MDA and Zoo 6/7/18

Kolache Shoppe in Houston

Houston Zoo

We started the day at the Kolache Shoppe in Houston. Robbie loves going there and often gets the sausage, cheese, and jalapeño pepper Kolache.

Next a full day of tests at MD Anderson. He had bloodwork twice because the first person missed a few things. Also tests on his heart function.

Then we went for a brief zoo trip and saw the adorable red panda and a few other animals. The zoo keepers for the Sloth were just leaving, so we missed seeing Curly today.

Can we go back to the Play-doh Years? 6/5/18

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….. ”

Praying for another miracle. ❤

New Video for Robbie 6/2/18

Here is a short 3 minute video of Robbie from the first half of 2018 as his fight continues. Song is by Katy Perry “Firework”

We are all trying to dig ourselves out of the pit we fell into this week. I wish I could say that we have accomplished this, but it will take time.

Thank you for all your support. ❤

 

 

 

Retreat 6/1/18

Today is a day of retreat and hiding out from the world. We are still waiting for our insurance to approve Robbie’s new chemo medicine.

We plan to take Robbie to see his sisters in Tulsa, Oklahoma in a couple weeks, while Jim and I travel to Wisconsin for my brother’s son’s wedding.

Matthew 19:26 But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”

Test Results = Tears 5/31/18

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.

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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.”

Tests and Sherlock Homes 5/30/18

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.

Star Wars 5/28/18

We took Robbie to see the Star Wars movie with his Aunt Anne today. We all enjoyed the movie. It has been great having Anne here this weekend. She flies back to Wisconsin later today.

Yesterday we got to spend the day with family. My brother Bill and his wife Tammie were in town from Kansas and we also were able to see my niece and nephew and families that are in the area.

Keep praying for good scans this week. Tests on Wednesday and results on Thursday.