1. The other 4 risk factors are as follows: -
-The patients weight needs to be higher than 150. Aaron weighs 155. Time to fatten that boy up!
-If you are on the drug for longer than 2 years.
-If you have had drugs before that suppressed the immune system, like chemo.
-If you test positive for the JCV virus. Which Aaron does.
3/5 of the risk factors, not what we wanted to hear. I think this is really what hit Aaron so hard.
2. We also learned that this drug is the last resort drug for MS at this time. They usually make patients take several other drugs before they prescribe this drug. Its very aggressive and works good. But with the risks involved, I think they try to see if other drugs are just as effective first. Since Aaron's MS continued to progress with his last drug and that drug being the other most aggressive drug out at this time, they know that putting him on any other drug would be fruitless. So, he was prescribed this drug. There really is no other option. Either he takes the drug or allows his MS to take its course. So we realized that really this is the direction we need to go. The hopes are that the middle or end of next year we will have a new option that is coming out. It is a new aggressive MS drug that we can switch to. Hopefully with less risk factors than the drug Aaron just started to take.
3. We learned that Aaron has an active lesion at this time. The doctors hope is that this new medicine will get that to calm down and stop any more attacks on his brain.
4. This drug weakens the immune system. Aaron will be very susceptible to sickness. We must not let him get sick the week before or of when he is to receive his next round of the drug. If he is sick they will not give him the drug until he is better. Because the drug weakens the immune system the virus or whatever is causing him to be sick can get worse. I guess there is a total 6 week window to administer the drug again for it to continue to be effective. After 4 weeks after the drug is given it is still strong in the body, after 5 weeks its still there slightly, but by 6 weeks its gone. So they need to get the drug to the individual before week 6. Anyways, he needs to stay healthy and avoid sick people. Looking at our house, you can only imagine how that will be very hard to avoid. Oh well. Lots of had washing, and hand sanitizer for us. Guess what Aaron's getting for father's day.
That's all I can remember right now. But we learned a lot and have learned that what we need to do to get this boy healthy once again.
After meeting with the doctor we headed back to the infusion room. There were 3 rooms. A quiet room, a dark room and the bright room. Luckily, the bright room with lots of windows is where they put us. We sat down and the cute nurses there came and greeted us. They were in love with little Easton. Everyone who saw him were dying. I think it made Aaron proud. We were then asked to see pics of all our kids. One nurse couldn't stop peeking in on Easton. It was cute. They finally got the drug going and we started to chat with the other lady in the room who was there. She was older and told us she had had MS for over 30 years! She looked great. She has had her ups and downs, but said this drug has really helped her. In fact, it helped her get out of the wheelchair. Anyways we talked with her for almost the entire 2 hours. She held Easton while I got Aaron lunch and she really helped Aaron's spirits to improve. Another lady came in at the end. She was upbeat and positive to. They both really shed some good light on this journey we are on. No, it won't be easy, but staying positive and making yourself focus on the good helps.
So Aaron did really well. He had no allergic reactions and has been doing good this week so far. He goes back in a month. I'll go with him again and just make sure all goes well.
We will keep you posted on how things go. We are hoping and praying that all will go well from here on out. Here's to a new beginning that will end much better this time!
