Boston's Brigade & Layla Strong

Boston's Brigade & Layla Strong Follow along on Boston's journey living with a congenital heart defect. And Layla's with leukemia

02/26/2026

Maybe one day we will be able to make it to Bostons cardiologist appointment in Cincinnati 🫣.
His first appointment was the week of the big snow storm so we had to reschedule. It was supposed to be today. When they called to go over instructions yesterday I let them know he currently has a cold and after going through his symptoms they decided they could not do his sedated echo, and couldn't for 4 weeks from the start of symptoms. I had them ask his cardiologist if she wanted to try without sedation or just wait the 4 weeks. She opted to wait. But if he gets sick again we have to push that date again. So we will be locked inside a plastic bubble until then 😜.

And just to keep life interesting, we had the most chaotic path to get this info. Yesterday they never called me with instructions, so about 4 I called them. Found out somehow they only changed my phone number on Laylas account. Bostons still had my old number, so I'm sure they called my old number to give instructions. I just had the receptionist, so when I asked about med holds she had to get a nurse who had to call me back. By this time I am now at dance, so I had to keep running out to answer the phone. Once I got the nurse I realized I hadn't even told them about his cold, and she let me know right away that giving sedation with a respiratory illness is not safe and they would not be doing it. I asked if they wanted us to still come and do a regular echo and checkup and they had to call his cardiologist and call me back again. Once we found out we wouldn't be going we had to cancel all our plans for the kids for the night. My mom had gone with me to dance with the babies and we were going to leave for Cincinnati when I got done teaching at 6:15. My dad was going to come at 6:45 and get Layla to help her with homework, and then keep Layla and graysen for the night. And my mother in law was going to come at 8:45 to get auburn from class and keep her for the night. I left it up to my parents to decide how we were going to get everyone home without making the babies wait at the studio until 8:45, and went back into class. They made the plan and I was just there for it (which is not in my nature 🤣). it's Always chaos and excitement when it involves our family

02/22/2026

The life of a medical mom never rests... This morning I called in to get Bostons prescription refilled. A few hours later I called back to see if it was ready before I went over there. They let me know he was out of refills (even though I just called his doctor last month to get refills, but I guess they only gave us 1 month.) they had called his doctor to get a refill, but since it was Saturday they weren't going to get an answer at clinic. I called the cardiologist on call on the floor and got a refill sent to a different pharmacy (as ours was now closed for the weekend). Called that pharmacy to see if it was ready and they didn't have it in stock and couldn't get it until March. I proceeded to call 5 other pharmacies to find it in stock somewhere, or someone that could get it in tomorrow, as I only had enough to get through tomorrow night. I finally found one in stock, but they didn't have the full amount needed. But they can at least get me enough to get through.
It ended up taking up the whole day, almost exclusively. From 12:30 on I was on the phone with the hospital, with pharmacies.. and of course each pharmacy wants to set up a profile including insurance info before they can tell me if it's in stock. Just glad I was able to find it somewhere local.. I was starting to worry I was going to have to make a trip to Cincinnati just to get it

Today this wild child turns 2 🎈🎂🎁🎉My Ellisyn Iris ❤️
02/09/2026

Today this wild child turns 2 🎈🎂🎁🎉

My Ellisyn Iris ❤️

02/07/2026

Today I met with the hospital and got results from Laylas neuropsych testing. I don't want to go into all the details just yet, at least until we meet with the school and go over results with them. But once we've done that I will. But it did show 2 areas of the brain that seemed to be damaged from treatment. As much as I hated to hear that, it did help explain some of the things we see with Layla, and the reason we asked for the testing in the first place. With this information we can make some minor changes at home and at school, and we should see an improvement. Most of it will just take some getting used to as we adopt it into daily life. Just glad to have some answers.
It's just further proof cancer treatment doesn't stop just because they're done taking chemo. Her life is forever altered, and this is just one more way. This is a new season in her battle, but I have no doubt she will kick butt, just like she always has

This is peak living ❤️
01/28/2026

This is peak living ❤️

Today I took Layla to her oncology appointment, and we took 8 more bags with us. Layla carefully picked each of these ba...
01/23/2026

Today I took Layla to her oncology appointment, and we took 8 more bags with us. Layla carefully picked each of these bags all on her own! I love hearing her talk through the thought and intention behind each bag!

We were supposed to come down yesterday for her monthly oncology appointment, and then stay the night and do her neurops...
01/16/2026

We were supposed to come down yesterday for her monthly oncology appointment, and then stay the night and do her neuropsych testing today. The snow messed up our plans, so we didn't make her oncology appointment. But we did leave last night after AJ got off work and came down for her testing.
The neuropsych testing will show us if there are any deficits in her thinking or memory caused by her treatment. She's considered in the highest risk because on top of the chemo, she also did radiation to her skull. We should have results in a couple weeks and we will review with this team to decide next steps.
We did get to stay at Ronald McDonald house, and of course had to bring some pop tabs down. We weighed them and it was almost 19 pounds!
Next Thursday we will have to go down for her oncology visit. And then by luck, the following week is Bostons 6 month cardiology visit. Lucky me that I get to go 3 weeks in a row 🙄

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Fort Jennings, OH
45844

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+14192042944

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