Following my last post, Eric was feeling so well on Sunday that he asked to go to a park! We just went up to his school where the boys played frisbee and the girls - Millie and I - played fetched.
Eric was still feeling well on Monday and his school had a professional day, but we had to go to clinic. Our appointment wasn't until 11am and traffic was a breeze. It only took us 40 minutes to get there. It is outrageous that at 8am it can be almost twice as long. Eric's doctor wanted him in to check if his sodium rebounded with the break from his new treatment/medication since Wednesday, and it did. His hemoglobin was also fine, and platelets low, but ok for a few days, so we were able to leave with no transfusions! We got out around 1pm and were home before 2pm. However, his doctor wants us back on Wednesday to check his sodium level before he takes his next dose.
Eric took his dose Monday evening, swallowing all 3 pills at once! Unfortunately, he then woke up at midnight vomiting, and again at 1:30am. Whenever Eric is feeling nauseous, he carries an empty 4L ice cream bucket around with him, but he rarely uses it (thank heaven!). I always call it his emotional support bucket, which Eric has finally decided to embrace. He's named it Bucky and used a sharpie to draw a happy face on one side and a sad face on the other to describe how he's feeling.
After Eric was up overnight sick from the side effects of his treatment, Joel woke up not feeling well Tuesday morning. Not feeling well quickly escalated to a full blown stomach bug and he was throwing up all day! I wanted the kids to stay hydrated so I decided to get them some Gatorade, but I couldn't handle the idea of blue vomit, so I got them white Gatorade; turns out they hate it! Apparently it tastes like medicine. I thought I was so smart!
Wednesday morning Joel woke up feeling much better, but took the day off school to rest and recuperate while Eric and I headed back into clinic. 9:30 traffic is definitely better than 8am traffic, but not nearly as good as 10am traffic. Traffic might be making me crazy. Eric stayed accessed from Monday so his nurse was able to get his bloodwork right away. The doctor ordered platelets without waiting for the results of the bloodwork since he'd been low on Monday and had a small (luckily) bleeding nose since we'd last been in. It's always nice to get things started quickly so we can get out quickly! Last Wednesday the clinic was so packed we had to wait to have a nurse assigned, but this week it wasn't busy at all.
When the platelets finished, Eric's doctor stopped by to let us know that even with the dose of Selinexor (the new treatment) on Monday, Eric's sodium remained stable. The doctor is quite pleased with that and said we didn't have to come back until Monday!!! Only a few weeks ago I was annoyed with having to go to clinic 2x per week and now I'm just thankful that it isn't 3x. Eric was also thrilled and very happy to have his port de-accessed and be able to scratch under the dressing! When I told him it was time to put on his shirt and leave, he said "no, still scratching!"
Eric often naps, or at least rests, on the car ride home. Most of the time when we leave I tell him that I'm going to nap and he can drive. Recently he said to me with a *tone* "mama, you can't make the same joke every time." I guess I need some new material.
Eric is feeling okay today, but not great. We've been on top of the anti-nauseants since Monday night so no more vomit, but definitely not quite himself. Hopefully this will continue to improve over the end of the week and weekend as it did last week.
We have a busy weekend ahead since it is Joel's birthday on Saturday and we will officially have a teenager in the house!
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