A Happy Week

After I finished writing my last blog update, I looked at the calendar for the upcoming week ahead. Nothing going on. No doctor appointments. I started wondering if I would have anything to write for this week. But boy, did we get lots of good news this past week!

My last post, I talked about Ian’s school working to get him someone to work with him one-on-one. We received the good news this week that the nurse accepted the position, and so now Ian can begin going to school for full days on Tuesday’s, Wednesday’s, and Thursday’s. We will still keep him home on Monday’s and Friday’s since he has outpatient therapy those days, and maybe work our way up to adding those days in. But for now, this is a great start to get Ian acclimated back to a school life environment.

We also got a call from our oncologist office this week that the insurance approved the MEK inhibitor. This is the treatment option we wanted versus chemotherapy. If you understand cancer, you know that it is clumps of cells. In Ian’s case, his mutation type is one that tells protein cells to divide. With a mutation, this causes it to overreact, causing the tumors. The MEK inhibitor, from my understanding, will do the opposite and stunt the rapid dividing of the cells, in turn, will cause Ian’s tumors to remain stable. For us, keeping things stable is a major win. As long as the tumors aren’t growing and taking over his brain, he’ll be able to live with what’s in there now. The MEK inhibitor is also something Ian can take at home, so no weekly infusions and trips to the hospital, it won’t compromise his immune system the way chemo does, and this is something he can be on long term. Because chemo is literally poison being pumped into your body, you can’t be on it for long periods of time. Each one has it’s time limit before you have to stop it. If it doesn’t take the tumors away, you fall at risk for them to start growing once you are off the treatment. As with any medication, this one comes with it’s own warning labels. For example, he will have to get regular echocardiograms now to check his heart. But we feel this is the best choice for Ian. Unfortunately, with these kinds of diagnosis, you have to look at the risk/benefit factor and decide what’s going to be best for you. Or in our case, for our child.

Another exciting thing that happened this week is that Ian will be getting a wish from Make-A-Wish! Ian was allowed up to four wishes, and we had to rate them from the one we wanted most to least. Ian will be getting his number one wish, which was to turn our basement into a playroom for him! We’re hoping this can also serve as a game room or hangout spot for Gabby and her friends since she has been through a lot with this, too. We are currently working on figuring out with the office what exactly we want and what they will handle. But we’re really excited for both of our kids to be able to have this space.

I know I talk a lot about Ian with my blog, but Gabby has some things worth celebrating as well. She’s been keeping up with her duties in the National Junior Honors Society, which is amazing to see. I’m very proud of her for keeping her grades up, volunteering, and just being the kind girl she is at heart. Now, she has another extracurricular to add to her list- She made the middle school girls’ basketball team! If you know us, you know MIke and I had Gabby when we were only 15. Gab is now 12, and I have talked pretty extensively about how I would like her to break that cycle. I was never involved with anything in school. I didn’t have high self-confidence. Gabby is very sure of herself and what she will and will not tolerate at such a young age. I’m hopeful we are continuing on the track to break the cycle of teen pregnancy in my family. Mike and I are very proud of her.

I found so many things to be grateful for this week. So many things that showed positivity in my life. Things that just made me happy. The day Ian woke up at 2:30 AM ready to play, I was just happy he was home. When he spilled his cereal, but for the first time in his life, spoke in a couple sentences: “I made a mess. I’m sorry. It was an accident.” This made me happy. When miscommunication strikes our marriage, but the willingness on both ends to keep pushing through until we figure things out- this makes me happy. The chance to catch up with an old friend. Sticking to practicing yoga every day. My blog, writing, and journaling. Trying my hand at baking and some cooking. Figure out problems at work. Speaking kindly to myself. Being confident in what I bring to the table, and in myself. A hot cup of coffee in the morning. Food to nourish our bodies. Signs from the Universe. Kindness from strangers. Feeling connected to the world. Our home. Making a life for myself, my family, my kids.

From the little things to the big things. We know all things that go up must come down. I’m sure something will make me feel sad, angry, frustrated, anxious, or a mix of any negative emotion. But I have my things that I can fall back on. My people I can lean into. Myself that holds so much space to feel what I need to feel and then let it go. We can’t fully appreciate the good moments without the bad. So, whatever comes next, I’m ready for it. Because I know it won’t be like that for long.

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