Well, we made it into 2025. We had a good Christmas, though we have been grappling with big feelings and behaviors again since getting home late on the 23rd. It is starting to get a little better again. We have had to implement a few new things at home to help, and some days are better than others but it is getting better overall. It was a relief to start back up with counseling after the break. I don’t pretend to understand what they completely get out of play therapy but whatever it is seems to help some, and they both look forward to it. We also had a visit from my mom over New Years, which was really nice, even if she did repeatedly kick my butt at Yahtzee. 😊 We officially undecorated our Christmas tree and turned it into a New Year's Tree (thank you for the suggestion Latavia) and we will also be having a Valentine's and St Paddy's tree...haha. We had a little NYE party on the 2nd since I worked on actual NYE but hey they boys didn't know the difference. 

Blina has been mostly unexciting which is wonderful. The first couple of days in the hospital, he had fevers but lower grade than last time, as I said in my previous update. The nausea lasted about a week this time but that may have been due to no steroids beforehand. The bigger issue with that was poor appetite and poor fluid intake (for him) for about a week, which resulted in crappy kidney numbers on his first set of labs post-hospital. He was given an increased fluid goal and each set of labs since has progressively been better. It is a bitter reminder though that his little kidneys are so sensitive and we have to be ever vigilant. Ronan’s normal fluid goal for the day is 1.5 L and he usually does that without too much difficulty. His increased goal right now is 2 L and we are having to be a bit more on top of him about it. It’s a lot of liquid! It is supposed to be mostly water. Anyway, a reminder...drink, drink, drink to protect those kidneys.  

We have appreciated the sunshine we've seen this week, so much! We have a week left of this Blina infusion. That means there is one more dressing change and re-access on Monday, which is the most stressful part of Blina for Ronan. Then next Friday, he gets to be freed! We are excited to be done but also, once again, now that he’s feeling good on Blina, and we have a little routine down, there is a security in that that’s hard to leave.  BUT we are going to try and make the most of our little break before the next phase. The boys have been dying to go play in the snow so that’s the plan! 

Our next phase is a tough one that we have been dreading for months. It is called Delayed Intensification, and we’ve heard from the beginning about the dreaded D12. It is the most similar to the induction phase we had at the very beginning of treatment, though also very different. It is our second to last phase of the “frontline” treatment and is essentially, a very heavy round that attempts to get rid of any remaining leukemia cells that might be hiding in Ronan’s body. It is approximately 8 weeks long, though a hold half way through this phase is common since blood counts tend to be very low. A hold gives his body a chance to recover enough to safely continue treatment. This pause can lengthen the timeline.  

Assuming we make counts on 1/24 (meaning Ronan’s Absolute Neutrophil Count (ANC) is above 750, we are due to begin on 1/27. We will go up to RMH on 1/26 for the night, as we are scheduled to be at the hospital at 7:15 AM for an echocardiogram. This is an ultrasound that allows them to look at Ronan’s heart structure and function in great detail. They do this because the chemo Ronan will be getting can cause damage to the heart. This is hopefully not likely...as he is getting a relatively low dose three times in total...but it is a potential which is why they look at his heart first. He will also have follow-up echos at certain intervals after treatment. 

After the echo, Ronan will go to clinic. On day one, he is scheduled to get another lumbar puncture with the IT methotrexate. Then he will get Vincristine (which he’s had many times) and then the new one, Doxurubicin. He will also be started on a course of oral steroids, much like he was on in induction but for a shorter duration thankfully. He will take them for 7 days, followed by 7 days off and then 7 days on. These suppress his immune system and are a large part of why counts will be so low.  

On day 4, he will get asparaginase, which he also had in induction once. There are a couple of things with this. This is a medication that poses some risk of an allergic reaction, and that risk increases with each dose. This is our second dose, so there is some risk of a reaction, but we are hopeful that will not happen. The other thing is that it can be hard on the pancreas. Coupled with the steroids, which can wreak havoc on blood sugars, we may have to deal with diabetes issues again. We are hopeful we can avoid this though, with the shorter duration of steroids. Only time will tell. We will return on day 15, and day 22 for more Vincristine, and more Doxorubicin. That will complete the first half of the phase.  

