Jakers had clinic today. Since we started maintenance our visits up there have lasted an hour and a half max, unless he gets a back poke. Today was just a regular old visit, but we were there for over three hours! It took the lab a long time to send his meds up so it made for a long morning! Jakes counts have fallen even more. His ANC is now at 400. They have stopped all chemo again, except for steroids which he is on for the next five days. I am still trying to understand what those darn doctors are doing to us poor parents... stop all meds EXCEPT the steroids! Come on! It is supposed to be a well deserved break. The other pills are not bad but that 'roid rage always seems to hit with a vengeance! Crew is not even allowed to cry because the noise bothers Jake so much. It is a fun five days! (So, Dr. Wright... I know you sometimes read this and if you are... we are sending him home with YOU next week! hehe!) Anyways, a lot of medical terminology that just goes over my head was thrown around... I will explain it as best I can and if I am totally wrong, feel free to correct me anyone! One of the medications Jake is on is called 6mp. Apparently 1 out of 100 kids' bodies' have a hard time breaking down the enzymes in the drug and need to be on a lower dose. We are testing him for that and also the antibiotic, septra, can cause low counts. We have taken him off of that and if it is not the 6mp, we will change that antibiotic to one that he gets intravenously. So that is that! I am sure I am explaining it all wrong and don't make any sense... (sorry about that.)
Now on to the important fun stuff. Jeff took the boys to the motocross races on Saturday with the Johnson boys! And I got a well deserved break, dinner with Angie and the two babies and to bed EARLY for once. It was great! And the boys had a blast! In Jake's words, "this is the greatest night of my life!" Apparently they had fun. The camera battery died so Jeff didn't get to many pictures...
7 comments:
Heidi, I can't believe the hoops you guys are going through with Jakes counts, his meds,... everything! UGH! The 6mp makes sense, but I wonder about the septra. Livi is on Bactrim, maybe they're in the same family and that's why they can't try it? I don't know. Good luck, we're hear if you want to vent. On the other note... keep loving those highlights, they sure get you through the tough times.
Rachel
Hope you are able to find out soon what is causing the low counts. Motocross looks like a ton fun and glad you got a break in there.
Heidi,
I am so sorry about Jake's counts how very frustrating!! I wish there was something they could do, that isn't fair how long you have waited for him to get into maintenance and now this. You are one strong person, I couldn't do it! I hope now that they took him off the 6mp and septra they can get those counts back up for good. You need a well-deserved break for the summer! I am so glad we got to see you guys up there, I have really been wanting to talk to you more but you know how busy life gets. We need to get Jake and Tommy together as soon as they're both up to it. They can sit around and play Star Wars all day. We need to keep in touch and vent to eachother! Call me anytime, seriously. Keep up your great attitude, you're amazing! We're always praying for Jake and your cute family. By the way those pictures are so stinkin' cute, what handsome boys. I can't wait for you to take some of my kiddos. Talk to you soon,
Heidi
Maybe Primary's should start a "roid daycare" that you can drop your steroid babies off at. It would give you a much deserved break! Hopefully your Dr's can get it all figured for your you guys... good luck!
Heidi, I'm really surprised that you didn't want to attend the motocross races. I thought that you were totally into that stuff!! :)
So glad that the boys had so much fun at the motocross races....a perfect night out with dad! As for Jake and the roid rage....I love that boy!!
Don't worry Jakers! The doctors will figure out the low counts. The important thing is that they keep you healthy with no infection. We miss you guys. Hillary and Isabelle are excited to come visit. You can take any roid rage out on Isabelle, because frankly she needs to be knocked around a little bit at this awesome stage she is in. Love you guys!
Love,
Picky, Hilly, and Isabelle
PS- don't be confused by the Septra. It's the SAME thing as Bactrim...just different trade names for those pharm companies to make more money.
Haha. You actually did a great job of explaining! I just checked and we still don't have the fancy lab results yet. Hope things are better this week.
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