It’s been a calm week around here, as far as health management goes. Ronan got labs today, but other than that,  thankfully, we haven’t had crazy surprises, and his labs were good. He is in his last week of the second phase of his treatment, called consolidation. He has two more nights of the oral chemo and he’s done. One more phase behind us…a lot left to go, but still, one more down. 

Most people don't know that kids with leukemia get active treatment for almost 3 years. The first 6-9 months are called "frontline" and are the most intensive part of treatment, but still. It's a bit daunting. Once we enter  what is referred to as maintenance, our visits to Portland will hopefully just be monthly for the most part. Kids in maintenance often return to school pretty fully, have their hair grow back, and live somewhat normally. However, there will be oral regimens at home, including steroid pulses at the start of each 84 day cycle, which for Ronan will likely also include insulin since he seems to go hyperglycemic with any dexamethasone. There are also still times counts will be low, fever and neutropenia, etc. just hopefully less! Anyway, it's a lot. I have found that I really only like to think about where we are and what's up next. The big picture is a little overwhelming. 

Our big focus this week has been lining up some counseling for the kids, well for all of us really. There have been a lot of big feelings coming out…and a lot of behaviors. It’s been a bit exhausting. On top of that, we’re dealing with our own stuff while we try to parent them through this. Ronan has a lot of justifiable anger, but it is coming at all of us, which is hard. Jack is also angry, and worried, and he's been a bit traumatized (particularly by the seizure experience.) 

For some reason, recently, I have been a bit haunted by the weeks leading up to diagnosis. I know they say it wouldn’t have made a difference and I believe them. It would not have changed our course, even if we caught it a week, or two or three weeks sooner. His treatment wouldn’t be different. Yet those weeks eat at me. I should have known. I should have seen it. I should have pushed harder. I should have trusted my gut more. 

Reading through texts I exchanged with a friend a couple of days before we went to the ER, I feel like I did know. I had a horrible dream about cancer a couple of days before. I remember feeling a little crazy…like I knew but couldn’t let myself believe it or was trying to talk myself out of what is supposed to be the crazy, no way answer. I don’t know why thinking about those weeks makes me feel so incredibly anxious and sad. I think about the way his belly looked and feel kind of sick to mine. I compare his beginning of the year picture with the end of the year picture and think, how could we not have known how sick he was? It eats at me.

Bryce starts back to work on Tuesday, a new school year. Ronan is officially starting first grade. It’s hard to picture going back to our normal lives when nothing feels normal. In some ways, I’m thankful for some sense of normalcy. On the other hand, I’m so tired thinking about trying to do our normal life with all this added on top.

With Ronan being on a week off between treatments and knowing his counts are good as of yesterday, we’ve decided to send him to school for half days this week. He will get to know his new teacher and classroom, and see his friends and hopefully get a little invested in school again. He will have to miss most of the following month but he can zoom with his class, and they will be utilizing the Monkey in my Chair (look it up, it’s so cute) to keep Ronan more present in class. He will also get a tutor at home for so many hours per week. The school so far seems to be flexible and willing to work with us and that feels good. 

It will also be a good week for lots of one on one time with Jacks before another separation and hospitalization. He will probably stay with us a night at Ronald McDonald but only after the first day or two with Blina when we know things have settled down. There is a risk of seizures and things the first couple of days and I will be happy to have that behind us. Ronan will be started on an anti-seizure medication for this month due to his history now and the increased risk that poses on Blina. It will be temporary. 

September 1st tomorrow, kicking off Childhood Cancer Awareness month. I’ve always been aware of this month, ever since my rotation on the hemonc in school. This time it hits different 💛 Please consider going gold, raising some awareness or, donating to an organization that conducts research or offers families going through this special Hell support! Or donate blood, platelets, or plasma! There are so many great organizations out there! 

Keep sending positive thoughts! 🙂 We are glad to have fit in some fun moments this week including lots of bike rides, playground time, a trip to the air museum, and a second day at the beach. We don’t feel totally ready for fall but we are excited to get out the decor, and the kids always love this season.