I know it has been a long time since I updated and I apologize, but Sadie has been doing so well, we have just been trying to live life “normal” which by the way is much harder then I am use too. You literally forget what it is like to be able to do what you want when you want and not be controlled by pain and by doctor’s appointments and restrictions. The last few weeks have been good.
On the 30th Sadie had her second Remicade infusion and did really well; her temperature went up a little for a while, but went back down and other then looking pale and feeling tired that day there were very little side effects. The following week we went back to Bastyr where they added a few more supplements to her routine and we are seeing some results from those all ready. Bastyr’s main focus is not Sadie’s JRA but that she has inflammation of the gut (sounds nice – huh?); because of this Sadie is not a very “regular” girl and this has been this way since the day she was born. Like I said some of the new supplements are all ready starting to correct this and the theory is that if we can help get some of the toxins out of her body it will help her immunity and also help her JRA.
For the following two weeks Sadie was doing really well; asking to take walks, running, jumping, had a great energy level. Then almost two weeks to the date of the last Remicade she started to complain of pain. Now, I will state she is still running, jumping and being a kid, but rather then just being done and nothing, she is sore. This isn’t totally out of the blue. The Remicade will STOP working at a point – it has to build up in the system and then be maintained; since this is new to her, it could be that she is just ready for more now. She goes back in for the third infusion on the 27th (next Thursday). Most commonly at that point they will do another in 4wks and then the hope is to go every 6wks, but often kids have to have that adjusted… some can go 8wks… some go 3wks. So, it is a case by case basis. At this point, that is my thought as to why she is feeling pain again and we think that because Sadie was pain free and LOVING it she has been pushing herself and just gets tired and sore at the end of the day. Yesterday (Easter), watching her run for hours with her cousins was so wonderful. When we got home, she was pretty sore; those are the moments that are the heartbreaking ones. She shouldn't have to "pay" through pain just because she played!
On a last note… Sadie still has some open sores we are concerned about. The rheumatologist who looked at them didn’t really know what they were, but didn’t feel the Remicade had anything to do with them and suggested it was maybe the steroids she was on (which she is off now). The naturopathic doctor felt that they could be Herpes 1 (the type that gives you canker sores, which we all carry) and that her immune system being repressed could have just caused a large outbreak. As they are getting a little better, they are still a huge concern and the rheumatologist has called and asks that she be seen by a Dermatologist. The earliest we can get in is the 2nd of May, so let’s pray they go away before this and we can eliminate one more appointment.
Please pray for Sadie to be as pain free as possible and that our next infusion goes well and helps Sadie to feel better again. Please pray that the sores heal and that Sadie has the strength to leave them alone. Please pray for our family as we all seem to be suffering from some type of let down (after going strong for eight months in this fight, the release of feeling better has released some of the stress we didn’t know we were carrying); we have all been fighting some massive exhaustion and some internal stress.
If anyone would be interested in sending cards of encouragement to Sadie I will collect them and take them with to her next Remicade appointment and let her read them there. I think this would be fun to lift her spirits. For her, the actual IV is the worst part; but it is a long day!
**Keep posted for Jingle Bell information – we want to put our team together early and make it strong ~ Sadie will be the honoree this year and we want to have a huge group to show her support and help to raise money to fight this ugly disease**
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