5 months out
In support of
Ronan and family
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Ronan and family
It was 5 months ago tomorrow that Ronan and I headed up to the emergency room at Doernbecher Children's Hospital after weeks of worry. It was 5 months ago tomorrow when we were admitted for 20 long days, after hearing the unthinkable. In some ways, these months have flown by because I can't believe it's already November. In other ways, I feel like it's been a lifetime since we started down this road. Bryce and I have the grey hairs to prove it!
We are heading into day 21 of our current phase tomorrow. Ronan will receive a third dose of IV Vincristine and a third (escalating) dose of IV Methotrexate. We had labs done today in Salem to make sure counts were good to go for tomorrow and they are, so up to Portland we go again. So far, he has tolerated this phase really pretty well. I can definitely tell it is taking a toll on him in some ways. His hair is thinning again from the Vincristine. There are dark circles under his eyes. His appetite hasn't been great and we've had to remind him that sometimes fighting cancer means eating when you aren't hungry. He has had some leg pain and a little bit of clumsiness with those feet, especially in the day or two right after Vincristine. He has had some mild fatigue and nausea on the day of and after getting the chemotherapies but overall...it has been okay. His counts have remained fairly steady. He is still playing and has energy to play, which makes us all happy to see.
Other things of note, Ronan's kidney labs continue to hold strong. His bicarb levels have even increased slightly the last few weeks, which is excellent. To explain that a little, a normal CO2 level for his age is about 22-29, and this is one way to measure how well his kidneys are managing his acid-base balance. As a baby, and again after his induction phase of leukemia treatment, his kidneys weren't managing this acid base balance well, causing his body to be a little bit too acidic. This can cause a lot of issues for him in the long term. As a baby, Ronan took medication for this. He got to stop at 1 year old, when his kidneys were managing things better.
Since this summer, after the kidney injury associated with Tumor Lysis Syndrome when we started treatment, dialysis, etc., Ronan has needed to take a med like the one he had as a baby. It is called sodium bicarb (basically capsules of baking soda) three times a day. Even taking that though, his level has been sitting at 24 pretty consistently. A week and a half ago, that number moved to 25 and today was 26. If Ronan can get to a point where he is in the high 20s for his level, consistently, he will get to back off on the bicarb. What that really means though is that his kidneys are managing things better than they were in the last few months. I'm happy to see that number creep up! I'm also in no hurry to remove anything that is helping his kidneys because I want to offer them as much protection as we can moving through treatment! I'm always just so happy to see any happy news for his kidneys.
So, there we are. I know I haven't been updating as much recently but that kind of feels like a good thing. Things have been level and steady and with no emergency events. We haven't had to go to the hospital except for labs on the day before clinic, and on clinic days for chemo. We are still seeing some behaviors at home and we work through those, both with Ronan, and with Jack. All four of us are now in counseling and it's new but it's good I think.
Ronan kicked butt in his jogathon! He has been able to attend school a fair amount and we have finally taken some steps forward on the tutor he is supposed to have when he can't go. She has officially been extended an offer, and we are starting to things really lined up for him. I fear him falling behind because I know him and I know how discouraging that would be for him. So, I'm relieved things are moving. There will be periods coming up we know he likely won't be able to go for several weeks, so I have been stressing about figuring this all out. I'm so thankful that the wonderful sitter we had all last year is actually a licensed teacher and that she's available again this year and is working with us! These things that seem to have just happened and then helped us in this situation seem worth noticing and being thankful for.
Currently, Ronan's school and others in his district are actually on strike! It started this Tuesday after months of attempted mediation with the district. Ronan has been fortunate to have amazing teachers so far and we full stand behind them! The teachers here are asking for safer staffing, better class sizes, adequate prep time, and more fair wages. These are all things that benefit our schools and our kids! It was truly horrible weather the last two days, windy, and sopping wet. The teachers are all out there in it picketing! I hope it gets resolved soon and the district comes around.
What else is new for us? We had a fabulous Halloween. It was gloriously normal feeling, so much so that I cried happy tears about all the happy chaos. Ronan got to attend festivities at school as an adorable sea turtle. The rain stopped just in time for night-time fun. The friends we normally go with came over. We ate Jack-O-Lantern pizza and had a frenzied chaotic get everybody in their costumes time, as the kids were so antsy to get out the door. We all got into our Harry Potter costumes and got out the door. All the kids had it dialed in this year and had SO much fun. We ended the night with Nightmare Before Christmas. It was pretty close to perfect, and the boys woke up the next morning planning their costumes for next year!
