Friday, September 26, 2014

Last Thursday (the 18th), Collin and I started our day at clinic at 9:00 am for the labwork that the gastroenterologist ordered. Then we went down to radiology where Collin had an abdominal ultrasound. This was to check his organs to see if there were any problems that could be causing the reflux/vomiting. The ultrasound tech was the same one who had done Collin's ultrasound in 2010, after he had the VOD from the heavy duty chemo for his stem cell rescue. Collin did very well for the ultrasound, laying very still, turning onto his side when the tech asked him to, etc., but he whispered to me, "Are we almost done? This is boring." When the ultrasound was finished, we went to nuclear medicine for the last test, called a gastric emptying test. The purpose of this test was to check the motility of Collin's digestive system, to make sure food moved through the stomach and upper intestine completely, and as fast as it should. Collin had 10 minutes to eat scrambled eggs that had radioactive dye in them, along with a piece of toast and some water. The nuclear medicine tech gave me specific directions to only use the fork to feed Collin the eggs; he warned us not to touch them with our hands (and yet I had to feed them to my child!) After Collin ate what he could in the ten minutes, a scan was done of his stomach. A second scan was done an hour later, a third scan was done an hour after that, and a fourth scan was done two hours after the third one. In between the scans, we walked around the hospital, played on the playground behind the cafeteria, and hung out in the waiting room playing with the things I had brought with us. It was a long day of not being able to eat and just waiting around, but as usual Collin handled it like a champ. He told me one time that he was hungry, but he didn't complain at all. Finally, after the last scan at around 3:20 pm, we were able to have something to eat.

On Monday, we met with the gastroenterologist to get the test results. He let us know that the labwork, the ultrasound, and the gastric emptying test were all normal. On one hand it's nice to know that things are working as they should be, but on the other hand it doesn't help explain what could be causing Collin's reflux. So, the doctor recommended two more tests, an endoscopy and a pH probe, which will be done next Tuesday. For the endoscopy, the doctor will insert a small scope into Collin's mouth, down into his esophagus, stomach, and the top of his intestines. He will take some tissue samples, and will look for any signs of infection, ulcers, etc. Then for the pH probe, he will insert a small flexible wire in through Collin's nose down into his esophagus. The wire will be taped to his cheek, and be connected to a small monitor. Collin will wear this probe for 24 hours, and it will record the amount and seriousness of the acid backing up into Collin's esophagus. After the 24 hours, we will return to the outpatient surgical center so the probe can be removed. Then a week later, we will meet with the doctor to find out the results. Collin will be put to sleep for the endoscopy and pH probe placement, and he had to stop taking the Prevacid a week before the procedure. Since he started having Prevacid twice a day, he has been more comfortable and had very little symptoms of reflux. Unfortunately, since stopping it Monday evening in preparation for these tests next Tuesday, the symptoms have increased. Yesterday they were pretty bad. Collin threw up in the car on the way to school, and again last night after dinner. He complained all day that his tummy hurt/burned, and the only thing I could do was give him Maalox every four hours. After throwing up yesterday morning, he asked me, "Do you think I'm broken?" I'm hoping the doctor can figure out what's wrong so it can be fixed!

I am thrilled to report that school is going very well for Collin! He's excited to go every day, and he doesn't want to miss anything. He's even enjoying the playground more and letting the teachers and the classroom aid help him. When Collin missed school for the first round of tests and then the appointment with the gastroenterologist, his teacher told me that his classmates were concerned when they heard he was going to the doctor. So earlier this week, I spent a few minutes in his class telling his cancer story and explaining things to help his classmates understand better. They listened carefully and asked good questions. It was a great experience, and I am so happy to know that Collin is surrounded by such caring people every day at school!

Tuesday, September 9, 2014

In early August, we flew down to Houston for Collin's annual follow-up with his radiation oncologist at MD Anderson Proton Center. She was very pleased with how he's doing. I told her about the reflux issues he's been having, but she did not feel it is a long-term side effect of radiation. I have been trying to help Collin's reflux any way I can. I make sure his clothes aren't too tight, I make sure he stays upright after meals, I prop him up in bed so he's not laying flat, I try to avoid giving him any food that could aggravate the reflux, etc. There were a few weeks where it seemed like there was an improvement in his symptoms, but then he came down with a respiratory infection, and his symptoms increased again. Last week we consulted a pediatric gastroenterologist. He spent a lot of time going over Collin's history and discussing possible causes. He ordered some tests to try to find the cause of the reflux. He ordered bloodwork, an abdominal ultrasound to look for any organ damage that could have been caused by chemo, and a gastric emptying test that will check the motility of Collin's stomach and intestines. If those tests don't show anything, he may do other tests that are more invasive, like an endoscopy an a pH probe test. It sounds funny, but I'm hoping this doctor can find a reason that Collin is having such reflux, because hopefully then we will know how to fix it. It has become a quality of life issue for us. Collin has thrown up in the grocery store, in church, in the car, on the couch, in bed... often there isn't much, if any, warning that it's going to happen. The couch and bed are once again covered in waterproof sheeting to make clean-up a bit easier, and I often follow him around with an emesis basin or bag asking him if he feels like he's going to throw up. Collin is way more aware of things now that he's older, and I worry about him feeling self conscious if/when he throws up in public, especially school. So on Thursday, September 18 we will be at the hospital all day for the tests. The bloodwork and the gastric emptying test are fasting. The labs are scheduled for 9:00 am, the ultrasound is at 9:30 am, and the gastric emptying test goes from 11:00 to 3:00. It's going to be a loooong day.

As I mentioned in my June update, we made the decision to send Collin to a pre-school program this year. It's called transitional kindergarten, and it's for children who are kindergarten age, but may benefit from an extra year before starting kindergarten. The class has two wonderful teachers, and is very small; there are only eight students in the class. Collin will also continue receiving physical and occupational therapy from his therapists from the IU, who will come work with him in the classroom setting. Last Friday we had the opportunity to stop by the school so Collin could see his classroom, and meet his teachers and a few classmates. At first, Collin was pretty reserved, but as we played together, he started to have more fun. By the time we left, he told me he was going to like it there, because his teachers were nice. So yesterday, Collin was eager to get to school for his first day (orientation). As we got ready to leave the house, he solemnly said, "I will try to make friends Mom, I promise." My heart just shattered. When I dropped him off at his classroom, he very bravely waved goodbye to me. When I picked him up, he ran to give me a big hug, and seemed like he had a good time. All of the students and teachers went out to the playground afterwards. Collin hasn't played on a playground too many times, and between uneven surfaces, and lots of kids who can move around a lot faster than he can, it's an unsettling environment for him. I held his hand hand, helped him climb up steps and slide down slides, but after a short time, he was ready to leave.

Today was the first regular day of school for him. He seemed a little more nervous when I dropped him off at his classroom this morning. When his class went out to the playground today, he wouldn't go on any of the playground equipment, even though there was an aid who was able to help him. When she talked to me later, I couldn't hold back my tears. I hate that Collin has already been through so much, and he still has so many challenges ahead of him. I'm sure he realizes that he's different from his peers, and I think he doesn't feel like he fits in. I hope that as time goes on, he'll make friends, and feel more confident in himself.