I've been struggling with writing this post all afternoon and evening. So, I'll just go through the day from beginning to end. Please bear with me.
Caleb was up several times last night to use the bathroom because he's still on IV fluids. None of us got much sleep. Around 4 a.m., Caleb started getting very agitated and tried to pull his port line out. Richard crawled into bed with him to get him calmed down. We slept until about 6:30 a.m., when the nurse came in. She said that the first MRI of the morning had cancelled and Caleb had been moved to the first slot. The technicians would be in our room to get him in about 20 minutes.
I got dressed and waited for them to come in. Since Caleb was asleep & we had to wake him up, he was NOT a happy camper. He fought, screamed & tried to wiggle himself out of the wheelchair several times. Once we got to Radiology, he calmed down. We got him ready for the MRI & they started at 7:42 a.m. Which was actually quite good news for them so Dr. Winick didn't have to let heads roll. He came directly back to the room when it was completed around 10:30 a.m. and ordered breakfast.
While he was eating breakfast, the floor manager comes to the room to stare at our ceiling (see yesterday's entry if you missed the story behind the ceiling). She said that we would be moving rooms. We told her that we were hoping to be discharged. She said we didn't have to move unless we had to stay another day.
After breakfast, Jennifer (our Child Life Specialist) came by and said that her boss had spoken to the Star Wars folks coming in this weekend to visit the kids. They heard that Caleb's wish for Make-A-Wish is to fight Darth Vader during Star Wars weekend at Disneyworld. They suggested that it might be possible for Caleb to have a "warm-up" fight with Darth Vader this weekend. They plan to be here about 10 a.m. Saturday morning. We will get to meet with them privately before they go the the playrooms. I am so excited for him.
The floor manager came back by about 1 p.m. & told us to pack up cause we were moving rooms. That's how we got notified we were staying another day.
I immediately thought that there was something on the MRI that was causing us to have to stay. We got settled in the new room & Richard took a walk around the hall. While he was gone, he met up with Dr. Winick. She explained that the x-ray they took last night of Caleb's bowels showed that he does have a blockage that has not moved since Friday when we were admitted. They decided the best course of action would be to do a nasal enema (for lack of a better term). He had to have a NG tube inserted through his nose into his stomach. They would then feed straight laxatives through the tube until he poops clear liquid. My, oh my, we are in for a long night.
About 2 p.m., Dr. Leger & Dr. Winick came by to discuss the results of the MRI. It's not good news. They are telling us that the tumor has gotten bigger, which means that radiation was not effective and it's growing. Because this is an aggressive growth tumor, we have now been given the official news that we have between a few weeks to a few months left with Caleb. They say that the tumor will continue to progress and Caleb's condition will continue to deteriorate.
We further discussed the other treatment options they gave us at clinic last week. After our discussions, we have decided to go forward with the Avastin. Of the two medicines we discussed, Avastin carries more risk but also has a better hope of success than the Timozolomide. The main concern with the Avastin is that one of the potential serious side affects of Avastin is bleeding in the brain. We've been told that the chance of bleeding is usually around 5-10%. Because Caleb has already had issues with bleeding, his risk intensifies. They're not sure how much greater that risk is. If bleeding starts, it could be very serious, very quickly. He could start to go downhill within 30 minutes of taking the drug. It could also potentially take his life.
It was not an easy decision to make, but it is the one we feel is in Caleb's best interest. If we do absolutely nothing but make him comfortable, we watch him die a slow and excruciatingly painful death. If we do the Avastin & it does nothing, we're back where we were with doing nothing, but at least we tried. If we do the Avastin & it takes his life, we've saved him from a painful death. If we do the Avastin and it works like they hope, it could potentially save his life by destroying the tumor.
When Caleb saw us crying, he wanted to know why. We told him that his tumor is not getting better. We also said that we were going to try a new medication that we hoped would make him better. We don't know if it will work or not, but we would try. He said, "okay." We are scheduled to have the first treatment of Avastin on Thursday, March 10th -- exactly 5 months from diagnosis.
They left the room and we started calling family.
Around 8 p.m., a couple hours after they got the tube inserted and laxatives flowing, Caleb decided he didn't like the tube any longer and pulled it out! So we decided to wait until tomorrow morning to try again. That way, we can hopefully get some sleep before we start.
While we were waiting for clearance from the doctors to wait until tomorrow morning to start, Caleb asked for a glove Richard had blown up to resemble a chicken. He started sucking on one of the fingers of the glove. When I told him it looked like he was sucking on a pacifier, he asked if he could have a real pacifier. Of course, I told him yes. He said, "I want to get a cool pacifier." I told him that if he could make do with what they had her in the hospital that he could pick out his own when we got discharged from the hospital.
Within minutes of pulling the tube, he had his first accident. He had four or five accidents before he finally fell asleep with his new pacifier in his mouth. He's sleeping peacefully at the moment and doesn't appear to be in any pain, for which I am so thankful.
The news we've received is devastating. Our storm has intensified and is now like a Category 5 hurricane and an F5 tornado all mixed together. The path of devastation is great, but we know our God is, and always will be, the calm at the center of our storm. We turn to Him for comfort and know that He is there. He did not cause this to happen to us. But, we will use it to glorify Him, no matter the outcome.
Thank You, Lord, for allowing us the time that we have with Caleb. It is much shorter than we expected it to be, but we are honored that You chose us for this journey. Help us as we help him.
P.S. Don't forget to leave a comment so we know you're reading. Please remember to put your name if you're commenting as a guest. We're starting to read all your comments to Caleb so he knows how many people care about him and are praying for him.