Emilia Dameshek · Apr 26, 2016 at 11:21 am
Tuesday, Day 53 in-patient and day +36 post DLI

The past week has been groundhog day most days but today is the first day we are starting to see a little bit of improvement in Emilia. After being weaned from one of the meds, Ketamine, and tweaking some other meds, her pain has been controlled pretty well and she has been able to relax and sleep more. Her numbers all look about the same but she is needing platelets less often, is more alert and told me today that she is hungry. The fact that she is hungry is a good sign that her gut is starting to heal. She told the doctors she wants to go home but it will probably be at least a month before that happens. Her bilirubin went down 3 days in a row landing at 24.3 but then ticked back up and remains plateaued with no downward trend yet at 26.7. Dialysis continues 3 times a week and they hope to go longer between sessions as her kidney function improves. Ophthalmology sees her every day and the amniotic (Prokera) contact lenses remain intact to protect and aid in the healing of her eyes. Emilia can make out shapes and knows if it is me or Mitchell but really can't see much b/c the lenses make everything cloudy and blurry. Yesterday she started getting an insulin drip b/c her glucose levels have been rising each day and were in the low 300s yesterday. Steroid induced diabetes is a side effect of a drug and is expected to be temporary. Hourly finger pricks took place yesterday to monitor the glucose but they are now down to every 4 hours. She has one to one nurse to patient care and remains hooked up to cardiac, oxygen saturation and respiration monitors as well as frequent blood pressure checks. Physical therapy came by today and got her out of bed and into a chair for the first time in about 10 days. Just moving to a chair is exhausting and she is trying to sleep now while getting her second dose of infliximab(remicade), the third immune suppression drug that was started last week. This drug takes about 2-3 doses, which are once weekly, to really show that it's working so we are hoping to see some marked signs of the gvhd shutting down in the next week or so.

Over the past week we have had several groups of people come by and do yard work for us. First it was a teacher and former principal, then some friends of friends who are all in the district and last night a bunch of our Helping Hands 4 Emilia crew came by to finish the job. I wish I had taken pictures of the 30 bags or so of yard waste that was generated by this massive effort. Shrubs that hadn't been trimmed in the past three years are shaped up and our yard has a great facelift. Thank you to everyone who helped including quite a few people we had never even met! And continued thanks to my step-brother, Kevin, who has been mowing our grass for three years.

The photo here is from the crew that came on Sunday. One of the families, not pictured, was on Max's baseball team and their son, Christopher was celebrating a birthday Sunday so an extra special thanks to him for helping us out on his birthday.

  Emilia Dameshek
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Judy Blust · April 28, 2016

You are so blessed to have such amazing friends! Hope Emilia has a good week!

Judy Blust's
Lynne Shine · April 26, 2016

So happy to hear good things!! Hearing Emilia is hungry makes me happy! Your friends are amazing...love to meet them someday! Xo

Lynne Shine's
Dona Beshore · April 26, 2016

Keep up the good fight. You are strong & will conquer this. Love & prayers to you & family!

Dona Beshore's
Margie Rosenberg · April 26, 2016

Wow! What wonderful support you have throughout your family, friends, neighborhood, and beyond. I wish there was something I could do and am available if you need it. In the meantime, my thoughts and prayers are with all of you. Emilia, you are amazing and I'm so excited that you were able to get out of bed and move into a chair, even if it was a short time. It must have felt so phenomenal to change your space. Keep up the amazing strength you have and know we're all pulling for you in every way!!! Much love, Margie and The Rosenbergs

Margie Rosenberg's
Deborah Grogan · April 26, 2016

God Bless Emilia and her family. What a brave young girl. I will keep all of you in my prayers.

Deborah Grogan's
Laurie Dameshek · April 26, 2016

So glad to see some positive movement. This thing sucks! You are never far from our thoughts and always in our prayers. I am so happy that many people continue to show you their love and support. Wish we could do more from here, but in the meantime, know that you have so many people pulling for all of you. Love you! Laurie, Phil, Alex and Jon-Michael

Laurie Dameshek's
Lara Kirts · April 26, 2016

So glad for the news. Small steps add up!

Lara Kirts'
Kim McLain · April 26, 2016

Woohoo, Emilia! Keep on fighting hard, girl!!!

Kim McLain's
Megan Jones · April 26, 2016

So happy to see an improvement! Keep it up, Emilia!

Megan Jones'