Going Strong

by Chad Keck on November 22, 2013 · 0 comments

I didn’t realize it has been so long since the last update, sorry everyone! The past few months have flown by and a lot has been going on with Noah, but I’m happy to report that as of right now he is doing quite well and still on track. Noah still goes to the clinic about once or twice a week and is still on constant chemotherapy and steroid treatments, but he is used to it. As usual the chemo doesn’t seem to affect him very much, luckily, but the steroids still do unfortunately.

For the longest time we had to keep Noah fairly isolated as many of you know but we’ve started getting him out more and more as his immune system has grown stronger. This summer however Noah caught a pretty severe waterborne virus and we still don’t know exactly how. Probably from touching a water source outside somewhere and putting a hand in his mouth. Just that quick he got extremely sick and ran a dangerously high fever for several days (even more dangerous for leukemia patients), but we were able to get it under control after about a week. This sent his treatment off-track though for about 6 weeks or so, which is risky. We had to stop all of his chemo due to very low counts. He did however stay on his steroids. Things finally got back to normal of course. We still take him out but we just have to keep an extra eye on the little things.

About a month ago Noah’s doctors suggested a treatment which he didn’t get last year, due to the more intense treatment he was on. They asked for us to give Noah an IVIG infusion which helps protect against certain types of infections. Side effects however can be pretty severe including a lot of pain and nausea for a few days post-treatment. We went ahead with the cold season coming up as we didn’t want a repeat of what happened this summer accidentally. The first day after the treatment (~8 hour infusion) Noah seemed fine but the next two days he looked and felt pretty rough. During those days he had to come home with IV fluids so he couldn’t move around much. He had a slight fever the second day so they kept him attached to the IV fluids for another day. By then he was feeling better and wanting to jump around again like a normal 2-year old. Unfortunately he bent and pulled the needle out of his port that his IV was connected to and we couldn’t flush it properly. This led to another chain of events… While at the doctor the next day, they were working to flush his portacath and his line (catheter) blew out up in the vein that carries it down hear his heart. While not a major issue in itself, it did require Noah to have surgery to replace his portacath and catheter. This was probably not a bad thing in the long-run since he has grown so much and it might have needed to be replaced either way eventually with a unit that had a longer catheter. He’ll have to have this port for several more years at least and there is a lot of growing to do yet. The surgery was the other week and everything went smooth so nothing to worry about there. His scars are healed up and he didn’t seem to care about them much even a few days after. That is about it for the medical side of things.

Besides all of that Noah had a blast this year on Halloween. He dressed up in a really nice astronaut outfit and did some trick-or-treating with his Mom and Grandma, but his favorite part was handing out the candy believe it or not. He wanted to stand by the door and see all the “monsters coming” and then open and give out some candy. He was pretty good at it too I might add. I also noticed that the last set of pictures don’t really show off his crazy curly hair so take a look below. We don’t know exactly where this came from but everyone seems to love it and we don’t know what to do with it so we’ve just left it alone for now. We’ll let him enjoy it for a bit since we’re not sure what will happen. That’s about it for now. Noah seems really excited for Christmas this year now that he knows what’s going on, so it should be fun. We’ll post another update either during or right after the holidays. If not before then, have a great Thanksgiving, a very Merry Christmas and a Happy New Year!

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