So within the next 24 hours Steve and I have to make some very difficult decisions. Dr. F says Alex is in the six week window before his tumors take over and he can no longer breathe. Steve and I have three routes to choose from: terminal care (preventing and/or easing symptoms without surgery); surgeries i.e. gastronomy, tracheotomy, and resection (all could kill Alex and/or leave him on a ventilator) or experimental therapy. In a few minutes we meet with the experimental team, then neurosurgery then Dr. F again.
Right now, surgery is off my list. I really don't have any clue how I am standing right now. I just know that I'll be damned if I'm going to let Alex's days be filled with sadness and tears. He is doing very well actually and it is such a tease to have to hear the doctors talk then see his beautiful smile.
Keep praying please, miracles can happen.
God Bless,
G
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15 comments:
I know you must still be reeling from the experience this weekend, making these decisions that much more difficult. I know that whatever path you choose will be the right one for Alex, because the choices you make will be out of love, as you have done his whole life.
~Annie
You are all in our prayers, for strength, healing and peace. As a mother, I pray for you especially Gwen, as I know too well of these agonizing decisions. You have more strength than you know; there are reserves that have not even surfaced yet.
Julie O'Connell
Kyle O'Connell Foundation
You will make the right decision, and miracles and prayers will help you get there. Have you also thought of second opinions. Our love and prayers are with you.
Susan
You guys are great parents. There are no wrong answers here, no wrong path to take. Do what your heart tells you.
Many more people than leave comments are with you in spirit. Hang in there.
Merri Ann
The report of the weekend's escapades has had me reeling. I don't know how I would have reacted (aside from terrified). Thank goodness th Alex hadn't just been left to sleep the night away after receiving his injection!
Today's entry, though leaves me absolutely empty inside.
I know that you and Steve will do whatever is best for Alex, but I have to say that I ache for you now like I've never felt for anyone. The dichotomy of Alex's apparent improvements and the doctors' prognosis is just plain unfair.
I have a couple of pictures of Mattie and Alex playing at Universal that come up on the screensaver every half hour or so. It hurts every time I see that glowing smile and the sparkle in those eyes...
It's just all so, SO unfair!
Praying all the time,
(Gads, but wouldn't that miracle just be he best?)
-Scott
There is no right decision. Miracles can happen and Dean Malena and I (and my family from Spain) will be praying for Alex, ZG, Steve and specially you.
Please let us know if you or your family need anything.
Love
Elena
You are in my thoughts and prayers every moment. As many folks have already said here, there is no wrong decision. Listen to your heart. You are Alex's best advocate and you know what is best for him.
- Karlyn
I really have no words, but will keep the prayers coming your way. Thanks for keeping us updated, as I think of you guys often.
~Kerry
I love your closing comment...miracles can still happen!!! We believe this with all our hearts...and will continue to believe and speak nothing else until it is fulfilled. We are believing for total healing...nothing missing...nothing lacking...nothing broken.
Whatever your decision...God is still the "Great Physician".
Wish we were there to support you "hands on"...but in the meantime we are being obedient to Evans' request to pray morning, noon and night. You are the best parents I know...and you will continue to be amazed at your endurance and strength.
Love....Dianne and Paul
You all are constantly in our thoughts and prayers as you travel this challenging road. Your strength, wisdom and courage never cease to amaze us. I know that you will, as always, choose FOR Alex. I only hope you can feel the encircling arms of the many people who's hearts are with you, Steve, Zoe and Alex. Scott's Mom.
Oh Gwen and Steve,
We love you all so much. This whole thing is so utterly senseless. You are such strong wonderful parents. We are here for you. Call us for anything.
Crissy, Ben, Esther, and Wylie
There is not a second that goes by when I am not picturing Alex smile! Your are in my thoughts and prayers.
With Love,
Ms. Alicia and family
Praying to what ever deity will listen.
you are in my thoughts.
hugs from a stranger
Shantell
Our thoughts are with you as always. We have followed your journey (regrettably in the background) with hope and agony. Based on the strength you've all shown thus far, I'm confident that what ever decisions you make will be right for Alex.
A giant hug from Veda, Riley, Matt and Chantell.
My dear, dear sister,
w love you so much and our hearts aches for you, Steve, zoe and my mom. Take strength from the prayers of your family and friends.
I will be there soon to hold you, and cry with you, and laugh with you and pray with you.
God bless,
Christina, Ari, Reilly, and Addison
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