Robbie’s sloth waiting for him to come back from bloodwork
I took Robbie to MD Anderson yesterday for bloodwork and to see Dr Ratan. What Robbie thought were bug bites are actually blisters caused by the chemo he is taking. So far only a few, but this can become a problem for some people. His blood pressure is up, which is normally very low….another side effect. His bloodwork so far is looking okay except his platelets have started a slow decline. We doubled his chemo drug and so far the only additional side effect is being tired. He will have scans the end of July to see if the new drug is working. Keep praying for him.
He received a couple cute birthday cards in the mail yesterday, which he enjoyed. We also visited the Museum of Natural Science after his doctor appointments. He didn’t last too long because he was so tired, but he had fun walking around by the dinosaurs. The museum was setting up tables and food for a big event. Robbie said he wishes he could rent the museum and have a party. I told him sorry, but that isn’t in the Birthday budget.
Lynn and Robbie stopped at the Dallas Aquarium on their way back to Houston. The sloths at the Dallas Aquarium are from the Sloth Sanctuary in Costa Rica. They got back to Houston last night.
Robbie started two chemo pills a day today and he will see Dr Ratan this afternoon.
This weekend Robbie turns 25. If you are able to send a card. (23622 Messina Harbor Dr. Katy, TX. 77493)
Robbie got a letter from a Church in Belmont, WI yesterday, which was so kind. The men’s prayer breakfast group is praying for Robbie. Many familiar last names from families that I know from growing up in Wisconsin. My family lived between Belmont and Platteville, WI on a Dairy farm near the Big M. The “M” stands for the old mining college that is now part of UW Platteville.
First….a sweet child singing about Peace in Christ. Keep praying for a miracle for Robbie.
Sadly, we learned today that his cancer has continued to grow in his lungs and new tumors have started in both lungs. The immunotherapy that has helped so many people, had no impact on his cancer. The news is devastating to all of us, especially for Robbie.
They stopped the clinical trial and for now he will start taking a chemo drug that for some people has slowed the growth of new cancer, but rarely kills osteosarcoma. The drug is called Pazopanib and it is in pill form. It will take time to get insurance approval since the estimated cost is $10,000 per month.
They will do scans again in 6-8 weeks. At that point, he will either continue the new chemo drug or jump to something more toxic. The fear of jumping to another harsh chemo is that if it doesn’t work, it could destroy the rest of his bone marrow, taking most of the other options with it. This could be next in line or another clinical trial. Unfortunately the current clinical trials for osteosarcoma are mostly at stage 1, so they don’t have enough data to know if you are going down the right track or wasting time.
He has a wonderful doctor and nurses at the sarcoma center and they are also sad with the latest news. We spent over an hour together today as we talked about the latest tests results and what possible steps ahead.
Matthew 19:26 New King James Version (NKJV)
But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”
Robbie and I started the day at MD Anderson for scans to check for the progress of the current treatment. We are all on edge until we get the results tomorrow. I’m making Jim come along tomorrow in case it is bad news. Keep praying.
Next, we went to the Sherlock Homes exhibit at the Natural Science museum. It was an interesting exhibit along with a crime scene with clues and old techniques for figuring out the crime. A blood splatter machine, shoe stepping machine with different shoes, poisons, poison plants, and a variety of other displays. It was one way to keep our minds off Cancer for the afternoon.
Robbie got some much needed sleep while he received IV fluids this afternoon. We should all get more sleep tonight.
We will definitely need a back up plan for the next round, so if it runs late, we will either have Jim along or stay in a hotel overnight. I can’t trust myself to stay awake after 11pm to drive across Houston to Katy.
We spent the afternoon at the museum between appointments. We had a wonderful afternoon together.
Tonight we are at MD Anderson for his next round of immunotherapy. They were supposed to start sooner, but it is after 6pm and they haven’t started his treatment yet. It takes at least 3 hours, so it is going to be a late drive home.
Robbie’s bloodwork is too low for treatment today.
Since he couldn’t have chemo, we went to the Houston Zoo. Curly had a few tours today, so when they got done, they let Robbie visit Curly. While we waited, we visited the gift shop and Robbie got a cute red panda. The red panda is another favorite that we usually visit when we are at the zoo. He hasn’t had a behind the scenes tour yet, but he likes seeing them.