This childhood cancer journey is a crazy one. I feel like we are constantly re-grieving pieces of it even as we celebrate moving forward. It had been a while since we have had to be admitted (thankfully.) I found myself noticing rooms as we walked the halls. 

We stayed in that room when we first came in. We got confirmation of leukemia and what kind, and told Ronan about his cancer right there. Oh, we stayed in that room, after the PICU transfer back to the unit. We dealt with scary high blood sugars and watched pieces of Ronan disappear over the course of two weeks in that room. That was our first fever and neutropenia room, where we had to be on isolation for the first time. That is where he asked me to shave his hair. That was our second fever and neutropenia room, after our first ambulance ride. It’s also where we learned he was MRD negative after induction. Oh, and that room is where we stayed after his seizure, for the first Blina admit, etc. It’s like a visual road map of sorts. It is decorated beautifully right now, very festive. They also haven’t been fussy about letting us bring in a fake little tree and making our room feel festive which is so appreciated. 

We are struck deeply this visit by seeing other families we may not know well, but have seen multiple times along the way, either here or at RMH. Some of them have not seen as much progress as we all would hope and it hurts to learn it. Other faces are missing. Are they home? We hope so. How have things progressed for them? Other faces are new. I’m so sorry. Welcome to the best worst club ever...I wish you weren’t here, too. Having friends in this little world is so wonderful. But boy do you hope hard for these other kids, other families. You feel their set backs and their victories. It is a double edged sword.

Ronald McDonald House feels familiar and comforting. The level of wonderful that organization is, cannot be overstated. Switching off with Bryce when we have a hospital stay means a real shower, a place to do laundry, to just be away from here for a minute. Being able to come up the night before admission means Jack could come a night and that both boys could play together there. They got to go “shopping” in the Christmas store when we arrived. They raced around on wiggle cars, and Jack soaked up as many snuggles as possible before he went home and we came here.

Another hospital stay almost down. We are hopefully through the worst of the side effects that come along with starting Blina, again. Ronan had overall less symptoms than the first time we started it. He had some fevers but lower grade than last time. He had the shakes but again, less severely. He had lots of nausea but blood pressures were stable this time, which is very good. It meant we didn’t need to pause the infusion a length of time, or have steroids. He got hooked up on Friday afternoon so he will stay hooked up until January 16th. We are getting out of here tomorrow and it can’t come soon enough! He was feeling normalish today so we were all climbing the walls a bit. It’s quiet here on the weekend with no play room or art therapy or music or Bingo to keep us busy. He was busy making inventions out of kitchen supplies and drawing, or playing the game of Uno we begged him to play but not busy enough. He is ready to be free of the IV pole and out of here. 

It has been a good stay overall though. Ronan has made a name for himself with some of the nurses and doctors we’ve known for a while now! We also notice his drawing decorating the nurses’ station from previous admits. He has taught them all about scout elves this time. It’s really nice when people we know swing by just to say hi and see him. My favorite unit doctor that was with us a lot in some of Ronan’s sickest days was working on the unit tonight and it warmed my heart immensely to see her. Ronan doesn’t even remember her because of how ill he was, but she was incredible. When she was on overnight in the beginning, I felt very secure that the best possible decisions would be made even in the wee hours of the morning. She was always very present at the bedside explaining things and not afraid to order tests or change things if it needed to happen. The staff thinks as highly of her, so I know she must be that way for everyone. She was dressed very elf like tonight and stopped in to see Ronan and see his elf and chat with us. 🥰 

Ronan also completed his half marathon! Every child on this unit is assigned a portion of a marathon based on age and diagnosis when they get here. When he completes his assigned distance, he earns a pair of Nike shoes. The staff also held up a finish line and played the Rocky theme song and cheered on his last lap. He was given a little medal that says Heidi’s Marathon on the front and 10S Strong on the back. 🥹 He was SO proud of himself. He wants to finish the other half and asked for a new tracker haha. We admire his tenacity but we sure hope we aren’t here enough going forward for him to complete it, lol. What a cool thing though to come out of these many days and nights on the unit. He’s such a little tough guy. 

As far as Blina goes, there are some challenges in managing the tubing at home, like figuring out bathing and being mindful of it during sleep and crazy Ronan activity. Weekly dressing changes and re-accesses are stressful for him too. We also hope to have no accidental disconnections or leaking or anything, but hopefully not! There are kinks to iron out with this medication and all the moving parts. We are literally helping the oncology teams to do so as we go. We are some of the first group to be offered this medication as part of standard treatment, without it being randomized in the clinical trials, or being relapsed. The data is so strong though, so inconvenience aside, we are thankful to have it included in his treatment plan and to have the added percent chance of full remission with no relapse! Being a type of immunotherapy and less toxic than everything else being put into his body these last few months, we hope it will help his body recover really well before we start the next phase, which will be intense and hard on him. We are hoping he gets 4 weeks of feeling good on the Blina. We are also hoping to fit in a couple of nights somewhere not too far away from Portland that has snow on the week or two between Blina and the next phase. The kids are dying to play in the snow. That being said, we hope we do that and then the weather cooperates when we are in our intense phase, as factoring in weather to our distance from this hospital stresses me out in a big way. 

That’s about it for now. Home tomorrow! Home to Jack! He has been such a strong little guy through everything. It’s so hard for him to be away and the level of understanding and grace he has about it at 4 years old is amazing. Home to Jack and Christmas Eve and cookie making and Christmas morning ♥️ I went overboard this year and though Bryce would say I always do, I feel like if ever there was a year to go overboard…this is it. Right? 

This has been the hardest year of our lives, and yet we are acutely aware of those who have had it worse. We think so often of others we love who are suffering and fighting their own fight. Do not take time or health foregranted. Hold your loved ones extra tight, I know we will be. 

Thank you to everyone who continues to offer love and support to us. You are an invaluable part of this journey for us. Merry Christmas ❤️