We got family photos done a few weeks ago. We had planned to get them done early summer and of course we didn’t. It felt a little strange to do it now but also strange not to? I’m so glad we did though, because they turned out really great! We even got some good ones with our Tucker boy. Grammy and Grandpa are back in town and it’s been nice having them around again. They got themselves a new home away from home and the boys already enjoyed a sleepover!
We got a short visit from my bestoe all the way from South Dakota. It was much too short but I felt some of the lightest moments I’ve had in a while with her here. She had never gotten to meet Jack before and hadn’t seen Ronan since he was a little
blondie toddler. It was really nice to get a little bestoe time in.
We also made some new friends in the cancer world this week. Other parents of little cancer warriors going through the trenches…it’s both a lifeline of a connection and a heartache to hear their stories. I find myself thinking of their warriors often. Our friends from this summer inch closer to a big milestone post bone marrow transplant and I love hearing their happy updates.
We got acquainted with a cancer survivor, a victor as he says. He has turned his hard won victory into a cause for other families. This week, he held a little fundraiser for Ronan and got him a really cool drumstick signed by a great band, Rain City Drive. I don’t recommend ever joining this cancer club but you do get some cool opportunities when you’re forced in! Thankful for those little bright lights on this long road!
Please continue sending Ronan your positive thoughts, wishes, love, and prayers. Third doses tomorrow. 4th doses and an LP with IT chemo in a couple of weeks. 5th doses 10 days after that and then a break before admission for Round 2 of Blina. Everything is pending counts and tolerance and we hope for that to continue to go well. ♥️ Ronan’s little body is so strong and his mind and heart even more so. He constantly adjusts to the things being asked of him in continually impressive grown up ways! He has become such a good little advocate for himself and it is both heartbreaking and something I’m so insanely proud of him for. 🥹
Today, I felt a little familiar sadness creep in. It is the day we lost GG, and I still can’t believe it’s been 8 years. I like to think she is cheering Ronan on from wherever she is, among the stars. ⭐️ We keep moving forward but every day is one day closer to being through this hard chapter!
We are heading into day 21 of our current phase tomorrow. Ronan will receive a third dose of IV Vincristine and a third (escalating) dose of IV Methotrexate. We had labs done today in Salem to make sure counts were good to go for tomorrow and they are, so up to Portland we go again. So far, he has tolerated this phase really pretty well. I can definitely tell it is taking a toll on him in some ways. His hair is thinning again from the Vincristine. There are dark circles under his eyes. His appetite hasn't been great and we've had to remind him that sometimes fighting cancer means eating when you aren't hungry. He has had some leg pain and a little bit of clumsiness with those feet, especially in the day or two right after Vincristine. He has had some mild fatigue and nausea on the day of and after getting the chemotherapies but overall...it has been okay. His counts have remained fairly steady. He is still playing and has energy to play, which makes us all happy to see.
Other things of note, Ronan's kidney labs continue to hold strong. His bicarb levels have even increased slightly the last few weeks, which is excellent. To explain that a little, a normal CO2 level for his age is about 22-29, and this is one way to measure how well his kidneys are managing his acid-base balance. As a baby, and again after his induction phase of leukemia treatment, his kidneys weren't managing this acid base balance well, causing his body to be a little bit too acidic. This can cause a lot of issues for him in the long term. As a baby, Ronan took medication for this. He got to stop at 1 year old, when his kidneys were managing things better.
Since this summer, after the kidney injury associated with Tumor Lysis Syndrome when we started treatment, dialysis, etc., Ronan has needed to take a med like the one he had as a baby. It is called sodium bicarb (basically capsules of baking soda) three times a day. Even taking that though, his level has been sitting at 24 pretty consistently. A week and a half ago, that number moved to 25 and today was 26. If Ronan can get to a point where he is in the high 20s for his level, consistently, he will get to back off on the bicarb. What that really means though is that his kidneys are managing things better than they were in the last few months. I'm happy to see that number creep up! I'm also in no hurry to remove anything that is helping his kidneys because I want to offer them as much protection as we can moving through treatment! I'm always just so happy to see any happy news for his kidneys.
