I did a deep dive this week, after an unexpected milestone. I went into mychart, way back to the beginning, and I read every single note. I traveled the whole road since diagnosis from the medical standpoint, matching up my memories of the lived experience. Some of it was pretty hard to read. I’m not sure I’d ever read all the notes from the very beginning.  

I counted and tracked things as I read. 22 sedations since his cancer diagnosis. 22 times that I have kissed Ronan’s forehead and left him asleep and vulnerable, forced to trust in his team to keep him safe while they did procedures. 22 times I’ve stood outside the door and waited to hear he was okay, that he was done, that I could go back in and sit with him while he wakes up. 16 of these procedures included chemotherapy being put into Ronan’s spinal fluid, into his brain, to make sure no cancer cells could escape the assault of his treatment. And now, we’re done. The next planned sedation for Ronan will be when his port is removed after treatment is over. 

We still have two cycles of Maintenance after this one, over 6 months left of treatment. But, because of the way Blina changed frontline treatment for him, Ronan has had the total number of LP’s and intrathecal chemo administrations he is supposed to have, by protocol. The next two cycles of Maintenance will still start with IV chemo and a 5-day steroid pulse, but they will not include lumbar punctures.  

My first response to finding this out was joy, relief, and tears. We dread LP days. We dread the seizure watch and wait that follows. We hate every exposure to anesthesia he’s had to have. Ronan hates LP’s because he has to fast beforehand, because it means being put to sleep and feeling groggy and nauseous afterward. We are all excited about this being the last one, and it almost felt anti-climactic to find out after the fact, but in a good way. We love anti-climactic when it comes to all things cancer.

Bryce and I shared an emotional, wow we made it this far conversation. We let ourselves feel that. But, there is also the ever present duality. Quietly gnawing at that joy, in the back of my mind, is fear. It’s the most present with treatment milestones, especially those that involve decreasing the intensity of treatment. Please let this really be the last one.

Ronan has tolerated this week pretty well. He’s been a bit more tired than normal and even asked to take a short nap the other day. He was feeling the full weight of steroids and that is always hard to watch. He gets quiet, and sad and angry, and emotional. He sort of goes inside himself a bit. We recognize it now for what it is, but this is a side effect I feel like we needed more warning about early on. I knew enough to expect extra hunger, and big emotions. I didn’t know enough to expect the quiet sadness that seems to be most prevalent for Ronan. It is not nearly as severe with a 5-day pulse of steroids as it was with the full 28 days of steroids he had back in induction, but it’s still very much present by the last day.  

The one redeeming quality of this medication (aside from it’s life saving abilities which I am not trying to diminish) is the way Ronan eats on steroids. He says that he literally dreams about food. Considering how he normally eats like a bird, it’s always a bit refreshing to see him polish off more than a grown man multiple times a day for a couple of days. We can appreciate and find the humor in that more this time too as we didn’t have to use any insulin to control blood sugars! We did make some conscious choices to help with that, like avoiding sugary items and trying to pair protein with carby things, etc. His baseline sugars definitely increased by the 5th day and if he were to have to be on the steroids any longer, he undoubtedly would have needed insulin, but we were able to avoid it this time. And seriously, the eating! It’s been impressive.  

On the day of his LP, Ronan’s counts were still on the low side from his bout with the flu. It was safe to proceed with his procedure and his IV chemo, but we were told to still hold oral chemo at home for now. Wednesday, he got repeat labs to check counts again, and we were given the green light to resume home chemo too. Currently, home meds include: 

Amlodipine- a blood pressure medication that helps protect his kidneys (tiny dose of this,) daily 

Allopurinol- a medication used along side his oral chemo to change how he metabolizes the chemo and to protect him from the low blood sugars the chemo was causing for him before, daily 

Mercaptopurine- chemo, 5 days a week 

Methotrexate- chemo, 1 day a week 

Bactrum- antibiotic that protects him from opportunistic pneumonia among other things, weekends 

Bicarb- essentially tablets of baking soda that help his kidneys keep his acid base balance correct in his body, 3 times a day, daily 

He also takes either kytril or zofran to manage nausea related to his chemo medications. His second line nausea medication is benadryl so sometimes (like today when he threw up) that is also needed. The day of the week he has to take his methotrexate and the day to two days that follow often make him feel the worst. It’s a lot. He’s a champ. We remain so thankful that he learned to swallow pills early on in treatment. He prefers apple sauce to help him take his bicarb still, as it dissolves almost instantaneously and tastes pretty bad. Poor guy now hates applesauce but it really does the trick for meds. My heart goes out to my friends with younger cancer kids who have to taste all of their meds because that just adds a layer of hard! I carefully fill his med boxes each week to help us keep track of everything. The dosages of the chemo have been adjusted multiple times during Maintenance, as their goal is always to keep him in a certain range for his ANC.  Shout out to Costco for their reminder texts on refills and on notifications about meds being ready for keeping things as simple as they can be.  

So, that’s where we are this week. One huge milestone we weren’t even aware was coming, down. We officially have this cycle of oral chemo to finish, and two more cycles to start. We have an official end of treatment date of September 17, 2026. It’s in sight.  

This is amazing news! And, it’s scary news. At the beginning of all of this, I watched a child ring the bell, and I hoped beyond hope we’d get to do that. It seemed like it was an eternity away. I thought of that bell as a finish line. Now, I know better. It’s only a milestone, a big one, an important one, but there is no real finish line. What if we stop and it comes back?  What if we celebrate the last LP, the end of treatment, the port coming out, and it comes back? What if we have to do this again? How could I ever put him through this again? Please, please don’t ever let me have to put him through this again. ❤️‍🩹 There is a desperation edged into those thoughts. We will have to learn to live with them. We hope beyond hope, with our whole hearts, that we just learn to live with them, that they never become more than a fear soundtrack.

I know it must seem like a negative way to look at things. I know it must be hard to understand if you haven't lived it, or maybe even if you have and you're in a different place with it now. Maybe there's some point in survivorship that you stop feeling this level of fear in the background? We're working on it. We're trying to feel the joy of the moments we can! There's lots of crazy and laughter and stinky boy farts and wrestling and playing around here. But this is my place to journal the experience and it'd be dishonest not to share this stuff too. When things are going good, this stuff is still the backdrop to our lives. We give chemo meds, break up an argument over legos, check for a fever when Ronan gets nervous, and then answer our 6-year old's questions about whether his brother will always have cancer, all before breakfast some days. That's just the reality. We may feel as though we're on a different planet than the rest of the world some days, but we're getting through this, one messy step at a time.