Weekly Check Up Wednesday, April 23

What did we even do on the long weekend? It already feels so long ago... The Easter Bunny came Sunday morning and we went to Granny's for Easter lunch Sunday afternoon. Chuck spent the entire weekend fixing his muffler and I worked in the garden taking out a tree that was sick, sadly. The kids played on the trampoline and Eric finished up some Lego sets.

Eric elected not to go to school on Tuesday. He is feeling okay, but was worried about his low white blood cell count, not wanting to get sick. On Wednesday he had his check up at clinic. It was a gong show there after the long weekend. We were lucky to get right into a room, but unfortunately it was a room with an exam table and not a stretcher/cot. Eric was not impressed. We had hoped to just get his access done there and then move if he needed platelets, which of course we had assumed that he would need. Eric didn't even want the access on the uncomfortable exam table, but he didn't have a choice so we made it work. Just before his access, I let his Nurse Clinician know that he had petechiae on his skin, which is a sure fire sign that he has low platelets, even beyond the multiple bruises. So his doctor ordered the platelets without waiting for the blood test results. This meant that we got out in about 2.5 hours instead of 3.5 which was great. Though we never did get to move rooms. They were all full and families were waiting in the hallway for rooms to become available. Eric's Nurse Practitioner came in to do his exam. We saw his Oncologist a number of times but he was running all over the place. Luckily we love his whole team so are happy with whoever comes to do the exam. His Nurse Practitioner says he looks really good. Yeah he looks great on the outside, but could we fix the inside please?!?! I showed her the petechiae that I had noticed that morning on his wrist and collarbone and also showed her some red spots in his ears and asked what those were. Turns out they are petechiae as well. It is basically a cluster of small red spots. His legs are also even worse than the previous picture I shared, with some large bruises along with the small dots. In addition, he now has a number of bruises on his arms and a few on his back. It's pretty awful to look at but mostly they don't bother him. I guess maybe it's not the smartest idea to allow a kid with a low platelet count on the trampoline. But there are so many ways he doesn't get to be a "normal" kid that I can't take anything else away from him. 

We did get Eric's blood counts before we left and, surprise, surprise, his platelets were "less than 5." His hemoglobin is down to 83. For reference, I donated blood yesterday and they test your hemoglobin level beforehand to make sure you are safe to donate; my hemoglobin was 145. I told his Nurse Clinician and said "and I'm tired!" It is truly amazing the way kids adapt. With a hemoglobin in the low 80s, you probably couldn't get most adults out of bed. We will plan for a long day on Monday for Eric to receive both blood and platelet transfusions. 

Eric's oncologist always says the greatest impact on his counts from the IV chemo is 7 days after it finishes, so that is this Friday. Since it is a pro-d day, and Eric hasn't been to school the rest of this week, we figured he may as well skip today (Thursday) as well and just have a good rest and hope his counts recover a little and it's safer for him to be at school next week. Of course, he is still on the oral treatment; today is day 11 of 28. He continues to feel pretty well, though he isn't eating much, and is a little lethargic. We're back to clinic on Monday and Friday next week.