Friday Updates 6/30/17

Robbie’s platelets dropped again today. Everything else is holding steady. Keep praying for his numbers to start coming back up. 

Lynn and her friend arrived last night with a car load of stuff for us from our house. They are going to spend the weekend. 

I’m at the Houston airport nervously waiting for my flight to go visit my sisters. I’m looking forward to seeing them, but having Robbie sick makes it harder to leave him. My sisters and I planned this months ago. We haven’t seen each other in over a year. 

Daily Blood Work Begins 6/29/17

Robbie had bloodwork today and due to low blood counts, he will need daily bloodwork. His white blood count and platlets have really dropped. He bleeds very easily. 

His numbers are expected to keep dropping the next few days. The scary part is how low and what he will need until they start to rebound. We have to basically isolate him until his numbers improve. Any infection is an emergency. If they drop below a certain point, he will need transfusions. I hate this. 

We appreciate your prayers.

Fever Monitor 6/28/17

Robbie continues to be fever free. We are avoiding germs and staying in the apartment. 

I bought a baby fever monitor that alerts your phone if your child has a fever. If he starts running a low fever again, we will try it out at night, so we can hopefully rest easier. I’ll let you know if it works. 

I now have MD Anderson’s after hours number and the protocol of when to call or visit the ER during chemo. 

6/26/17 Running a Fever

Robbie is running a slight fever tonight. We will check on him in the night. We are hoping to avoid the ER. It is a sign that his blood counts are dropping. This is a few days sooner than expected, so hopefully it will drop back to normal over night. 

I realize that I don’t have any of the after hours phone numbers or current protocol. Will find out tomorrow!

Quick Zoo Visit 6/26/17

We went to the zoo to the two closest buildings to the entrance, so Robbie could see the sloth and the aquarium. We were there less than an hour and now he is resting. He had fun, but he is very weak. 

My mistake was thinking we could pick up a few groceries on our way home. He found a place to sit down, but next time I will take him home first. 

Sunday Sleeping 6/25/17

Robbie slept most of the day again today. We did take him out for a short shopping trip, but after 20 minutes he was ready to leave and go back to sleep. His mouth is starting to bother him, so we’ve started to take his temperature, since it is a sign his blood counts are dropping.

He had a good evening playing on his computer.  

Happy Birthday, Robbie 6/23/17

Happy Birthday to Robbie!  He is 24 today. Thank you to everyone sending cards. You are really making his day!

He finished the first round of chemo last night and is heavily drugged to keep from being nauseated. We won’t know until he goes through the process if his body can handle the heavy chemo or if the tumors in the lungs are impacted. He normally is okay with nausea meds until around the 10th day after chemo and that is when we often see the huge drop in his blood counts and fever. I can’t remember what day his mouth sores start, but it is soon after he gets chemo. We have medicine to help, but that is also a huge side effect. We also expect him to lose his hair either this round or the next, which isn’t a big deal for him.

Thank you for all your prayers and messages. We really appreciate all the support.