October
In support of
Ronan and family
View Support Registry
Ronan and family
This has always been my favorite month. I love the change in season. There is a crispness in the air, especially in the morning that feels like a fresh start. I love the cool sunny days. I love that it’s the beginning of the holiday season. It’s the month we chose to get married beneath the leaves.
I'm trying to shake off some of the storm clouds I’ve been living under the last few weeks and embrace this season I love. We survived the summer! We are over half way through phase 3 with 4 phases left to go in frontline treatment. It is still a long road, and sometimes it feels a little insurmountable. The last couple of weeks, I have struggled with what feels like the unfairness of it all. Our little boy has dealt with so much in his short life. I wish I could take on just any of it for him. It is so damn hard to watch someone you love suffer, especially your child. Lately, I feel like I’m watching my husband and both my children suffer in different ways, all while barely keeping my own head above water. Cancer is brutal. Like I said…storm clouds. They aren’t gone and I’m definitely not feeling glass half full, but I am trying to embrace October.
Ronan is over half way through his blinatumomab infusion. It was a little bit rough for the first 24 hours, but it has been unexciting since and we are so thankful. Initially, he spiked a big fever, had nausea and vomiting, and some lower blood pressures. He got a few hour break and a second dose of steroids and that seemed to resolve the issues. He is still taking kepra (the seizure medication) for the rest of this cycle. He is also no longer taking amlodipine (blood pressure medication.) They took him off of it when he developed the hypotension at the start of the infusion and so far, so good for normal BP’s since.
Life with Blina has been somewhat annoying, but generally not that bad to deal with. The hardest part for Ronan is the weekly de-access and re-access of his port. It’s been interesting to work with home infusion, pretty great actually. Our nurse is pretty great. We have had only one really big issue with the infusion itself so far and that was a disconnection this week. It was a pain but only in an inconvenience kind of way. The best part of Blina so far is that after the initial ick, Ronan feels good on it! His counts also jumped up to a happy place last week and this week he has gotten to attend two whole days of school!
This has been SO good for him. He has been lighter these last two days. Tired! But lighter. And it has been wonderful for Jack too, lots of one on one time with me during the day. He’s been hungry for that attention. It’s also offered me some breathing room. It is nerve wracking to send him. I feel anxious when I’m away from him. But a break from constant fighting between brothers who are fighting their own emotional battles…breathing room. The boys have played so much better in the afternoons the last two days too. The school has been communicative and supportive and that has helped with my anxiousness. We are still working on getting a tutor for days Ronan can’t attend school in person but it might just be working out soon. In the meantime, we are hoping labs stay good and he can keep going to school!
What else? We are gearing up for Halloween, a favorite. Ronan decided we should all do a Harry Potter costumes this year. He talked Jack into being a dragon to get him on board. They are pretty pumped. We also got out all the Halloween decor last Sunday and added a couple new things including a big skeleton (not the giant awesome one) but still a cool 7 foot one that made the boys very happy. A neighbor on the next block that usually decked out their house moved and the boys were so bummed…so we had to up our game just a little and cheer them up. We also went apple picking.
We are done with Blina on the 15th. Ronan will get a week ish off pending counts before beginning the next phase. We are so thankful Blina went well. This medication increases Ronan’s odds of beating this thing AND decreases his risk of relapse. It was technically approved for use in frontline patients meeting criteria on the day Ronan was diagnosed. There is enough of an optimist in me to find that to be meaningful.
Thank you to those of you who continue to check in and send coffee cards and leave thoughtful comments. Thank you to new friends who understand what this is like and can relate. Thank you to old friends who have been here, faithfully trying to help us through it. Thank you to all the family members that have acted as unshakeable supports. This road can feel so long and lonely. Keep the wishes and prayers and good stuff coming!
I'm trying to shake off some of the storm clouds I’ve been living under the last few weeks and embrace this season I love. We survived the summer! We are over half way through phase 3 with 4 phases left to go in frontline treatment. It is still a long road, and sometimes it feels a little insurmountable. The last couple of weeks, I have struggled with what feels like the unfairness of it all. Our little boy has dealt with so much in his short life. I wish I could take on just any of it for him. It is so damn hard to watch someone you love suffer, especially your child. Lately, I feel like I’m watching my husband and both my children suffer in different ways, all while barely keeping my own head above water. Cancer is brutal. Like I said…storm clouds. They aren’t gone and I’m definitely not feeling glass half full, but I am trying to embrace October.
Ronan is over half way through his blinatumomab infusion. It was a little bit rough for the first 24 hours, but it has been unexciting since and we are so thankful. Initially, he spiked a big fever, had nausea and vomiting, and some lower blood pressures. He got a few hour break and a second dose of steroids and that seemed to resolve the issues. He is still taking kepra (the seizure medication) for the rest of this cycle. He is also no longer taking amlodipine (blood pressure medication.) They took him off of it when he developed the hypotension at the start of the infusion and so far, so good for normal BP’s since.
Life with Blina has been somewhat annoying, but generally not that bad to deal with. The hardest part for Ronan is the weekly de-access and re-access of his port. It’s been interesting to work with home infusion, pretty great actually. Our nurse is pretty great. We have had only one really big issue with the infusion itself so far and that was a disconnection this week. It was a pain but only in an inconvenience kind of way. The best part of Blina so far is that after the initial ick, Ronan feels good on it! His counts also jumped up to a happy place last week and this week he has gotten to attend two whole days of school!
This has been SO good for him. He has been lighter these last two days. Tired! But lighter. And it has been wonderful for Jack too, lots of one on one time with me during the day. He’s been hungry for that attention. It’s also offered me some breathing room. It is nerve wracking to send him. I feel anxious when I’m away from him. But a break from constant fighting between brothers who are fighting their own emotional battles…breathing room. The boys have played so much better in the afternoons the last two days too. The school has been communicative and supportive and that has helped with my anxiousness. We are still working on getting a tutor for days Ronan can’t attend school in person but it might just be working out soon. In the meantime, we are hoping labs stay good and he can keep going to school!
What else? We are gearing up for Halloween, a favorite. Ronan decided we should all do a Harry Potter costumes this year. He talked Jack into being a dragon to get him on board. They are pretty pumped. We also got out all the Halloween decor last Sunday and added a couple new things including a big skeleton (not the giant awesome one) but still a cool 7 foot one that made the boys very happy. A neighbor on the next block that usually decked out their house moved and the boys were so bummed…so we had to up our game just a little and cheer them up. We also went apple picking.
We are done with Blina on the 15th. Ronan will get a week ish off pending counts before beginning the next phase. We are so thankful Blina went well. This medication increases Ronan’s odds of beating this thing AND decreases his risk of relapse. It was technically approved for use in frontline patients meeting criteria on the day Ronan was diagnosed. There is enough of an optimist in me to find that to be meaningful.
Thank you to those of you who continue to check in and send coffee cards and leave thoughtful comments. Thank you to new friends who understand what this is like and can relate. Thank you to old friends who have been here, faithfully trying to help us through it. Thank you to all the family members that have acted as unshakeable supports. This road can feel so long and lonely. Keep the wishes and prayers and good stuff coming!
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Tim Cerny
Rawndee
Tara Sonnenberg
Wendy Barrie-McWhorter