March 29

Emily's situation is very serious. The CAT scan shows new blood vessel growth and a great deal of pressure inside her cerrebellum. The cerrebellum sits on top of her brain stem and it appears as though the cerrebellum is applying a great deal of pressure on her brain stem. This would explain why her breathing, heart rate, and blood pressures have been so erratic. The brain stem controls those functions and the pressure from the swelling cerrebellum is disrupting function. Yesterday we sat down with neuro-surgery, neuro-oncology, the ICU team to discuss options. Because the growths are moving at such a high rate of speed, chemo is out. Radiation is also out because it causes more swelling. Neurosurgery discussed a very dangerous and painful surgery that would extend Emily's life by reducing the pressure but because the scans show new blood vessel growth it would be extremely dangerous and because of that fact, surgery is out.

Like I said, Emily's situation is very serious. This is very difficult for me to write but our plan, after much prayer and thought, is to make Emily as comfortable as possible while we still have her. She is the absolute definition of courage. She is our hero. The last year has been a gift from God. Emily was only given a couple of weeks and since that time she has smiled, ALOT, felt good, rolled around, gone to the dentist(Katie will love that I added that one) , and made a significant impact on so many of us. She is letting us know its time. God is letting us know its time.

As I write this Katie is giving her a bath and putting her in some really cute outfit. Last night the ICU team completely rearranged our room so that it could fit two adult beds so that the three of us could sleep together. I can't even express in words how great that was. So tonight we will be in the same bed and tomorrow we will go up to our second home, 9 North with family and friends and take her breathing tube out. Its time for Emily to be at peace. We thank you for your unbelievable support and love. We ask that you please take a moment today and say a prayer for our Emily.

Comments

[Danielle]

Thinking of your gorgeous Emily and praying for you all.

There are no other words....

[DD]

I won't say a prayer just today but every day for Emily and her family. She is the epitome of Grace here on Earth, while as parents you know the true meaning of Love.

[Cheryl]

You are in my thoughts.

[Michele]

Danielle is right. There are no words.

I pray for peace for you guys.

[Heather]

You all are so amazing and courageous, even though your hearts are breaking. I will be praying hard for all of you. God bless you all.

[Jeanette]

You are all in my thoughts

[alison ryan]

I'll be praying for Emily, and for you as well.

I'm so so sorry.

[Dr. Maureen]

We will pray for you all. I'm so sorry for your heartbreak.

[Pippi]

You have given your daughter so, so much, you amaze me. I wish I could do more, but since I can't I will keep you and your family in my thoughts.

[The Perro Family]

All of my kids have had Mr. Mandel, & consider him their favorite teacher. Our hearts are breaking for this family.

[Carrie]

You will all be in my prayers.

[Arwen]

We will continue to pray for Emily and for you. May God bless you.

[Amanda Brown]

We have all been witness to the amazing little girl she is, and the wonderful parents you have been in the face of such trials. My heart is with you all today.

[Amy]

Your family continues to be in my thoughts and prayers.

[Elizabeth]

May your time with her be peaceful and full of love.

[Sleepynita]

I am happy for the time you have remaining with your daughter and I pray that everything ends in peace.

Bless you two. Emily is a very lucky girl to have such a great family.

[Erica]

I cannot fathom the pain and sadness that you must feel. I believe that God always has a plan, even when it's hard to see His logic. I believe that Emily's life and her short time on this earth where a vital part of God's plan for us. I'm so glad that she got you as a family and that you got her as a daughter.

I've never met you or Emily, but I can assure you that you've all touched my life in a profound way and Emily's legacy of strength and courage will live on through those lives she's touched.

[Amy]

God bless you all...

[halloweenlover]

I'll be saying many many prayers for all of you, and I echo Elizabeth above in hoping that your time together is peaceful and full of love.

[Megan]

I just stumbled upon your blog and just wanted you to know I was thinking about. I can't even imagine what you guys are all going through. Your little Emily and your family are in my prayers...

[Jen]

words are so inadequate and seem so little.
I'm so very sorry bless you and your beautiful little Emily.

please know we are thinking of you and praying for you all.

[The Foote Family]

Mr Mandell was possibly the greatest teacher i have ever had and one of the nicest people i have ever met. it is unbealivablethe something so tragic could happen to such an awesome person. our prayers and thoughts are with you always.

[Melissa]

I don't have words...all my thoughts are with you.

[Susan]

Sending you much love from us in Pa. You are all in our thoughts and prayers.

[Sarah]

Unfortunately, for slightly different circumstances, I have been in your situation. Four years later, we still think of our little girl every day, as I am sure you and so many of us who have been following your story will. We received a card from a friend, and the note he wrote has remained with me, so I'll share it with you: God is crying with you. I pray for peace for the three of you and your extended family and friends.