Hello everyone,
The first thing I want to do this morning is to apologize for staying silent since July even though everybody who answered me at that time was so kind and so helpful . I 'll tell you the reason why I did not update.
When my daughter was diagnosed in January something like the heaven fell on our heads. She was on the point to leave home to go in Switzerland to study hospitality management, and she had to cancel and go to the ER, and so on...After Prednisone which worked very well, the counts dropped again when the drug stopped, whe tried Plaquenil and Prednisone, no results, and she began with Promacta, just before a travel in the US which was very important for her, something like a light after hard days. Promacta was good for her, as I told in July, since after one week with a 25mg pill each other day, she had a count of 50K. After an other week with a 25mg pill every day she got 115k, and suffered of side effects as insomnia. The hemo said to have one 25mg each other day again, and she went to the US, had a marvellous journey in Connecticut and Maine, in a very nice family, and was so happy ...We had done everything in order: prednisone in case, as Rob said, prescriptions translated in english, for the Customs in the airport, special stockings for the plane, and so on...No problem, and my daughter is still on Promacta, the same 25mg pill each other day since she began the drug, and has now monthly CBC. The last count was 79K. She has a new school in Paris, and learns fashion management, she worked as a marketing assistant in September. She was rather bad when she stopped the low doses of prednisone she had in August (2mg, then 1mg...) but now she is off Prednisone ( she stopped in the beginning of September) she feels rather fine.
So, why not to update? Because I was feeling in a kind of hole from September. When she was in the Usa I was afraid of breaking good news she gave us if I updated, (quite stupid I know, quite stupid!) and when she was back I felt suddenly very exhausted. Words about her and her disease, could not litteraly go from my throat and could not fly from my keyboard to the US, to you. I feel very sorry for that, and I want to apologize deeply. I think I was a little depressed. I struggled for my daughter since the beginning in Juanuary, I helped her a lot, as a mother has to do, and I felt so guilty because of a flu shot I wanted her to have before leaving home last winter...When I realised I was so down, I went to a psychiatrist to find help, it Worked, and now i 'm a kind of strong mom again. I hope at least!
So, I feel especially sorry for not updating as everybody on Pdsa is so helpful and gives me strength. To tell the truth, I read everything on the site, the posts, the stories, the medical articles...The whole summer, every day on the site. It took time for me because my english is not good, but I learned a lot.
The best I learned was about how to be strong with the disease.
My daughter is young, 19, she does not speak a lot about her ITP, she tries to go her way, she is right. As her mother, it's sometimes difficult, but I fell better, and I must thank you for that.
I don't know what will happen in the future, it's hard, but I deal with it, and everyday I awake with the thought she will recover. I can't help thinking like that.
Sometimes, I was sad, and I thought about you Sandi, ( I don't know you, sure, but you were in my mind) and I had a kind of voice, your voice, in my head: "Take it step by step, you will deal with that..." and it was so helpful; the same for you, Melinda, you, Rob, and other people.
I feel sorry for what is happening to you Sandi, and I can't complain for me anymore.
I'm very grateful for the time you spend with us when your own life is so hard for now. I hope your son's wedding will be great and you'll be fine for that wonderful day.
I'll give you news time by time. The hemo wanted to try Rituxan but I 'm not very found of that drug. My daughter was born in Vietnam, (we adopted her when she was a five months baby.) It seems she does not need to have too much Promacta because of her asian ascendant. I read articles about that in the summer. For me, it does not worth to change the drug...In France Promacta is often given when Rituxan failed, but hemo can hear what patients say. For the time being, we'll see for the future! But you can think in a different way...
PDSA is very helpful. I found the PDSA.org because we have not such a site in french. Thank you very much for wellcoming everybody. Sorry once again, really, for the silence.
From France, my best thoughts. Lau.
And sorry for the mistakes of course...
