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  Emilia Dameshek
Emilia Dameshek · Jun 1, 2016 at 2:21 pm
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 and family who were part of the service made us laugh through the tears and we are honored that so many people joined us in remembering her short life. We would especially like to thank our friends who organized all the details of such a beautiful service and visitation night and the effort they put forth for us so that we were not burdened at such a sorrowful time. Flowers, programs, snacks, the locations, pictures, slide shows, guest books, food at our house and much, much more. They thought of everything and we are so grateful that they did that for us.

Now that the ceremony is over and we have returned to work and school, we are counting on our memories and the countless photos and videos as well as the stories from her friends, to keep us going. Some of our happiest memories with Emilia took place after she was diagnosed with cancer; going to Hawaii, being at the beach in Delaware, dancing with Gym Club at THON and just hanging out with people she loved. The video tribute Emilia’s friends made for the service was the perfect mix of all those memories and we loved how hard we were laughing at all their memories, and especially at Max. If he can still be silly and goofy and smile at this time, so can we.

Cousin Dave wondered why we let our kids on golf carts and what kind of trouble they were getting into here in Pennsylvania and it’s funny that cancer is why we rented that golf cart. Last October we went camping with 7 families to celebrate Emilia’s 100 days since her bone marrow transplant. Reaching the 100 day mark is a big milestone for transplant patients and we wanted to mark the occasion but because she was immune suppressed it wasn’t easy thinking of a way to celebrate where she would still be safe from germs but also have fun. Camping fit the bill and the bonus was that there was a Halloween theme to the weekend with trick or treating, hay rides and a golf cart that we rented for the entire weekend. You can’t imagine the squeals of laughter and the fun those kids had taking turns piling into the golf cart and making endless loops through the campground looking at the decorations, being chased by a dog and later being sought out as speedsters by the campground caretakers. Parents and the one licensed teenager took turns driving them around on a beautiful fall weekend and on those days, Emilia was just one of the kids laughing and making memories with her friends but also being celebrated for the long months of treatment she endured for a second time and looking forward to a bright future free from cancer. We will never get to see what the future may have held for her but we will treasure every memory we have. Some people say that cancer changes their lives in a way that they would never undo what they endured, they become glad for it and wouldn’t change it. I realize now that only people who get to live say that. If we could go back in time we would change it all but we can’t so we will be grateful that so many were with us along the way, helping us through the long days and nights of treatment, the long years we all suffered with her and the days where she was healthy and we made new, happy memories. In Judaism when someone dies people say, “ may her memory be a blessing”. Emilia’s memory will be that and so much more to us. As heartbroken as we are, we will try to smile through the tears and remember all the good she was and brought out in people and how she united so many. Thank you for loving our girl with us and grieving her loss at our sides. Mitchell, Natalie and Max

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  Emilia Dameshek
Emilia Dameshek · May 21, 2016 at 6:20 am
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, A120, P.O. Box 852, Hershey, PA 17033 or Chemowarrior Foundation, 311 Spring Hill Lane, Lebanon, PA 17042 or oneline at www.fourdiamonds.org and www.chemowarrior.org

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  Emilia Dameshek
Emilia Dameshek · May 19, 2016 at 9:10 pm

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.

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  Emilia Dameshek
Emilia Dameshek · May 19, 2016 at 9:09 pm

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.

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  Emilia Dameshek
Emilia Dameshek · May 17, 2016 at 6:33 pm
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 they can for her as she has fought over and over and over.We have no regrets and she has had the best care possible by a group of people who truly love her and our family.Our team has tried everything they could and after fighting cancer three times in less than three years, it has become too much for her young body. They have advised us on what to say to Emilia and Max and how to make this transition as smooth as possible.Today we had some really tough conversations with them both and they understand what is happening.Child Life specialists and palliative care along with our oncology team at the hospital will be at our side to help us all. We are not sure how much time remains with her but when the time comes we will need to be very sensitive to Max and all the kids who love her so much.Our school district will make counselors available to kids who need to talk or cry and we will make sure any updates happen after school when her friends are home with their parents. We will not be accepting visitors at the hospital at this time and hope all her friends can recall the last time they saw her and remember her as she was, happy and healthier. You are welcome to share your favorite memory of Emilia in the comments below.Feel free to text us pictures you have of her and though we may not respond, please know that we do read every email, text and comment and will never be able to express our gratitude to every single person who has reached out to us over the years. We are so loved and supported and you have all helped us along the way.Xoxo Mitchell and Natalie

