Eden was released from the Hospital on Sunday about 5pm. As we were walking out Aunt CeCe called to see if we wanted to meet her at the Halloween Store over by our house. FYI... Halloween is by far Eden's favorite holiday.(thanks aunt Cathy for the wonderful Halloween seek and finds you sent) So we walked around the store and looked at all the spooky, gross, disgusting things (Eden with a smile from ear to ear) and then headed to grab her Rx from the drug store for the new antibiotic and I don't know why i should be surprised but no one could fill it.. So they said they would get it in on Monday for us but we still needed 2 doses before then so off i went back to the hospital where they were able to give me enough to get through. They are all just so wonderful there!
Eden got up this morning and went to school.....WOOOHOOO and even better she stayed all day and didn't have to make one trip to the nurse. She is just so amazing! In any other world i don't know that i could have felt comfortable sending her today but outside of Rourke or myself there is no one i trust more then Mrs. Russell, Miss. Diddle, Mrs. Zorn and Nurse Mary. They all love Eden and would never let anything happen to her. The kids in her class are all just so wonderful and so many parents have contacted us just to let us know they are there. What a wonderful community.
SO, Here is what i learned for sure from Dr. Yeager. He has only seen a few cases of VRE but every one has responded to the antibiotic Eden is on very well and completely recovered from it. By that, i mean they have all gotten better from the infection and the VRE was gone when tested. She will be tested a few times after she is done with the meds to be sure its gone. She has improved 100% since being on the new meds. This shouldn't effect treatment options at all which i am so thankful for. So far we have not heard back about her bone marrow biopsy and she will be scheduled for another MiBG in a few weeks. She has been off treatment since we came back from Philly, so almost 2 and 1/2 months. As you know her last MiBG scan showed great improvement but this Cancer can be very sneaky and fast. Based on her last scans Dr. Yeager does not consider what we could see to be "measurable disease" and if we still see the same on the next scan she may not be eligible for the antibody study here or in NY. It's kinda a catch 22. But its not hard to know what we wish for even if it means she cant do the Antibody study. If that is the case we will do the ABT-751 in Philly which is the Chemo pill.
While writing this update i had to take a break because Eden came down to have one of her strange conversations with me.....lol She asked if i remembered just a few days ago when it was still painful for her to walk because of the sore in her private area and i said yes. She said "well look at me now Mom, I am all better! Mom, you know the hospital tries very hard to make kids better and sometimes they do and sometimes they don't. They were trying to make Ian and Jaret and Christi better, Right? They didn't want them to die, right?" I can only imagine that she needed reassurance that she was ok. Sometimes its easy to forget how little she really is. She handles everything so well and acts like such an adult all the time that i think we forget sometimes how fragile she really is? The other day in the hospital we were having a conversation about nothing really and she said "when I get my port out" ................................................. I heard nothing else. I unlike her have the disadvantage of knowing she will probably have her port in for the rest of her life and it breaks my heart.
I do feel truly blessed to be her Mother and i wouldn't trade that for anything in the world and sometimes i can almost trick myself into forgetting how serious things are for a few minutes and it just takes the smallest thing to jolt me back to reality. This is what our life is and I accept that but i wish so bad that she didn't have to!