Inhale, Exhale
In support of
Ronan and family
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Ronan and family
Well we are back up at Ronald McDonald House, all set to start Delayed Intensification today. We have been dreading this one for months and I'm not dreading it any less in this moment, but we are anxious to get it over with. Ronan was disappointed to make counts this week, as he wanted another week off. But then he said that he was feeling strong, and he was ready to send the chemo soldiers back in ❤️ So that is what I will be thinking about today and the next several weeks, those really tough chemo soldiers doing a search and destroy for any remaining cancer cells.
To catch everyone up on everything since my last update, Ronan was very excited to get freed from Blina! It was a treatment milestone for sure to cross one more phase of frontline completely off the list! Ronan celebrated by taking an extremely long and hot shower where he danced his tail off to music from Sing and Sing 2 (his favorite soundtrack lately.) Then we all got a chance to celebrate by enjoying a little escape to the mountain, our first vacation style getaway in over 7 months!
We played in the snow, sat in the hot tub, played games with friends, and even had a little celebration for Bryce's birthday since we'll be trying to stay so isolated by then. Everyone enjoyed the change of scenery and the relaxing time, where we all tried to keep cancer as far in the back of our minds as we could. We could not have asked for better weather with full sunshine and cool, crisp air. There was only snow on the top of the mountain so the roads were 100% clear too.
There are strange blessings that find their way to you when you need them most. Of all the Air BNB's we looked at...probably dozens, we picked one that happened to be owned by the sister of one of my closest nursing school friends. It was listed under her husband who I have only met a time or two a long time ago so I didn't recognize him in the little thumbnail picture. They revealed their identity and generously gifted us part of our stay at their cozy cabin, and I bawled my eyes out. What are the odds? This is a terrible club but the generosity we have received and continue to receive as part of it is something else.
I’ve had co-workers ask me about donating PTO to me if I need it recently, which is so thoughtful. Thankfully, I still have a few weeks of Oregon Paid Leave to pull from intermittently as I need it. Have I mentioned how thankful I am for that? As a part-time employee, without that having been available (for the first time in 2023,) I would have been in a much more stressful situation with work and financially. I remember being excited when it passed, but thinking well bummer, I’m already done with any maternity leave but how nice for others. I never knew I’d need it for this but wow on that timing. It was a pain to apply for and get approved and it took weeks, and I hope that process improves. But I am so thankful I wasn’t made to choose between keeping my job and being with my family when I needed to.
There are mind boggling statistics about loss of income during childhood cancer. I personally know people that have lost their jobs or had to give up their jobs to manage it. This is one of those things that goes along with all of this that you can’t be aware of until you are. You have to come to terms with the fact that your child has a life threatening illness, yes, and you also have to figure out all the logistics of treating that and managing that, for the years of treatment required. Most families get this diagnosis for their child in their mid-adult years when they have careers to manage and other children to care for. We have been so fortunate that Bryce’s parents are retired, so are available, and that they’ve been willing to come live in a camper at our house! They are doing that to support us, and help with Jack during a time we may have more unexpected hospital time. We know it hasn’t been easy on them and we are so thankful.
We continue to receive coffee cards and door dash cards and generous donations. The boys had Valentine shirts and beautiful blankets and quilts made for them. Friends watch our dog and neighbors help out with all sorts of things, including tolerating all the extra vehicles at our house all the time. Friends and family keep reaching out to check on us, visit us. Babysitting tutors bring our boys learning and joy on a regular basis. We are so thankful, and all of these things help keep us afloat when things feel really hard. And things still feel pretty hard sometimes, so thank you.
Bryce said that Ronan asked some tough questions yesterday, about his cancer. He asked what would have happened if we didn’t do all this treatment. Bryce explained the mechanics of his leukemia cells in the way his Chemo to the Rescue book explained it. The body began making leukemia cells, which didn’t do any important blood cell jobs but that took up space and made it harder and harder for blood cells to do their work. Then he answered the question, if we didn’t do anything to get rid of the leukemia cells, eventually they would take up so much space that the red and white blood cells, and platelets couldn’t do their jobs any more, and the body would begin to shut down. Ronan asked what happened when the body shut down and Bryce explained that he could have died. He said Ronan took this in, and then made the comment that he was ready to keep fighting.
There is a part of my heart that shatters to realize that Ronan understands the depth of his illness. Honestly, he probably has understood to some level for a while as he was likely asking for confirmation. We’ve explained the mechanics of his illness many times and he is so smart and he has probably been processing all of this for a while before asking. Part of me breaks in knowing he understands that and I hate that I can’t protect him from it. There is also so much pride in how he responded too. He is so tough and has such a wonderful attitude about the hard things that have been thrown his way. He’s had his moments of “this isn’t fair” and he is so right and we let him have those when he needs them, but he also saddles back up to fight, most of the time with very little complaint…My little 80 year old soul in the body of a 7 year old little fighter. I’m also proud of Bryce for answering such a hard question so well. We’ve always tried to be so honest with the kids about things, in a way that still only gave them what they needed to know or were directly asking so we didn’t unnecessarily frighten or worry them. It’s a hard line to walk. I’m so thankful to be walking it with the most caring and wonderful dad and husband.
