We apologize for not updating in so long, but honestly there really isn't any excuse as to why we haven't update, so we want even try to make up one. I have been updating facebook often and as often as I canr, so please make sure you are following on facebook, because you will get your most up to date updates there. http://www.facebook.com/emilysjourney
Since the last update Emily has had her 3rd and 4th round of the nifurtimox trial that she is currently on. She has handled it pretty well, however the last round (round 3) when her counts dropped, she stopped eating and we got down to 25 lbs. Daddy had taken Emily to clinic and I had gotten a call at work from Daddy that they wanted to admit her, which neither of us would allow because we knew we could get her to eat. Hearing that they wanted to admit Emily really upset Doug, knowing how much it upsets Emily, he hates to see Emily so update and it just breaks his heart.,So, since that time we have been working with her a lot about eating and making sure she is eating foods with a lot of calories. Thankfully Emily was not admitted after a few days of us working with her and she was able to gain a pound, so they didn't admit her. We also stopped the nifurtimox during that time and that really seemed to help as well. During this time, we also transferred all clinical trial holder from Levine's to Dr. Sholler. Dr. Sholler requested this mainly because when we emailed we would never hear back from anyone at Levine's and would hear from Dr. Sholler. This really doesn't make any change for us, so it works for us.
After that Emily really has been doing well overall. She took Round 4 of chemo and nifurtimox really well and we haven't had any major issues. However Dad and I have been working a lot more with her about eating this round and it really has helped, the weight has really maintained. Dad and I are really proud of Emily because she has been doing whatever we tell her and really trying to do what we need her to.
This past week there have been so many children who have passed from this horrible disease and with each one, it just gets harder and harder to realize how horrible this disease really is.We are thankful that Emily continues to be happy and handle treatment. We have noticed though as she has gotten older the questions are coming more and more. I have to give it to Daddy though because he handles the questions very well, and can answer them quickly with answers for her to understand. Sometimes for me it takes more a little more time to think about it. Emily is really excited about starting kindergarden this year. We really debated about doing homeschool, but Emily doesn't want homeschool, she wants to go to school when her counts are good and we want her to be happy. So we talked to the education teacher at the hospital and she is all ready and once they found out whose Emily's teacher is, they will be able to work with the school and she will actually be able to go and talk to the kids in her classroom and tell them about Emily and have them understand what she is going through and then why she won't be in clatss all the time. Emily wants to go to school with Jessie! Now Daddy and I will be worried about her and I know Daddy's biggest concern as well as mine is that the kids that are not in her class or just around the school will pick on Emily for either not having any hair or being underweight. The first time Emily comes home crying that she doesn't want to go back to school because the kids are picking on her, we will pull her out. She is going through enough not to have to worry the kids picking on her.
Scans are coming up, no date has been confirmed and the week that they are scheduled keeps getting changed, so hopefully we will have a confirmation tomorrow from Dr. Sholler. While we are not stressed out yet, as the time gets closer Dad and I always have scanxiety.This is just something that will probably never change. The positive is that Emily's HMA & VMA continue to stay low, so our hope is that this means that the spots are continuing to go away.
I want to continue to say thanks to all of the wonderful supporters of Emily's who continue to think of her, pray for her, love her and send her encouragement, cards, gifts and love, it means so much. We always try to thank people directly as soon as Emily receives things in the mail, but I also like to tell you all how much it really means to Emily and the rest of us. Your kindness reaches a long way and we can't tell you how much it really means to us.
I will try to do better about updating you all, and keep you better informed about what is going on with Emily. Like I said I constantly update Facebook, but I will try to do better and reach the rest of you here that don't facebook.
Thank you again!