Robbie’s Week 6/20/18

Tulsa Zoo

Robbie had a wonderful week in Tulsa, Oklahoma. He got to spend time with his friends and his sisters.

We are very grateful to the Tulsa Zoo for allowing him to have a special day there with multiple behind the scenes tours with various animals including their sloth. Something he won’t forget. I’m not able to post the adorable pictures because they aren’t tours offered to the public. Ruth arranged a wonderful day for him. The zoo also allowed Ruth to use a golf cart to take him around the zoo and they gave Robbie VIP treatment at the annual zoo event for donors.

Robbie and Ruth

When I first saw Robbie after being apart for a few days, I thought…why is he limping… until my brain switched on and cancer filled the space again. He looked so much like himself again and doing typical things that for a brief few seconds life was almost normal. Dr appointments start back up tomorrow.

Jim and I got back to Houston last night. Lynn and Robbie will arrive sometime today.

Robbie and Lynn

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.

MD Anderson and The Zoo 5/14/18

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.

Kolaches, MD Anderson, and the Zoo 4/9/18

We started the day at the Kolache Shoppe for Robbie’s favorite sausage, egg, cheese, and jalapeño in a bun. It is our favorite Kolache place in Houston. It is on Richmond near Weslayan Street. Robbie’s grandpa Mudroch used to make kolaches every year at Christmas. We learned about the bakery when we toured the Czech Museum in Houston.

Next Robbie had bloodwork for the clinical study. He told me they took multiple vials today. Some of the vials are being used for research.

We had extra time between appointments, so we went on a quick trip to the zoo. We ran into Sydney, one of the sweet zookeepers, and she let Robbie feed Curly a couple grapes. This was the highlight of Robbie’s day! Curly even climbed out onto a branch to be near Robbie and the grapes.

Then back to MDA to see his main doctor. Robbie is much better, but still gets tired easily. The side effects of the drugs are starting to wear off . We are so thankful he is doing better. It is scary when you don’t know how long the side effects are going to last or if anything is permanent. We are also thankful for the caring staff at the Sarcoma Center that are all watching out for Robbie.

Disappointing Day 3/26/18

It was a very disappointing day. Robbie was supposed to start the clinical trial today. He had bloodwork and then we waited 3 hours to find out that treatment had been cancelled today due to low blood counts. We don’t know why his white blood count is so low today. He was given a shot and will receive another shot on Sunday to help boost his white blood count. Then hopefully start the clinical trial next Monday. Robbie was upset and worried to hear this. We hate to delay treatment.

Then Google called and decided they want him to move to California instead of working remotely. Of course…. since he is still fighting cancer, he can’t move right now. Talk about another HUGE disappointment. I wanted to call them personally, but my children told me I wasn’t allowed to call Google and explain why this job is important right now during Robbie’s treatment and cry on the phone.

Robbie wanted to go to the zoo after his rough day. The sloth zoo keeper allowed Robbie in the back with Curly to feed him and talk to him. Curly really likes Robbie and kept looking at him. So cute and so sweet! We love the people at the Houston Zoo. Ruth was with us, so she got to see Curly and feed him too. She changed her flight to leave on Saturday instead of Tuesday, since we are such a mess today.

He received some cards in the mail today from Navico, which he was very excited about! They are so good to him! He also got a cute sloth shirt from a friend and some cards from the Sunshine Snail Mail. Keep the cards coming, you are really helping him.

Thank you for all your support.

Zoo Trip 3/20/18

Robbie had one appointment this morning and then we took him to the zoo. Robbie’s sister Lynn and her boyfriend Josh are here from Tulsa for a couple days. Tomorrow Robbie has a lung biopsy, which will take a couple hours and then he has to stay for an additional three or more hours to make sure his lung doesn’t collapse. They plan to access the tumor through his back. He will be drugged up, but awake.

Medical Updates 3/8/12

Last month his Dr said his cancer was only growing a millimeter a month, so his plan was to wait until the tumors got to a certain size to start treatment again. In fact, he said we could really go three months between appointments, but I insisted on monthly checkups.

This month, the tumors have decided to take off, so treatment needs to start as soon as they can get him accepted into a clinical trial. They are hoping to get him into immunotherapy clinical trial. Praying this treatment works. His Dr continues to give a poor prognosis, but we have all heard of people that have beat the odds.

Robbie started the week on a high, when he had 3 teams from Google all interested in him. He interviewed in San Fransisco last year while in remission. Now with treatment starting again, we don’t know if they would consider having him work remotely. For a child that loves math, not only is he upset about his health, but also the job opportunity.

Then we went to the zoo and they let him in the back to feed Curly, since he had a rough day. I love how kind they are to Robbie.

Keep praying.

Another Zoo Trip, Dr Appointments, and More 3/6/18

Lynn took Robbie to the zoo today. They had fun spending time together. He has missed our frequent trips.

Robbie’s Uncle Tom and Aunt Paula are visiting from Wisconsin. It is great to see them.

Tomorrow is the dreaded testing day and Thursday we get results. This is never easy!

Robbie had a few interviews this week. All very exciting for him and amazing with all he has going on with his health. I reminded him that he can go on disability, but he really hopes to work while he is able. This makes the upcoming tests even harder. Please pray for healing of his lungs and pray for the possible opportunities.

Thank you for all your support.

Houston Zoo Trip 3/4/18

I love seeing Robbie’s happy smile at the zoo! Jim dropped him off while he cleans out our apartment before handing back the keys. I managed to hurt my back moving boxes and furniture around a few days ago. It hasn’t been my best week! I’m enjoying all Robbie’s text messages and pictures.