We got up this morning at 4:30am, which is pretty normal for radiation day. Thursday is also our day at the oncology clinic to meet with the oncologist. We administered medication; packed breakfast & lunch for Caleb (and another round of meds); lunch for Caden; got dressed; loaded everyone into the van; & dropped Caden off at a friend's so he could still make pre-school today. Then, Richard, Caleb & I headed downtown for treatment.
Things there were running a little behind because the little girl ahead of Caleb was brought in by ambulance today. She's gotten very sick & had to have a bone marrow test done as well as her radiation. She's not even 3 yet.
Caleb was overly cranky this morning & just not comfortable in any position. He finally went in for treatment around 7:50am (about 30 minutes late). Richard & I went to the waiting area figuring that we'd be there for about 20 minutes. Over an hour later they came to let us know they were done. They had to keep stopping the treatment because Caleb was having a very hard time breathing. Dr. Murphy, the anesthesiologist, said he wasn't sure if was because of the swelling from the steroids, the position his head has to be in, or a combination of both. The mesh mask that he has to wear left deep impressions on his face that made him look like he was wearing a Spiderman mask. He said that he wanted to meet with Dr. Boike, the radiation oncologist, and make some adjustments to help Caleb breathe easier and that Friday's treatment may be impacted.
We headed to clinic with that information. We were expecting to just have a blood draw to check the levels of his medications & meet with the oncologist to review the previous week, then leave. In and out in about an hour; home before lunchtime. What happened what not what we expected.
We met with one of the members of Caleb's oncology team. Dr. Leger asked what had been going on the past week and we mentioned that it seemed that Caleb's heart was beating abnormally strong. It thumped in his chest so strong it felt almost like he'd just finished running two miles, when in actuality he was just sitting quietly on the couch. He had also been complaining that his chest hurt on the left side near where his port is located. She asked us if he'd ever been diagnosed with a heart murmur. I said he'd had one as an infant & we were told not to worry about it because it was very common in young children & he should grow out of it. She listened to his chest for a bit then decided to get a chest x-ray and an EKG, "just to make sure everything is okay."
So, we headed over to radiology & had the x-ray, then upstairs to the cardiology department for the EKG. We waited about 45 minutes for the EKG to be done. One cardiologist came in after the EKG was done and listened to his heart for quite a bit. She then brought in another cardiologist who listened for a bit more. They said they definitely heard a murmur and that is was probably just a small hole in his heart and nothing to worry about, but "let's do an echocardiogram, just to be sure." They said they wanted to find out where & how big/small it was. So we waited for another 45 minutes to be called for the echocardiogram. That test took about an hour to perform.
When it was completed, the cardiologists came back in the room and said he did not have a hole in his heart after all. They then said what he has is called Hypertropic Cardiomyopathy, which basically means "a thick heart." They then explained what it means, what problems it can cause & how to treat it, which I won't go into now. They said the most important thing right now is to keep Caleb well hydrated. If he's having any tests done where he can't eat or drink for several hours, an IV needs to be done keep him very well hydrated. They plan to meet with the oncology team to discuss treatment so both teams are on the same page & coordinating care between them.
Tonight, Caleb is sleeping with a port in his chest with tubes sticking out and now he also has electrodes all over his chest and a monitor clipped to his waist to monitor his heart. Thank goodness he's so tired. Otherwise, I think he'd have trouble sleeping.
So, my 5-year old son has an oncologist, radiation oncologist, anesthesiologist, and now a cardiologist. That's too many -ologists for a grown-up, much less a small child!
Lord, please hold us close to You. Give us strength to endure the treatments & medications to come. Grant us peace for the days when we feel like we just can't go on. Quiet our souls and help us focus on You. Pour out Your continual favor upon us as we meet with doctors, labs, hospitals, etc. And, most importantly, thank You for loving us!