Yesterday was the first sedation appointment we've had in over 2 months. Sedation appointments mean that Ronan gets a lumbar puncture where they inject chemo right into his spinal fluid. He was not positive for leukemia in his spinal fluid at diagnosis (thankfully), but it is a place that leukemia cells like to hide out and evade the standard chemotherapies. Therefore, every child with leukemia gets intrathecal chemotherapy as part of their treatment.

Sedation appointments always feel extra challenging. Ronan does amazingly well with it. He knows the routine by now and the hardest part for him is often not eating for 8 hours prior to the procedure, especially when we are scheduled for 3 pm. However, even that wasn't too bad for him this time as his appetite hasn't been great. We got him up for an early breakfast and he's allowed to have water until 2 hours beforehand. So, he did great. These appointments are more challenging for us because no matter how many times we have to do it, it's hard to leave him when he is put under. He just seems so vulnerable, and it goes against every instinct to have to leave him.

This kind of chemotherapy is also thought to be what caused his seizure in August. So, there is always extra worries and stress for the week or so following. Also, I think the long break made it feel extra hard, as weird as that may sound. Between Blina and the quick clinic visits thus far this phase of treatment, it's almost like we've been able to push "cancer" just a little bit further back in our minds. That may sound ridiculous since we are still going to labs and clinic visits every 10 days, still getting chemotherapy and still dealing with some side effects at home. And, for a month we were actively getting an infusion at home and having to deal with the inconveniences of that. BUT, Ronan has felt pretty good, with side effects being somewhat minimal (especially compared to the earlier phases) and we haven't had to be in-patient or take any unexpected trips to the ED. 

The sedation, and having conversations about his seizure risk this week (highest on days 5-7,) brings it screaming right back to the forefront of everything. We also discussed our next planned hospital admission on 12/20 to start Blina for the second time. We've heard mixed reviews on whether side effects for beginning block 2 are as bad as block 1...or better, or worse, and it seems to be a mixed bag. He won't get dexamethasone to chill out his immune system ahead of time this time. Still, we hope it will be a short stay, especially since it is right before Christmas. We're planning to decorate his room (and probably Ronald McDonald too,) as Jack will come up and stay with one of us there. 

After his sedation and LP yesterday, Ronan got Vincristine, and the escalating dose of methotrexate he's been getting for all of this phase again. He felt pretty nauseous and had really "dancy" legs as he describes it. He slept well with meds on board though.  We've kept up on nausea meds just in case today and he has felt okay, which I am glad for. Everyone send lots of anti-seizure vibes our way would you? I don't think Bryce or I will sleep well for the next week. 

Our last clinic visit for this phase of treatment will be December 5. One more clinic visit with one more dose of each chemo (as long as he makes counts the day before.) It will be a milestone to be through one more phase of Frontline! We're hoping to squeeze in some fun after the appointment with the Christmas display at the speedway or something. He will get two weeks off after the 5th and as long as he makes counts, we will go back up for admission on the evening of 12/19. Hopefully, it will be like a 48 hour admission and we'll be home for Christmas Eve and Christmas. 

We continue connecting with more amazing families going through this special edition of Hell. It is really nice to get to know them and feel less alone. You also wish so hard for each one of them that they weren't having to experience this either. One of the families we got to know this summer went home today, after 110 days between the hospital and RMH. 110 days! I'm so freaking happy for them to be together and home again and I hope their warrior continues to do so well after his bone marrow transplant. Another family we connected with recently is a little more than a phase behind us but on the high-risk track with their little toddler. I can't imagine trying to navigate this with such a little warrior who has limited ability to communicate everything. SO hard. But they finally got amazing remission news and I'm so relieved for them. Every happy bit of news from someone fills my heart and makes me cry. The victories on this long road have to be celebrated in order to keep putting one foot in front of the other. 

Other news in life, we are in full Christmas mode around here. The tree has been up for a week and we're embracing it fully. We may leave it up until Spring and just keep changing up the theme for different holidays. My beautiful neighbor made that suggestion, and I think it is genius. Why not embrace anything that brings them joy right now, especially knowing we are heading into a very hard phase in January? They are counting down the days until our elf on the shelf reappears. We have also added pizza and hot dogs to our Thanksgiving menu this year per their requests haha. Again, why not? 

Anyway, I need to go join all my boys for a snuggle and a viewing of Frosty the Snowman. Please keep sending love and healing our way, and Happy Thanksgiving everyone.