So, there we are. I know I haven't been updating as much recently but that kind of feels like a good thing. Things have been level and steady and with no emergency events. We haven't had to go to the hospital except for labs on the day before clinic, and on clinic days for chemo. We are still seeing some behaviors at home and we work through those, both with Ronan, and with Jack. All four of us are now in counseling and it's new but it's good I think.
Ronan kicked butt in his jogathon! He has been able to attend school a fair amount and we have finally taken some steps forward on the tutor he is supposed to have when he can't go. She has officially been extended an offer, and we are starting to things really lined up for him. I fear him falling behind because I know him and I know how discouraging that would be for him. So, I'm relieved things are moving. There will be periods coming up we know he likely won't be able to go for several weeks, so I have been stressing about figuring this all out. I'm so thankful that the wonderful sitter we had all last year is actually a licensed teacher and that she's available again this year and is working with us! These things that seem to have just happened and then helped us in this situation seem worth noticing and being thankful for.
Currently, Ronan's school and others in his district are actually on strike! It started this Tuesday after months of attempted mediation with the district. Ronan has been fortunate to have amazing teachers so far and we full stand behind them! The teachers here are asking for safer staffing, better class sizes, adequate prep time, and more fair wages. These are all things that benefit our schools and our kids! It was truly horrible weather the last two days, windy, and sopping wet. The teachers are all out there in it picketing! I hope it gets resolved soon and the district comes around.
What else is new for us? We had a fabulous Halloween. It was gloriously normal feeling, so much so that I cried happy tears about all the happy chaos. Ronan got to attend festivities at school as an adorable sea turtle. The rain stopped just in time for night-time fun. The friends we normally go with came over. We ate Jack-O-Lantern pizza and had a frenzied chaotic get everybody in their costumes time, as the kids were so antsy to get out the door. We all got into our Harry Potter costumes and got out the door. All the kids had it dialed in this year and had SO much fun. We ended the night with Nightmare Before Christmas. It was pretty close to perfect, and the boys woke up the next morning planning their costumes for next year!
We got family photos done a few weeks ago. We had planned to get them done early summer and of course we didn’t. It felt a little strange to do it now but also strange not to? I’m so glad we did though, because they turned out really great! We even got some good ones with our Tucker boy. Grammy and Grandpa are back in town and it’s been nice having them around again. They got themselves a new home away from home and the boys already enjoyed a sleepover!
We got a short visit from my bestoe all the way from South Dakota. It was much too short but I felt some of the lightest moments I’ve had in a while with her here. She had never gotten to meet Jack before and hadn’t seen Ronan since he was a little
blondie toddler. It was really nice to get a little bestoe time in.
We also made some new friends in the cancer world this week. Other parents of little cancer warriors going through the trenches…it’s both a lifeline of a connection and a heartache to hear their stories. I find myself thinking of their warriors often. Our friends from this summer inch closer to a big milestone post bone marrow transplant and I love hearing their happy updates.
We got acquainted with a cancer survivor, a victor as he says. He has turned his hard won victory into a cause for other families. This week, he held a little fundraiser for Ronan and got him a really cool drumstick signed by a great band, Rain City Drive. I don’t recommend ever joining this cancer club but you do get some cool opportunities when you’re forced in! Thankful for those little bright lights on this long road!
Please continue sending Ronan your positive thoughts, wishes, love, and prayers. Third doses tomorrow. 4th doses and an LP with IT chemo in a couple of weeks. 5th doses 10 days after that and then a break before admission for Round 2 of Blina. Everything is pending counts and tolerance and we hope for that to continue to go well. ♥️ Ronan’s little body is so strong and his mind and heart even more so. He constantly adjusts to the things being asked of him in continually impressive grown up ways! He has become such a good little advocate for himself and it is both heartbreaking and something I’m so insanely proud of him for. 🥹
Today, I felt a little familiar sadness creep in. It is the day we lost GG, and I still can’t believe it’s been 8 years. I like to think she is cheering Ronan on from wherever she is, among the stars. ⭐️ We keep moving forward but every day is one day closer to being through this hard chapter!
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