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Saturday, August 25, 2012

A Little Update

Well its been a long week and while I have wanted to update a few times this week, I just haven't. Lots of changes have headed our way and we still have more to come, but we will adjust just as we have to everything else.

Emily overall has had a good week, she is still eating really well but still losing weight (back to 25.9 lbs) and handling it all really well. As expected her counts are zero this past week (or to be exact .2), which means she is neutrapenic, so homebound we have been. This weekend we were going to go school supplies shopping for the girls, but with Emily's counts being low we have to stay away from the stores. We hope to get it done once her counts come back up, so hopefully later next week. Emily had clinic twice this week, and both times she needed platelets since they have been low. Thankfully she hasn't needed blood since the week during chemo, but have a feeling it will be sometime this coming week she may need blood.Monday she also received her shot in her leg for neulasta. Thursday she had to be accessed twice though because the first time, she was crying it was hurting waiting for her counts to come back, so Elaine (Emily's nurse) had to deaccess her and we waited for counts to come back. When they came back, she had to be accessed again since she needed platelets again. Emily has clinic on Monday again for counts check.

Friday the sitter called me at work to let me know that Emily was complaining that her toes were hurting. She tried a warm tubby and some tylenol, but still later was complaining that her toes were hurting and she was crying. Daddy went out and got her footbath with bubbles and warmer with some epsom salt. We did try that last night, and she said it helped a little. She woke up a couple times from sleep complaining her toes were hurt. Spoke with Dr. Sholler and she recommended stopping the nifurtimox for 2 days, so she will start that back up on Monday if her toes are not hurting.

We did finally hear from the scheduler yesterday afternoon and Emily will have a complete re-evaluation when we go back. Emily is scheduled to be back in Michigan the from September 5th - 7th with MIBG fused with CT scan, Bone Marrow, injection, meeting with Sholler and hearing test (we haven't had one of those in a year). So I started working on getting a flight on Thursday since I had known we were going to be there Wednesday and Thursday, just didn't have the rest of the information. We love Wings of Mercy and they have been amazing to us, but I did hear back from Sharon from WOM and she told me because the week we need to be in Michigan is a holiday week, she still hasn't heard from anyone who was willing to take the flight. Not exactly what I wanted to hear, so she asked me to start looking for a 2nd option. So, Monday I am going to check with a few others, but we are thinking if we can't find a flight, we may have to drive Not exactly what we want to do right now, with gas going up and I even noticed yesterday it had gone up about 10 cent over night, so we are really hopeful in finding a flight. Gas in Michigan is also much higher as well, so we are hopeful. I also need to call Monday and get the Renucci House set up. We will keep you guys up to date, on how things are going with that though.

Also last week the Henrico Citizen ran an news update about Fairy Godmother Project and about Emily. I will post it on www.emilyhubbel.com.

We will keep you guys updated on how Emily is doing and flight to Michigan. Remember to always hug and love your kids.

1 comment:

  1. Hi Emily,
    I am so sorry to hear your toes hurt! I am praying for you dear girl. Praying and praying.