Emilia Dameshek · Apr 20, 2016 at 12:52 pm
Wednesday- day 47 in the hospital

It's been a busy week here at the hospital and there isn't much news to report. Emilia is about the same as she was last week. LIVER Her bilirubin has continued to climb each day to 28.4 yesterday but actually went down one point today. This is the first time it has stopped climbing since she started showing signs of GVHD 3 weeks ago when it was 1.8 and we didn't want to see it go up. It's been a challenge getting her pain under control but Halidol seems to be helping her and they are going to adjust some of the other meds she is taking to get a balance that keeps her comfortable while not completely zonking her out. KIDNEYS She has had dialysis several times and it has helped with the chemical balances/electrolytes in her blood and will continue until her kidneys improve. Her blood pressure, which had been on the high side, is now a little high but much closer to the normal range.EYES The amniotic membrane that was surgically inserted into her eyes came out on the right and dissolved on the left so I had to come in today to sign a consent for them to insert amniotic membrane contact lenses. The doctor who did the surgery said he is early in his career and I am not sure where he came from but has only done about 6 of the surgeries. The surgery is used a lot to treat firefighters who are injured or those w/ chemical burns. Apparently it is not a very common practice in the BMT world and we are VERY lucky that someone at Hershey was familiar with it and willing to do it. The placement of the contact lenses is more common but in this case, being at a university medical center really was a bonus for us. Our transplant team has never had a patient need this level of eye care so we are hopeful that this intervention will give us a chance at some normal eye health for Emilia and reduce the damage to her corneas from the GVHD sloughing off the top layer of the eye. This morning she was able to see shapes and could tell it was us but the contact lense is occluding her vision and she can't see at all for now. SKIN The GVHD of her skin looks good, she is very tan since it started as a sunburn type rash and then darkens. GI The gut GVHD remains unchanged so we are waiting for that to get better but know it can take a lot of time. Waiting seems to be the name of the game at this point, waiting for the gut to heal, waiting for the kidneys to start doing their job again, waiting for the liver to turn around. Our team started a third line agent to shut down the GVHD yesterday since the steroids and immune suppression haven't really touched it. They do not make the decision lightly b/c further immune suppression means a greater risk of infection. As they describe it, dormant viruses can "pop off" and fungal infections can become life threatening. Emilia did not have any fungal infections during transplant and continues to be negative for viruses in the blood, except for one, HHV6 but it responded to the anti-viral for the adenovirus, which is also now gone. She was already at risk but infection now becomes an even larger concern with this third agent. All in all, stable for now with no improvement but no progression either so we will just have to be patient and hope this third drug does the trick. Thanks for checking in.

  Emilia Dameshek
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Holly Harl · April 25, 2016

We check in on Emilia regularly. Love, hugs, prayers, and good thoughts sent your way always! Dave and Holly Dimmett

Holly Harl's
Pam Ardell · April 22, 2016

Hi Emilia, just stopping by to see if there were any new updates, and wanted to let you know that you have been so top of mind for me lately. Im waiting to see pictures of that amazing smile of yours again soon! Hang in there beautiful girl!! ❤️

Pam Ardell's
Erin Stone · April 21, 2016

We are all pulling for you Emilia! Miss your smiling face and bubbly personality! Hope you are feeling more comfortable soon. Thanks for all the updates Natalie & Mitchell.

Erin Stone's
Nikki Shadle · April 21, 2016

Thinking about you & your family all the time and sending Positive thoughts and energy your way!

Nikki Shadle's
Jennifer Daly · April 21, 2016

As I read through your posts I still can always hear a ray of hope and pushing forward. Keep the strength going. Hopefully all the love and support surrounding you is helping a little. Come on Emilia- keep fighting girl.

Jennifer Daly's
Judy Blust · April 20, 2016

Thanks for the update. I think about you all the time and keep hoping for some good progression. You are all so patient! Sending hugs and love! Judy Blust

Judy Blust's
Kim Cole · April 20, 2016

Thank you for the comprehensive update. It is a lot to process. You are an absolutely wonder and the next best thing to a doctor. You are always in my thoughts and prayers.

Kim Cole's
Alicia Bruno · April 20, 2016

Sending positive thoughts and energy your way- keeping Emilia in my prayers.

Alicia Bruno's
Deborah Grogan · April 20, 2016

Lifting prayers for Emilia and family. God bless you all.

Deborah Grogan's
Dona Beshore · April 20, 2016

Hope & prayers for a quick healing to begin for all!

Dona Beshore's
Ellen Bialecki · April 20, 2016

Thanks for the update! Sending love to you all!

Ellen Bialecki's
Heather Scott · April 20, 2016

Emilia is an amazingly brave girl. She's going through so much, please let her know we think about her everyday and she's in our prayers. If there's anything we can do or if you need anything please let me know! Hugs!!!!

Heather Scott's
Rill Ferrre · April 20, 2016

Hi. A dear friend who knows Emilia asked if I would pray for her and shared her info with me. I am sending lots of prayers and hugs for all of you and praying for the day when you all can be a family again in your home!!! I pray for Emilia to keep fighting each day and that she will soon be pain free!! Rill

Rill Ferrre's
Luanne Shearer · April 20, 2016

Thinking about that girl every day - how patient you all have to learn to be with this process. Love to all of you!

Luanne Shearer's
Scarlett Lastoskie · April 20, 2016

Emilia and family, Sending you love and encouragement! Praying for healing the relief from the pain. Big hugs for all of you!

Scarlett Lastoskie's
Kim McLain · April 20, 2016

We are all pulling for you, Emilia! <3

Kim McLain's