Tomorrow is the beginning of Interim Maintenance 2. It is the last phase of frontline treatment for Ronan. It will start with sedation and an LP, with IT Cytarabine (being substituted for IT Methotrexate) and then Vincristine and IV Methotrexate. Like IM1, Ronan's dose of the IV Methotrexate will increase with each administration, which will happen every 10 days as long as he is tolerating it. He will start off at 2/3 of the dose he ended on back in December. This will happen a total of 5 times. The fourth visit will also have another LP and IT Cytarabine.

Cytarabine is being substituted for IT Methotrexate because of a medication called Leukovorin. Leukovorin is considered a "rescue medication" meaning that it is supposed to "rescue" normal, healthy cells. It isn't always given for the IT Methotrexate but the decision was made early on to give it to Ronan because of his kidney issues, and then later because of his seizure. It can help reduce the risk to his kidneys and lower the risk for subsequent seizures. Unfortunately, it can also decrease the effectiveness of the IV Methotrexate we’re getting this round. IT Cytarabine is being substituted so we won't need to give Leukovorin and risk that. Ronan has had IT Cytarabine before and we know it can in and of itself cause fevers for him for about 24 hours. We've been given the go-ahead to give scheduled tylenol for 24 hours to stave off these low grade side effect fevers. Our hope is that that will work! If we have a breakthrough fever, we will still need to follow fever protcol and report to the ED. So, fingers crossed.

I'm glad to be moving forward tomorrow. I'm also nervous about sedation, and nervous about how Ronan will feel the next few days. It's hard to want to put his little body through more but this is when I really try to re-frame and think, chemo soldiers. He is so unbelievably tough. I panic when I read all of the possible complications and it's not like we really have a choice, so I try not to delve too much while still knowing what to watch for. We just wish very hard for limited icky things afterward. Last time Ronan had this, his eyes started bothering him. It was a tough side effect and a tough treatment for him with eye drops he really hated. Please send happy eye thoughts.

This time of the year is bringing up complex emotions for me. The warm, beautiful weather has been a breath of fresh air we all really needed. Ronan has been in recovery period for getting counts up again so he’s been feeling good. We checked out the Tulip Festival this past weekend which has been a favorite for years. I love getting photos of the boys there and seeing how they grow against the gorgeous backdrop of the tulips. They had a blast going down the big slide three times, getting their faces painted, eating a giant shave ice, riding around on the little cows and tractors and grouching about me taking pictures!  After the hardest year of our life, it was somewhat comforting to see all the tulips blooming again anyway. It was also the first big normal outing we’ve had in a while and that felt amazing. On the other hand, I'm pretty sure that the Tulip Festival last year was the very beginning of Ronan's illness. He was feeling a bit off, and he really never went totally back to normal after that, though more distinctive symptoms started a little later. That's a little hard to think about.

For a long time after diagnosis, I had those weeks leading up to it on a loop in my head. Never mind that knowing sooner wouldn’t haven’t changed treatment. Never mind that the doctors said we really couldn’t have known much sooner based on all the labs and imaging we had done. It was all I could think about for a while. The mom in me knew something was wrong. But the mom in me tends to be over anxious and too heavily influenced by the nurse in me who has seen too many worst case scenarios to be rational. But the mom gut was right this time.

After the worst option is the answer, and all your worst mom worries are confirmed, it sort of leaves you wondering how you function going forward. For example, I worry about Jack getting sick too. The logical part of me knows that is extremely unlikely. I’ve been told this explicitly by all the doctors. But I worry anyway. I have no reason to believe Ronan won’t get through this and put it behind him and go on to live a happy, healthy life. But I worry anyway. And sometimes that worry seems crazy and other times, I think, but this was crazy and here we are. It’s a hard thing to turn off and it is all rooted in those weeks leading up to Ronan’s diagnosis. I remember this terrible dream that I woke up in tears from, unable to catch my breath. I had the biggest knot in my stomach over it. It was about Ronan having cancer and it was the a couple days before diagnosis. I’m not a psychic, and we’d been referred officially to hematology at that point. But somewhere deep down, I already knew. I just didn’t want to.

So, all that to say, this time of the year is bringing up a lot. We did get news that one of our friends’s little boy got his port removed! Having a port is a lifeline. It’s fast, easy access to a major vessel which means access to checking all the things, safe administration of heavy hitting meds, rapid infusions of fluids, blood products, etc. while getting to have a pretty normal life as far as your bathing, swimming etc is concerned since a port is completely under the skin. The catch is a fever protocol requiring you to quickly get into an ER for blood cultures and antibiotics if you get a fever. There is always a risk for a central line infection when you have one so that fever protocol is a tag along. A port was one of the first things Ronan got after he was diagnosed and he will have it for the duration of treatment. So, to know our friend’s son has gone through treatment, relapse, a bone marrow transplant and recovery…and now it’s out? It’s a huge, happy deal! It was a boost this week for sure.  Having friends in this world is a gift. Their  struggles hurt, but their victories feel like hope ❤️‍🩹

Last but not least, I was so touched to learn a while back that my sister wanted to dedicate her half marathon this month to Ronan. She’s running for St Jude’s so it definitely feels special. They take the lead on SO much childhood cancer research, and they offer amazing support to patients and their families as well. She wrote a beautiful little dedication and you can donate money to St Jude’s through her fundraiser here:
https://fundraising.stjude.org/site/TRpx=8760356&fr_id=154472&pg=personal

Thank you Megs. And thank you to everyone who continues to support us in big and small ways. We appreciate you. Please continue to send your love to our boys. Wishes and prayers for low side effects this round and strength for our Ronan bug.