Marfan Syndrome 2/11/18

February is heart month and also Marfan Syndrome Awareness month. If you are like me, before a few years ago I heard of never heard of Marfan Syndrome. There are a variety of signs and they vary from person to person, but the area that impacts everyone with Marfan Syndrome is their heart, which can easily go undiagnosed until it is too late causing an aortic dissection. Luckily, Robbie had a very smart pediatrician when we moved to Oklahoma that noticed he had some of the signs and encouraged us to check it out. We have also attended a few family conferences, which I highly recommend.

Here is a link to the National Marfan Syndrome website for more information. Know the signs and save a life. Robbie was on the cover a few years ago. I just noticed he is still on this page if you scroll down. https://www.marfan.org/about

Tigers 2/9/18

We went to the zoo today, so Robbie could take pictures. I’d like to hibernate from the world this week, but the zoo is a better choice. Robbie has so much fun taking pictures of the animals. I plan to enlarge some of his pictures for his new room after we move.

Thank you for all your support. It means a lot to us. ❤ We take a step forward and a few backward.

MD Anderson Updates 2/8/18

Robbie zip lining on our last trip.

We received several updates today.

The Good news first: The lung that had surgery is currently not showing any cancer activity. There isn’t any cancer activity anywhere else in his body beyond the lung that didn’t have surgery. Slow tumor growth in the tumors in the other lung and an additional tumor. The downside is for the amount of chemo since last June, you would hope for no living cancer.

Bad News: His doctor continues to think his cancer is terminal. This is the first time Robbie has heard the doctor say this and he is understandably concerned and upset. We keep hoping that there will be a breakthrough with a new treatment. Who really knows what is ahead for any of us.

Current Plan for Treatment: Robbie didn’t qualify for the clinical study. His Dr will monitor Robbie and scan monthly for cancer. When his tumors become problematic or a certain size, he will put him into one of the other trials and/or lung surgery. His doctor’s goal is quality of life. (since treatment makes Robbie very sick) I’m on the fence on whether I think the “wait and see” method is best, but I do agree that quality of life is important. I also don’t want to do anything that will cause more harm than good. I need to do more research.

We are not giving up as the fight continues. We really appreciate everyone’s support. ❤

Sleepless in Houston 2/7/18

This is today’s bible verse on my Bible app. It is very appropriate for this week and something I need to remember. It was a restless night for everyone. I finally went into our living room and maybe slept a couple hours.

I told myself that worrying is wasting my time and won’t impact Robbie’s tests today or the results tomorrow. I tried everything, but my mind kept running all the possibilities.

Pray for Robbie this week that his tests go well and his team of doctors have a plan of what to do next.

Pray also for our upcoming move next weekend. The first wave of reality was selling our home in Oklahoma last October, but closing on a house next week makes it more final. I really miss my friends, teaching at Centennial, and being near our girls. We are very thankful Jim’s work continues to support him working remotely.