So that’s the update. We’re still here. Chugging along. Trying to make the most of our free moments, and celebrate the milestones. Gritting our teeth through the hard ones, while juggling life and tough questions. Send us love and luck and prayers as we step into this challenging phase. Go donate some blood. Take joy in the normal little moments. Choose to do something brave. Don’t take normal foregranted. ❤️🩹
To catch everyone up on everything since my last update, Ronan was very excited to get freed from Blina! It was a treatment milestone for sure to cross one more phase of frontline completely off the list! Ronan celebrated by taking an extremely long and hot shower where he danced his tail off to music from Sing and Sing 2 (his favorite soundtrack lately.) Then we all got a chance to celebrate by enjoying a little escape to the mountain, our first vacation style getaway in over 7 months!
We played in the snow, sat in the hot tub, played games with friends, and even had a little celebration for Bryce's birthday since we'll be trying to stay so isolated by then. Everyone enjoyed the change of scenery and the relaxing time, where we all tried to keep cancer as far in the back of our minds as we could. We could not have asked for better weather with full sunshine and cool, crisp air. There was only snow on the top of the mountain so the roads were 100% clear too.
There are strange blessings that find their way to you when you need them most. Of all the Air BNB's we looked at...probably dozens, we picked one that happened to be owned by the sister of one of my closest nursing school friends. It was listed under her husband who I have only met a time or two a long time ago so I didn't recognize him in the little thumbnail picture. They revealed their identity and generously gifted us part of our stay at their cozy cabin, and I bawled my eyes out. What are the odds? This is a terrible club but the generosity we have received and continue to receive as part of it is something else.
I’ve had co-workers ask me about donating PTO to me if I need it recently, which is so thoughtful. Thankfully, I still have a few weeks of Oregon Paid Leave to pull from intermittently as I need it. Have I mentioned how thankful I am for that? As a part-time employee, without that having been available (for the first time in 2023,) I would have been in a much more stressful situation with work and financially. I remember being excited when it passed, but thinking well bummer, I’m already done with any maternity leave but how nice for others. I never knew I’d need it for this but wow on that timing. It was a pain to apply for and get approved and it took weeks, and I hope that process improves. But I am so thankful I wasn’t made to choose between keeping my job and being with my family when I needed to.
There are mind boggling statistics about loss of income during childhood cancer. I personally know people that have lost their jobs or had to give up their jobs to manage it. This is one of those things that goes along with all of this that you can’t be aware of until you are. You have to come to terms with the fact that your child has a life threatening illness, yes, and you also have to figure out all the logistics of treating that and managing that, for the years of treatment required. Most families get this diagnosis for their child in their mid-adult years when they have careers to manage and other children to care for. We have been so fortunate that Bryce’s parents are retired, so are available, and that they’ve been willing to come live in a camper at our house! They are doing that to support us, and help with Jack during a time we may have more unexpected hospital time. We know it hasn’t been easy on them and we are so thankful.
We continue to receive coffee cards and door dash cards and generous donations. The boys had Valentine shirts and beautiful blankets and quilts made for them. Friends watch our dog and neighbors help out with all sorts of things, including tolerating all the extra vehicles at our house all the time. Friends and family keep reaching out to check on us, visit us. Babysitting tutors bring our boys learning and joy on a regular basis. We are so thankful, and all of these things help keep us afloat when things feel really hard. And things still feel pretty hard sometimes, so thank you.
Bryce said that Ronan asked some tough questions yesterday, about his cancer. He asked what would have happened if we didn’t do all this treatment. Bryce explained the mechanics of his leukemia cells in the way his Chemo to the Rescue book explained it. The body began making leukemia cells, which didn’t do any important blood cell jobs but that took up space and made it harder and harder for blood cells to do their work. Then he answered the question, if we didn’t do anything to get rid of the leukemia cells, eventually they would take up so much space that the red and white blood cells, and platelets couldn’t do their jobs any more, and the body would begin to shut down. Ronan asked what happened when the body shut down and Bryce explained that he could have died. He said Ronan took this in, and then made the comment that he was ready to keep fighting.
There is a part of my heart that shatters to realize that Ronan understands the depth of his illness. Honestly, he probably has understood to some level for a while as he was likely asking for confirmation. We’ve explained the mechanics of his illness many times and he is so smart and he has probably been processing all of this for a while before asking. Part of me breaks in knowing he understands that and I hate that I can’t protect him from it. There is also so much pride in how he responded too. He is so tough and has such a wonderful attitude about the hard things that have been thrown his way. He’s had his moments of “this isn’t fair” and he is so right and we let him have those when he needs them, but he also saddles back up to fight, most of the time with very little complaint…My little 80 year old soul in the body of a 7 year old little fighter. I’m also proud of Bryce for answering such a hard question so well. We’ve always tried to be so honest with the kids about things, in a way that still only gave them what they needed to know or were directly asking so we didn’t unnecessarily frighten or worry them. It’s a hard line to walk. I’m so thankful to be walking it with the most caring and wonderful dad and husband.
So that’s the update. We’re still here. Chugging along. Trying to make the most of our free moments, and celebrate the milestones. Gritting our teeth through the hard ones, while juggling life and tough questions. Send us love and luck and prayers as we step into this challenging phase. Go donate some blood. Take joy in the normal little moments. Choose to do something brave. Don’t take normal foregranted. ❤️🩹
Comments
Ken Komoda
Tiffany Dedrick
Linda Brown
Thank you for sharing your wisdom and insights. We carry all of you tenderly