Emilia Dameshek
Emilia Dameshek · Wednesday, June 1, 2016
We will remember her

We will never find words remotely adequate to convey our gratitude for the love, support and outpouring of shared grief in the past 2 years and 11 months while Emilia fought cancer and last week when she died. The depth of sadness and anticipatory grief we have felt pales in comparison to the loss we are now mourning. Having over 400 people come to see us the West Shore Country Club and then seeing a ballroom filled with over 800 friends, family, teachers, co-workers and even some strangers, was overwhelming but truly helped us get through the night and the days since. Emilia’s friends...

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Emilia Dameshek · Saturday, May 21, 2016
Details on services

Here are the details for the services next week. Wednesday, May 25 visitation at the West Shore Country Club, 100 Brentwater Road Camp Hill from 4-8 pm with a memorial service on Thursday, May 26 at 6 pm at the Radisson Hotel Harrisburg, which is actually located in Camp Hill at 1150 Camp Hill Bypass, Camp Hill, PA 17011. Immediately prior to the service on Thursday we will be seeing visitors from 4-6 pm at the hotel. For al the kids, please come as you are. If you want to wear an Emilia or THON t-shirt, that's okay! Please consider donations to The Four Diamonds Fund, 90 Hope Drive,...

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Emilia Dameshek · Thursday, May 19, 2016

Emilia died peacefully at 5:40 pm tonight. Our hearts are broken but she is no longer suffering. We are grateful for so much love and support and will let you know about the services when we know the details. Love to all.

  Emilia Dameshek
Emilia Dameshek · Thursday, May 19, 2016

Emilia died peacefully at 5:40 pm tonight. Our hearts are broken but she is no longer suffering. We are grateful for so much love and support and will let you know about the services when we know the details. Love to all.

  Emilia Dameshek
Emilia Dameshek · Tuesday, May 17, 2016
Day 74

We haven’t posted an update since Mother’s day because nothing has changed over the past 10 days.Emilia continues to fight gvhd and after trying multiple drugs, treatments and therapies she has not gotten better and her body is beginning to shut down.She hasn’t responded to treatment the way the doctors had hoped and now we shift our focus on making sure she stays as comfortable as possible as we approach her final days or weeks of life.There are no words to describe the heartache and despair we feel as we sit beside her during this time but we know that the doctors have done all...

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Emilia Dameshek · Friday, May 6, 2016
Happy Mother's day

Today is nine weeks or 63 days in the hospital for Emilia. Still waiting for her numbers to make some progress but they haven't gotten worse so we continue to hold steady.

The eye doctors, including the cornea specialist, came by yesterday and said the amniotic membrane has dissolved but they will leave the ring in place in her eye b/c it can help prevent the growth of scar tissue. He was very pleased with the healing so far but her vision will continue to be blurry because of the ointments and drops she gets every two hours throughout the day as well as the swelling she has.

We don't...

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Emilia Dameshek · Tuesday, May 3, 2016
60 days in the hospital and mulch

A HUGE thank you to our wonderful friend and neighbor who had mulch delivered and spread on the hill that was weeded by equally wonderful friends and teachers in the community. This hill has NEVER looked this good and we really appreciate that we can focus on Max during the time we are away from the hospital and not worry about yard work.

Today marks the third dose of the third immune suppressant that we are still waiting to see work and shut down the GVHD. There has been no improvement over the past week in her gut, liver or eyes but this drug can take 2-3 cycles to start working and we...

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Emilia Dameshek · Tuesday, April 26, 2016
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...

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Emilia Dameshek · Wednesday, April 20, 2016
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...

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  Emilia Dameshek
Emilia Dameshek · Sunday, April 17, 2016
April 17, doing taxes at the hospital

We are still waiting for the day where Emilia is stable and there is nothing new to report. Yesterday Emilia's blood pressure started to trend high and they started a patch and an iv medicine to correct that. It isn't astronomically high but it is high for a 12 year old who has kidney damage and is something to closely monitor. She did not get dialysis today but did well yesterday and some of her blood chemistry numbers improved because of it so that was good news. The immune suppression drug she is on, Tacrolimus, has just reached therapeutic levels so we are hoping to see some...

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