I am feeling all the things tonight. Ronan had his last lumbar puncture with IT chemo, and his second to last dose of chemo of frontline today! This is a huge, huge milestone. Ronan gets his last chemo of this phase on 5/29 and gets a two week break before starting maintenance on June 16th, just over one year from his diagnosis. This first year of treatment, frontline as they call it, has been made up of induction, consolidation, a round of Blina, Interim Maintenance I, a second round of Blina, Delayed Intensification, and now Interim Maintenance II. Each phase has held different meds, different schedules, and different challenges. In the doctor's note, she lists out each phase and each complication of that phase. It's so concise and neat. I look through the list and remember so much more. Forgive me for a recap but it's all been playing through my mind a lot recently.

Induction was pure hell honestly. Medically, it was 28 days of steroids, three different lumbar punctures, two bone marrow aspirations (which actually turned into four for Ronan,) and the first doses of a variety of chemotherapy which is actively wiping out almost all of the cancer cells. This caused Ronan to need hemo dialysis for about a week due to Tumor Lysis Syndrome (crazy electrolyte imbalances that his kidneys had trouble managing, and that is caused by all the dying cancer cells.) We spent 20 days in the hospital in our first in-patient stay, one of which was in the Pediatric Intensive Care Unit. We then spent much of about 5 days at clinic, and then had a re-admission for fever and neutropenia, for 5 days if I remember correctly. When we were able to leave the hospital, we stayed at Ronald McDonald House, which was a huge blessing, but was not home. In all, we spent six weeks in Portland, and then we finally came home only to have to turn around for a second stay for fever and neutropenia. This phase also included a port placement surgery, the first hard things like dressing changes and re-accesses and so many awful oral meds because Ronan couldn't swallow pills yet. It included round 1 with steroid induced diabetes. Ronan probably had close to 100 sets of labs, as for a good long while they were drawn every 4 hours. He had probably close to 200 pokes between IV's, port accesses, and blood sugar checks. He had so many infusions of blood products.

Induction was all of those things but it was so much more. It was emotionally devastating in a 100 ways, first in learning about Ronan's diagnosis. It was the impossibility of explaining it all to Ronan and to Jack. It was watching Ronan disappear into a fog of quiet sadness that barely resembled him at all. It was having to be away from our 4 year old for so many more days than we ever had. It was weeks away from home, so much bad hospital food, many sleepless nights and constant fear and worry. It was Ronan asking me to shave his head because his hair was falling out in huge chunks. It was waiting on pins and needles for every updated set of labs and biopsy results. It was the cracking open of our lives and a hard fall into the world of pediatric oncology. It was BRUTAL. Thankfully, it ended with finding out Ronan had made it into remission, which meant that he had less than 1% of leukemia cells in his bone marrow. It meant treatment was working. It meant he stayed in the standard track for treatment, which was something we had hoped hard for in lieu of what he (and his kidneys) would have to endure. 

Consolidation was next and it meant home and that was wonderful, and also so challenging as we all tried to process the straight up trauma of induction. We had our best moments of the entire summer in this phase, moments that actually resembled summer, Ronan's birthday. However, it was also weekly clinic visits for lumbar punctures and IT chemo. It was daily oral chemo at home and learning to swallow pills. And then still one of the scariest moments to date, Ronan's seizure, which landed us in the hospital once again, though only for a short stay. It was navigating being home and the anxiety of being further away from the hospital. 

Blina meant a planned hospital stay for the initiation of it. Ronan had some significant enough side effects on the first night to scare us and get some additional meds to manage them. However, once we were past that, Ronan felt pretty decent. There were challenges with having a constant infusion for 28 days...bathing, little changes to our house (homemade IV pole on Ronan's bed, a baby monitor Ronan could talk into at night in case he needed help navigating his tubing to use the bathroom, etc. and so we could hear the home infusion pump beep if there were any issues, and carabiners in the car.)  Ronan really hated and dreaded the weekly dressing and needle changes done by home health. Staying accessed for so long and then having to re-access right away meant that it hurt even with the magic numbing cream. He would get pretty worked up for these days. Because Ronan was at higher risk for seizures on blina, he took a seizure medication for the whole month both times. We carried his emergency seizure medication and an epi pen (always some risk of developing an allergic reaction) everywhere we went. Despite those challenges, Ronan was able to attend a little bit of school and we fit in some favorite fall activities. Blina came along with us. Our second round was similar with the added challenge of our planned hospital stay being right before Christmas. 

