Approaching End of Treatment

Two years ago this month, Ronan had a seizure at home. It was one of the scariest and most traumatic parts of treatment because we didn’t know why he was seizing. Now, here we are, officially done with IV chemo infusions, and now steroids! Ronan took his last dose of dexamethasone Sunday morning. We still have one more month of his other oral chemo medication, but this is one we are more than thrilled to say good-bye to. Steroids are a really important part of leukemia treatment but to be honest, they have been one of the hardest parts of treatment in many ways. Between steroid induced diabetes and the way they affected Ronan’s mood and affect, we dreaded every single dose. 73 days of steroids in total, and now he’s done. He’s planning to smash his last dexcom sensor with a hammer for good measure. We took the boys to the air museum and to see the Blue Angels to ring in that good day!

In less than 2 weeks, Ronan will go into surgery to have his port removed. Then we’ll just have another few weeks of oral chemo. Meds have been such a big part of our lives for so long, I think I’m going to feel like I’m forgetting something important for a while. Ronan will be down to a bicarb once a day once the chemo stops. When we see nephrology in October, it’s possible we’ll get to stop the bicarb too. He’s gone from three times a day to once a day already and seems to be tolerating that well. Ronan will also need to continue weekend Bactrum for 3 months post-treatment. So, by mid-December, it’s completely possible he could be off of all medications. This feels absolutely mind boggling to us. 

I wonder a lot about his body will feel as he gets to stop taking things. I’ve heard from other parents about the “energy surge” that they see a few weeks after their kiddo stops taking chemo. I’ve heard about an appetite resurgence too. I long for the day when my kids have huge appetites and the rumors I hear of boys and how they can eat! Ronan has been really going through it emotionally lately, and I won’t share more than that for privacy sake, but he’s definitely feeling all the anxiety and change and stress of the end of treatment. 

I am sure that sounds crazy to someone on the outside of this. End of treatment should be something to celebrate. It is! It truly is. But it’s oddly heavy too. The anxiety part, the worry that stopping treatment will allow the cancer to come back is easy to explain, easy to get, I think. I’ve felt a little of that worry with every milestone…moving from frontline into maintenance, the final spinal, and now end of treatment. The other part, the part where I try to explain how it doesn’t feel like a finish line so much as another really big milestone. I think maybe that’s why it’s hard? Because we know there isn’t really a finish line in a big sense. We never get to check a box that says done and be the people we used to be again. We have all been so dramatically changed by this experience, and we can’t unknow the fragility of it all. 

There is also a wave of unexpected grief lately, of recognizing the time that feels stolen over the last 2 years and 2 months. There is a grief in seeing the emotional struggles of our children that wouldn’t exist without these experiences. There is a grief in recognizing that we are different too. We are hopeful that as we move away from this milestone, as we all try to learn to breathe again, this will lessen. Ronan has described this experience as hiking up a big mountain with a heavy backpack full of rocks that we are trying to learn to put down. Jack was in full agreement. I hate that they feel that but how amazing they can name it?

As we’re all navigating these hard and excited feelings, there is above all, a deep gratitude. We are acutely aware that not every family in our position gets to do this. Not every child has this outcome. Knowing that weighs more heavily than you can imagine. Two things can be true. I am so incredibly grateful to be here, and my heart aches for every family who is far away, or for whom a bell will never happen. When Ronan was first diagnosed, I remember leaving our room to step into the hall to see another child ring that bell. It felt so far away from where we were, days after diagnosis, impossibly far. It also gave us so much hope. We are so hopeful now, even as we feel all the other things. We hope so hard that this is the end of one very hard chapter in our story, in Ronan’s story. 

We are going to be trying hard to make good, happy, healing memories this year. Bell ringing with family, friends and Ronan’s team. Swimming and pizza and cake as per Ronan’s request. A week later, we are going to take the trip we planned and never got to take to the Redwoods. We have an air stream in the woods for two nights right by the Trees of Mystery. On the way home, we found the coolest little farm Air Bnb with a covered wagon to stay in! I am hoping it will be such a fun trip where maybe we can all feel the celebratory part of this. 

There’s a lot to look forward to in the next few months. We have some other fun things planned and people coming to visit us! Ronan will be down to appointments every 6 weeks. We will not have a fever protocol once we’re off treatment and the port is out! I think we go along like that for a while and eventually the appointments and labs space out even more. We finally succeeded at getting both boys into counseling locally could not have come at a better time. We are hoping it will be really helpful. 

The lemonade stand was a huge success. Thank you so much to everyone who contributed in-person or online. We were able to raise $2,252 dollars for Alex’s Lemonade Stand to help fund childhood cancer research! The boys have now decided to do a toy drive for Doernbecher Children’s Hospital. Specifically, Ronan is collecting little airplanes, the same ones he collected during his 20-day stay during induction. He said they helped him and he wants to help other kids going through the same thing. He wants to include a note with each one with words of encouragement. Jack is also collecting stuffed animals, specifically for siblings who might be lonely, because he knows what it’s like to have a sibling in the hospital and parents be away. Their huge hearts make a proud mama. If you’d like to contribute an airplane or stuffed animal, here is a link to their amazon wish list. They chose each plane and stuffy to include! https://www.amazon.com/registries/gl/owner-view/R3WMQE756FO3

Thank you to all of you who have supported us at some time or many times throughout Ronan’s treatment. Thank you for those of you who have supported our fund raisers. September is coming up and it seems poignant it will mark the end of treatment for us. September is Childhood Cancer Awareness month. Spread awareness, contribute to a fundraiser, donate blood! Ukandu, Candle Lighters, The Light Collective, or Make A Wish Oregon are all wonderful organizations that support local families like ours and who rely on donations to keep going. Also, please send us some love and luck as we push through to the bell, including Ronan’s little surgery to remove his port. 

*pics from the last chemo infusion day and seeing The Blue Angels on Sunday