Milestones and Moments
In support of
Ronan and family
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Ronan and family
Round 1 of Blina is complete! Ronan is officially unhooked, his port deaccessed, and he couldn’t be more thrilled about it. He took a long shower tonight complete with loud 80s music and lots of dancing 😂 🥰
We are officially done with 3 phases of frontline treatment. We have 4 phases to go, including round 2 of Blina, likely in late December. We feel better about that one, now knowing what to expect. Round 2 tends to be similar or better than round 1. We are free until next Thursday when Ronan goes to the clinic to begin phase 4. Vincristine, he has had before, it’s the one that made his legs weak and it causes some leg pain in general. He will also get IV methotrexate for the first time. He has had it intrathecal (in his spinal fluid) but not IV. It can be hard on the liver and the kidneys. We won’t know how it affects him until he has it. Some kids sail through this phase, and some kids have a harder time. We will go to the clinic for chemo about every 10 days for 8 weeks. There will be one LP with IT chemo in the middle of it all. We can only hope it goes smoothly.
In the meantime, we are trying to enjoy this little bit of freedom. Ronan has a jogathon at school on Friday and he gets to participate and feels good enough to want to ♥️
We have also done one of our favorites this week, going to the pumpkin patch. AND the boys got to do something really special this week! The boys’ uncle Nick (my awesome brother-in-law) is part of the Idaho National Guard. He told his unit about Ronan’s leukemia, and anbout his affinity for life light, rescues and helicopters…and they’ve been working on getting approval for the special event we got to participate in this week for a while now! They flew all the way here from Idaho in a medevac helicopter which the boys got to watch land. Then they got to get on it, check it out, sit in the pilot seat, ask all the questions, and Ronan even got hooked up to the hoist! As if that weren’t enough, Ronan was given a specially made jacket complete with a patch from their unit, and one with his name on it, dubbing him an Honorary Dustoff Pilot ♥️ He was given a real helmet, worn in Afghanistan, and signed by the crew that visited with us. He also got a really cool bag with another little badge on it. 🥹 Jack was given a Tshirt, a poster and a patch of his own from their unit. It was truly a once in a lifetime experience and gift. 💕 Ronan has been excited to share it with everyone who will listen. We are so thankful to Uncle Nick and his National Guard Unit! It was a total surprise to the boys who knew only that we were being let into the airport to see things land up close, and they were thrilled with JUST that! Also excited that as a last minute surprise, my grandpa made it up to enjoy it with us. He is retired Air Force and really enjoyed it too.
So here we are, overall a really good week! Time with friends and family, awesome experience with the Guard and our fall favorite pumpkin patch, all while feeling good. Plus, completing a cycle of treatment is a huge milestone. It is something to be celebrated. I celebrate it! I also struggle with a huge amount of anxiety because as we celebrate, I am also being torn apart inside by fear of what’s going to come next. How will this next phase go? We still have one of the hardest phases ahead of us, right before maintenance, and completing this also gets us closer to that. I try very hard to take one thing at a time but it’s hard not to look ahead and feel scared and anxious too. Sleeping has been a challenge for me the last couple of nights, which tends to happen when I’m anxious.
My counselor said something a little funny tonight, but it hit right on. She asked if I’d seen Inside Out (which of course, the boys are obsessed with the new second one.) She said she loves those movies because they bring up that every emotion has a place. We can hold space for all of those things at once. I can feel
joy for this milestone and these happy moments as a family. I can also feel scared and worried about what is coming. I can think this experience and some other opportunities that will come our way like Make a Wish are amazing and be thankful, while also wishing with my whole heart we could give them all back if it meant Ronan was healthy. I can be frustrated and exhausted by the boys’ behaviors sometimes right now (even understanding where they come from) AND be so incredibly thankful to have that problem to deal with. I can hold space for all of these things at one time and that’s kind of normal. It doesn’t feel normal but what is normal about any of this?
We are all making our way as best we can. Bryce and I even fit a date for our Anniversary into this week. We had a nice dinner and saw some truly bad stand up comedy 🫣 haha but at least we got out of the house together. Thankful, always, for this wonderful man I married. I couldn’t imagine walking this road without him next to us.
Cheers to a good week AND 9 days off, and infusion free! One day at a time…my mantra on repeat!
