This has been a long week. I’d read warnings in the Facebook group for leukemia parents about how maintenance isn’t all roses, especially in the beginning, so our expectations were tempered. However, it has still felt a bit tougher than I think we were expecting. 

We kicked off Monday with an LP at 3:30 PM…such a late time for a kiddo to have to fast! To make it worse, my alarm to get him up a bit early for a big breakfast didn’t go off and both boys picked that day to sleep in. So when Ronan woke me up, we had all of 8 minutes to get some food in him before he couldn’t eat! We managed, but talk about feeling guilty! Ronan is such a trooper but it was a long time even for him. He chose to watch Cloudy with a Chance of Meatballs on the way to Portland to torture himself looking at food. 🫣 Then, when he finally woke up and could eat, he was nauseous and nothing sounded good. I did succeed in getting his team to give extra fluids since it is damn near impossible for him to drink 2 L in what was less than 4 hours by the time he was really up and ready to drink. At least he didn’t start off SO behind. 

Management of everything at home has seemed like a lot this week. Ronan is wearing the glucose monitor again to keep an eye on blood sugars. They have been much improved over the last couple of steroid runs, but they have still been elevated. We’ve had to give insulin a couple of times and we’ve been having to keep a close eye, so sleep has been patchy. Home meds have also kicked up a notch as far as the number, but they also feel crazy important so there is a weight there. If we miss a dose or are too off on timing, it increases the risk of relapse. 

Tuesday (and every Tuesday immediately following the LP that starts each maintenance cycle,) the med schedule is complicated.

*Amlodipine (AM) - for blood pressure

*Dexamethasone (AM/PM) - steroid

*Leukovorin - “rescue med” after IT methotrexate that helps rescue healthy cells. It must be given at 24 and 30 hours post procedure. 

*Bicarb- 3x a day 

*Mercaptopurine (PM)- chemo that should be given at approximately the same time each night 

The complicated part of this is that bicarb can’t be given with any of the other meds. It changes the pH of Ronan’s stomach so it can mess with absorption which is the last thing we want. I had to call the pharmacy to clarify exactly what the spacing needed to be. Meds can be given either 1 hour before or 2 hours after bicarb. So on Tuesday, there were seven separate times we had to give him various meds, plus as needed nausea meds! 🥴 Good thing he is able to swallow pills and is so cooperative. Every day after Tuesday, there’s no Leukovorin so that’s good. After tomorrow morning, there will be no steroids, but we will add in the bactrum Ronan has to take AM/PM on all weekends. Come Monday, Ronan will also take oral methotrexate (on every week he doesn’t have the LP with IT methotrexate.) 

Kidney stuff obviously plays a big role here. The amlodipine and bicarb are specific meds that help his kidneys function at their best. Ronan’s kidney numbers are good, almost back to where they were pre-leukemia. However, he didn’t need these meds pre-leukemia either so we know they need all the TLC we can give them. 

Anyway, sorry for the big medical part of that, but the point is, it’s been a lot! We are on seizure watch and worry too, though we hope that never happens again. Maintenance is a big shift away from all the medical oversight we’ve had, and a lot more is on us at home. The perks of that are clear when we don’t have to go up to Portland every week, and we won’t have to completely change our schedule and lives every 4-8 weeks (just every 3 months for one weird week and once a month for clinic check-in.) I think it’s going to take some time to feel the positives of that big shift though. It hasn’t quite registered yet. We’ve been waiting to finish frontline, waiting to finish school, waiting for it just to be us back at home adjusting to a new normal, but we definitely aren’t adjusted yet. 

We were talking tonight about how it feels like SO long ago, like another lifetime ago, but it’s been just over a year. We both feel so much older than just a year. The full album, Frontline, was released today. I haven’t heard all of it yet but there’s a song called Fancy Free and it hit the nail on the head today. Lyrics below.

I used to be fancy free

I could laugh loudly, live my life lightly, I could put you at ease.

But the weight that I carry, 

it’s just too heavy.

I walk more slowly, don’t smile as brightly.

Will I ever be?

fancy free

I walk more slowly, don’t smile as brightly.

Will I ever be?

I feel that. Bryce said today he can’t remember the last time he felt light. All I know is it was Before, before the diagnosis, before the worrisome weeks leading to it, just Before. I used to be an optimist, an inherently glass half full kind of person. Now it is just something I strive to be. Will I ever be? 

Speaking of heavy, this update got a little heavy. Hazard of the topic I guess. We are all doing okay, relatively speaking. Jack is still dealing with so many big feelings, and Ronan too. They fight a lot lately and it is completely exasperating. We are trying to give Jack some things of his own and make sure he gives Ronan some space but it’s all a challenge. Ronan is doing well physically. He’s excited to be done with steroids tomorrow…he was feeling their effects more today. He seems to be tolerating the nightly chemo okay without many noticeable side effects. Fingers crossed that continues and that his labs reflect that as well. We will get a set of labs after this next week. 

We are all looking forward to come some family time next week and over the 4th of July. Please keep sending us your happy thoughts and prayers. The road to the End of Treatment is winding and long, and we continue to walk it. We are all a bit tired ❤️‍🩹