More Thoughts After 5 Months Without Sophie

I thought of something that I wanted to include on my post yesterday.  We finally talked to the doctor at St. Jude who is the head of the pathology/biopsy study that we donated Sophie's tumor to after she died.  (A wonderful foundation called Tyler's Treehouse funded this study; see http://www.tylerstreehouse.org/about.asp for more information about another DIPG warrior.

Marc talked to Dr. Broniser and he confirmed it was indeed a high grade glioma, very aggressive and the fast growing kind; and in good condition too (whatever that means).

  

We have heard mixed sentiments about our decision to donate Sophie's tumor.  Believe me, it was not an easy one.  First because we did not have the paperwork ready and we were under a time crunch, and also because on the night she died, the last thing I wanted to do was ship her body off to a hospital without me.  Something kept telling me that donating the tumor was what we should do, and in my heart I knew that Sophie would really want to help someone else if she could.  My parents accompanied the hearse down to Akron where the biopsy was performed and said that the doctor there (who came it at 4:00am to do the surgery free of charge) was wonderful.

  

On another note, I had asked the question to Sophie's doctor at St. Jude while we were there for radiation if Sophie's organs would be eligible for donation in the event of her death.  At the time, it was hard for me to think of her dying, but still I wanted to know.  I was disappointed to hear that because her body had been exposed to chemo and radiation her body could not be used for anything.   On the night she died, I remembered the conversation we had had, and knew that since we couldn't help another child by donating Sophie's organs, we should probably donate the tumor in an effort to help someone else.

  

I would like to call Dr. Broniser again at St. Jude to ask him more specific questions...if I can get the courage up.  You know the information that it provides us won't help us now, but there are still things that I still would like to learn about that stupid tumor.

 

After Sophie's diagnosis, we thought that maybe Sophie's tumor was slow growing because the symptoms had a longer period of onset.  It all makes sense now though, because she only survived 7 months; which would be indicative of a fast growing tumor.  It makes me think that the answer to our question, "Has she had it since birth?" is "No."

I also wanted to post this story from Tamara Ekis (Grace's Mom).  I was so touched when she told me this at the Soiree and I wanted to post these rainbow pictures as well.  Below are Tamara's words...

On February 6, we were having odd weather in Pittsburgh.  It was raining, snowing, and the sun was shining all at once.  As I looked out of our back windows, I saw a beautiful, full rainbow over the new houses behind us.  I ran to the couch to get Grace so that I could take her out on the deck to see it.  Brian said to get the camera and he would get Grace.  So, Brian picked her up and we all went out.  When we got out on the deck, there was not one rainbow, but two.  Two beautiful, perfect rainbows.  The colors were so vibrant, it was incredible. 

 

Unfortunately, I had not realized that the SD card was still in the computer, and not the camera.  By the time I realized and got the card out of the computer, the second rainbow had faded and one stood alone.  We took pictures of it, feeling a bit sad to have missed the two.

 

The kids were so excited to see the rainbows and, even though I marveled at their beauty, I instantly knew that Grace would only be with us a short while longer.  I knew in my heart that the two rainbows were Maria and Sophie, coming to get Grace and take her to heaven with them.  You see, I had been very worried about Grace going to heaven without me being there to hold her hand, and distraught about the fact that she wouldn't know anyone.   As the warm tears streamed down my face, I told Brian that I knew it was them.  They would be coming back very soon.

 

Additionally, a neighbor had called to tell us that there looked to be a rainbow coming right out from Grace's bedroom window and Susan (our good friend you met at the Soiree) told us that even though she was on her deck a mere two houses away, she did not see the second rainbow. 

 

We saw a second rainbow....we saw the signs of Sophie and Maria.....