This is a copy of an email we sent to Caleb's oncologist yesterday morning:
We have not really noticed an improvement with Caleb's Balance or walking. He actually seems to be getting slightly worse. He seems to not be able to walk a few feet without needing someone to hold his hand or hold on to the wall for balance.
He has gained another 10 pounds totaling 65 lbs. Also he appears to be having difficulty breath, especially after eating. We think this might be cause of the weight gain. We would like to talk to the dietitian during the next clinic visit if possible.
We are getting more concerned about his health. Also we have dropped the steroid to 2 ml per day.
We will be calling clinic today for advisement but wanted to let you know.
It was after 7pm before things calmed down enough around here for me to call the clinic's after-hours number. I was pleasantly surprised when Caleb's oncologist was the one who called me back. She had just had a chance to read the email we'd sent that morning & was quite concerned about Caleb. One of the things we mentioned by phone was that Caleb seems excessively thirsty & urinates much more than normal. The previous two nights he had been up at least 7 times per night to go to the bathroom.
Dr. Leger advised us to go to the ER so we could have his heart, lungs, sugar levels, & kidney function checked out. She said that if one of those tests came back abnormal, we would probably be admitted & we'd work on moving his MRI up from the 11th. Otherwise, we'd be sent home & keep the original MRI date. We packed an overnight bag "just in case."
We sent Caden to the neighbor's house (thanks Nell!) to spend the night since we had no idea how long we'd be. We finally got out of the house around 10pm to head to the ER.
This was our first trip to the ER since diagnosis, so we weren't sure what to expect since Dr. Leger had already called the ER with orders for us. We were immediately sent to an isolation room to keep Caleb from being exposed to anyone else. All of the staff we saw worse masks to help prevent contamination as well.
Almost as soon as the first staff person arrived, Caleb asked for a popsicle. They wouldn't get one until the doctor had opportunity to check him out thoroughly. He was told that as long as his labs came back okay he could have one. When asked how many popsicles he wanted, he replied, "As many as I eat." Another "Random Burst of Brilliance" from my little man!
They accessed his port (first time since Nov. 29th) to draw blood & in preparation for potential admission. He was NOT happy about that. They took a chest x-ray, placed monitor leads everywhere & got two urine specimens. The first one we did as soon as we arrived because Caleb said he needed to potty. We weren't sure when he'd go again & didn't want to get held up waiting for him to urinate before we could leave. They didn't get it sent off in time & had to collect a second specimen after all.
His sugar level came back at 91, which was in the good range. All of the other tests they ran came back "normal" as well. The doctors are mystified that there are no abnormal reports. They could not find any reason why he was having those symptoms, so they dismissed us to come home. That was after 4:30am.
Believe it or not, this is the time that Caleb chose to have a major meltdown. He didn't want to be dismissed from the ER. He wanted to be admitted & kept screaming, "I don't want to leave." We finally got him to tell us why. Apparently, the hospital has the "best popsicles" & he wanted to be able to eat as many as he wanted. We finally managed to get him to leave with the promise of stopping at I-HOP on the way home for breakfast. Wouldn't you know that the I-HOP we stopped at is not a 24/7 restaurant! It was 5:20am when we pulled into the parking lot & they didn't open til 6am. We didn't want to wait, so Caleb decided he wanted a cheeseburger from Whataburger instead. We picked it up & went home. We finally got home around 5:45am. He ate his burger & some cereal then headed to bed. We finally got in bed after 6. Caleb was back up by 7:45am.
Richard & I are still trying to rest so we set Caleb up with a new DVD he just got (Transformers 25th Anniversary Seasons 3 & 4). About 9:15, we hear Caleb screaming. I rush out to find out what's wrong. I finally find out that the little darling had gotten a Cheerio lodged in his nose!!! Apparently, he's pretty determined to get those popsicles because I sure thought for a moment that we'd be heading back to the ER! We did manage to dislodge it on our own & had another talk about where food goes & how it gets there.
And another "normal" day begins.
Thanks to everyone for praying for us last night when we left. We appreciate it so very much. The doctors may be mystified, but we aren't. Prayer works! Let's keep praying & believing that his MRI comes back with the same response of "I can't explain this, but there is no tumor there any longer."
I'm going to take a nap now, while the boys are napping. Gotta get sleep when I can these days.