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  Emilia Dameshek
Emilia Dameshek · May 6, 2016 at 10:21 am
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 have any plans for Mother's day with our crazy schedule but will celebrate at a future date when Emilia can join us. Happy Mother's day to our moms, Jill and Sue, who are at the hospital several days every week to take care of Emilia so we can both go to work and take care of Max. We would not be able to endure this schedule without them! xoxo Natalie and Mitchell

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  Emilia Dameshek
Emilia Dameshek · May 3, 2016 at 12:23 pm
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 hope it is just ready to go off like a firecracker and get to town in there. A new and very promising drug in the treatment of liver and skin GVHD was started a few days ago, Ruxolitinib, and we are also hoping that can calm down the liver stuff. Her bilirubin is just one number in the liver panel but the one that is the highest and that hasn't gone down yet, spiking to 34.3 yesterday and then back to 29.7 today (normal is .8 to 1.3). The downward numbers are only exciting if they continue for at least a week, to show a real trend, something that hasn't occurred yet. This new medicine was discussed quite a bit at a conference our doctors attended recently and is oral. I didn't know this before but there are many great meds that only exist in oral form. Tylenol and many pain relievers are good examples. Because Emilia's gut (GI tract) is so inflamed and sick, anything taken orally may not be absorbed and immediately expelled by the intestines. Since her gut was showing some signs of slow down in the output last week, they decided it was a good time to try this new med and HOPE it gets absorbed. It is unfortunate that so many drugs are only available in an oral form b/c it makes them unusable for people like Emilia who have to let their GI system rest and heal. So far she is tolerating the pill well and it doesn't seem to aggravating the system so we are hopeful it will start to drive the liver numbers down.

She still has the amniotic membrane contact lenses in place and we expect them to remain intact through this week. Once dissolved, they have to be removed b/c only the lense degrades and a ring stays in place over the surface of the eye, then ophthalmology will decide if they should put in a second set or if enough healing has occurred and she can be free of them. There is a fair amount of inflammation of the conjunctiva on the white of the eye so she keeps her eyes shut most of the time, even when she is awake and talking to us.

For all of Emilia's classmates and friends, please let them know that she spends most of the day resting and is still not able to see b/c of the special contacts she has in. I think some of the kids were wondering why she never texted them back or responded to Snapchat. We do read her cards and texts so feel free to send a card to our house or to the hospital and I will read it to her and she can look at it in the future. We do worry about how scary this must be for her classmates who can't see her or talk to her and aren't sure what is going on at the hospital. She takes lots of naps, listens to some music or cooking shows through the tv and chats with us a little bit. The nurses are so good with her and truly enjoy taking care of her. Hoping for some news in the next week or so. Thanks for checking in.


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  Emilia Dameshek
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.

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  Emilia Dameshek
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.

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  Emilia Dameshek
Emilia Dameshek · Apr 17, 2016 at 3:39 pm
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 progress in terms of the GVHD over the next week. The cyclosporine never reached the proper levels and the side effects of burning pain in the hands and feet helped the decision to switch to this other drug. Pain and discomfort is a big issue for Emilia and we aren't sure if the Tacrolimus is causing a similar side effect in her but we had a very busy morning trying to get her pain under control. Eventually they gave her more Ativan, Ketamine and Halidol and she finally got some relief and is sleeping now. The Ketamine has a side effect of causing the patient to pick at things, almost like a tick. Unfortunately, Emilia's eyes are bandaged, swollen and scabbed over and we are trying to keep her hands away from her eyes. She tends to take the pulse oxygen monitor off as it is taped to her finger but we are trying to give her things to occupy her hands. She can't really open her eyes b/c they are crusted over and swollen but she will open them when the docs round on her and when the nurses put in ointment and drops several times a day. She hasn't complained much about her eyes and we are trying to keep them protected with plastic goggles that surgeons wear here at the hospital. The doctors cautioned us that the severity of the GVHD she had and the loss of the top layer of the eye may cause long term eye issues for her but we will not know the extent of it for some time. The plan for this week is dialysis M/W/F and hoping to see the GVHD in the gut and liver improve. If there isn't much progress she will likely start another immune suppressant at the risk of dormant viruses reactivating or her developing other infections. It is always a balance or risk/reward and infection continues to be a major concern. We are really hoping this is the week things start to turn around a little bit because the past two weeks have been really hard for us all, especially her.

I was able to enjoy the great weather we had yesterday with Max and his friend at mini-golf and the batting cages on City Island but today I am trying to finish my taxes and cursing the fact that you have to file state and local taxes in PA and working in Philadelphia a few weeks a year makes it even more cumbersome. It was so much easier in IL! Thanks for checking in.

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