From Michelle - update on Danica

Hi everyone - sorry for not keeping in touch, but I really do not like this site very much. The old one was so much easier. I just stayed logged on to the old one, but this one, I have to log in every time and it drives me crazy.

Pauline - I hpe that Caitlin feels better and that the Rituxan does the trick for her.

Ali- sorry to hear that Dougie is not feeling very well, and not dealing very well with this either.

Donna - I have also been following your posts - even tough I do not respond (sometimes I don't log in, and because of that, I can't leave a response.

Danica had IVIg #27 last Thursday. I have been waiting for one of the nurses from Pediatric Outpatients to call. She was going to talk to our hemo today about starting Danica on the Decadron. Perhaps she did not see him today, or maybe she sent me an email at work, instead of at home. I will check tomorrow.

Does anyone have any experience with the Decadron? I was wondering how long we would try it. IF there is no improvement after the first round, would he try another one in another month? If so, how long do you think that he will continue to try it before giving up?

Oh, I should not be so negative. Perhaps the Decadron WILL work, and she will keep a healthy count. If it does not work, then we will try the Rituxan next.

Michelle (mom to Danica)

Hi Michelle,

Its lovely to hear from you - I've missed you! I hated the site too, and I still don't think it is as handy as the old one, but I am getting used to it. The thing that most annoys me too is that it doesn't keep you signed in, and then unless you sign out, it keeps you logged in pointlessly for hours - I don't get it. Why can't it just remember you like the old one???

Poor Danica, I don't know how either of you are coping with the whole thing. 27 goes at IVIG - honestly I really don't know how you cope. And Danica must get the same variation in counts with IVIG that is annoying me so much with Dougie at the moment - I find the constant up and down nearly as stressful as permanent downs. I need to stop complaining and feeling down about Dougie's count which is only intermittently low.......I think I need to shut up! He's got a sore throat today, so maybe thats whats causing this latest lot of symptoms,

Anyway, I really hope that the Decadron works for Danica without too many side effects and QUICKLY. If it doesn't (fingers and everything else crossed that it does though), I've been reading up on rituxan and whilst I think it looks a bit scary, it does seem to work in producing remissions in a number of cases. My sister has a friend who is a doctor in Spain and he says that is their preferred treatment.

Good luck anyway

Ali

Michelle

I've just noticed this in someone elses thread - when you sign in now there is a remember me box like there was on the old site.

Ali

Danica starts the Decadron on Monday -- IV for four days

Really, really hope it works for her Michelle.

Good Luck, Ali

I hope Decadron does the trick for Danica! I can't imagine going through 27 IVIGs! (Mostly because we got our bill about a month ago and it was $22,000 for one IVIG!!) For that price, I am almost glad it doesn't work for her! I think Rituximab is also expensive, but I think all 4 will be cheaper than that one IVIG (at least I hope). The positive part is that we will meet our maximum out of pocket and Caitlin's future treatments (if she has anymore) should be covered entirely by insurance through the end of August,then it starts all over again Sept. 1st.

I also hope that Danica doesn't get sick from all those IVIG's. Caitlin really reacted horribly last time and was sick for 4 days. With Rituximab, she was sicker during the infusion, but the after effects were better for her. She did great during yesterday's infusion, but I just got an email after I got to work that Caitlin is running another fever so I'm debating whether to go home or not. Here's to very minimum or NO side effects for Danica for Decadron!!

Okay - number 1 -- I am happy now that I don't have to go through all those screens everytime I want to log in. FINALLY - I can just go to my favorites, and go straight to General Discussion for parents.

Number 2 -- thanks for you words of encouragement!!! It really helps.

Number 3 --- WOW -- BIG PRICE for Caitlins IVIg. Multiply that by the 27 times that Danica has had it -- astromonical. Crazy eh?

Michelle

AND I have tried, but I still cannot figure out how to get my information at the bottom of all my posts. Help

Good luck with the decadron stuff tomorrow. Fingers and everything else crossed for you, and hoping it is not too horrible for Danica

Ali

Just wanted to say good luck tomorrow with the decadron. Hope everything goes okay.

Karen
mom to Jordan

Thanks guys - I hope things go well also.

Karen - how are things with Jordan???

Michelle,

Jordan has been feeling okay. She was treated with IVIG on Feb 18th because she had a dance competition Feb 21 and she has taken so much pred in the past. She did fine with it, just a slight headache. Thank goodness it still raises counts for her. Her count was 53 last Monday so we'll see where she is at today. Was tired and a bit cranky this morning on the way to school, I don't know. The doctor visit was discouraging last Thursday, as Jordan is now officially labeled chronic. They would like to try Rituxan but with all her activities coming up, we will probably wait until June to do it. I still have hope she can get better on her own but she is really wanting to do more activities so I am leaning towards using it. Her doctors feel it won't go away on its own now that its been almost a year.
Thanks for asking about Jordan, hope everything goes smoothly for Danica today. Good luck!

Karen
mom to Jordan