Spencer Shores's Journal
20 Months NED
Written Sep 15, 2012 1:18pm
First and foremost, Spencer is great! He is 20 months NED, in the 3rd grade and is doing good! His orbit is still healing so no talk of a prosthetic yet; however we are getting close. The docs are not worried about how long the process is taking because he has had such a large amount of radiation to the area (Proton and seeds after the exenteration). I can't believe next month will mark the 2 year mark since that surgery. Crazy!
Ok...so here comes the bad news. But don't worry, it is not about us. It is about this shitty world that involves cancer! Sue Guenther, a dear friend that found us through CaringBridge passed away a few days ago from cancer. One of our favorite child life specialist is in hospice from a relapse with her breast cancer. And...the first person/family we met in the hospital, Jette (i think he was 8 or so) who had Ewing's in his ribs has relapsed after 4 years of NED!!! WTF? I HATE THIS!!!
I am celebrating the fact that Spencer is alive and well but the fear is overwhelming at the moment!
However, the good side of this is being able to be there for others. I recently had a mom reach out to me because her 3 year old son has been dx with spindle-cell sarcoma in his left eye and has to have the whole orbit removed like Spencer. So I am fortunate to have walked the path and give hope and strength to others when they need it. But what I would do not to have ever been thrown into this world...it sucks!!! And with that said, I really need to update "my story" and pictures so when people to read our story, they have hope to read about.
All I can say is please...enjoy life, love your family and friends and love yourself! Be thankful for what you do have. Enjoy your children, love them and hold them like there is no tomorrow...because unfortunately there are no guarantees in life!!!
Written May 29, 2012 11:28am
Wow, I cannot believe how long it has been since we have provided an update on here. And yes, it is safe to assume that no news is good news!!!
Spencer had scans a few weeks ago and there has been no change since the last scan. So...that is great news! The changes that we have seen and that have been noticed by the radiologist they believe are normal post-op changes and nothing to be concerned about. Of course, anytime you read anything that doesn't say "normal" your heart skips a beat. However, with such a huge surgery I have finally accepted that this is our "new normal". So...Spencer is 17 months NED...YAHOOOOOOO!!!
Spencer just finished up 2nd grade and will be starting the 3rd grade in the Fall. It is so hard to believe, they grow up so quickly! He is doing great, loving school, being a cub scout and playing with his friends. He is just a typical, normal 8 year old...which I am so grateful for.
Spencer's eye is still healing. I think we all thought it would be healed by now but we have not been the best about airing it out. But, now that it is summer, our goal is to get that patch off and let it heal. His orbit looks great and is healing but I think with some more air time, it will be completely healed by the end of the year. Our surgeon in NYC said no rush, it will heal when it does and then we will move on to the next step. I love him and his laid back perspective!!!
Anyway, all is good here in sunny and warm AZ!!! And most importantly, the love of my life is HEALED!!! I truly KNOW that...finally!
Thank you all for your continued love, prayers and support!
Written Jan 28, 2012 12:53pm
Quick note. All is well!
There are a few changes, but nothing to worry about now. I am getting all of this 3rd hand so I don't know all the details (or I stopped listening after I heard the "all good" status).
Thanks for checking on us.