Anime Matsuri Convention 3/30/18

Ruth took Robbie to the Anime Matsuri Convention today. He really likes Anime and watches it a lot on his computer to pass time at MD Anderson. He dressed up like One Punch Man with the outfit we got him at Halloween. He took pictures, found a sloth, and got to see some of his favorite characters. I know his resistance to germs is low right now, but he really wanted to go and I couldn’t make him have another disappointment this week. We keep hand sanitizer handy everywhere we go.

Thank you for all your support.

Hearing Test and Houston Aquarium 3/29/18

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!

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.

Immunotherapy Starts Monday 3/24/18

Robbie starts the clinic trial with immunotherapy on Monday. We will meet with his main doctor again Monday morning and then Robbie will be hooked up to one drug at a time. There are two different drugs. They shouldn’t cause hair loss like the other drugs, instead there is a whole list of different side effects. Praying the side effects are minimal.

We haven’t gotten the heart test results yet, but chemo dates have been put into Robbie’s medical calendar through July, so I’m guessing what ever concerns they had ended up not being significant enough to knock him out of the study.

Thank you so much to everyone that has sent a card! He loves getting mail and you have really helped him! It is a very rough road right now. The clinic trials are being done, knowing the statistics so far aren’t favorable, but it is the best option they have right now. We will even cheer if it halts the growth of new tumors.

Tests and The Butterfly Center 3/22/18

Ruth and I took Robbie to his appointments at MD Anderson today and then we took him to the Butterfly Center. It is one of his favorite places, but we haven’t visited since we moved to Katy. Praying his heart tests went well today. I’m not sure why they needed additional tests, so that always makes me nervous. Robbie loves seeing his sisters this week. Josh and Lynn drove back to Tulsa today and now Ruth is here for a few days.

Biopsy is Done 3/21/18

Biopsy Today

Robbie had a biopsy on one of the tumors in his lung today. He did well. He was asleep most of the day. They finally let us leave the hospital at 6:00 tonight. Lynn and Josh spent the day with us, which really helped!

We have to go back tomorrow for tests on his heart. I’m not sure if there was a problem with the first heart test or if they didn’t do the test correctly.

Cards and packages ❤

Thank you to everyone that has been sending cards and packages. You are really helping him through a rough time. We are so thankful for your kindness!

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.

Testing and More Testing 3/19/18

Robbie had a long day of testing before he can start the clinical trial. They did some of the testing at the main MD Anderson campus and some of the testing was done at their research building. Wednesday he will have another lung biopsy. Robbie is so brave to go through that again. You would have to knock me out. He likes to see pictures of his lung on the large screen.

I included a picture of the study in case you want to look it up. Although we were told last week that it is a stage 2 study, it is a pilot study. We are nervous, but continue to pray for good results. They plan to start his treatment next Monday, if all the testing goes as planned this week. He will continue as long as the side effects are tolerable and it is helping. We still need to read more about it. Here is a link for more information from Memorial Sloan Kettering Cancer Center in New York, where the study is being done.

Lynn and Josh came down from Tulsa today and Ruth is flying down Wednesday. It is great to have family here this week. Robbie is happy to see his sisters!

Thank you for all your prayers and support.