Interim Maintenace I was similar to the phase we're in now with one lumbar puncture (Interim Maintenance II had two of these,) and escalating doses of chemo. Nausea and vomiting tend to be a struggle the day of and for a couple days after the clinic visits, which take place every 10 days. Counts tend to hold pretty steady so we tried to keep as much normal as we could in these phases, especially the current one since we are somewhat exiting sick season and the weather has allowed so much outside time. Ronan is going to school most days, still usually for half days as he is struggling with fatigue and stamina for school. He also works with his tutor on the half days. 

Delayed Intensification was as fun as it sounds...steroids again, though for a shorter duration than induction. They still caused diabetes again and that was challenging all over again. Ronan had an anaphylactic reaction to a chemo that forced us to change to the 8 intramuscular injections that replaced it. It was heavy hitting chemos he hadn't had before, which made it quite anxiety producing. It was knowing his counts would be crazy low and being on fever surveillance. It meant we were all in a bubble of isolation. It had the most wintery weather of the year and that was just an additional challenge knowing he was at risk for things that may require hospitalization. It was two viruses and a scary sedation where Ronan needed some respiratory assistance. It renewed kidney worries. We got through it. We got through them all. And here we are, on the precipice of maintenance. 

To write it all out like that, it sounds simpler than it is. It feels like there is a never ending amount of things to unpack from all that. And it is difficult to explain to anyone who hasn't been through this how very grueling each new step was. 

Maintenance will consist of a lumbar puncture on day 1, a five day steroid pulse (that we sincerely hope won't be enough days to bring on diabetes,) and daily oral chemo at home, plus a weekly chemo in the weeks there is no lumbar puncture. Each cycle is 84 days. We will have monthly clinic visits for port access, labs, and to check in. We will repeat this cycle until September of 2026.There is sometimes an adjustment period for doses, as they want his ANC (essentially his ability to fight infections) to be in a specific range. He will still have a fever protocol. Still. it's supposed to be less intensive and require less hospital/clinic time in general. 

SO, completing frontline is a huge milestone. It will really be something not to have to change up our schedule and routine every 4-8 weeks. It will be so nice not to have to do so much driving back and forth to Portland. We are hopeful we can have some fun this summer and that both boys will start school together in the fall, that we can settle into a new normal. This sounds simpler than it is but we are trying to appreciate the good stuff. Ronan lost his first tooth for instance! Jack is going to be starting up a ninja warrior class. Ronan is doing a great job keeping up with his classmates and he will finish first grade in a few weeks! We all survived the last year, even if it did age us substantially.

I was reminded tonight that it's more than okay to feel and hold space for multiple things at one time. I am SO thankful we're here. I'm thankful Ronan is doing so well. I am so happy to be able to plan some fun things for our summer. I am thankful and I am happy. I'm also scared, scared of letting up on the intensity of treatment because the big fear of any cancer parent is relapse. It is apparently not only a fear for parents. Ronan asked me tonight if I could promise him that the cancer would never come back, that he wouldn't have to do this again. My heart broke into a million pieces when I had to answer honestly, that I couldn't promise him that, because it wasn't something I could control...but that I hoped with my whole entire heart that it wouldn't. I've never held a wish so fervently, never wanted anything more than for that to be the case. If you're following us on this journey, please send up a prayer or a wish for us that this never, ever comes back, that our little warrior only has to fight this battle this one time. I know that I would give anything for that to be the case. Watching your child struggle through these things is gut wrenching, the worst feeling in the whole world.

We have a long way to go on this journey but we have also come so far and it's okay to celebrate that while sorting through the rest of it. Another cancer parent with a son about Ronan's age, and diagnosis is releasing an album of music she wrote to get through their joruney. The album is actually called Frontline. I've only heard two songs so far but they do capture so much of this beautifully. I'm brought to tears each time I listen. One song has been released officially so far and you can listen to it and watch the video at this link. I think it's also on spotify. https://youtu.be/eqcqLGJbDr8?si=vr_TIT-m7d6b-lY7 

I hope you are all well. We so appreciate your comments and texts and messages of love and support. It means the world. I'm sorry this got so long!