We are officially done with 3 phases of frontline treatment. We have 4 phases to go, including round 2 of Blina, likely in late December. We feel better about that one, now knowing what to expect. Round 2 tends to be similar or better than round 1. We are free until next Thursday when Ronan goes to the clinic to begin phase 4. Vincristine, he has had before, it’s the one that made his legs weak and it causes some leg pain in general. He will also get IV methotrexate for the first time. He has had it intrathecal (in his spinal fluid) but not IV. It can be hard on the liver and the kidneys. We won’t know how it affects him until he has it. Some kids sail through this phase, and some kids have a harder time. We will go to the clinic for chemo about every 10 days for 8 weeks. There will be one LP with IT chemo in the middle of it all. We can only hope it goes smoothly.
In the meantime, we are trying to enjoy this little bit of freedom. Ronan has a jogathon at school on Friday and he gets to participate and feels good enough to want to ♥️
We have also done one of our favorites this week, going to the pumpkin patch. AND the boys got to do something really special this week! The boys’ uncle Nick (my awesome brother-in-law) is part of the Idaho National Guard. He told his unit about Ronan’s leukemia, and anbout his affinity for life light, rescues and helicopters…and they’ve been working on getting approval for the special event we got to participate in this week for a while now! They flew all the way here from Idaho in a medevac helicopter which the boys got to watch land. Then they got to get on it, check it out, sit in the pilot seat, ask all the questions, and Ronan even got hooked up to the hoist! As if that weren’t enough, Ronan was given a specially made jacket complete with a patch from their unit, and one with his name on it, dubbing him an Honorary Dustoff Pilot ♥️ He was given a real helmet, worn in Afghanistan, and signed by the crew that visited with us. He also got a really cool bag with another little badge on it. 🥹 Jack was given a Tshirt, a poster and a patch of his own from their unit. It was truly a once in a lifetime experience and gift. 💕 Ronan has been excited to share it with everyone who will listen. We are so thankful to Uncle Nick and his National Guard Unit! It was a total surprise to the boys who knew only that we were being let into the airport to see things land up close, and they were thrilled with JUST that! Also excited that as a last minute surprise, my grandpa made it up to enjoy it with us. He is retired Air Force and really enjoyed it too.
So here we are, overall a really good week! Time with friends and family, awesome experience with the Guard and our fall favorite pumpkin patch, all while feeling good. Plus, completing a cycle of treatment is a huge milestone. It is something to be celebrated. I celebrate it! I also struggle with a huge amount of anxiety because as we celebrate, I am also being torn apart inside by fear of what’s going to come next. How will this next phase go? We still have one of the hardest phases ahead of us, right before maintenance, and completing this also gets us closer to that. I try very hard to take one thing at a time but it’s hard not to look ahead and feel scared and anxious too. Sleeping has been a challenge for me the last couple of nights, which tends to happen when I’m anxious.
My counselor said something a little funny tonight, but it hit right on. She asked if I’d seen Inside Out (which of course, the boys are obsessed with the new second one.) She said she loves those movies because they bring up that every emotion has a place. We can hold space for all of those things at once. I can feel
joy for this milestone and these happy moments as a family. I can also feel scared and worried about what is coming. I can think this experience and some other opportunities that will come our way like Make a Wish are amazing and be thankful, while also wishing with my whole heart we could give them all back if it meant Ronan was healthy. I can be frustrated and exhausted by the boys’ behaviors sometimes right now (even understanding where they come from) AND be so incredibly thankful to have that problem to deal with. I can hold space for all of these things at one time and that’s kind of normal. It doesn’t feel normal but what is normal about any of this?
We are all making our way as best we can. Bryce and I even fit a date for our Anniversary into this week. We had a nice dinner and saw some truly bad stand up comedy 🫣 haha but at least we got out of the house together. Thankful, always, for this wonderful man I married. I couldn’t imagine walking this road without him next to us.
Cheers to a good week AND 9 days off, and infusion free! One day at a time…my mantra on repeat!
Comments
Stacey McLaughlin
Smcmahon
Linda Brown
I’m amazed at how full you have been able to say yes to life along with all of it. I often have tried to tell people that 1 of the gifts of working in pediatrics is that I got to see young parents (you could be my daughter 🤗) pull out all the stops for their kids - and I am reminded that I could “up my game” as well. Thank you for sharing and inspiring me today.
Lots of love to all- linda