Life Update

I think I speak for everyone when I say that I have no idea where the days have gone. Everything seems to blur together anymore. We are already halfway through the third month of the year and almost three months after I turned 30. I went out with a friend shortly after my birthday, and she said to me that 30’s was going to be our year. I think she might be right.

That’s not to say there won’t be hard moments. Life is full of the ups and downs. It’s a roller coaster ride we can’t get off of. No matter how much fun we are having. Or how much we can’t wait to get off.

There is nothing like spending quality time with family and friends. Whether it’s playing outside in the yard with the kids, at home dates with the hubby, a Galentine’s brunch, an afternoon of Bingo, or a night out on the dance floor. Having people in my life that I can connect with, lean on, and make memories with is always a guarantee to boost my mood and overall well-being. The first part of 2025 has been filled with so many new memories that I will cherish forever.

It was a goal of mine and my husband’s that we would be out of debt by the time we turned 30, excluding the house. We were almost able to do this- our only debt by my birthday in December 2024 was one car. That was it. And although we didn’t quite make our goal, I still feel so immensely proud of us for being able to get this far. Not reaching the full goal can’t take away the hard work and dedication we put into getting where we are.

But like most things, we take the bad with the good. We did end up needing to get a new roof. On Mike’s 30th birthday, ironically. We’ve luckily been able to save up a good bit in our emergency fund, but it wasn’t quite enough to cover the roof. So, we decided most of it was going to be financed. And we’ll be trying to pay that down as quickly as possible. Keeping as much as we can in our emergency fund is so important for us with all of Ian’s health issues. We want to save it for things that can’t be done through a loan whenever possible.

We had a span of 48 hours in February that were full of surprises. Ian had his routine MRI on the 17th. On our way down to the hospital, we hit black ice. There were two cars in front of us, one went to the left, the other to the right, and we were unable to avoid hitting one of them.

I'm thankful for Mike's quick thinking in the situation to avoid anyone getting hurt. Had we simply stayed straight and slid, we would have T-boned one of the cars. He was able to get our car to turn completely sideways, and did ultimately hit the person who veered left, but all parties were left physically unharmed. Although both cars sustained significant damage enough that neither was drivable. But we can replace cars. Not people.

I am truly thankful that we were not hurt. I am thankful the other driver was not hurt and was very kind to us. I also have to give a huge thank you to one of the tow truck drivers who took us all the down to Children's hospital to get Ian to his scan. And even though we were late because of the accident, I also have to give a huge thank you to Children's for still taking us instead of making us reschedule. It takes a lot of coordination for scan days because it's the MRI, it's anesthesia, it's oncology, it's the echocardiogram, and neurosurgery to reprogram his shunt. It takes a lot of moving parts to make this day happen and go easy for us. Not only still taking us, but getting us back pretty much right away. And of course our family for all the ways they were willing to step in and help us.

In a world that has a lot of hate and cruelty, we need to be reminded of the stories of kindness. The ones that remind us that there are good people out there.

After a scary morning, we were obviously quite late for our scheduled appointment time. I had called radiology after the accident and asked if it would be okay to come late. There’s a lot of moving parts that go into making Ian’s appointments. The doctor appointment, the MRI, the sedation, the echo, neurosurgery coming in to reprogram his shunt. There are so many moving parts all packed into one day to make our life as easy as possible. They said it was okay, but that we may have to wait, which I was completely understanding of. But they didn’t make us wait. We were actually taken right back, and the rest of the day went smoothly.

Over the last couple MRI's, they showed this ring enhancement around his lesions that kept getting brighter and brighter on each scan. While there was no growth on the tumors, which was the main thing to focus on, it was something we all had in the back of our mind to keep an eye on.

The scan showed those ring enhancements have finally decreased. Radiologist also noted that Ian's tumors appeared "collapsed" and his biggest one was "less bulky." After talking with oncology, this all signifies the tumors may be dying!

There is also no signs of growth (if anything, it overall looks better) and no signs of any tumors at risk of bleeding (since we are always on the lookout for that now after the hemorrhage).

Although this signifies the oral treatment Ian recieves is working, like most medications, there are side effects. With this particular one, Ian was recieving an echo along with each scan to monitor his heart. He has continually been borderline with there being an issue, and it has been getting slightly closer to that threshold each time. Because Ian has been on this pill for the standard 2 years at this point, it was decided that he would come off the oral treatment to be given a break and see how he does.

The day after all this happened, I then received an award at work. It’s an award that is given to less than 1% of employees in the organization each year. I was speechless. Still am, honestly.

Working behind-the-scenes of a healthcare organization, I see the other side of things, too. The patient side. The side I’m on a lot with my own son and his many health issues. I think that has put a different outlook in how I approach my job compared to most people. Really, it changes my outlook on life in general. It’s just something you don’t know until you know.

Ian is overall stable right now though. We have been meeting with a service coordinator to get Ian some additional services to help him better navigate life and help us to get him to be as independent as possible, despite his newly diagnosed intellectual disability. He has been having his staring spell seizures, but he hasn’t had a medication adjustment in about a year. As Ian continues to grow, this is completely normal that we will occasionally need to adjust his seizure meds. He has a neurology appointment coming up soon, as well as an appointment with the brain injury clinic, ophthalmology, and a sleep study. After all that, in the beginning of May, we will be going to Disney, thanks to Jamie’s Dream Team- YAY!!! And then somehow, just a couple days after we get home from our trip, Ian is due for his MRI and oncology follow up once again. It feels never ending with appointments.

But when it feels overwhelming, I’m just as easily reminded how blessed we are. Ian doesn’t need to have long stays in the hospitals multiple times a year. Ian is able to go to school with kids in our neighborhood. Ian is here, with us, reminding us to slow down and enjoy the little things in life.

"To everything there is a season, a time for every purpose under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance" Ecclesiastes 3:1-4