I have struggled more with sharing as we've moved into this part of treatment. The depth of everything we're still experiencing is hard to explain. It feels almost ungrateful to be honest about the hard parts. The hard parts are less visible too, easier to miss. It feels a little bit isolating.

Ronan looks so good and he's going to school, and we're not at the hospital as often. We do feel that, and there are many whole days when things feel good, even great. We went to camp and camping, and we just flew away for a holiday weekend for the first time in 2 years. These are not small things! We fully appreciate and are aware of our fortune in being able to do them. These are things everyone sees.

The underbelly though, is still, SO vulnerable. Clinic days pull us all back to the trauma of it all. The kids act up, and we find ourselves swallowing a whole lot of crap we haven't fully processed. Ronan is so cooperative and pleasant with the medical staff, but shows his anxiousness in how he advocates for himself and asks questions. He also chats them up and draws them pictures. When asked to describe his feelings on clinic days though, he said he feels sad and mad. I get you kiddo. I see you. I can see this in him and Jack when they react hugely to something small and petty. I feel it in myself too. I feel it from Bryce. 

There is a heaviness in managing everything at home. There's worrying over water tracking, and timing of meds (4-5 times a day.) Meds are big for anyone, but when your home meds are chemo, there's no misses allowed. But the biggest, most invisible part of this weight is a constant fear of relapse. Every weird day when he seems off, every weird symptom that seems different than normal, it creates a pit in your gut, and a heaviness in your chest. I call it the dark place. It’s hard to breathe in there. When something pulls me into the deep end, and I can't shake it off, when I can't reason my worries away…It could be an hour or several, but it's always just there in the background. 

This week, we had an especially hard 24 hours in there. Ronan started cycle 3 of maintenance on Monday. That means he got a lumbar puncture, with intrathecal chemo, IV chemo, and it means he's on his 5- day steroid pulse. It was a hard day for all the normal reasons, but it was nothing out of the ordinary in that way. However, Tuesday morning, the results from the standard tests they run on the spinal fluid they take out during his lumbar puncture resulted in mychart. There was nothing terribly alarming to my eye, but it was not the same results we usually see, so I emailed his doctor. She essentially said that the results could be "normal" but because they were on the line, they always run additional analysis to make sure there are no leukemic cells. So...it could be nothing, or it could be our worst fear, a relapse, presenting itself in the spinal fluid. It would likely be Thursday before we heard back. 

We were frozen in the dark place, waiting. By yesterday morning, I had reached the conclusion that if the earth was going to potentially crumble beneath our feet again on Thursday, if we were going to go back into heavy battle... If Christmas was going to potentially be spent in re-induction, that yesterday was going to be an amazing day with the boys when they got home. We were going to decorate the tree and go to the park and make their favorite dinner. We were going to make yesterday good in case today became another devastating defined before and after moment.

The test results came in early yesterday. There were no abnormal blast cells. There was no sign of malignancy. Treatment is still working. We cried big tears of relief. Then we tried to make the day good anyway. Carousel and pretzels, park, tree decorating and Christmas songs, made their favorite dinner and cookies, and watched part of The Sound of Music. Ronan did feel pretty puny at the end of the night, which put some of that constant worry back into the foreground. It seems the chemo is hitting him hard this week, as he keeps having ups and downs in how he feels. He’s made it through part of school this week but has been intermittently tired and puny. Nausea medicine is being needed. We are of course monitoring blood sugars on the steroids. But. We can keep breathing for now. ❤️‍🩹

Prior to all of this crazy, we had a wonderful long weekend in Arizona with some of my family. The kids had lots of cousin time, pool time, and enjoyed the side by side too. Jack especially liked helping drive it through mud puddles. We celebrated all of their birthdays from the year going to see Zootopia 2, which was really good. We got to go to a Christmas light festival. On the way home, the boys got to meet the airline pilots and go into the cockpit. Ronan even got to push the fasten seat belt button. The travel was long but overall uneventful, and we made it home safely.

Christmas is coming and some of our favorite things along with it. The elves have returned, much to the boys’ delight. They wrote their letters to Santa and put them in the Santa mailbox at the carousel yesterday. They asked for Legos. I wrote one too, and I wished for continued treatment success. It's what I will want for every Christmas, forever. If we needed a reminder of the things we’re thankful for, of what’s truly important…we definitely got it. I hope you are all well. Please continue sending love and prayers and healing and health to our boy. Please keep us in your thoughts as we navigate this path. And in case, I don’t write again sooner, Merry Christmas and cheers to the things that matter most. ♥️