 On day 29 (if we make counts to proceed), we will move into the second half of Delayed Intensification, which is very different than the first half. Day 29, Ronan will get his second lumbar puncture of this phase, with IT methotrexate again. He will also get IV Cyclophosphamide. This chemo can be particularly hard on the bladder. His doctors don’t think his previous bladder surgery will have any extra worrisome effects but of course we worry about it anyway. Day 29 will also be the start of a new oral chemo, taken once a day through day 42, Thioguanine. This is another new one. He will also get IV Cytarabine on days 29-32 and days 36-39. He has had IT cytarabine before, but not IV. Because these are all so new...they bring with them a lot of anxiety for me. I can hardly even read all the possible side effects anymore because it’s not like we have a choice...but oh do I hate it. I have to constantly re-frame in my mind...these are not poisons. They are chemo soldiers and they are saving him from the cancer. He received a book early on, Chemo to the Rescue. It really helped explain his diagnosis and his treatment in a child friendly way and it has helped me re-frame when I get stuck on these panicky thoughts. Chemo to the Rescue.  

There are no planned hospitalizations for this phase of treatment. However, it is not uncommon for kids to need blood or platelet transfusions. It is expected that his ANC will be low and therefore, he will be very vulnerable to infection. It also means that if he gets a fever, he will be admitted. We will be isolating as much as possible, not attending school except with his tutor at home, etc. The blow yesterday was learning that if Ronan gets a fever, he will be admitted until his counts recover, which depending on when this occurs...could result in a long hospital stay. We are hopeful this won’t happen, as it is really hard on everyone, but the possibility is there. We have some ideas on things we can do to prep, and make it a little easier on the kids if it happens, but the reality is, it is just hard on all of us.  

I very often feel torn in two. When Ronan is in the hospital, it feels wrong not to be there. When you’re sick or you’re scared, you want your mom. He wants me there. And then there’s my little Jack, only 4 years old. I always called him my velcro baby. He is a mommy’s boy and he also wants and needs me. It feels terrible to be away from him. And to be clear, I know that Bryce is 100% capable of staying with Ronan. He does an amazing job. We have gotten better at at least switching off overnight at RMH. Not wanting to leave Ronan has nothing to do with Bryce and everything to do with it feeling wrong on a cellular level to leave him for very long or to go very far when he is in that hospital. And it literally hurts my heart to be away from Jack for very long when I know he needs his mama. It’s a struggle.  

For all of you asking what you can do and checking in, we appreciate you. If we are admitted, gift cards for food delivery or Starbucks are extremely appreciated. The hospital food is truly awful and expensive. We end up eating out a lot and spending a lot to do so. RMH helps some with their meals and grab and go if we are lucky enough to have it, but it’s hard to get back and forth for every meal, get groceries, etc. So those are very helpful. Actual food that we can put in the fridge to heat up is also super wonderful! Home cooked meals become gold when you have to eat out a bunch. All your thoughtful messages are also really appreciated as it can feel lonely and depressing and stir crazy in the hospital. Ronan would love to receive videos, cards, notes, etc. He is already distraught at the idea of having to stay in the hospital for very long. Jack would probably also love this! Often he is visiting or spending some time with us at RMH but sometimes he is apart from us and it is SO hard on him. Videos or mail would be something he would love! 

Donating blood in Ronan's honor is also a great thing! We also appreciate hope and prayers and healing wishes and whatever good luck you want to send. And maybe send an extra one for some others in our lives who are hearing the word cancer recently, or again. I wouldn't wish this battle on anyone, especially more than once. Tough warriors all of them, but still, if you don't mind ♥️