Donating Sloths to MD Anderson 2/12/18

Robbie donated sloths from the Sloth Sanctuary to the Sarcoma Center at MD Anderson today. The sloths were given to Robbie when we visited the Sloth Sanctuary in Costa Rica. The sarcoma center was happy to receive them and plan to give them out to their younger patients.

The nurses and doctors at the Sarcoma center are like family. We had a rough morning and just being there calmed us down.

Robbie also got to visit the OT/PT area and see some of his former therapists. Normally we are on a tight schedule when we are at MD Anderson, but today we had plenty of time, since he didn’t have any appointments.

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.

Testing Week and House Updates 2/5/18

With testing coming up this week, it is hard to think of anything else and I’m not accomplishing much. I have promised to take Robbie out of the house tomorrow.

We are getting closer to moving into our house. We hope to move in the weekend of the 16th. We still need to hire someone to unload our pods. Robbie’s bedroom and bathroom are the main reason for building He is looking forward to having a shower that he can easily get into without having to pull his leg over a tub.

The builder is trying hard to make Robbie’s bathroom accessible, but unfortunately his team is struggling to understand what we want!! We talked about a roll in shower, but they didn’t do it. They finally got the doorway correct! It took multiple attempts before they finally made it wide enough for a wheelchair. They would fix it and then the next crew would put the wood back in the frame…then fix it again…then put the wood back…then fix…then wood…. I finally gave up and told Jim he would have to fix it, when by some miracle they left it correct. The home is beautiful and I know we will love it. It is just the little things can make you crazy!

More Lung Updates and Afternoon at the Zoo 1/10/18

More lung updates/ Clarifications

I only posted part of the lung report yesterday. The rest I wanted to clarify from his oncologist first. I was going to wait until we see him in a few weeks, but after a sleepless night, I decided, I would contact Dr Ratan today.

They mentioned in the report that they removed a rib and listed the size, color, and it was sent to pathology. They had it listed with the other tumors and wrote that it is “grossly unremarkable”… My mind started racing with the worst possible scenario and so did Jim….hence our restless night. Why did they remove it? Did it look cancerous? Is the cancer spreading? Spreading back to the bones is even worse than the lungs for prognosis.

Well…the rib was removed as part of surgery and there isn’t cancer in his rib and they didn’t expect cancer either. I told Robbie, the surgeon needed one of his ribs to make a wife for him.

Then I wondered if the tumors are 95% living, does that mean, we put our child through months of chemo for nothing! The response was that the chemo did kill some of the tumors, but the remaining tumors were resistant to the chemo.

Afternoon at the Zoo

We spent the afternoon at the zoo. Their sloth is still sick, so we walked around the cat area. Robbie had fun taking pictures of the jaguar, tiger, and lion. It was peaceful and quiet there today. Just what we needed!