Lyrics from a song from Rent, a song I’ve sung to my boys since they swam beneath my heart, a song they request almost every night before bed. I’ve sung it over the phone to Jack countless nights apart this last year. I've sung it to Ronan on most nights we spent in the hospital. Tonight, as I sang it, I thought about our last year and thought of all the ways we could measure it…in pokes, in lab results, in medical tests, in worries, in fears, in medicines given, in miles driven back and forth, in side effects, in things we’ve missed out on, in sleepless nights, in growth and learning, in strength, in resilience, in traumas, in support from those around us, in moments of gratitude, in moments of anger or exasperation, in fights between brothers, in tender moments between brothers.

We have crossed the finish line of frontline treatment. Ronan had his last clinic visit and chemo infusion of this part of treatment on Thursday. We brought cupcakes to share with the staff at the clinic and lots of nurses came by to say "yahoo, you made it this far!" One nurse said she was happy for us but would be sad to see less of Ronan. He is quite the charming patient. 

Our amazing nephrologist also came by to say good-bye before retirement and pick up her little gift Ronan chose for her. We will certainly miss her warmth, and her smiling face, her sweet accented references to her "lovely little boy." I know she is leaving us in good hands but we will always remember her fondly, and be thankful for her care for the past 7 1/2 years, especially last summer when things were SO hard. All this to say, it was a bit of an emotional day for us.

When we left the clinic, I took this picture of Ronan in front of his unit. He is still fighting leukemia but he is strong and there is pink in his cheeks. We are leaving the heaviest phases of treatment behind and moving forward. Just over a year ago, we walked into that unit with a very sick Ronan and so much fear and worry of what was to come. Maybe we measure this year in triumphs? 

Ronan has had so many tough moments this year. But he is doing the monkey bars again, having clawed back his strength yet again after the strong chemo of Delayed Intensification. Ronan is looking forward to summer activities and starting second grade. He has managed to keep up with his peers academically. He has grown 2 inches from last summer and he is back to looking like himself. He has weathered this leukemia and all its harsh treatments with so much tenacity and grit and determination. 

Jack too has had so many hard moments this year. I can only imagine what his little 4 and 5 year old mind and heart has felt through all of this. I know there have been times that he has felt left out, scared, angry, and sad. I know he has grieved the things we have missed out on, that he has missed out on. I also know he's come through it, still smiling, still full of fire, and loving all of us with his whole heart. Having two children to manage with all of this has been so hard at times, when we feel torn between the two of them, when one's needs directly contradict the other's. But I am so thankful for all of the light Jack brought to all of us this year, even through the most challenging moments. I still remember the first time I saw Jack after a few days apart right in the beginning, when Ronan was so sick and we’d sent him home with his grandparents. He launched himself into my arms and held on SO tight for like five straight minutes. I am not sure who needed that hug more right then. Jack has loved us all through all of this and I know it has been hard. He has not let any of it dim his light. 

 In all of the time spent dreaming of becoming parents, in all the months we waited to meet our babies, when we dreamed about their futures, and celebrated milestones, even in the exhausting, hard moments...nothing prepares you for something like this. There is no instruction manual for how to become parents of a child with cancer. You learn from doing anything and everything you can to make things easier on your child, and to make sure nothing is missed, to become their fiercest advocate. You teach them how to advocate for themselves too. You learn everything you can about your child's illness, medications, treatment schedule. You hold their hand through every single scary moment. You talk them into willingly taking medicine they know will make them feel really bad because it’s how they fight this illness. Nothing prepares you for your child coming to the understanding that their cancer is life threatening, to see them grapple with a concept most adults struggle with. Nothing could prepare you for watching your children grow too wise, too young. When you’re little, your parents are supposed to be able to slay every dragon. Our children have already learned we can’t. These are not experiences we imagined we'd face as parents, but we have. We've managed to face them and to do it while holding tight to one another, and I'm so thankful for that. We never imagined in sickness and in health would mean this, but we are weathering the storm together.  

