Day 3 New Trial

Last night we went to Doug's Aunt Karen's for dinner who lives in South Carolina about 20 minutes from where we are staying. This was the first time meeting Aunt Karen and Uncle Jimmy for us and we had a goodt night. It was a very nice and relaxing night and with great company and great food. Emily also really enjoyed making cupcakes with Karen and and enjoyed it. It was nice to be with family, but also nice for Emily. Thank you!

Today was Day 3 of the new trial, and so far no major problems have really been noted. Yesterday was the first day of taking the Nifirtimox for a full day (3 times a day). We have to crush this pill and put it in juice and she takes it by syringe. The medicine doesn't completely dissolve in the juice so she is eating a lot of the crushed medicine, but doesn't seem to mind.

We were leaving the hospital today and she almost seemed like she was "high" and Doug watched her head move all around. He asked her if she was ok, and she said she was, I think she was more afraid if she said any problems she would have to go back in today to the clinic, but I told her we didn't. Just a little bit ago, she said that she felt funny in her head, and we are thinking probably dizzy. Tremors and off balance are some of the common side effects from the nifirtimox. The nifirtimox is reversible when stopped for 24 hours and whatever the side effects were should go away, so we just have to keep a close watch and keep notes of what is happening. After the "funny feeling" in her head she did eat some lunch and felt better but was tired and fell asleep a little while ago.

We did see Dr. Kaplan today in passing and he felt that if Emily wasn't having any side effects yet from the chemo, that we probably won't see any. I hope it stays that way, watching a 4 year old throwing up, is an image that isn't an image you want to have in your head. We haven't had to use the peppermint oils, but we have them readily available for when we need to use them if she has any tummy issues or anything.

We really didn't tell Emily that we were starting her on chemo again, but just explained that she was going to have to get some medicine because all the yuckies are not gone yet. Today another little girl was in the clinic for a brain tumor, and this girl was such a sweet girl and just very well mannered, but told Emily she was getting chemo today and Emily said yeah I was getting my chemo too. It sucks that she has to have chemo and it sucks even more that she has to endure this. Like we said before we have been dragging feet with this and really not wanting to do it, but in our hearts we felt it was the best thing for her right now.

We still have 2 more days of clinc with chemo both days and tomorrow she has PK's (pharmacokinetics) where they do additional blood draws at certain times and we are there longer than we want to be. I also wanted to check to see if they will do a CBC just since they will be drawing blood anyway to see where things are and to see how her counts are going to be for the weekend.

We did learn that Round 1 of this trial has to be done through Levine's Childrens Hospital,unless she has any fevers we will do that wherever we may be at the present time (either home or Levines) but when the next 21 days start (Round 2) we can actually do the chemo at our home hospital and then come back after Round 2 to do scans. This is great for all of us. We still need to make the decision if the scans will be either at Levine's or with Sholler, Dr. Kaplan would like them here, but we would like them with Sholler to keep the scans in one place and know the difference between one scan and another. After Round 2 we will have disease re-evaluation and decide if this clinical trial is still appropriate for Emily.

Just trying to keep everyone up on how Emily is doing so far with the new treatment. We hope that it continues to stay well with no sickness or any of that, but we will continue to charge the battle line and hope that we get to that line and see "NED".

Continue to send lots of love and thoughts for Emily as she continues to go through this! Thank you to everyone !!!