We are in remission! Ronan’s end of induction bone marrow (the second one) definitely showed less than .01% leukemia cells! It actually showed 0% but these are the doctor’s way of explaining that we know there may be a very few cells hiding which is why we do all the next phases of treatment. Stopping now would almost ensure relapse. So, they say less than .01% were seen. BUT right now, he is in remission which is the best possible outcome for this phase of treatment. It keeps him in the standard risk category which means slightly less harsh treatment, slightly shorter treatment, better prognosis for long term outcomes, etc. It is still a long road ahead to ensure we stay in remission but we are celebrating this victory in a big way. We needed this news today so dang bad. It put the last six weeks and all we’ve put Ronan through into perspective. So YAY!

Okay now to update on the rest. We were home almost exactly 24 hours before we had to come back to the hospital. Ronan woke up from a nap in the afternoon feeling warm and despite checking 100 times and ensuring he wasn’t just overheated from covers, he wasn’t. I should add that it was also basically 5 pm and traffic was terrible. It was the exact scenario I had stressed over going home. So, we had to go to the emergency room in Salem, as it was closer, and he needed the antibiotics on board quickly with a fever when he is neutropenic. 

It was a little bit of a to do to have to go through the ED that was not here and then we had to ride to Portland in an ambulance due to rules about level of care. Ronan was not that sad about this, lol. Luckily we didn’t have to wait too too long and we got resettled. We have now been in a room on each side of this unit and Ronan likes this one best because we can see Life Flight land and can just see the top of the giant crane that is up here working on a construction project right now. 

We are hopeful that we will only be here until Friday morning. That will be over 48 hours on the blood cultures and if nothing is growing, counts are still going up, and no fevers for 24 hours, we can go. They want to see Ronan in clinic on Monday for labs and such. They will be holding chemo for one week to let his counts recover and let his body gear up for the next round. 

On August 5th, Ronan will start the next round of treatment called Consolidation. It is 28 days long. On day 1-28, he will take an oral chemo. On day 1 only, he will get one dose of IV chemo (the same one he has been getting in induction.) On days 1, 8, and 15, he will get an LP and intrathecal chemo. He will also get an oral medication at 24 and 30 hours after each LP. 

The next cycle after this one will be his first round of the newly included medication that kids were only being randomized to get before, Blinatoumomab. His doctors are very excited that every child will now be receiving this as part of the standard treatment. It’s a little interesting as it is a continuous 28 day infusion. We will spend the first few days of it in the hospital and then we will have some kind of home health for weekly changes and labs. He will have a backpack so he can have it continuously even at home. 

Beyond that, there is another phase but we’re taking one thing at a time! In the meantime, we are very hopeful Ronan can celebrate his birthday party with friends and family in the way he wants at the end of August. School is a bit of a question mark. It will likely be a hybrid of home and school for a while as counts will be up and down. We want Ronan to maintain the connection with his school and classmates but we also want him to be safe and we know how germy elementary school is! This is something we are still figuring out and probably will be for a little bit. 

It has been an emotional roller coaster of a week. FINALLY being allowed to go home, and coming home to some amazing surprises. I don’t even know how to say thank you to everyone who helped with the upgrades to our house, and beautiful changes made to our yard! It was overwhelming to realize all the love and time people poured into those projects. We were so touched and have no idea how to properly say thank you. ♥️ We got to enjoy one day at home and then having to come back…lots of hard moments in that. But then to get such amazing news yesterday! Roller coaster! 

I am also supposed to return to work this week from my leave of absence, though I will have an intermittent leave to pull from as needed. That feels like a foreign country at this point but I’m hoping a tiny bit of normal will actually feel good. I’m a little sad to be away from everyone once we will once again (hopefully) all be home but it’s a couple of days. Unless we get more surprises with our stay, I’m planning to go while we have all the help we still have! It’s a long road ahead and it feels important to save the leave I have for really, really needed times. Everyone keep your fingers crossed for home and a nice lovely, even boring weekend there! Tucker also went in for his surgery today so we’re hoping he heals up quick 💕 

Oh, one more positive is we’re officially out of isolation today! Ronan has already walked 5 laps and planned out a bath for later this morning. He is hoping for some play room time, and there is supposedly a Dalmatian therapy dog rounding today. We’re hoping he and Jack will get to enjoy that this afternoon. Yesterday was bingo, and then music with Joy RX and that’s a favorite! These little things make such a huge difference in these hospital stays. Ronan has also taken to be playful with the staff and keeps placing his little snake near where they work to give them a little jump. So worth it to hear the giggles. He’s feeling good and that feels amazing. Platelets were up to a whopping 97 today so his bruises are actually beginning to heal. ANC hanging around 200 but the docs are expecting a jump soon. 🤞🏻