These are all triumphs of our family this year. Our progress has been anything but linear and we are not done overcoming obstacles. As important as it feels to acknowledge these big milestones, we have over a year of treatment left. Ronan will take oral chemotherapy at home almost every single day for the next 15 months. This regimen is less intensive because most of it is done from home, but we are not so naive as to think it will be a path without potholes. (We just hope none of them will be sink holes.) We have so many new things to navigate as we try to go back to our "normal" life while still having one foot in the cancer world. While some of these challenges will still be medical, many others will be more complicated in some ways. The further we get from diagnosis, the healthier Ronan appears, and the more we mix back into life, into the regular world, people forget the level of impact this has had and is still having. It is a constant noise in the background of even our best days. We are learning to ignore it sometimes but it does not ever disappear. As we shift into Maintenance, there are big new fears…but bigger than those fears, is hope. Hope for a future without cancer. Hope for this all being just a memory someday. So much hope. 

The second song from the artist in Seattle, the cancer mama, has just been publicly released. It's the first song I heard, in a recording from a fundraiser where she played it live a few months ago. The lyrics of this song struck me so deeply when I heard it. The song is called, The Tunnel. It brings tears to my eyes every time I listen to it. It captures her feelings, but also her worries for each of her children going through this and I hear my own feelings echoed in it. She captured so much, so poignantly, about the beginning of this journey, a beginning I'm remembering so much of this week, as we simultaneously celebrate moving forward. We’re not out of the tunnel but we can see daylight and we’re moving toward it together. 

This has been a pretty introspective update. What else can I tell you all? Ronan is navigating this phase really well. Nausea/vomiting has been his most challenging side effect, and some fatigue. We had one emergency room visit for a fever last week but luckily counts were good and we were able to come home. These types of visits give Ronan the most anxiety. He's gotten somewhat comfortable with the clinic because he knows the staff and trusts them, and we've been there so much so he knows what to expect. He also has time to prepare himself for clinic visits. The emergency room is more of a gamble as far as experience level, skill with ports, etc. He has no problem advocating for himself but he is always extremely anxious going in. Most of our experiences at our children's hospital have been overall good, but it's been hit and miss with outside hospitals. Mostly we try very hard to make it to our hospital to avoid the bigger gamble. He worries a lot about fevers and has me check his temperature often. As grown up as he appears sometimes, he is still just a little boy who hates being poked and prodded. I can't blame him in the slightest but it still hurts my heart to see it. I've told him before that if I could, I would take every poke, every procedure, every medication for him. The complete inability to protect him from any of it is maybe the hardest thing for a parent in all this. We just have to hold their hand while they slay the dragon.

In the happy department, we have gotten to enjoy a lot as a family recently. My oldest best friend from high school and his amazing husband were able to come visit with their newly adopted son. We had so much fun loving on their sweet baby. Both Ronan and Jack were completely in love with him and just wanted to take turns holding him, feeding him, etc. It was a little unexpected and so darn sweet to watch. We also got to enjoy the beach with them at an awesome little house right on the sand, in the most amazing weather. We got to have a fire and the boys ate s'mores and our friend played guitar and it filled my cup so full to have them all here. We had such a good time and wish it could have been longer! The boys are begging to go visit them soon, or as Ronan said, before the baby isn't a baby any more! 

My dad is coming to visit this week and we are all looking forward to that too. Less than 2 weeks left of school for Ronan and Bryce! Lots of good things to come this summer. Hopeful, happy things. 

Please continue to send healing, healthy, happy thoughts and prayers to Ronan for continuing to do so well. We are unsure if the five day steroid pulse at the beginning of each maintenance cycle will be enough to trigger the steroid induced diabetes but we are sure hoping not. We are hoping he tolerates the oral chemo well and as expected. We are hoping for counts where they want them and no fevers! We are hoping for sunshine and swimming and camping and friends and family and camp fires. Send us all the good thoughts!