxiety humming in the background all the time. It's draining. We give so much at home, to keep things running, to keep track of everything, etc. Then we go to work, and we give there too. It's just a lot. 

Most days, I feel like I'm doing fine. I think some days I am. Then other days, I run into a friend at Costco, a friend going through her own medical crisis, a friend who has been on my mind, and she asks how I am and I burst into random tears. Haha. It was embarrassing and I couldn't even really explain it. There is no explanation. Sometimes in this crazy journey, there is just random crying. I've always been a crier anyway- too much of any one emotion and I cry. Happy, yep. Sad, yep. Angry, yep. So ya know, there it is. 

This was not meant to be a downer post. We are so incredibly grateful that things are going as well as they could. Not everyone facing this hell gets that much and we are acutely aware of that. We are so very thankful for everyone who continues to reach out, to offer support, and to be here for us. We have another phase behind us. We are essentially half-way through frontline. We are enjoying all of our favorite Christmas things. I think I'm just in a little bit of a funky mood tonight. 

We have every reason to hope that blina, block 2, will go as well as block 1. It's still a little nerve wracking though. Symptoms can still crop up when beginning the infusion, hence the hospital admission. The hope is there is less reaction due to previous exposure, less B cells in the body to take out, and at this point, hopefully zero leukemia cells. However, he does not get pre-medicated with steroids this time to tamp down his system. Last time he needed a second dose of those to tolerate everything starting, so it's a little nerve wracking. His risk of seizures is also present again and he will be re-started on kepra for the month. We are hopeful though that it will go well, he will feel well, and it will be a month-ish of normal-ish. After block 2, we head into Delayed Intensification...which is as it sounds, intense. 

One very good thing is that we finally have the tutor situation totally figured out. This was very important to have happen before Delayed Intensification, as it will be a long stretch of time that Ronan will not be able to go to school due to very low counts. It's kind of amazing that the sitter we've worked with the last year is a certified teacher in grad school. It's amazing she was able and willing to apply for the tutor position finally posted by the district for Ronan, and that she is so great at working with him and coordinating with his school, etc. She has made this school worry so much smaller and we are so very, very thankful. School staff have also been advocating strongly for this to happen for Ronan, and we are also thankful to them. People may think it wouldn't be a huge deal to miss a lot of first grade, but it's the foundation for so much! Ronan is also a kid who will get discouraged by being behind! This has been huge to get ironed out. 

I think that is all the big updates. Please keep sending healing thoughts and wishes and prayers and love. I hope the holiday season finds you well. I should probably go to sleep because those boys will be up early! Goodnight.