Well we’ve now been home for two whole weeks, which has been wonderful. We did go to the clinic on Monday and Ronan started the cycle of treatment known as consolidation. He got a lumbar puncture with an intrathecal chemo, methotrexate, which will be repeated weekly. On day 1, he also got an IV dose of Vincristine, which he had weekly during induction, but which he just gets once this cycle. He also started an oral chemo, mecaptopurine, which he takes once daily for 28 days. 

Last week, in his week off for count recovery, we watched him get stronger every day. The crazy bruises he had faded to nothing. He had his energy back. So far this week, he seems to feel pretty good too. His appetite has definitely shifted down and today he took a two hour nap, but overall still good. They want his ANC to sit over 750 this cycle so that’s a bit higher than where he was when he felt so bad. We’re trying to get as much good stuff in as we can in this last month of summer, when he’s feeling good, without wearing him out of course.

Yesterday, he got to go to The Cool Pool here in town for the first time this year. Mind you, he was planning an outing there back on opening day in June so to say he was excited is an understatement. He also decided to try the big water slide for the first time and loved it. So of course, I cried at the pool. It’s just so nice to see him doing normal things and enjoying them. This may be the summer of leukemia but it’s also the summer he first did the big water slide for the first time. ♥️🥲

Let’s see, we enjoyed our visit with Grandpa Tim, have had some play times with friends. We celebrated Grammy and Grandpa’s birthday. We did a beach day, a waterfall walk, the pool. We are trying to plan one little camping trip though it may end up in the back yard. We are hoping, hoping that nothing squashes our birthday plans for Ronan turning 7. He is so excited for his birthday. 

I feel like it’s been the most normal feeling week we’ve had since diagnosis. We’re putting the house back together, finishing projects, hanging out with family, friends, and neighbors. We’re grilling food at home. I’m back to work. It’s beautifully normal. There is a quiet worry in the back of mind about the next thing coming that’s going to take us back to the hospital, the next shoe to drop so to speak. I’m trying not to let that worry overshadow my appreciation of wonderful normal feeling moments at home though. 

Some beautiful things I’ve thought about this week…how blessed we are to have so many people around us who love us and want to help and who support us in big and small ways, how Ronan has softened toward his brother, how Jack tries to care for and look out for Ronan, how easy it is to care less about things that don’t actually matter. These thoughts ground me when I start to spiral into worrying about next steps or side effects of meds or kidney transplants, or when the weeks before diagnosis plague my thoughts. It helps to think about these things and focus on the now. 

Yesterday, Ronan did the big water slide. Today, he ran around the backyard with his brother and his friend from next door in water balloon fight. He and Jack learned how to play Toilet Tag. We’re getting to the exciting part of The Chamber of Secrets and I love that he’s loving it. Jack’s tight hugs. Their giggles. Coffee at home amidst sleepy morning snuggles and fights over who gets to pick a show first. Tucking them into bed at night and getting to snuggle up with Bryce. Card games and Yahtzee with family and friends. Grounding. One day at a time. 

“Happiness, not in another place but this place…not for another hour, but this hour.” – Walt Whitman