Unicorn clouds and superheroes

Hello, friends and fam. I'm starting my second round of AIM chemo today and feeling pretty good. My first hospital stay in early April went really well. The nurses were all very friendly and supportive, I had great superhero visitors (Wonderwoman and Owlette), and my body responded okay to some pretty intense chemo. The most difficult side effect was nausea, but we stayed on top of it with meds. I took regular walks in the hallway with my IV pole (Fiona affectionately named Magnolia). 

The week I was there was the first week they allowed more than one visitor and included kids under 16, so that timing was amazing. We got to have dinner together for 2 nights, and Fiona and Nora made quite the impression in the hallways of the James Cancer Hospital. One evening, as the kids were about to leave Fiona screamed out the window, "Look!! A unicorn!" And sure enough, we saw a unicorn cloud!

Once I got home, days 8-10 were the toughest. I was really fatigued, had nausea, and ended up getting dehydrated. It is astounding how much fluid the body needs after getting chemo for a week. We ended up at the ER after I felt like I was going to pass out, and rather than admitting me to get IV fluids, they were able to just send me home with instructions to drink drink drink. A combo of more fluids and sleeping a lot certainly helped. 

By day 12, I felt better and we decided to drive to Carlisle to see the fam for Easter. We had a wonderful time. We took a daytrip to our family cabin in West Virginia, which I hadn't been to for 5.5 years! The Roost is one of my favorite places in the world, and Fiona and Nora got to see it for the first time. They spent most of the day in a hammock Libba and Stevie had brought.

When we got back to Columbus, I was pretty exhausted by the trip. Liam held things down with the girls, and then Amy and Grace came this past weekend for a soccer tournament. We had a blast. The last 2 days I have felt the most myself. I had heard from other LMS survivors who got this chemo regimen that right as you are really starting to feel better, you get sent back in for more chemo! So that's pretty accurate.

Can you all tell I really like doing the family selfies? 😁

The plan from here is to get through this second round and receive a scan May 12. If the tumors are stable or shrinking, we'll do 4 more rounds of chemo which would wrap up end of July. Then potentially surgery. If the tumors are still growing May 12, we would likely stop this chemo and do surgery sooner. 

Having young kids right now makes this whole experience really difficult. At my hardest moments, I'm thinking about worst case scenarios, and how hard those would be on them. I also realize that they are one of the primary reasons I've been able to manage this. Little kids tend to automatically live in the moment, so that helps me do the same thing. When I do start to feel really sad, despondent, angry, etc. I just think about how I'm not going to let this disease ruin the time I have with my awesome kids, and Liam, and my friends and family. I also know it's okay to feel those negative emotions; I'm just not letting them take over.

We continue to be deeply grateful for all the support we are getting from our community! Thank you, thank you, thank you for the cards, gifts, messages, financial support, and help with meals, rides, kiddo care, etc. We really would not be able to manage this ordeal without the love and support from you all.

xoxox,

Molly