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.”
Here is a picture of the kids playing in the snow when we lived in Iowa. Robbie spent most of today sleeping. He has been running a fever and doesn’t feel very good. His side stopped hurting, so that is good. Any pain that he has, we worry about the cancer spreading. The week of treatment is hard on Robbie and all of us. Thankfully, he always amazes us how he bounces back. I noticed today that he is really looking thin even for Robbie. He has been steadily loosing weight, since he started the immunotherapy.
Thank you for all your support. ❤
Robbie spent the afternoon at MD Anderson in Katy. When he was done, I stopped for treats.
He is feeling sick tonight and is complaining that his rib hurts on his side.
I’m off to visit my new school tomorrow. I’m excited and nervous. I hope to learn more about my position and what age group I will be teaching.
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.
Just like last round, Robbie has a fever, rash, chills, tired, and miserable.
I interviewed in Katy, TX today and they called later and offered me a job. I will be teaching special education in the fall. We went out to eat to celebrate. Robbie wanted to come along, but we should have encouraged him to stay home and rest. I hate seeing him so sick again.
Lynn is here this week and is helping to keep Robbie’s spirits up while he is at MD Anderson during the day.
We learned at his appointment that his thyroid blood counts were 5 times what they should be. The doctor said that normally they put people in the hospital when their blood counts are this off.
Robbie will start medicine tomorrow to help and they will check his blood work again in a few days. The Endocrine Doctor said his thyroid is probably permanently damaged from just the first round of treatment. He said he doesn’t normally see this damage so early in treatment. He will have Robbie’s thyroid scanned on Monday to make sure they treat him correctly. The side effects of his thyroid not functioning correctly can be heart issues and a list of other problems.
Here is a picture of Robbie having Immunotherapy today at MD Anderson. He had a very sweet nurse. Robbie slept most of the afternoon.
We got a call from Anderson tonight and they feel it is critical for us to bring Robbie in tomorrow due to his blood counts for his thyroid from the immunotherapy. It also means changing his schedule for IV fluids. We are all exhausted. Robbie amazes me with how he never complains.
Lynn is here for a couple weeks. I’m so thankful she can come and help us out.
We appreciate everyone’s support.
Last night Jim and I took Robbie to The Piano Guys concert. It was fantastic! The music was relaxing and the guys were very entertaining. If you are worried about your ADHD child getting a job, these guys could be the poster performers. My favorite song is still The Fight Song. Google The Piano Guys on you tube and Fight Song.
It is a beautiful and relaxing evening out on our back porch. Robbie had a good day. I took him to the YMCA to workout, while I went to HEB, our favorite grocery store. He is still very tired, but doing much better than last week. He rested most of today.