Hi Michelle, Hope all is well with you and yours.? I wish we could have had more time together last visit.? Isaac sure love Kieren! I believe, if I remember...
Kathe, I will keep you in our thoughts and prayers, and hope you get a drug that helps instead of the other option. So sorry to hear that even being...
Karen, Thanks for the note.? We have actually already corresponded with this family just over the weekend.? She has sent me pictures and they do look very...
Kathe, I am so glad that you have gotten connected over the weekend! I was not able to get onto facebook at the Inn and that is how we had met this family so...
Hi Kathe, So sorry to hear that Isaac hasn't responded to any other drug yet.Hopefully you won't have to go through with the bone marrow transplant,really hope...
Aisling Thank you for your note.? You have so much going on, I cannot even imagine.? And yet you think of others.? You have a very kind heart and soul.? We,...
Kathe, Keep us posted, and I hope you have a good meeting this weekend. I met their son, and the first child I thought of was your Issac! I hope that you all...
Karen, Â Thanks so much for the brochures. I got them today. I hope seth is doing well. Thiffanie shids Hi to him. We are going to be going to the nih on March...
Becky, Thanks for all you are doing to increase awareness in your area! I am glad that Tiffanie is doing so well, and I wish that you could feel better. Have...
Karen, Â Thanks so much.I hear yeah one having the vist during the school year. Tiffanie is in the 8th grade it is so hard for her to get cought up in school...
Hello to everybody! I want to give you an update on Jan and ask for your help again: Jan is on 6 mg Anakinra at the moment. We need to inject him twice. Since...
Dear Daniela, I am so glad to hear that a higher and morefrequent dose is helping your son to have less suffering on a daily basis. It sounds like he is still...
Hi Daniela, Sorry Jan is still getting sick. Actually I have wanted to sound in too as my son has had some recent issues. We may be dealing with an allergic...
Hello to all,    We are home fanaly after staying an extra 5 days because Tiffanie got an headache after her spinal tap. She is doing so well he bone are...
Becky, Seth is on the Canakinumab, the new drug that is a monoclonal antibody drug against IL-1, and has been on it since August 2008. He is in the study...
Glad that you are back home Becky, good job that the NIH pays for the flights, I had to stay longer the very first time I took Alex and the flight was not paid...
Wow, 4 shots a day? Kieran is now on 2. What a trooper Alex is! Actually, they are all troopers. Good to hear from you Kate. Hope you are well. ... From:...
Hi Michele, He's only on two of the anakinra, but then he takes two for heparin,( he has 5 stents holding up his IVC and SVC) He's been on the heparin for...
To All, I don't usually reply to these messages but I do read them all. I am Lee Parker's mom. He is on the Canakinumab study at NIH. He is doing well on...
To all,  Thanks so much everyone for writting back. My eyes are still red but ihavelost a lot of my vision from not hetting treated soon. also i have lost a...
Hi all- I have been reading but haven't had much time -things are quite good with Jack at present-fingers crossed it stays like this!! He has never been home...
Hello again. It took a bit to answer you but my partner had an accident at work and had to stay in hospital. "devil doesn`t sleep" says a German idiom ... ...
Hi Karen I wonder if I can have more brochures. We will be at the NIH from the 19th for a week. Perhaps I can collect them there? I would also like to call...
Joan, Sorry that my earlier message on Monday never posted to you! I am not sure what happened, but I thought i hit the right button. I can send you as many...
Hello everyone,  I hope everyone had a nice Easter. I have been reading all the e-mails but have been dealing with Zach battling kidney stones. Poor guy,...
Jan, I am sorry to hear that Zach is battling kidney stones-how miserable! I hope he gets better soon. Do they think it is related to NOMID or calcium intake...
Hello all, I am sorry to hear about Zach's kidney stones as well. I hear that they are extremely painful and our kids suffer enough as it is. Johnny (my...
Just wanted to say sorry to hear about Zach's kidney stones- thinking of him and you all... Daniella how are things with your little man? hope he has had some...
... especially to Zach! I feel miserable when I think about all the pain he has already been through! Get better soon! Jan had his vaccination (pneumococcal,...
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