We are at Day 15 of the Delayed Intensification phase of treatment. Milestones to celebrate? Ronan received his third and last dose of Doxorubicin today (along with Vincristine.) He also got shot number 5 of the 8 required Rylaze shots. Last time I posted, I said he had to get 6 Rylaze shots but it is actually 8. On both Fridays, he gets a double dose (one shot in each leg) so that means 8. We are more than halfway there! After this week, we will be halfway through Delayed Intensification. Thank goodness. 

Ronan has been quite the champ about the shots, as expected, but they are still something he dreads. It has also been A LOT to go to Portland so many times in a two week period. We traded one two-hour infusion for these...Ugh, we do not recommend. Did I mention that Diabetes has reared its ugly head again? Thank you steroids. Ronan has also been more nauseous and had some vomiting this week. We are tired over here. 

Then today, kidney numbers weren't great. Creatnine has been creeping up and today it was .7 which is high, and much higher than Ronan's baseline. His CO2 was 23 and that's on the low end, especially when he is taking bicarb three times a day. Honestly, any bad news about his kidneys is like a punch to the gut. So, I'm feeling all the things today, a lot angry, a lot sad, just a lot. These numbers can change and there is more to check and etc. It is not at all hopeless, but it still sucks.

By nature, I am a pretty positive person. I can usually find that in me, even on hard days. I will find  it tomorrow, when I tell myself that we are pulling in his nephrologist, that hopefully this is an effect from the hard hitting chemos this week, the steroids, the diabetes...that he will get those numbers back down. Today, I am allowing myself to marinate in my unhappy feelings a little because that is what is real for me today. 

Today I am pissed that my little boy has to go through so damn much. Labs and tests and meds his whole young life. A big surgery that was honestly, pretty horrible to recover from. Now, Acute Lymphoblastic Leukemia, which hurt his kidneys...and almost every med we use to save his life can harm his kidneys too. Someday, when he beats this cancer, he has to live with these kidneys, and they have to keep him going. Damnit. I hate that I can't take any of it away from him. I hate that he has to be so damn tough. When does he get to catch a freaking break? 

I just learned about somewhere in Portland where you can just go break things. We may have to investigate this as a date night option at some point. It sounds pretty therapeutic. 

I really don't mean to sound ungrateful. I am grateful Ronan is in technical remission and has responded so well to treatment. I am grateful his cancer was a kind we could fight and that he has really good odds for beating. I am grateful his little kidneys are working so hard to try to keep up with all that is being asked of them. I am grateful we have so much support in our family and friends and coworkers.I am grateful that a lot of days, despite all he is going through, Ronan has energy and feels pretty good. I am grateful to have access to very good medical care. I just...I just wish we didn't need so damn much of it. 

Next steps...we go back Wednesday for more labs and another Rylaze shot. Friday we do the same. We will also be seeing nephrology in the very near future, and having a renal ultrasound. The nephrologist ordered some additional lab work this week also. Ronan chose to stay accessed (his port) so he wouldn't have to have extra pokes this week beyond his access today, and his shots. Next week, we have a check in day and then labs, but nothing else planned. 

Ronan's ANC was still decent today, more decent than expected (not in a bad way.) It is expected to drop a lot this week. He also may or may not lose his hair again. We have heard from many that the third dose of Dox is the one that often does that. We shall see. It has thinned but so far that is it. It is just so soft and fine right now. I hope if it happens, it is less emotional for his this time now that he's seen it will grow back.

We did manage to fit in some fun this week. We met some new friends in person, and shared some sweet moments with them that helped fill our buckets a little bit. We enjoyed some zoo time. Jack came with us to a couple shorter clinic days and got to see what that was all about. All these appointments are also so hard on Jack because of time apart. We are so thankful to Grammy and Grandpa and to Caroline (our amazing sitter/tutor) for helping to fill his bucket in those hours. We also spent some time playing cards and throwing rocks in the river and watching movies snuggled up together as a family. For those moments, I am beyond grateful. 

I think that is all I have for tonight. Sorry it is not more bright and shiny. Please send so many happy, healing kidney thoughts. No-fever thoughts. Good blood sugar management thoughts. No-snow thoughts. Strong brother thoughts. Warrior thoughts. Kicking cancer’s butt thoughts. Prayers. Your thoughtful messages are also very appreciated. They help lift us up. Thank you for those! 

Also, if you can, please go do something good. Go do something to help someone or enjoy your life, or better your life. Take no moments foregranted.