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.

  Emilia Dameshek
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Susie Pratt · April 17, 2016

We are sending love and warm spring thoughts from Chicago. Thank you for always giving us the full picture...the hopeful and the hard parts. You are the best. xoxox

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Janice Ragonese · April 17, 2016

Love you Natalie! You and Mitchell amaze me! So wonderful how you are giving Max all of the normality that you can. The slo-mo video at the batting cages is cool! It must be so difficult to see Emilia in such pain and going through all that she has. I think of her each day and keep your beautiful family in my thoughts & my heart. Hugs

Janice Ragonese's
Rob Jensen · April 17, 2016

Our thoughts and prayers are with you guys.

Rob Jensen's
Peg Strohecker · April 17, 2016

So sorry to hear Emilia is going through such a rough time. Saying extra prayers for her and all of you.

Peg Strohecker's
Margie Rosenberg · April 17, 2016

Here come the ((((HUGS)))), kisses XXXXXXX, love, and healing thoughts your way!!! May this week be the one of positive healing and relief from pain!! We love you, The Rosenbergs

Margie Rosenberg's
Jennifer Daly · April 17, 2016

Sending love and positivity

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Myra Gallardo · April 17, 2016

I am praying for Emilia that she gets some relief so that she can be comfortable! Thinking and praying for ALL of you!

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Judy Blust · April 17, 2016

Sending you sunshine and happy thoughts! And, of course, prayers

Judy Blust's
Ellen Bialecki · April 17, 2016

Hoping and praying things start to turn around this week and Emilia isn't in so much pain and discomfort. We are thinking of you all and sending our love!

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Kim Cole · April 17, 2016

I caught up on your last several posts and the words that kept going through my mind were 'unbelievably...fill in the black'. As in, unbelievably difficult, unbelievably unfair, unbelievably complex. Emilia has been through so much as had her entire family. I read your "fill in the blank" on what we need. I'd like to bring some healthy freezer meals over to your house. I will assemble them this week and will check in via text.

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Mitchell Dameshek · April 17, 2016

Healthy, freezer meals - like hot wings! Haha. Just kidding...sort of.

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candy sanderson · April 17, 2016

Yes it has been beautiful this week, no c/o here, I pray Emilia starts feeling better from the change in treatment, Maybe some cool soaks would make her eyes feel better, soften up the crusts.,and bother her less, she's going through alot for a 12 y.o. And be nice to yourself, it takes alot to be everything to a sick child too, keep posting

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