Just got off the phone with Heidi to get an update on Drew while he is down at St. Judes………..the tumor is active again. The Dr. indicated that we have used the laser enough in the past three years that we now need to move on to an alternative treatment. He wants to put a radioactive plaque on Drew next Friday. We would fly down to St. Judes on Thursday, plaque would be place Friday and it would stay on through the following Tuesday. We would come home either Tuesday or Wednesday night. After that, we’ll have to see what side effects pop up. We have discussed this option in the past and while we never wanted to go down this path we are knew it could happen. Prior to completely committing to this direction we are planning to meet with Dr. Neglia at the U of M to discuss this and the inner arterial chemo (this would require a trip to NY for a 2nd opinion). Chances are that we won’t do the chemo because the risks are greater if it doesn’t work but we want to make sure we have all our pro’s and con’s out on the table. Drew is in good hands at St. Jude, just bad news on his 4th b-day.
Thanks for your continued thoughts and support as we head down a new road/journey.
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8 comments:
Happy Birthday Drew!!!! We love you!!!
We are here for you and your family and will do whatever you need to be sure you can get past this bump in the road. Drew you are a fighter and I know you will keep fighting.
We love you all.
Tom, Holly, Jake, Brett
Heidi I remember so very well when you were in track a poem that meant so much to you. There was something about it that made me keep it in a safe place. Here are a few verses from it.
THE RACE
As I Start to hang my head
in front of failure's face,
My downward fall is broken
By a memory of a RACE
A childs face, my young boy
how I remember well
Excitement sure, but also fear
It wasn't hard to tell
With borrowed will, get up it said
you haven't lost at all,
For winning is no more than this,
TO RISE EACH TIME YOU FALL.
And now when things seem dark and hard and diffcult to face
The memories of Drews little face
Helps you in your race
For all of life is like that race
with ups and downs and all
You guys will soon win your race
Cause you rise each time you fall.
Share this with Tony. You guys win in all you do, always. Why the road is long is hard to understand. Hopefully this is the end of the road.
I know it is hard to believe in the power of prayer. But there are many many prayer lines going on right now for your family. It will be good news. I am sure of it.You have good doctors that like to WIN. What a team.
We love you all
Mom and Dad
I read this a few days ago and had to take a day or two before I resonded. I am so sorry to hear the news and wonder why the test seems to be so horrific and endless for you? I have been continually impressed by the strength and courage you continue to exhibit as individuals and as a family, and just hope that this will soon be over for all of you. Thinking of you more than you know. Carol G.
So sorry to hear about that tumor growth. Max's tumor has been dead since last March after the radiation plaque. He has an EUA at the U of M on Feb 11th, and we go back to Philly in May. If you have any questions about the plaque please let me know, it didn't seem as bad as we expected and Max did awesome with it. The good thing about the plaque is that it pretty much puts the radiation directly on the tumor and doesn't affect other parts of his eye or body.
Happy Birthday Drew!!
Take Care and continue to be strong!!
Jessica Sloan
The poem really says it all. You all are fighters and an inspiration to us all. We love you and are pulling for you!!!!
Drew - You are in our prayers. You are the toughest little boy we know. We are thinking of you daily.
Carol, Keith Cindy Bob Kelly Robert Bobby and Stephanie
Hugs and prayers for Drew Bug!
Love,
Nori
GOOD LUCK and don't worry. Jack will have a good time. When he wants his Mom and Dad I will just sprinkle a little PIXIE DUST on him and hug him and hold him tight. Make sure you let him know that there is extra pixie dust for those moments. He will have a great time with Brett and Jake, too. I am sure you will call and he can call you guys to. If you update the blog we can log on and read Jack messages also. He might like that. Your time now needs to be with Drew. It is important to get him well and then maybe there will be less trips and you can do more as a family.
Love Mom and Dad
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