I took Robbie to Houston’s Natural Science Museum and Butterfly Center today. His friend is here for a few days. They went to the University of Tulsa together. The boys had fun exploring the museum. We noticed a giant sloth in the dinosaur area today, that we have missed in all our trips. He also had fun taking pictures of butterflies. We had planned a quick trip to the zoo too, but Robbie was tired and it is so hot out today, that I really didn’t want to go either.
The end of next week he has his next set of scans. I’m glad we kept busy today. Yesterday I had too much time to think about it, which wasn’t a very productive idea.
Lets go back to the Play-doh years when our greatest concern was dealing with crazy sensory issues.
Robbie’s latest scans finally showed up in his online medical records, so we could read them. Lynn wrote ….at least they said his pancreas is unremarkable.
Other than the original diagnosis, this is the hardest fight yet. I’m not coping very well.
So many times he has amazed everyone by beating the odds.
He started school at age 3 in early childhood special ed. He not only caught up to his peers, but a few years later he had passed them.
His math skills have always been amazing along with his sense of humor.
Robbie’s sisters were into drama in high school and sometimes talked with an British accent as a joke. I got a call from Robbie’s 3rd grade teacher. “I don’t know what is wrong, but your son is answering all his math questions with a British accent….. ”
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’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.
Lynn took Robbie to his morning appointment at MD Anderson for another thyroid test. Then they planned to go to the zoo, but Robbie was feeling sick to his stomach. Hopefully he will feel well enough for me to take him on Friday.
I stayed home to study for the Texas teacher tests. A couple more days before the first test. It makes me nervous! I also completed paperwork for Katy Schools.
Lynn is here for a couple more days. She drove and spent time with Robbie between his appointments. He is doing better today, but still very tired. His rash is almost gone and no fever today. He had a few appointments today including scanning his thyroid. Tomorrow they will scan his thyroid again and then the kids plan to go to the zoo.
We started the day at MD Anderson. I’ve been concerned about Robbie’s ears and we don’t live near our ear doctor anymore. We met a very smart young ENT and he told us several things about Robbie’s ears and took amazing pictures of his ear drums. Robbie also had a hearing test. His hearing loss is more significant than it was a year ago and also there is damage to his bones & ear drum on one side. We will need to find some one that services Resound hearing aids, so they can be adjusted.
The damage is caused by the chemo drug, Cisplatin, that he took for several months when he first had treatment in 2015-2016. This drug is also believed to be the drug that damaged his bone marrow and caused the non stop loud ringing in his ears. It did a good job against the cancer too, but unfortunately it is too toxic to his system to ever use again.
Next I took the kids to the Aquarium for lunch and a tour of the aquarium. Robbie loved taking pictures and Ruth had a good time too. We all fell asleep when we got home. It has been a hectic couple weeks!