Danica had IVIg on Monday. She starts the third, and last round of Decadron on this Monday coming up.
Instead of four days, we are going to give it for 8 days, on alternate days, to see if the side effects are lessened. I am thinking that she will not get a count as high as 160 with doing it only every 2 days, as it will fall during the 24 hours that she does not take it. Oh well, whatever, I guess we will see what happens. The nurses at Ped OP think that maybe it will go higher, but I seriously doubt it. That last two times clearly showed tht the count goes up during the four days that she is on the Decadron, then crashes within 2 - 3 days. That is certainly not worth the horrible side effects.
ANYWAY - we saw her ped on Monday after her IVIg. I told him that her hemo suggested the splenectomy as he does not want to put her on Rituximab (he said if it was his daughter, he would not give it), and he certainly does not want to try her on the other drugs that have just come to Canada.
I told her ped that I am just not comfortable with removing a perfectly healthy spleen, only to find out in a couple that maybe we should have not done it. I told him of a ped hemo in Edmonton that we would like her to see. He had no problem with it. We did get that "second" opinion in Saskatoon in December, and we got the same answers that we had here, which we were happy with - two hematologists said the same things. Our ped agreed that it is reasonable to get a third opinion before making the decision to remove the spleen.
I am really hoping that when we go it will be more that just a 20 minute visit. It is a "childrens" hospital, and perhaps he will decide to do a little more testing, or refer her to someone else (I still have a funny feeling that we need to do some immunology testing). Also, she has not had a period yet and I am wondering two things is she going to get it, and if she does, could that perhaps be the turning point into correcting the platelet problem? I know that sounds weird, but who knows, maybe something will change when she hits puberty. ????
I faxed the information to the peds office on Tuesday, so hopefully they will fax the request for referral soon.
I guess even if he says the same thing - a trip to Edmonton is a good thing. We should have some fun!!
Our hemo has been around for a while, and the one we saw in Saskatoon, has a lot of experience (if you get my drift), but this one in Edmonton is quite young - perhaps he has a different outlook on things.
I actually spoke to him a few times via email last fall. I had sent an email to Edmonton asking for some information, and the girl forwarded by email to this hematologist. He email me back with some questions. Was I impressed -- you bet!! Of course, he could not make any recommendations, or give any advice, but certainly was willing to see Danica if needed. Since then, I have been wanting to see him, so I am very happy that we will be going.
If it is all in vain, and we end up with the same suggestions, then I guess that is what we will do.
Keeping my fingers crossed!!!
Michelle
Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594
